In May 2011, I made another excursion to New Hampshire. I told only one friend of the intended trip, just to get input from a respected opinion. I could sense something of a lecture on his lips, but he settled on saying only, "you be careful."
I was careful about everything but time. Even though I had left in early morning, I had dawdled too long and the angle of the setting sun also worked against me. I got on the highway home in the wrong direction. Darkness fell fast, and I was not quite certain of my wrong turn until it was too late. I’d driven only in areas I knew well enough to know where I was going without the use of landmarks that I could not quite see. The first time I got off the highway to turn around, I ended up getting back on in the wrong direction again.
I got off the highway and grabbed a bite at a burger joint. I had tried being subtle by reading the receipt to get my location, but I couldn’t see the receipt either. All forms of vision were getting slowly but steadily worse. I had to ask where I was, always a humbling experience. I was feeling very young and vulnerable and that I had seriously overstepped my bounds.
I remembered the way to the highway from the burger joint. When I got to the big sign that gave directions, I pulled the jeep off the road and got out of the car to read the street sign I otherwise could not see, just to make sure I headed in the right direction home.
I’d gone home to Providence from Nashua, New Hampshire via Worcester, Massachusetts.
It was my last excursion. The experience disheartened me. The third setback let loose within a couple weeks, leaving me less capable even after that setback mostly faded. Even shorter neighborhood trips seemed unworthy of the stress and effort. Even in the summer I was accepting rides to bowling because I did not feel confident driving home in the dark. I simply let go of more and more of my self sufficiency, moreso after my eyes began the Autumn 2011 slow fade without another obvious setback.
For the most part, I had stopped driving by September, 2011.
For the most part...
Saturday, December 31, 2011
Friday, December 30, 2011
Plowing Ahead
The Jeep Wrangler I currently own is the first car that ever elicited remarks from friends "This is you." I can understand the analogy. It’s a rugged but stunted vehicle. It’s got one of those attention-getting mufflers, so it is rather loud and obnoxious. It’s gray, which on a Wrangler means it’s multiple shades of gray, simple looking yet complex at the same time. It’s propped up on oversize tires, so it can run through pretty much anything. And it’s a hard top model.
When buying the vehicle, I specifically wanted something that could plow snow. I’d had enough with relying on others to take care of the properties and wanted a vehicle that could accommodate my self sufficiency issues.
After the first setback in November 2010, I stopped driving again. No one took my keys away, nor did anyone have to. I stopped on my own because driving presented a clear and present danger to myself and others.
I was off road again for a number of weeks, but making short trips on my own in December 2010. I already related the trip that made me stop driving entirely at night in "Midnight Ride." (December, 2011) After even the first setback, my eyes could no longer process dim lighting well enough for me to feel safe driving at night.
I could still do OK in daytime, depending on angle of the sun and contrasting areas of bright light and deep shade.
I was surprised to see how well I could plow snow at night. That specific driving task proved easier at night than during the day due to sun glare. At night, the white blankets that covered Rhode Island on a weekly basis for six weeks probed a uniform cover of white that my eyes could easily accommodate. This does not mean I took extra jobs; I stuck only to my property obligations and one neighbor. I dropped the regular gigs outside my neighborhood and took my time. Nighttime plowing also proved easier because I had to contend with fewer cars on the road. The fact that I intimately know the areas where I worked also made the plowing a surprisingly trouble free task, so easy a blind guy can do it.
Unfortunately, the stress and exertion of so much plowing that year took its toll. While not scientifically proven, I am confident that the heavy workload triggered the second setback. I limped home from what luckily proved the last storm of the year with a stringy gray cloud further obscuring my vision. That took me off the road for several more weeks until things recovered enough for me to regain reasonable certainty that I would not endanger others.
I’d been cooped up again and wanted a taste of those old freedoms and my all-important self-sufficiency.
I felt ready for another excursion.
When buying the vehicle, I specifically wanted something that could plow snow. I’d had enough with relying on others to take care of the properties and wanted a vehicle that could accommodate my self sufficiency issues.
After the first setback in November 2010, I stopped driving again. No one took my keys away, nor did anyone have to. I stopped on my own because driving presented a clear and present danger to myself and others.
I was off road again for a number of weeks, but making short trips on my own in December 2010. I already related the trip that made me stop driving entirely at night in "Midnight Ride." (December, 2011) After even the first setback, my eyes could no longer process dim lighting well enough for me to feel safe driving at night.
I could still do OK in daytime, depending on angle of the sun and contrasting areas of bright light and deep shade.
I was surprised to see how well I could plow snow at night. That specific driving task proved easier at night than during the day due to sun glare. At night, the white blankets that covered Rhode Island on a weekly basis for six weeks probed a uniform cover of white that my eyes could easily accommodate. This does not mean I took extra jobs; I stuck only to my property obligations and one neighbor. I dropped the regular gigs outside my neighborhood and took my time. Nighttime plowing also proved easier because I had to contend with fewer cars on the road. The fact that I intimately know the areas where I worked also made the plowing a surprisingly trouble free task, so easy a blind guy can do it.
Unfortunately, the stress and exertion of so much plowing that year took its toll. While not scientifically proven, I am confident that the heavy workload triggered the second setback. I limped home from what luckily proved the last storm of the year with a stringy gray cloud further obscuring my vision. That took me off the road for several more weeks until things recovered enough for me to regain reasonable certainty that I would not endanger others.
I’d been cooped up again and wanted a taste of those old freedoms and my all-important self-sufficiency.
I felt ready for another excursion.
Thursday, December 29, 2011
Give Me the Keys, and I'll Drive You Crazy
How does a blind guy drive?
The glib answer: very carefully.
The current true answer is that I don’t. Or I don’t drive much or often, anyway The most recent excursion was really when I shouldn’t’ve. This phase of "elderly adolescence" that I find myself in overcame me a couple weeks ago, a few days before the last setback.
The entire field of vision is blurred and grayed out by the setbacks releases. As each floater absorbed into the eye, it left a greater haze behind and has proven more of a barrier to the pupil. The entire effect and disability is hard to describe because there’s multiple problems in the eye.
The pupil problem leaves me unable to quickly adjust between changes in brightness. Highbeams flashing in my eyes at night needs more than a momentary readjustment; it can blind me for minutes. N the daytime, the light seems to stay in the eye.
It is as if I am constantly looking through fog. The further away something is, the more heavily obscured it seems. When the sun is shining, it is like early morning fog, aglow with glare.
I did not have those problems when I resumed driving in late Spring 2010. The main problem then was the field of vision. I was used to being blind in one eye, but the PRP procedure had diminished the left eye’s field of vision to a sphere at the edges of the cataract lense. I adjusted to that largely by avoiding left had turns or street crossing at uncontrolled intersections. This focused me on just watching for traffic from the left rather than having to jerk my head back and forth in looking for multiple directions of approaching traffic and timing each side. Yes, I dud circle some block to make three right turns for the end accomplishment of the left turn I needed.
Highway driving was actually quite easy. I’d get in a non-merge lane and stay there until before my exit. I could see any distance I was looking at. So highway travel was actually quite comfortable. I had made a run to Nashua, New Hampshire on Columbus Day 2010. That had been a great day, the first to harken back to the pre-hemorrhage filled with 65 mph freedom accompanied by some favorite CDs in the deck.
Up through the release of the first retina hemorrhage (as opposed to the full blood vitreous hemorrhage triggered by a dose of Cialis) the only real "danger" I posed as a blind driver was a reduced ability to prevent accidents that would be caused by other people’s carelessness.
This changed after the first setback, just weeks after that soul-soothing trip to New Hampshire.
The glib answer: very carefully.
The current true answer is that I don’t. Or I don’t drive much or often, anyway The most recent excursion was really when I shouldn’t’ve. This phase of "elderly adolescence" that I find myself in overcame me a couple weeks ago, a few days before the last setback.
The entire field of vision is blurred and grayed out by the setbacks releases. As each floater absorbed into the eye, it left a greater haze behind and has proven more of a barrier to the pupil. The entire effect and disability is hard to describe because there’s multiple problems in the eye.
The pupil problem leaves me unable to quickly adjust between changes in brightness. Highbeams flashing in my eyes at night needs more than a momentary readjustment; it can blind me for minutes. N the daytime, the light seems to stay in the eye.
It is as if I am constantly looking through fog. The further away something is, the more heavily obscured it seems. When the sun is shining, it is like early morning fog, aglow with glare.
I did not have those problems when I resumed driving in late Spring 2010. The main problem then was the field of vision. I was used to being blind in one eye, but the PRP procedure had diminished the left eye’s field of vision to a sphere at the edges of the cataract lense. I adjusted to that largely by avoiding left had turns or street crossing at uncontrolled intersections. This focused me on just watching for traffic from the left rather than having to jerk my head back and forth in looking for multiple directions of approaching traffic and timing each side. Yes, I dud circle some block to make three right turns for the end accomplishment of the left turn I needed.
Highway driving was actually quite easy. I’d get in a non-merge lane and stay there until before my exit. I could see any distance I was looking at. So highway travel was actually quite comfortable. I had made a run to Nashua, New Hampshire on Columbus Day 2010. That had been a great day, the first to harken back to the pre-hemorrhage filled with 65 mph freedom accompanied by some favorite CDs in the deck.
Up through the release of the first retina hemorrhage (as opposed to the full blood vitreous hemorrhage triggered by a dose of Cialis) the only real "danger" I posed as a blind driver was a reduced ability to prevent accidents that would be caused by other people’s carelessness.
This changed after the first setback, just weeks after that soul-soothing trip to New Hampshire.
Wednesday, December 28, 2011
On the Road Again
My first trip after recovering from the Cialis-induced hemorrhage was a quick "medical emergency" in early June 2010. I’d run out of insulin and needed the evening dose. I wasn’t sure is the Wal-Mart pharmacy was still open. (I won’t disparage Wal-Mart on this. To my knowledge they are the only ones who carry a generic of standard insulin. Even if other pharmacies have begun carrying this, Wal-Mart was the only one for 10 or more years who defied Ely Lilly and Company by carrying it. That saved me thousands of dollars and certainly bought some loyalty.)
Maybe I just didn’t want to ask the roommate for the ride when I was not positive how late the pharmacy was open. Maybe I was just being thick in the head in wanting to drive. The roommate’s on the deaf side and was watching TV at the front of the house. I slipped out the back without a word. Wal-Mart is perhaps a quarter mile down the same road I live on.
I did not have such severe night vision then. I moved slowly and cautiously and made the round trip without incident. I snuck back into the house without the roommate having known I was gone.
My blindness had put me in a position where I had to accept more well intended assistance than I cared for, from the roommate and one other friend in particular. Both of these dear friends have control freak tendencies that grated against my uncontrollable nature with exponential angst as I got slowly better through Spring 2010.
I kept my foray a secret. I made a couple other short jaunts over the next couple weeks, testing the waters of my partially regained abilities in secret from my caring, controlling jailers.
I’m not a very good liar or sneak and have no particular motivation to get good at those types of thing. I’m a bit of a smart ass and like confessing my misdeeds when its far too late for them to matter. The reaction often amuses me. I break out the old childhood stories of sins gotten away with when my parents get on my nerves. I only recently broke out the crown jewel of how I escaped a three day school suspension by asking the vice principal if he had f*d his wife the night before.
My secret excursions lasted a couple weeks before I revealed myself. The roommate generated a lot of noise about it, all white noise to me because I was able to name times and dates when I had been out before and where I went. The fact that I had been on the road a bit without incident left him little he could say.
I didn’t have to hide it anymore. I could drive, even though I remained legally blind.
Maybe I just didn’t want to ask the roommate for the ride when I was not positive how late the pharmacy was open. Maybe I was just being thick in the head in wanting to drive. The roommate’s on the deaf side and was watching TV at the front of the house. I slipped out the back without a word. Wal-Mart is perhaps a quarter mile down the same road I live on.
I did not have such severe night vision then. I moved slowly and cautiously and made the round trip without incident. I snuck back into the house without the roommate having known I was gone.
My blindness had put me in a position where I had to accept more well intended assistance than I cared for, from the roommate and one other friend in particular. Both of these dear friends have control freak tendencies that grated against my uncontrollable nature with exponential angst as I got slowly better through Spring 2010.
I kept my foray a secret. I made a couple other short jaunts over the next couple weeks, testing the waters of my partially regained abilities in secret from my caring, controlling jailers.
I’m not a very good liar or sneak and have no particular motivation to get good at those types of thing. I’m a bit of a smart ass and like confessing my misdeeds when its far too late for them to matter. The reaction often amuses me. I break out the old childhood stories of sins gotten away with when my parents get on my nerves. I only recently broke out the crown jewel of how I escaped a three day school suspension by asking the vice principal if he had f*d his wife the night before.
My secret excursions lasted a couple weeks before I revealed myself. The roommate generated a lot of noise about it, all white noise to me because I was able to name times and dates when I had been out before and where I went. The fact that I had been on the road a bit without incident left him little he could say.
I didn’t have to hide it anymore. I could drive, even though I remained legally blind.
Tuesday, December 27, 2011
Actos-ing Up
I "saw" a television commercial for the first time this week. The subject of the commercial was Actos, a Takeda Pharmaceuticals drug used to control blood sugar in Type 2 Diabetics.
The ad was for a lawyer’s class action lawsuit for people who developed bladder cancer after using Actos. This is not the first class action lawsuit ad for alternative insulin users. It seems to me there’s a new one every year, a rate that seems to match the availability of new alternative insulins.
You want to be part of a class action suit? Easy enough. Become a Type 2 Diabetic and take whatever new insulin your doctor prescribes. Don’t ask how new the drug is and how extensive testing might have or might not have been. Certainly do not ask your doctor how many prescriptions he must write before he gets that gold trip to Bermuda.
Your doctor will tout all the good effects of this or any other new insulin. Most and sometimes all of his information comes from the pharmaceutical company that owns the patent on the drug.
The only one likely to profit from diabetic patients taking new drugs is the pharmaceutical company pushing the drug.
The patient is the guinea pig. The pharmaceutical companies are betting on medicare patients being too ignorant to know that they are the lab rats. The pharmaceutical companies get money while the patients get heart attacks or one form of cancer or another from each new blood sugar medication pimped out.
I am a Type 1 Diabetic. I use the old Humulin insulin. I switched to humulin or "Humulog" only when Eli Lilly and Company stopped making old style insulin made from port and beef.
I understand that too many people are so afraid of needles that they will try anything rather than go on a standard insulin form. They need to get over it. Diabetic syringes are so tiny that the injection cannot even be felt most of the time. Chances are, if you developed Type 2 Diabetes, you have a lot of excess flab that can be taking needles without any sensation of pain.
Every case is different and not all Type 2’s need full insulin. Guided by research sponsored by the pharmaceuticals, the medical industry has been changing the definition of "diabetic" and "pre-diabetic" just to increase their customer base.
You can go blindly along with what the tools in the corrupted medical industry tell you, or you can be proactive in your own health and insist on older, effective medications that your doctor actually has some practical experience with among his patients. The older medications are also cheaper because they are not being sold at development-recovering profits or sustaining the advertising industry.
Surely not many doctors are thinking of their patients’ bladder cancers when they’re on the green in Bermuda.
The ad was for a lawyer’s class action lawsuit for people who developed bladder cancer after using Actos. This is not the first class action lawsuit ad for alternative insulin users. It seems to me there’s a new one every year, a rate that seems to match the availability of new alternative insulins.
You want to be part of a class action suit? Easy enough. Become a Type 2 Diabetic and take whatever new insulin your doctor prescribes. Don’t ask how new the drug is and how extensive testing might have or might not have been. Certainly do not ask your doctor how many prescriptions he must write before he gets that gold trip to Bermuda.
Your doctor will tout all the good effects of this or any other new insulin. Most and sometimes all of his information comes from the pharmaceutical company that owns the patent on the drug.
The only one likely to profit from diabetic patients taking new drugs is the pharmaceutical company pushing the drug.
The patient is the guinea pig. The pharmaceutical companies are betting on medicare patients being too ignorant to know that they are the lab rats. The pharmaceutical companies get money while the patients get heart attacks or one form of cancer or another from each new blood sugar medication pimped out.
I am a Type 1 Diabetic. I use the old Humulin insulin. I switched to humulin or "Humulog" only when Eli Lilly and Company stopped making old style insulin made from port and beef.
I understand that too many people are so afraid of needles that they will try anything rather than go on a standard insulin form. They need to get over it. Diabetic syringes are so tiny that the injection cannot even be felt most of the time. Chances are, if you developed Type 2 Diabetes, you have a lot of excess flab that can be taking needles without any sensation of pain.
Every case is different and not all Type 2’s need full insulin. Guided by research sponsored by the pharmaceuticals, the medical industry has been changing the definition of "diabetic" and "pre-diabetic" just to increase their customer base.
You can go blindly along with what the tools in the corrupted medical industry tell you, or you can be proactive in your own health and insist on older, effective medications that your doctor actually has some practical experience with among his patients. The older medications are also cheaper because they are not being sold at development-recovering profits or sustaining the advertising industry.
Surely not many doctors are thinking of their patients’ bladder cancers when they’re on the green in Bermuda.
Monday, December 26, 2011
Losing the Great American Liberty
In October 2009, the vitreous hemorrhage that resulted from a dose of Cialis filled the eye with blood. I saw everything through a red glow. I could not drive at night but managed for a while in the daytime, to places I knew. The visual effect those first few weeks was nothing more than looking through rose colored lenses. The discoloration darkened everything, but in the light I could function OK. I pressed on with life.
That changed with the healing process. He blood began to separate from itself and mix into the eye. It contaminated the vitreous fluid and the fluid in the dense existing cataract. This changed the visual effect from simple discoloration to a dense reddish cloud. The cloud obscured everything. Within a couple weeks I was uselessly blind at all things. At that point I stopped driving on my own. No one needed to take my keys away. I am typically responsible for myself and I recognized the dangers I posed to myself and society without needing some catastrophic event to smash the point into my skull.
I was off the road before the end of October 2009. Except for one time, I did not drive until late April 2010. I loved driving almost as much as I loved reading, which I also could not do. I was feeling great losses at this time.
The sole attempt at driving was during the only accumulating snowfall of that season. I felt lucky that it had been a light snow season where the storms all seemed to mystically miss Rhode Island. If I had been well I certainly would have driven to Virginia with the signs on the plow just to make money that year. Transported by teammates and reliant on them to know what pins remained target of the second ball, I still bowled twice per week. Otherwise I stagnated at home.
I almost wish I had some amusing story to relate with the attempt at driving that winter. I got behind the wheel in an attempt to plow my own parking area.
I quickly realized it was not something I could do. The ruddy haze was too blinding.
I carried the expectation that the cataract surgery would restore me. The treatment at the time was "preventative" PRP surgery then cataract replacement, and the doctors fostered those expectations.
Cataract replacement did remove a layer of the ruddy haze. I opened my eyes in bed the night of the surgery and seeing farther and better than I had since childhood.
Then I got up and moved. That was the first I learned of the vitreous fluid problem. An immense pool of blood still resided in the center of the eye. The blood and vitreous fluid acted as oil and vinegar. So long as I was perfectly still, the elements separated and I could see clearly. I could see the bubble of blood floating at the top of the eye. Any movement mixed the bubble with the natural eye fluids.
I’d be going nowhere fast, not until the blood dissipated, and no one could tell me when or if that would be.
That changed with the healing process. He blood began to separate from itself and mix into the eye. It contaminated the vitreous fluid and the fluid in the dense existing cataract. This changed the visual effect from simple discoloration to a dense reddish cloud. The cloud obscured everything. Within a couple weeks I was uselessly blind at all things. At that point I stopped driving on my own. No one needed to take my keys away. I am typically responsible for myself and I recognized the dangers I posed to myself and society without needing some catastrophic event to smash the point into my skull.
I was off the road before the end of October 2009. Except for one time, I did not drive until late April 2010. I loved driving almost as much as I loved reading, which I also could not do. I was feeling great losses at this time.
The sole attempt at driving was during the only accumulating snowfall of that season. I felt lucky that it had been a light snow season where the storms all seemed to mystically miss Rhode Island. If I had been well I certainly would have driven to Virginia with the signs on the plow just to make money that year. Transported by teammates and reliant on them to know what pins remained target of the second ball, I still bowled twice per week. Otherwise I stagnated at home.
I almost wish I had some amusing story to relate with the attempt at driving that winter. I got behind the wheel in an attempt to plow my own parking area.
I quickly realized it was not something I could do. The ruddy haze was too blinding.
I carried the expectation that the cataract surgery would restore me. The treatment at the time was "preventative" PRP surgery then cataract replacement, and the doctors fostered those expectations.
Cataract replacement did remove a layer of the ruddy haze. I opened my eyes in bed the night of the surgery and seeing farther and better than I had since childhood.
Then I got up and moved. That was the first I learned of the vitreous fluid problem. An immense pool of blood still resided in the center of the eye. The blood and vitreous fluid acted as oil and vinegar. So long as I was perfectly still, the elements separated and I could see clearly. I could see the bubble of blood floating at the top of the eye. Any movement mixed the bubble with the natural eye fluids.
I’d be going nowhere fast, not until the blood dissipated, and no one could tell me when or if that would be.
Saturday, December 24, 2011
Gifts
Last year when my parents asked what I wanted for Christmas, I told my mother that her left eye would be fine. I didn’t care that it wouldn’t match my fiery hazel, just so long as it worked passably. I might have preferred my father’s blue, but his don’t work so well. Both of my mother’s eyes work well enough; I did just fine for almost a decade with only one functioning eye, so surely this seventy-something old broad with a relatively sedentary lifestyle could do with only one. I figured she could take to wearing a patch and train a parrot to sit on her shoulder; those things might match the rapier that she’s usually carrying around tp stab people who try cutting in front of her in line at Wal-Mart. She used to carry a horseshoe in her purse for those occasions, but I guess that got too heavy for her.
I could see well enough to get the look that fell on her face. Maybe she thought I already had a surgeon lined up or something. and that I had forged surgical consent forms like had forged absence excuses and warning slips through high school. That look gave me a brief flash of, well, something. It couldn’t be shame; I am pretty shameless about my sense of humor, and my mother knows that. She’s the one who always preferred Three Stooges over Sesame Street anytime there was conflict between me and an older sibling.. I think her look jarred me with interpersonal disconnection that she didn’t get my dry delivery. She’s my mother. She should know that if I were going to resort to black market solutions to the eye problems, I would certainly take a fresh eye not from an elderly woman, but from an infant. Babies can learn to adjust better to a life with only one eye far easier than an old person can.
I reverted to a more serious answer. There was a bit of scrap lumber and old doors across a few of the properties. I wanted a Seats Craftsman 19.2 volt battery circular saw to easily cut it down to pieces that would fit into the city trash bins. I didn’t get that either; something bout the dangers inherent in blind guys using power tools.
I got a set of deluxe Tupperware with airtight gaskets on the lids and snap locks on each side. That could come in useful for keeping an infant’s eye airtight for an hour or two until I can get it to that black market surgeon.
And my parents also still gave their annual gift: they renewed my AAA membership.
I could see well enough to get the look that fell on her face. Maybe she thought I already had a surgeon lined up or something. and that I had forged surgical consent forms like had forged absence excuses and warning slips through high school. That look gave me a brief flash of, well, something. It couldn’t be shame; I am pretty shameless about my sense of humor, and my mother knows that. She’s the one who always preferred Three Stooges over Sesame Street anytime there was conflict between me and an older sibling.. I think her look jarred me with interpersonal disconnection that she didn’t get my dry delivery. She’s my mother. She should know that if I were going to resort to black market solutions to the eye problems, I would certainly take a fresh eye not from an elderly woman, but from an infant. Babies can learn to adjust better to a life with only one eye far easier than an old person can.
I reverted to a more serious answer. There was a bit of scrap lumber and old doors across a few of the properties. I wanted a Seats Craftsman 19.2 volt battery circular saw to easily cut it down to pieces that would fit into the city trash bins. I didn’t get that either; something bout the dangers inherent in blind guys using power tools.
I got a set of deluxe Tupperware with airtight gaskets on the lids and snap locks on each side. That could come in useful for keeping an infant’s eye airtight for an hour or two until I can get it to that black market surgeon.
And my parents also still gave their annual gift: they renewed my AAA membership.
Friday, December 23, 2011
Reaching for the Light
As a result of the setbacks, my color vision diminished to almost nothing. The essentials of contrasting color to mark edges and boundaries is lost to me. The television is a hazed out jumble of shades of gray with occasional reds and tints of paled blue. This is not a retinapathy issue; I still see vivid color through the right eye’s misaligned pinhole.
The floater release earlier this month devastated me. Ot came o top of a dozen or more other stressful events crammed into too short a time. When I realized for sure that it had just inexplicably happened again, I nearly cried in the middle of the waiting room. Tough stoic me nearly cried. I’m still not sure how I kept it under control. I think I just focused on why I was in that office and focused on my foot. They eye could wait; my latest doctor is local to me, and indeed I was seen by his associate that afternoon.
The last few weeks have been pure hell for me. I’ve been kicked from every direction, often repeatedly, and most things I was just not able to see coming, figuratively and literally. My neatly compartmentalized life saw fires and floods in almost every compartment. (No worries, homeowners and tenants; that one’s just figuratively speaking.)
Many of these events tied the present with the distant past and a bleak future. My mind became like the TV, a grayed out jumble of indiscernible images that just flowed together incoherently.
The release of the floater was the last straw, the last thing to happen to make me feel like the perpetual victim. It became my call to pull myself together and deal with the whirlwinds swirling about me.
I did not rest at all with this setback. I resumed more of the things I had let go due to the blind eyes and the gimpy foot.
The floater dissipated completely in a matter of three days. It’s probably absorbed into the eye. The day it happened it was a solid black mass that danced from the blind perineal and into my tight circle of remaining vision. Day Two saw a tangled blur of webs and their accompanying spiders, morbid shadows that flickered past my eye like the fleeting peripherally-seen image of a fleeing black cat. By Day Three it was reduced to a fat hairy spider among slight strands of web. By the end of the day it was gone. The vision was really poor enough before this release that I cannot tell if things are a little more obscured now.
I’m working with the latest doctor. I am one stubborn son of a bitch. Things may be dark, but in so many ways in my life, they always have been.
I’m not done reaching for the light just yet.
The floater release earlier this month devastated me. Ot came o top of a dozen or more other stressful events crammed into too short a time. When I realized for sure that it had just inexplicably happened again, I nearly cried in the middle of the waiting room. Tough stoic me nearly cried. I’m still not sure how I kept it under control. I think I just focused on why I was in that office and focused on my foot. They eye could wait; my latest doctor is local to me, and indeed I was seen by his associate that afternoon.
The last few weeks have been pure hell for me. I’ve been kicked from every direction, often repeatedly, and most things I was just not able to see coming, figuratively and literally. My neatly compartmentalized life saw fires and floods in almost every compartment. (No worries, homeowners and tenants; that one’s just figuratively speaking.)
Many of these events tied the present with the distant past and a bleak future. My mind became like the TV, a grayed out jumble of indiscernible images that just flowed together incoherently.
The release of the floater was the last straw, the last thing to happen to make me feel like the perpetual victim. It became my call to pull myself together and deal with the whirlwinds swirling about me.
I did not rest at all with this setback. I resumed more of the things I had let go due to the blind eyes and the gimpy foot.
The floater dissipated completely in a matter of three days. It’s probably absorbed into the eye. The day it happened it was a solid black mass that danced from the blind perineal and into my tight circle of remaining vision. Day Two saw a tangled blur of webs and their accompanying spiders, morbid shadows that flickered past my eye like the fleeting peripherally-seen image of a fleeing black cat. By Day Three it was reduced to a fat hairy spider among slight strands of web. By the end of the day it was gone. The vision was really poor enough before this release that I cannot tell if things are a little more obscured now.
I’m working with the latest doctor. I am one stubborn son of a bitch. Things may be dark, but in so many ways in my life, they always have been.
I’m not done reaching for the light just yet.
Thursday, December 22, 2011
Setback Patterns
The other part of the pattern in the setbacks of mini floater "hemorrhages" stood out more prominently after each incident: the recovery proved less complete.
The first had robbed me of night vision, to the point that I knew I could no longer drive at night. Getting lost in the neighborhood I grew up in had driven that point home.
By the summer after that fateful ride "home." not only was darkness vision absolutely atrocious, but my light sensitivity issues had also grown distressing. Nearby bright lights such as streetlights swelled to three times their actual size, yet my eyes could process less of the light that shone to the ground. My adjustment time when moving between bright and dark environs increased. Light would seem to stay in the eye, casting a hazy glow whether my eyes were open or closed after I looked away from the light source. I suspected that my pupils just weren’t working correctly. Without solicitation from me, my latest eye doctor confirmed that exact problem the first time he examined me. He said I have the most complicated eyes he had ever seen.
My close up vision deteriorated further. That particular malady became the most progressive loss during Autumn 2011, the period of steady loss without the catalyst of a floater eruption. Reading became not just difficult, but impossible. The pupil also noticeably worsened in this time. Darkness became nearly total under any circumstance, and any light proves too much, as if my eyes are always dilated. There’s either nowhere near enough light or far too much.
My color vision diminished to almost nothing. The essentials of contrasting color to mark edges and boundaries is lost to me. The television is a hazed out jumble of shades of gray with occasional reds and tints of paled blue. This is not a retinapathy issue; I still see vivid color through the right eye’s misaligned pinhole. The retinapathy issues remain the distortions in the center of my vision and the waves in straight lines and checkerboards. At bowling, the lanes \have a C-curve to my perspective.
We’re now past the solstice. The days are getting longer and brighter. It’s time to turn this around.
The first had robbed me of night vision, to the point that I knew I could no longer drive at night. Getting lost in the neighborhood I grew up in had driven that point home.
By the summer after that fateful ride "home." not only was darkness vision absolutely atrocious, but my light sensitivity issues had also grown distressing. Nearby bright lights such as streetlights swelled to three times their actual size, yet my eyes could process less of the light that shone to the ground. My adjustment time when moving between bright and dark environs increased. Light would seem to stay in the eye, casting a hazy glow whether my eyes were open or closed after I looked away from the light source. I suspected that my pupils just weren’t working correctly. Without solicitation from me, my latest eye doctor confirmed that exact problem the first time he examined me. He said I have the most complicated eyes he had ever seen.
My close up vision deteriorated further. That particular malady became the most progressive loss during Autumn 2011, the period of steady loss without the catalyst of a floater eruption. Reading became not just difficult, but impossible. The pupil also noticeably worsened in this time. Darkness became nearly total under any circumstance, and any light proves too much, as if my eyes are always dilated. There’s either nowhere near enough light or far too much.
My color vision diminished to almost nothing. The essentials of contrasting color to mark edges and boundaries is lost to me. The television is a hazed out jumble of shades of gray with occasional reds and tints of paled blue. This is not a retinapathy issue; I still see vivid color through the right eye’s misaligned pinhole. The retinapathy issues remain the distortions in the center of my vision and the waves in straight lines and checkerboards. At bowling, the lanes \have a C-curve to my perspective.
We’re now past the solstice. The days are getting longer and brighter. It’s time to turn this around.
Wednesday, December 21, 2011
No Rest for the Wicked
The floater releases held a pattern besides being mostly three month intervals. They all made mu vision worse in an apparently permanent way. There’s been four releases, and the only month that skipped saw the beginning of undeniable gradual regression without a sudden shadow.
I had to seek advice in dealing with them by looking online. That’s not easy for me, but necessary. Most setbacks occurred while I was in the "care" of Doctor Arrigg at Joslin. He did little but shake his head sadly and talk about surgery on the long-dark right eye as a means of getting what backup I could from that. That operation was something he never intended to do anyway. In the meantime, he had wasted more than a year of crucial treatment time and thousands of my dollars.
The advice I gleaned read the same for the floater hemorrhages as it did for the bloody vitreous hemorrhage induced by the Cialis dose: rest easy until the floater absorbed into the vitreous fluid. I did that the first time, even with responsibilities pressing. I sat in the recliner and listened to the TV day after day. When I could, did internet searches and tried to keep up on things. I had been at a good clip with the fiction writing through 2010, but the first setback curtailed that. The ever-growing backlog of responsibilities has kept those ambitions curtailed. I only have so much computer time before the screen burns the eye out for the day.
Absorption into the eye took a few weeks, and more recovery of function took longer.
With the second setback, I considered more of my experience than the book learnin’. I had slept in the recliner for months after the hemorrhage, as advised by online articles. After a few months I was just missed my own bed upstairs. Absorption of the bloody haze seemed to pick up speed when I began lying down. I had assumed that this was just the time of the healing process.
I did not rest as much after the second setback. I couldn’t. While plowing was over, shoveling at the properties remained, and by that time in the winter of 2010 even enterprising neighborhood kids didn’t want to deal with it anymore. Three apartments were empty and needed work, and countless projects remained backlogged. Squirrels were invading one house as mice were invading two others. Electrical problems developed. A newer and higher priority always emerged. I couldn’t rest anyway.
And the healing process went more quickly.
I rested less after the third setback. By that time I felt shame for the length of time apartments had been empty and was having problems farming assistance. Despite assurances of payment, some friends were charitable in offering help but had little desire to follow through and/or weren’t as capable as they thought they were. If I wanted things done, I needed to do them myself.
I had to seek advice in dealing with them by looking online. That’s not easy for me, but necessary. Most setbacks occurred while I was in the "care" of Doctor Arrigg at Joslin. He did little but shake his head sadly and talk about surgery on the long-dark right eye as a means of getting what backup I could from that. That operation was something he never intended to do anyway. In the meantime, he had wasted more than a year of crucial treatment time and thousands of my dollars.
The advice I gleaned read the same for the floater hemorrhages as it did for the bloody vitreous hemorrhage induced by the Cialis dose: rest easy until the floater absorbed into the vitreous fluid. I did that the first time, even with responsibilities pressing. I sat in the recliner and listened to the TV day after day. When I could, did internet searches and tried to keep up on things. I had been at a good clip with the fiction writing through 2010, but the first setback curtailed that. The ever-growing backlog of responsibilities has kept those ambitions curtailed. I only have so much computer time before the screen burns the eye out for the day.
Absorption into the eye took a few weeks, and more recovery of function took longer.
With the second setback, I considered more of my experience than the book learnin’. I had slept in the recliner for months after the hemorrhage, as advised by online articles. After a few months I was just missed my own bed upstairs. Absorption of the bloody haze seemed to pick up speed when I began lying down. I had assumed that this was just the time of the healing process.
I did not rest as much after the second setback. I couldn’t. While plowing was over, shoveling at the properties remained, and by that time in the winter of 2010 even enterprising neighborhood kids didn’t want to deal with it anymore. Three apartments were empty and needed work, and countless projects remained backlogged. Squirrels were invading one house as mice were invading two others. Electrical problems developed. A newer and higher priority always emerged. I couldn’t rest anyway.
And the healing process went more quickly.
I rested less after the third setback. By that time I felt shame for the length of time apartments had been empty and was having problems farming assistance. Despite assurances of payment, some friends were charitable in offering help but had little desire to follow through and/or weren’t as capable as they thought they were. If I wanted things done, I needed to do them myself.
Shameless Plug
I generally keep the blog and my fiction separate (there’s that compartmentalization thing again)but of all stories I have ever written or probably ever will write, this one deserves an extra push.
Some have noticed my "bitterness" about the blind thing while others have noted the humor I try to infuse (and other have noted both with the connection between angry people and that over-the-top Three Stooges humor.)
WTF?!
Paperback or Kindle http://www.amazon.com/dp/0982991347
http://www.barnesandnoble.com/w/wtf-rose-mambert/1107930675?ean=9780982991343&itm=5&usri=wtf%3f%21
I do have to add a language advisory to this one as I do usually avoid excessive cussing in my writing, but what’s a few F-bombs between friends? is finally available...too late for Christmas, unfortunately. If you only ever get one anthology with one of my short stories, this is the one! This urban fantasy is full on with my warped, politically incorrect humor in a sharp satire about Providence during the shameful Ciccillini administration. "The Rats of the Renaissance City" in WTF?!
es, the book's cover illustration was inspired by my story!
Some have noticed my "bitterness" about the blind thing while others have noted the humor I try to infuse (and other have noted both with the connection between angry people and that over-the-top Three Stooges humor.)
WTF?!
Paperback or Kindle http://www.amazon.com/dp/0982991347
http://www.barnesandnoble.com/w/wtf-rose-mambert/1107930675?ean=9780982991343&itm=5&usri=wtf%3f%21
I do have to add a language advisory to this one as I do usually avoid excessive cussing in my writing, but what’s a few F-bombs between friends? is finally available...too late for Christmas, unfortunately. If you only ever get one anthology with one of my short stories, this is the one! This urban fantasy is full on with my warped, politically incorrect humor in a sharp satire about Providence during the shameful Ciccillini administration. "The Rats of the Renaissance City" in WTF?!
es, the book's cover illustration was inspired by my story!
Tuesday, December 20, 2011
The Fourth of the Apocalypse
The last sudden setback occurred on the morning of 14 December. Yeah, that 14 December, as in last week.
They call these releases of floaters hemorrhages, but they are nothing like the blood surging hemorrhage that set this descent to darkness in motion in October 2009. It was black, not red, and did not happen as I woke, but when I was sitting at a sports medicine office to have a serious ongoing problem with my foot more thoroughly examined.
I had never been to that office before. The waiting room is a large expansive room with scattered chairs and café type tables and inconstant lighting from fixtures and large picture windows. I thought the dancing shadow that streaked through my vision might be some oddity of the unfamiliar room. My roommate said the glass door was casting reflections.
If my eye chased after the darting shadows, they moved or got worse. I realized quickly that the problem was in my eye, not the room.
Maybe stress caused it. I was under no stress for being in the doctor’s office; I had been looking forward to the appointment as resolution to a problem that had gone on for too long. The injury to my foot was two months old and not getting better. I could deal with it OK, except that it was a very inconvenient injury that further decreased my mobility and self sufficiency. Even if I wanted to get to the convenience store a quarter mile away, I couldn’t drive because I’m too blind and I couldn’t walk because I’m too gimpy.
While the doctor’s visit created no stress, I have to consider the impact of stress on the setback. Since Thanksgiving, every area in my neatly compartmentalized life has been exploding with unanticipated events that became even more frustrating by my inability to do anything about anything, or imploding through extreme boredom by my inability to do anything about anything..
My blood pressure, normally around 140/80, read at 212/123. Safe to say (or perhaps unsafe to say,) I was slightly upset.
My vision has been in further decline since late summer. I’ve been coping with that stoically, sharing nothing unless someone noticed and addressed it to me on point. When my right eye faded, there had been no setbacks, just a steady fade to black. I had not noticed that fade as acutely because I had another functioning eye and the muscle damage to that eye had made it more distracting that useful anyway.
This release of a huge floater drastically and suddenly made it even worse. I could only think, this is it This is the one from which I will not recover. Each of the prior setbacks had left more obstruction. I don’t think even my current doctor can accurately differentiate some effects between retina separation from vitreous obstruction. The results are the same. Instead of just being legally blind, I am heading towards totally blind.
That means doors are closing. For every one that does, I intend to kick open two others.
I’ve got the sore foot to prove it.
They call these releases of floaters hemorrhages, but they are nothing like the blood surging hemorrhage that set this descent to darkness in motion in October 2009. It was black, not red, and did not happen as I woke, but when I was sitting at a sports medicine office to have a serious ongoing problem with my foot more thoroughly examined.
I had never been to that office before. The waiting room is a large expansive room with scattered chairs and café type tables and inconstant lighting from fixtures and large picture windows. I thought the dancing shadow that streaked through my vision might be some oddity of the unfamiliar room. My roommate said the glass door was casting reflections.
If my eye chased after the darting shadows, they moved or got worse. I realized quickly that the problem was in my eye, not the room.
Maybe stress caused it. I was under no stress for being in the doctor’s office; I had been looking forward to the appointment as resolution to a problem that had gone on for too long. The injury to my foot was two months old and not getting better. I could deal with it OK, except that it was a very inconvenient injury that further decreased my mobility and self sufficiency. Even if I wanted to get to the convenience store a quarter mile away, I couldn’t drive because I’m too blind and I couldn’t walk because I’m too gimpy.
While the doctor’s visit created no stress, I have to consider the impact of stress on the setback. Since Thanksgiving, every area in my neatly compartmentalized life has been exploding with unanticipated events that became even more frustrating by my inability to do anything about anything, or imploding through extreme boredom by my inability to do anything about anything..
My blood pressure, normally around 140/80, read at 212/123. Safe to say (or perhaps unsafe to say,) I was slightly upset.
My vision has been in further decline since late summer. I’ve been coping with that stoically, sharing nothing unless someone noticed and addressed it to me on point. When my right eye faded, there had been no setbacks, just a steady fade to black. I had not noticed that fade as acutely because I had another functioning eye and the muscle damage to that eye had made it more distracting that useful anyway.
This release of a huge floater drastically and suddenly made it even worse. I could only think, this is it This is the one from which I will not recover. Each of the prior setbacks had left more obstruction. I don’t think even my current doctor can accurately differentiate some effects between retina separation from vitreous obstruction. The results are the same. Instead of just being legally blind, I am heading towards totally blind.
That means doors are closing. For every one that does, I intend to kick open two others.
I’ve got the sore foot to prove it.
Monday, December 19, 2011
The Latest Setback
There’s been time and distance to most of these blog entries. That’s made a candid telling easier for me. It feels less revealing because it’s old news for me. My brain tends to overthink; this can lead me to talking too much I’ve processed and settled things, even those with ramifications that are still ramming me.
I can be absolutely candid with some friends. Often, however, I find I get candid only about certain things with certain people and hold back other things.
Think of me as Woody Allen: I compartmentalize. If one area gets rough, I can always hop into another box until things calm in the first or I decide it’s time to close the box off for good. Maybe this is a sign of some undiagnosed paranoid schizophrenia. I’d read more to find out, but I can’t see to comfortably read anymore, and me reading that might turn into a hypochondriac reading medical journals.
Mentally I picture certain audiences when writing specific posts, like I am talking to specific people about specific things rather than an general audience that includes people I haven’t had much chance to talk to in too long, or complete strangers.
I am pretty candid in talking about my past doctors. I have not been afraid to name names because as long as I stick to the truth I cannot be sued for libel. But when it comes to current doctors, whether for the eye or my GP, I am treating them as I treat friends in the blog: they are rendered anonymous, male whether they are truly male, female or undetermined. That’s the respectful and polite thing. It also makes sure that I don’t piss off someone who is in control of a situation where I am anesthetized and could be hypnotized into wetting myself any time I hear the word "snowflake."
I talk about my difficulties in current things now because life has been hell since Thanksgiving and every compartment is on fire, it seems. Blindness has robbed me of a lot of self control and no less than five of the compartment fires all touch on other people’s control freak issues or my own self control/self sufficiency issues.
I expected the fourth setback in August, but I suffered no sudden appearance of a floater. That would be a good thing, but instead of a sudden onset, I have experienced a steady gradual fade out since September. The light haze is worse. The shadows grow weekly, it seems. Everything appears darker, literally and figuratively. Anyone I look at seems backlit and can’t be identified easily. I’m quicker to ask who I am talking to, and that has taken some people aback. My own physical vulnerabilities are the one area that people are not used to me being so blunt about.
The floater setbacks skipped August but compensated with something that was not an event I could cope with, but a gradual erosion that has kept this blind fool on uncertain footing.
The latest setback was Wednesday, 14 December 2011. I’m coping, best I can, but I need to give fair warning to those who care, those who control, and both: don’t try tugging on my leash now, because you will be in for one hell of a ride when this scrawny mutt drags your ass across the yard.
I can be absolutely candid with some friends. Often, however, I find I get candid only about certain things with certain people and hold back other things.
Think of me as Woody Allen: I compartmentalize. If one area gets rough, I can always hop into another box until things calm in the first or I decide it’s time to close the box off for good. Maybe this is a sign of some undiagnosed paranoid schizophrenia. I’d read more to find out, but I can’t see to comfortably read anymore, and me reading that might turn into a hypochondriac reading medical journals.
Mentally I picture certain audiences when writing specific posts, like I am talking to specific people about specific things rather than an general audience that includes people I haven’t had much chance to talk to in too long, or complete strangers.
I am pretty candid in talking about my past doctors. I have not been afraid to name names because as long as I stick to the truth I cannot be sued for libel. But when it comes to current doctors, whether for the eye or my GP, I am treating them as I treat friends in the blog: they are rendered anonymous, male whether they are truly male, female or undetermined. That’s the respectful and polite thing. It also makes sure that I don’t piss off someone who is in control of a situation where I am anesthetized and could be hypnotized into wetting myself any time I hear the word "snowflake."
I talk about my difficulties in current things now because life has been hell since Thanksgiving and every compartment is on fire, it seems. Blindness has robbed me of a lot of self control and no less than five of the compartment fires all touch on other people’s control freak issues or my own self control/self sufficiency issues.
I expected the fourth setback in August, but I suffered no sudden appearance of a floater. That would be a good thing, but instead of a sudden onset, I have experienced a steady gradual fade out since September. The light haze is worse. The shadows grow weekly, it seems. Everything appears darker, literally and figuratively. Anyone I look at seems backlit and can’t be identified easily. I’m quicker to ask who I am talking to, and that has taken some people aback. My own physical vulnerabilities are the one area that people are not used to me being so blunt about.
The floater setbacks skipped August but compensated with something that was not an event I could cope with, but a gradual erosion that has kept this blind fool on uncertain footing.
The latest setback was Wednesday, 14 December 2011. I’m coping, best I can, but I need to give fair warning to those who care, those who control, and both: don’t try tugging on my leash now, because you will be in for one hell of a ride when this scrawny mutt drags your ass across the yard.
Sunday, December 18, 2011
Spontaneous Eruption
The third setback of a dislodged floater that obscured my vision yet again occurred in May, 2011. This one came with no apparent cause. No temper loss or general over exertion preceded it. Life was calm enough at the time.
The primary pattern of these releases was timing. More gunk had spontaneously appeared in the eye every three months: November, February and then May.
Doctor Arrigg at Joslin Center proved himself no value to me in diagnosing or explaining the setbacks. In hindsight–quickly becoming my only form of vision–I know he just wasn’t one to share bad news. His failure to communicate about these specific concerns of floater releases was one of the major influences on my dissatisfaction and disillusionment with him. He left me alone to figure out what was going on. He seemed to have plenty to say to other doctors when I was out of earshot, but he offered me no causation or solution, just generic "These things happen to people who have been through what you have."
I tried to convince myself that all was OK, that the releases of massive black shadows and clouds in my eyes was just scar tissue from the original bloody vitreous hemorrhage. I think I did a good job convincing concerned parties of that. I am not a very good liar. I was better at lying to others than to myself.
Each release left aftereffects in its wake. Some of the effects were consistent with retinapathy, but others proved completely different from anything that had happened with the comparatively quick loss of my right eye.
Gridlines warped, where tile floors looked wavy. The general increased haze healed less each time; the visual effect could have been retinapathy just as easily as it could be simple contamination of my already dirty vitreous fluid.
Some aspects proved nothing like what happened during the retinapathy loss of the right eye. Through the right eye’s pinhole, I see poorly. The small field of vision looks through a dense cataract, and the eye is misaligned. The eye cannot quite look where the brain commands it to look. Yet that eye retains excellent color vision while every setback in the left eye reduced color vision more.
The right eye is also not overly light sensitive. The left eye refuses to process light. It’s either too light or too dark for me in most environments. The controlled lighting of the regulated sports venue of the bowling alley is my easiest environment. There, no lights flash into my eye but there is even, surrounding illumination.
Outside at night, a streetlight is too bright for me to look at and emits a size-doubling halo. Yet I can see very little of its light hitting the ground.
Adjustment between light and dark increased in difficulty. The shadow of a tree on a sunny day conceals almost everything.
My newest doctor said I have the most complicated eyes he has ever seen. The general combination of problems has rendered me increasingly helpless on all fronts and is fading fast.
The primary pattern of these releases was timing. More gunk had spontaneously appeared in the eye every three months: November, February and then May.
Doctor Arrigg at Joslin Center proved himself no value to me in diagnosing or explaining the setbacks. In hindsight–quickly becoming my only form of vision–I know he just wasn’t one to share bad news. His failure to communicate about these specific concerns of floater releases was one of the major influences on my dissatisfaction and disillusionment with him. He left me alone to figure out what was going on. He seemed to have plenty to say to other doctors when I was out of earshot, but he offered me no causation or solution, just generic "These things happen to people who have been through what you have."
I tried to convince myself that all was OK, that the releases of massive black shadows and clouds in my eyes was just scar tissue from the original bloody vitreous hemorrhage. I think I did a good job convincing concerned parties of that. I am not a very good liar. I was better at lying to others than to myself.
Each release left aftereffects in its wake. Some of the effects were consistent with retinapathy, but others proved completely different from anything that had happened with the comparatively quick loss of my right eye.
Gridlines warped, where tile floors looked wavy. The general increased haze healed less each time; the visual effect could have been retinapathy just as easily as it could be simple contamination of my already dirty vitreous fluid.
Some aspects proved nothing like what happened during the retinapathy loss of the right eye. Through the right eye’s pinhole, I see poorly. The small field of vision looks through a dense cataract, and the eye is misaligned. The eye cannot quite look where the brain commands it to look. Yet that eye retains excellent color vision while every setback in the left eye reduced color vision more.
The right eye is also not overly light sensitive. The left eye refuses to process light. It’s either too light or too dark for me in most environments. The controlled lighting of the regulated sports venue of the bowling alley is my easiest environment. There, no lights flash into my eye but there is even, surrounding illumination.
Outside at night, a streetlight is too bright for me to look at and emits a size-doubling halo. Yet I can see very little of its light hitting the ground.
Adjustment between light and dark increased in difficulty. The shadow of a tree on a sunny day conceals almost everything.
My newest doctor said I have the most complicated eyes he has ever seen. The general combination of problems has rendered me increasingly helpless on all fronts and is fading fast.
Saturday, December 17, 2011
Setbacks and Disappointments
I call the incidents of large floaters breaking loose in my eye "setbacks." That is a gross understatement. Each could have stopped me dead in the tracks of whatever I was trying to achieve at the moment, and for that day or week or month. The first setback in November 2010 did just that. I let it. I reverted to the state of blood obstructed vision from the original vitreous hemorrhage. I sat in the recliner day by day, listening to the TV.
The February 2011 release caused more stress. The winter had been rough in regards to maintaining my responsibilities. Three apartments had emptied. I was not up to the work of rehab. A quick job such as upgrading window blinds became next to impossible. I couldn’t see up close even when things were clearer, thanks to Doctor Negrey’s decision to install a cataract lense that killed my close vision.
In 2003 I had single handedly turned over six apartments in one month. This time it took nine months to turn over three. Getting help proved difficult. Friends with good intentions made promises out of pity. Some made it worse when they realized they didn’t really want to help. They became too embarrassed about their second thoughts to even call to cancel. In some cases, waiting for the promised dat of help then waiting around all day for someone with no intention of actually showing up wasted weeks.
I ca be a pretty difficult guy in a lot of ways. I’m strong and cocksure. I fought since adolescence for self control and self sufficiency. I’m not arrogant–I do not believe myself better than anyone else, just equally good as anyone else, better at some things, worse at others. Cocky, yes. Arrogant, no. But a lot of people can see that distinction about as well as I can see the directions on the back of an aspirin bottle.
I was never big on relying on other people and the multiple disappointments with multiple people I am genuinely fond of did lead to emotional shut down. I’m prone to those. In some ways the lifelong fight for self sufficiency was too successful. Failed results when reaching out to or relying on others kicks me back to cold and fierce independence.
I’m struggling to accept that those lifelong default modes just won’t work well anymore. Each helping hand I push away usually leads to another stumble over a curb or down the stairs.
Parents, teachers and mentors found my strength of will banes of their existence. People always found my infamous "don’t care, don’t need anyone" attitude abrasive.
That cocksure strength prompts me to call these massive regressions and relapses "setbacks." I recover from each less completely. To apply a more serious label for them will only speed my loss of self control, a loss that seems inevitable at this point.
But I won’t let it happen any faster than nature rips it away..
The February 2011 release caused more stress. The winter had been rough in regards to maintaining my responsibilities. Three apartments had emptied. I was not up to the work of rehab. A quick job such as upgrading window blinds became next to impossible. I couldn’t see up close even when things were clearer, thanks to Doctor Negrey’s decision to install a cataract lense that killed my close vision.
In 2003 I had single handedly turned over six apartments in one month. This time it took nine months to turn over three. Getting help proved difficult. Friends with good intentions made promises out of pity. Some made it worse when they realized they didn’t really want to help. They became too embarrassed about their second thoughts to even call to cancel. In some cases, waiting for the promised dat of help then waiting around all day for someone with no intention of actually showing up wasted weeks.
I ca be a pretty difficult guy in a lot of ways. I’m strong and cocksure. I fought since adolescence for self control and self sufficiency. I’m not arrogant–I do not believe myself better than anyone else, just equally good as anyone else, better at some things, worse at others. Cocky, yes. Arrogant, no. But a lot of people can see that distinction about as well as I can see the directions on the back of an aspirin bottle.
I was never big on relying on other people and the multiple disappointments with multiple people I am genuinely fond of did lead to emotional shut down. I’m prone to those. In some ways the lifelong fight for self sufficiency was too successful. Failed results when reaching out to or relying on others kicks me back to cold and fierce independence.
I’m struggling to accept that those lifelong default modes just won’t work well anymore. Each helping hand I push away usually leads to another stumble over a curb or down the stairs.
Parents, teachers and mentors found my strength of will banes of their existence. People always found my infamous "don’t care, don’t need anyone" attitude abrasive.
That cocksure strength prompts me to call these massive regressions and relapses "setbacks." I recover from each less completely. To apply a more serious label for them will only speed my loss of self control, a loss that seems inevitable at this point.
But I won’t let it happen any faster than nature rips it away..
Thursday, December 15, 2011
Snowblind
The first setback on the vision recovery was due to a high blood pressure, low blood sugar moment in November 2010.
The second occurred the first week of February 2011. I was back on the Prozac, which calms the biochemical temper. This time the stress seemed rooted in overexertion. New England had been hit by massive snowstorms six weeks in a row, and that added responsibilities for someone responsible for multiple properties. The plowing and shoveling took a greater toll for an inferior finished hob. {;laces to put the snow had run out. Neighbors’s tempers and frustrations with the winter grew. As a middle aged guy out shoveling, I had been popping aspirin to avoid dying of a heart attack in the snow. I hate the cold.
The exertion and the aspirin probably played together to let the blood flow a little too freely, and while I did not drop into the temper issues, my sugars were surely running at relative lows during that time.
Another floater popped, accompanied by dirty gray tendrils that clouded the vision. This was not a minor floater like a fleck of pepper in my vision, but a big dancing hairy creature. It moved in and out of my vision from above when I moved my eye.
The doctors call this a hemorrhage, but these floater formations are nothing like the original vitreous hemorrhage that had filled my eye with blood.
The new shadow and cloud only added to the ongoing problems when the last floater pop had mostly subsided. It had happened while I was plowing the last property after the storm. I struggled to drive the eight blocks home. I knew from the incident the prior November that I would not be able to drive again for several weeks or longer, and future shoveling would be impossible as I had a hard enough time seeing well enough to get myself around the house.
Despair set in. U continued to bowl as normal with stalwart partners providing the transportation, but that was about all I could do.
Eventually the floater dissolved into general obstructing haze. The snowstorms stopped with that one, so I never did have the crisis of how to uphold my responsibilities to the tenants and the homeowners.
Aren’t I lucky?
The second occurred the first week of February 2011. I was back on the Prozac, which calms the biochemical temper. This time the stress seemed rooted in overexertion. New England had been hit by massive snowstorms six weeks in a row, and that added responsibilities for someone responsible for multiple properties. The plowing and shoveling took a greater toll for an inferior finished hob. {;laces to put the snow had run out. Neighbors’s tempers and frustrations with the winter grew. As a middle aged guy out shoveling, I had been popping aspirin to avoid dying of a heart attack in the snow. I hate the cold.
The exertion and the aspirin probably played together to let the blood flow a little too freely, and while I did not drop into the temper issues, my sugars were surely running at relative lows during that time.
Another floater popped, accompanied by dirty gray tendrils that clouded the vision. This was not a minor floater like a fleck of pepper in my vision, but a big dancing hairy creature. It moved in and out of my vision from above when I moved my eye.
The doctors call this a hemorrhage, but these floater formations are nothing like the original vitreous hemorrhage that had filled my eye with blood.
The new shadow and cloud only added to the ongoing problems when the last floater pop had mostly subsided. It had happened while I was plowing the last property after the storm. I struggled to drive the eight blocks home. I knew from the incident the prior November that I would not be able to drive again for several weeks or longer, and future shoveling would be impossible as I had a hard enough time seeing well enough to get myself around the house.
Despair set in. U continued to bowl as normal with stalwart partners providing the transportation, but that was about all I could do.
Eventually the floater dissolved into general obstructing haze. The snowstorms stopped with that one, so I never did have the crisis of how to uphold my responsibilities to the tenants and the homeowners.
Aren’t I lucky?
Wednesday, December 14, 2011
Christmas Ride
I had always loved driving. I listen to CDs, never a radio. The familiarity of beloved music both lulls and excites me. My mind cleared up for free association thinking. I would plot stories behind the wheel, "write" scenes and let my subconscious work through back burner-ed issues in fiction and reality.
In my infinite wisdom, I decided I would drive to my parents’ house on Christmas Eve 2010. I’m a Polack, kinda-sorta. Christmas Eve is supposed to be important. I had missed the prior year. I was better. I thought there was no reason to miss another. I was, after all, better.
I had not seen the only sibling I had any relationship[ with in a year or more and for some reason I still do not fully understand, I had a yearning to. Maybe in my mind there was a knowledge that my ability to see him would only get more limited, literally. I go through those phases sometimes, feeling nostalgia for relations that never truly existed. The last time we had spent together was when I helped him move into his house, circa 1985. I had nothing specific to say to him. I pictured the conversation we might have in free-thought imaginings during the forty mile highway road "home" to my parents’. The thoughts didn’t fill either his or my mouth with witty repertoire or fraternal bond. It was more of a rehearsal for the dry and generic questions he could ask of a former coworker than someone raised in the same house for ten years. (He’s a bit older.)
The drive down was incidental, mostly highway where I am buffered from oncoming headlights that would misadjust my focus. I knew the areas where I was coming and going, including the maze-twisted development in which my parents lives.
I had forgotten how dark the old neighborhood was. Planning had included underground wiring that left no poles for street lights. My old-fart, over-cautious, can’t-see-it-til-you’re-past-it driving allowed someone with highbeams to overtake me. The highbeams blinded me. I missed a crucial turn and could not see houses well enough to regain my bearings. I couldn’t call my parents or brother for help because I could not have told them where in the maze I was lost.
I found my way out of the neighborhood over the next hour. I went around the long and easier way with only two turns.
As for that conversation with my brother, my imaginings might have well been a script. He asked each of those generic, boring questions I had anticipated, no more and no less. I wondered why I had bothered. The answer came in my reflections on the way home, those free association subconscious resolutions. Over years of warm silence and close distance, I had come to realize that I had no relationship with any sibling, including this old favorite one. I knew with increasing certainty that the days when I could just hop in the car and visit him were ending for me. (Not that I had ever done so in decades.) I had gone to wordlessly say goodbye.
In my infinite wisdom, I decided I would drive to my parents’ house on Christmas Eve 2010. I’m a Polack, kinda-sorta. Christmas Eve is supposed to be important. I had missed the prior year. I was better. I thought there was no reason to miss another. I was, after all, better.
I had not seen the only sibling I had any relationship[ with in a year or more and for some reason I still do not fully understand, I had a yearning to. Maybe in my mind there was a knowledge that my ability to see him would only get more limited, literally. I go through those phases sometimes, feeling nostalgia for relations that never truly existed. The last time we had spent together was when I helped him move into his house, circa 1985. I had nothing specific to say to him. I pictured the conversation we might have in free-thought imaginings during the forty mile highway road "home" to my parents’. The thoughts didn’t fill either his or my mouth with witty repertoire or fraternal bond. It was more of a rehearsal for the dry and generic questions he could ask of a former coworker than someone raised in the same house for ten years. (He’s a bit older.)
The drive down was incidental, mostly highway where I am buffered from oncoming headlights that would misadjust my focus. I knew the areas where I was coming and going, including the maze-twisted development in which my parents lives.
I had forgotten how dark the old neighborhood was. Planning had included underground wiring that left no poles for street lights. My old-fart, over-cautious, can’t-see-it-til-you’re-past-it driving allowed someone with highbeams to overtake me. The highbeams blinded me. I missed a crucial turn and could not see houses well enough to regain my bearings. I couldn’t call my parents or brother for help because I could not have told them where in the maze I was lost.
I found my way out of the neighborhood over the next hour. I went around the long and easier way with only two turns.
As for that conversation with my brother, my imaginings might have well been a script. He asked each of those generic, boring questions I had anticipated, no more and no less. I wondered why I had bothered. The answer came in my reflections on the way home, those free association subconscious resolutions. Over years of warm silence and close distance, I had come to realize that I had no relationship with any sibling, including this old favorite one. I knew with increasing certainty that the days when I could just hop in the car and visit him were ending for me. (Not that I had ever done so in decades.) I had gone to wordlessly say goodbye.
Tuesday, December 13, 2011
Stepping up from the Setback
The first setback in the vision recovery in November 2010 showed various effects. I was back to being uselessly blind for several weeks. Bowling teammates had to identify pins after the first ball. Driving had to stop. Reading was impossible and the TV unclear. I was back to being a toddler who wanted to do so much but couldn’t quite figure out how to get out of the car seat restraints.
The direct effects of the vision ranged from symptoms between retinapathy and vitreous problems. It started as a chunk of a floater with spider-leg tendrils. The chunk faded to a cloud within a few days. The cloud lessened over the following weeks.
My peripheral further diminished. Everything seemed darker. Gridlines were wavy at the edges, to the point that doorframes looked jagged in the middle. My color sense diminished, though I did not quite notice at the time.
I have been off the generic Prozac; diminished capacity depressed me but I did not look at that as a biochemical problem needing biochemical solution. The fact that this setback had resulted in one of my infamous low sugar rages convinced me otherwise. I resumed because the Prozac did control those breaks when my sugar was down.
Things improved by December. In my infinite wisdom, I decided I would drive to my parents’ house on Christmas Eve. I’m a Polack, kinda-sorta. Christmas Eve is supposed to be important. I had missed the prior year. I was better. I thought there was no reason to miss another. I was, after all, better....
The direct effects of the vision ranged from symptoms between retinapathy and vitreous problems. It started as a chunk of a floater with spider-leg tendrils. The chunk faded to a cloud within a few days. The cloud lessened over the following weeks.
My peripheral further diminished. Everything seemed darker. Gridlines were wavy at the edges, to the point that doorframes looked jagged in the middle. My color sense diminished, though I did not quite notice at the time.
I have been off the generic Prozac; diminished capacity depressed me but I did not look at that as a biochemical problem needing biochemical solution. The fact that this setback had resulted in one of my infamous low sugar rages convinced me otherwise. I resumed because the Prozac did control those breaks when my sugar was down.
Things improved by December. In my infinite wisdom, I decided I would drive to my parents’ house on Christmas Eve. I’m a Polack, kinda-sorta. Christmas Eve is supposed to be important. I had missed the prior year. I was better. I thought there was no reason to miss another. I was, after all, better....
Sunday, December 11, 2011
Arrigg-ance
I remained a patient at Joslin Center’s Eye Clinic for multiple visits from early Summer 2010 to late summer 2011.
Dr. Paul Arrigg saw ne on the afternoon of my first visit after I had been abandon by Dr. Deborah Schlossman ’s urgency to leave for the day without a full address to the concerns of a patient with serious multiple problems.
Arrigg made me feel listened to. On that first day, he gave careful examination to the left eye, which Schlossman had not.
I also learned some private emphasis on the value of second opinions. He did not agree with all of the assessments that Schlossman had recorded but had not discussed with me, including lifting restrictions.
Here’s the catch: while Arrigg listened, he did not necessarily communicate. He went over issues with the left eye, but he did not want to explore options he thought were necessary or might become necessary. Simple truth here: eye doctors do not like doing risky procedures on patients who have only one functioning eye, because of the surgery just doesn’t work, they can be held responsible. I understand that. I just want all the information up front so I can make an informed decision. If the procedure were to go wrong, O wouldn’t complain or sue unless the doctor had been drunk or grossly incompetent. My complaints about O’Brien and Negrey at Koch lie entirely that I was not told of the risks, and I feel that they withheld information for the sake of their company’s profits.
Arrigg’s approach could not satisfy or placate me over time. I have an almost psychic ability to sense lies or holes in a story. I’m also smarter than I ever found particularly useful and am very good at filling in the blanks with considerable (but not perfect) accuracy with minimal information.
The important thing to me is to be receiving accurate information. This has always been a quirk of mine in professional contact, relationships familial, romantic and just casually personal, and any other aspect. You don’t have to be nice, just be honest and forthright.
Arrigg fir more of the pattern of the great listener who tells you what they think you want to hear rather than what you need to hear. He would, among other things, continue conversations about my medical state with other doctors after they had walked away from me.
He outlined an overall plan that may have been Schlossman’s original but uncommunicated intention: he wanted to do cataract surgery and retina reattachment on the right eye and then so r4etina reattachment on the left eye. We moved in that direction including with Sonograms of the eyes that were massive overcharges in comparison to the other two facilities where I had the same procedure done. I was eager to proceed with anything that might give me some restoration and prevent further deterioration in the left eye.
Dr, Arrigg was not so gung ho about it. Maybe grin prognosis, unguaranteeable results and cost to this out of pocket patient for something with a potentially negative risk benefit analysis. He’d hinted during prior visits, but finally said in Summer 2011 that he absolutely did not want to do any surgery and said I would be better off staying closer to home for my treatment.
On my own again.
Dr. Paul Arrigg saw ne on the afternoon of my first visit after I had been abandon by Dr. Deborah Schlossman ’s urgency to leave for the day without a full address to the concerns of a patient with serious multiple problems.
Arrigg made me feel listened to. On that first day, he gave careful examination to the left eye, which Schlossman had not.
I also learned some private emphasis on the value of second opinions. He did not agree with all of the assessments that Schlossman had recorded but had not discussed with me, including lifting restrictions.
Here’s the catch: while Arrigg listened, he did not necessarily communicate. He went over issues with the left eye, but he did not want to explore options he thought were necessary or might become necessary. Simple truth here: eye doctors do not like doing risky procedures on patients who have only one functioning eye, because of the surgery just doesn’t work, they can be held responsible. I understand that. I just want all the information up front so I can make an informed decision. If the procedure were to go wrong, O wouldn’t complain or sue unless the doctor had been drunk or grossly incompetent. My complaints about O’Brien and Negrey at Koch lie entirely that I was not told of the risks, and I feel that they withheld information for the sake of their company’s profits.
Arrigg’s approach could not satisfy or placate me over time. I have an almost psychic ability to sense lies or holes in a story. I’m also smarter than I ever found particularly useful and am very good at filling in the blanks with considerable (but not perfect) accuracy with minimal information.
The important thing to me is to be receiving accurate information. This has always been a quirk of mine in professional contact, relationships familial, romantic and just casually personal, and any other aspect. You don’t have to be nice, just be honest and forthright.
Arrigg fir more of the pattern of the great listener who tells you what they think you want to hear rather than what you need to hear. He would, among other things, continue conversations about my medical state with other doctors after they had walked away from me.
He outlined an overall plan that may have been Schlossman’s original but uncommunicated intention: he wanted to do cataract surgery and retina reattachment on the right eye and then so r4etina reattachment on the left eye. We moved in that direction including with Sonograms of the eyes that were massive overcharges in comparison to the other two facilities where I had the same procedure done. I was eager to proceed with anything that might give me some restoration and prevent further deterioration in the left eye.
Dr, Arrigg was not so gung ho about it. Maybe grin prognosis, unguaranteeable results and cost to this out of pocket patient for something with a potentially negative risk benefit analysis. He’d hinted during prior visits, but finally said in Summer 2011 that he absolutely did not want to do any surgery and said I would be better off staying closer to home for my treatment.
On my own again.
Tuesday, December 6, 2011
What Real-World Folk Need to Know
My intention was to write the blog roughly chronologically in terms of the physical condition of blindness. For reasons that include the declining condition and the fact that my mind works by association rather than in any linear fashion, that’s not quite practical.
I am not seeing too well.
When people approach me, more often than not, I cannot recognize them. I have always been good at voice identification, which helps. People with distinct body shapes provide better cues automatically.
Environment of where I know people narrows down the field, but is far from foolproof. The smaller of my two bowling leagues has an active roster of fifty-four people. The larger approaches eighty. More people are not on the active rosters. I’ve lived in same neighborhood for eighteen years. I’m in a successful community group. I’ve worked in countless places, many with large staffs. I’ve managed seven apartment buildings over the past twelve years. I have more family than I can count, even if there are so very few actual relationships among them. I have three years of college and went to a high school with some four hundred people per graduating class. Frankly speaking, in my younger years I was a he-ho. I know a lot of people from a lot of different places.Please do not be offended if I do not recognize you, even when we are in an environment we regularly share
This happened twice in department stores in the past week. The second time went well. Voice helped, and the person casually said something that identified from where we knew each other. As contact is still regular, he knew I probably couldn’t place him, and I think he was slightly flattered that I did correctly identify him.
The first incident went badly. First off, the person touched me as first contact. I was big on personal space even before I went blind. I mistook the touch as some ignoramus in the store bumping into someone he could not identify as blind. When he said my name, my sneer turned into a squint of trying to see to identify. There might not be as much difference between those two expressions as I might hope.
In those circumstances, I have become quick in waving my hand in front of my own face and saying I don’t see too well and asking who I am talking to.
Please ignore the fact that after that point, I have a hard time with the social grace of pretending to remember someone that I just don’t remember among the thousands of people who have passed through my life.
My advice in any circumstance is to identify yourself when you approach, and if we are outside the common environment where we met, indicate from where we know each other. And don’t be insulted..
I am not seeing too well.
When people approach me, more often than not, I cannot recognize them. I have always been good at voice identification, which helps. People with distinct body shapes provide better cues automatically.
Environment of where I know people narrows down the field, but is far from foolproof. The smaller of my two bowling leagues has an active roster of fifty-four people. The larger approaches eighty. More people are not on the active rosters. I’ve lived in same neighborhood for eighteen years. I’m in a successful community group. I’ve worked in countless places, many with large staffs. I’ve managed seven apartment buildings over the past twelve years. I have more family than I can count, even if there are so very few actual relationships among them. I have three years of college and went to a high school with some four hundred people per graduating class. Frankly speaking, in my younger years I was a he-ho. I know a lot of people from a lot of different places.Please do not be offended if I do not recognize you, even when we are in an environment we regularly share
This happened twice in department stores in the past week. The second time went well. Voice helped, and the person casually said something that identified from where we knew each other. As contact is still regular, he knew I probably couldn’t place him, and I think he was slightly flattered that I did correctly identify him.
The first incident went badly. First off, the person touched me as first contact. I was big on personal space even before I went blind. I mistook the touch as some ignoramus in the store bumping into someone he could not identify as blind. When he said my name, my sneer turned into a squint of trying to see to identify. There might not be as much difference between those two expressions as I might hope.
In those circumstances, I have become quick in waving my hand in front of my own face and saying I don’t see too well and asking who I am talking to.
Please ignore the fact that after that point, I have a hard time with the social grace of pretending to remember someone that I just don’t remember among the thousands of people who have passed through my life.
My advice in any circumstance is to identify yourself when you approach, and if we are outside the common environment where we met, indicate from where we know each other. And don’t be insulted..
Monday, December 5, 2011
Biochemically Speaking
My first setback after recovering from the October 2009 Cialis-induced vitreous hemorrhage happened in November 2010. Temper loss triggered the sudden release of a massive floater. The wedge shaped dark spot had spider web tendrils and a slight cloudy aura. I saw it appear like a ghost emerging from a wall, just instantly appearing where nothing had been there moments before.
The temper loss was not a tirade, but what I call one of my "low blood sugar, high blood pressure moments. The high blood pressure came from frustration and annoyance, the low blood sugar from not eating. When those two factors combine they cause a genuine biochemical reaction. Eating fixes the problem fairly quickly, bur until I eat, I am just not right.
The floater release happened while I worked on something minor at home. The task required my close-up vision. There’s always more difficulty and frustration in that. The eyeglasses could bring things in focus, but in needing to constantly look away, the refocus time on each of too many little parts then needing to see things a distance away. Anyone who’s looked across a room through a magnifying glass know it doesn’t work. It had been a morning of constant glasses on, refocus, look, glasses off, refocus, look, refocus, etc etc etc.
Tick
It’s easy for me to loose myself in what I am doing and loose track of time. Time loss is even more pronounced by the measure of how long it took me to do things, and I still have not relearned just how long some basic things now take. My insulin had been taken that morning and I had run into the "three hour surge" when the time release insulin first kicks in. The suddenly lowering blood sugar can make me testy.
Tick
Add in some minor mistakes that got me in a self abusive mindset.
Tick
The final straw came with a cat leaping on the table and "helping" by tossing around the little parts that I would never be able ton find if they hit the floor.
Tick
Boom
I will say now in complete honesty that no companion pet or person has ever been hurt or attacked during one of my low blood sugar, high blood pressure moments. Inanimate objects, yes, many have been smashed or kicked. I have hurt myself during these biochemically imbalanced fits, including a recent serious injury. But somehow, despite the loss of almost all rationale, I’ve always directed that bloodlust rage inwardly. The cats run when I start screaming like a lunatic.
Eating corrects the imbalance, but aftereffects remain. I often need to nap to fully reset my mood. The severe swing and my shame for how I can get can trigger a bout of depression that can last for days.
The tendency to fall into those uncontrollable rages has also saddled me with some control issues. I’, not a control freak; my control issues are matters self control., at least the way I see it. Given my overall strength of personality, however, not everyone sees me that way....!....
The temper loss was not a tirade, but what I call one of my "low blood sugar, high blood pressure moments. The high blood pressure came from frustration and annoyance, the low blood sugar from not eating. When those two factors combine they cause a genuine biochemical reaction. Eating fixes the problem fairly quickly, bur until I eat, I am just not right.
The floater release happened while I worked on something minor at home. The task required my close-up vision. There’s always more difficulty and frustration in that. The eyeglasses could bring things in focus, but in needing to constantly look away, the refocus time on each of too many little parts then needing to see things a distance away. Anyone who’s looked across a room through a magnifying glass know it doesn’t work. It had been a morning of constant glasses on, refocus, look, glasses off, refocus, look, refocus, etc etc etc.
Tick
It’s easy for me to loose myself in what I am doing and loose track of time. Time loss is even more pronounced by the measure of how long it took me to do things, and I still have not relearned just how long some basic things now take. My insulin had been taken that morning and I had run into the "three hour surge" when the time release insulin first kicks in. The suddenly lowering blood sugar can make me testy.
Tick
Add in some minor mistakes that got me in a self abusive mindset.
Tick
The final straw came with a cat leaping on the table and "helping" by tossing around the little parts that I would never be able ton find if they hit the floor.
Tick
Boom
I will say now in complete honesty that no companion pet or person has ever been hurt or attacked during one of my low blood sugar, high blood pressure moments. Inanimate objects, yes, many have been smashed or kicked. I have hurt myself during these biochemically imbalanced fits, including a recent serious injury. But somehow, despite the loss of almost all rationale, I’ve always directed that bloodlust rage inwardly. The cats run when I start screaming like a lunatic.
Eating corrects the imbalance, but aftereffects remain. I often need to nap to fully reset my mood. The severe swing and my shame for how I can get can trigger a bout of depression that can last for days.
The tendency to fall into those uncontrollable rages has also saddled me with some control issues. I’, not a control freak; my control issues are matters self control., at least the way I see it. Given my overall strength of personality, however, not everyone sees me that way....!....
Sunday, December 4, 2011
Storm of the Eye
When November 2010 rolled around, I had settled to my new status quo of being legally blind but functional. The vitreous hemorrhage induced thirteen months before by a dose of Cialis had left me legally blind, but I could do most things, even if with great difficulty. I am a strong person, too strong by some accounts. I’d rolled with some pretty severe punches and salvaged what I could. I was writing more short fiction and getting published more. I could drive myself, at least to places where I knew where I was going without having to distract myself by looking for landmarks instead of concentrating on the side of the road. I could read with the aide of eyeglasses so powerful I could burn ants with them on sunny days. Refocusing between different lighting and distances took time, but the eyes did adjust. I was off the generic Prozac, and dealing with my handicap and my usual seasonal depression. The drug had begun to mix with life’s circumstances to give me"suicidal thoughts and feelings," so I had thought it best to stop.
I had reclaimed enough of my life to satisfy my self control and self sufficiency issues.
I lost that to a diabetic "low blood sugar, high blood pressure" moment.
This time it exceeded the biochemical rage. Something in the eye popped and a large floater let loose. My vision hazed over in a smear of gray and a large dancing chunk of a black.
It may have been scar tissue that released from the inner eye. It may have been a retinapathy thing. I called my doc at Joslin Center. He wasn’t concerned enough about it to push up my next appointment. The release of floaters, it seems, is to be expected in an eye that had been so traumatized.
The visual effect matched the cloud from the original vitreous hemorrhage, only this time in gray rather than blood red.
Driving and reading were lost to me again. When bowling, my teammates needed to tell me what pins remained standing after the first throw. The TV became indecipherable jumbles of quick motions in black and white.
The momentary loss of self control led to a more sustained period of self control and self sufficiency. The depression, now a combination of seasonal effect, helplessness, boredom, and a natural downswing of shame for the biochemical temper loss, worsened..
I had reclaimed enough of my life to satisfy my self control and self sufficiency issues.
I lost that to a diabetic "low blood sugar, high blood pressure" moment.
This time it exceeded the biochemical rage. Something in the eye popped and a large floater let loose. My vision hazed over in a smear of gray and a large dancing chunk of a black.
It may have been scar tissue that released from the inner eye. It may have been a retinapathy thing. I called my doc at Joslin Center. He wasn’t concerned enough about it to push up my next appointment. The release of floaters, it seems, is to be expected in an eye that had been so traumatized.
The visual effect matched the cloud from the original vitreous hemorrhage, only this time in gray rather than blood red.
Driving and reading were lost to me again. When bowling, my teammates needed to tell me what pins remained standing after the first throw. The TV became indecipherable jumbles of quick motions in black and white.
The momentary loss of self control led to a more sustained period of self control and self sufficiency. The depression, now a combination of seasonal effect, helplessness, boredom, and a natural downswing of shame for the biochemical temper loss, worsened..
Saturday, December 3, 2011
The Long and Winding Road
In October 2009 I took a Cialis to counteract the ill effects of taking antidepressants that I needed after having gotten my diabetes "under better control." I woke the following morning to see a vitreous hemorrhage gushing blood in my only good eye.
Blood filled the center of the eye and an existing cataract. I got scared into PRP surgery, with sessions before and after the cataract procedure. As neither doctor involved bothered to tell me that both PRP laser and cataract surgery increase risks of diabetic retinapathy, I was foolishly surprised when retinapathy developed while I was still undergoing the PRP
I was also not told of lense options for the cataract. I did not understand why I had NO reading vision while old men I knew had no problem reading with their new cataract lenses.
By summer of 2010 I was finding my new groove in life. I could not do some things at all, could do others with increased effort and caution, and could almost carry on with other things like my old self.
The more familiar I had been with what I was doing before going blind, the better I could handle it blind .
This blog is one guy’s personal and subjective experience, but it contains important take aways for general readers, particularly diabetics and eye patients. I have been accused of being a caustic cynic long before I ever started blogging.
By law of averages alone, I can’t be as dumb as I look. One important objective of this bit of cyberspace is to throw out ideas and experiences that should be given some thought by patients.
These warnings include:
Ask every question of your doctors, because they may not tell you.
Do your own thorough research on any procedure before undergoing it. Be sure to include the term "risk factor" or "side effect" in your search terms.
Diabetic light sensitivity may be caused by the routine dilation treatments during exams.
You have a right to your medical records and you should be familiar with them.
When you find a good doctor who is knowledgeable about his field and honest to you when he just doesn’t know, hold on to him. No one knows it all and the arrogant doctor who pretends to know everything can do you more harm than someone who recognizes and admits his limitations.
Treat people who developed physical handicaps late in life as you did before, and like they were whole people. Blindness and amputations are not catchy. Humor is what we gimps usually need most.
Appreciate those around you!
Blood filled the center of the eye and an existing cataract. I got scared into PRP surgery, with sessions before and after the cataract procedure. As neither doctor involved bothered to tell me that both PRP laser and cataract surgery increase risks of diabetic retinapathy, I was foolishly surprised when retinapathy developed while I was still undergoing the PRP
I was also not told of lense options for the cataract. I did not understand why I had NO reading vision while old men I knew had no problem reading with their new cataract lenses.
By summer of 2010 I was finding my new groove in life. I could not do some things at all, could do others with increased effort and caution, and could almost carry on with other things like my old self.
The more familiar I had been with what I was doing before going blind, the better I could handle it blind .
This blog is one guy’s personal and subjective experience, but it contains important take aways for general readers, particularly diabetics and eye patients. I have been accused of being a caustic cynic long before I ever started blogging.
By law of averages alone, I can’t be as dumb as I look. One important objective of this bit of cyberspace is to throw out ideas and experiences that should be given some thought by patients.
These warnings include:
Ask every question of your doctors, because they may not tell you.
Do your own thorough research on any procedure before undergoing it. Be sure to include the term "risk factor" or "side effect" in your search terms.
Diabetic light sensitivity may be caused by the routine dilation treatments during exams.
You have a right to your medical records and you should be familiar with them.
When you find a good doctor who is knowledgeable about his field and honest to you when he just doesn’t know, hold on to him. No one knows it all and the arrogant doctor who pretends to know everything can do you more harm than someone who recognizes and admits his limitations.
Treat people who developed physical handicaps late in life as you did before, and like they were whole people. Blindness and amputations are not catchy. Humor is what we gimps usually need most.
Appreciate those around you!
Wednesday, November 30, 2011
Deepening Darkness
I got dilated Monday, or rather my eyes got dilated. The new doctor I have been seeing is pretty good and came recommended by a tenant. This appointment was the first in almost two months, and the time in between has not been kind to the old peepers. This seems the right time to go over how my sight is these days before I continue on the track of how I got here.
Simply put, things are bad with a complication of advancing retinapathy and a lot of gunk in the central eye cavity.
The retinapathy is darkening things on its own. What I left in the ongoing narrative has closed in past the borders of the cataract lense. Things progressed past the point of floors looking wavy. I look at the glowing rectangle of the TV and the entire box is warped.
Flashers streak by with some regularity, most often when a light change hits the eye, often even when the lid is closed.
Floaters could be from the retinapathy or the vitreous hemorrhage or both. They swum in and out of my vision with regularity.
Other problems remain the domain of the hemorrhage, lingering effects of the blood that poured into my eye after that fateful dose of Cialis that I never took advantage of.
My color sense in the eye is all but gone. I see reds best, then blues. I know this is not a retinapathy thing from my own experience. If I switch to looking at the TV through the dark-blind eye, the colors are spectacular through that cataract-clouded pinhole.
Distance refocusing remains a problem that has also gotten worse. I cannot focus near-sightedness at all. That magnifying glass I occasionally wear doesn’t help. Even with the glasses I make out what kind of soup is in the can by word shape rather than actual reading. Things smaller than that have become outright impossible to achieve and torturous to try.
Light is also an active memory. There’s too much or not enough in most circumstances. Street lights are too bright to look at, yet it seems that none of their brightness reaches the ground. Judging from the peculiarities of the dark eye, this is also well beyond just retinapathy. My pupil is not working right. When light hits it, the whole eye glows even after the source of light has diminished.
A while back my roommate noticed that I can’t even pretend that I’m not blind anymore. Things have gotten significantly worse even in the time since I started this blog.
Further surgery is inevitable and something I am gung ho to do. The plan is retina re-attachment and vitreous gel draining. There’s just some other logistical complications that need to be worked out first.
Nothing is stated here to promote woe is me sympathy, but to answer the bigger questions of what I can see now. Everything is in overexposed shadow seen through dense fog. Acquaintances need to understand that I cannot often recognize who I am talking to at first. I can do less when my eye gets tired, so everything is slower. I’, not without my successes, but they require more and ever more effort to achieve.
Simply put, things are bad with a complication of advancing retinapathy and a lot of gunk in the central eye cavity.
The retinapathy is darkening things on its own. What I left in the ongoing narrative has closed in past the borders of the cataract lense. Things progressed past the point of floors looking wavy. I look at the glowing rectangle of the TV and the entire box is warped.
Flashers streak by with some regularity, most often when a light change hits the eye, often even when the lid is closed.
Floaters could be from the retinapathy or the vitreous hemorrhage or both. They swum in and out of my vision with regularity.
Other problems remain the domain of the hemorrhage, lingering effects of the blood that poured into my eye after that fateful dose of Cialis that I never took advantage of.
My color sense in the eye is all but gone. I see reds best, then blues. I know this is not a retinapathy thing from my own experience. If I switch to looking at the TV through the dark-blind eye, the colors are spectacular through that cataract-clouded pinhole.
Distance refocusing remains a problem that has also gotten worse. I cannot focus near-sightedness at all. That magnifying glass I occasionally wear doesn’t help. Even with the glasses I make out what kind of soup is in the can by word shape rather than actual reading. Things smaller than that have become outright impossible to achieve and torturous to try.
Light is also an active memory. There’s too much or not enough in most circumstances. Street lights are too bright to look at, yet it seems that none of their brightness reaches the ground. Judging from the peculiarities of the dark eye, this is also well beyond just retinapathy. My pupil is not working right. When light hits it, the whole eye glows even after the source of light has diminished.
A while back my roommate noticed that I can’t even pretend that I’m not blind anymore. Things have gotten significantly worse even in the time since I started this blog.
Further surgery is inevitable and something I am gung ho to do. The plan is retina re-attachment and vitreous gel draining. There’s just some other logistical complications that need to be worked out first.
Nothing is stated here to promote woe is me sympathy, but to answer the bigger questions of what I can see now. Everything is in overexposed shadow seen through dense fog. Acquaintances need to understand that I cannot often recognize who I am talking to at first. I can do less when my eye gets tired, so everything is slower. I’, not without my successes, but they require more and ever more effort to achieve.
Sunday, November 27, 2011
Sloshing thru the Muck
I really want to maintain some kind of positive balance, to say something nice (but true) about any doctor I mention here as I go over my experiences with each in this long, crazy account of going blind.
When it comes to Deborah Schlossman, I can’t. I want to Joslin Diabetes Center for a fresh start and to resume monitoring the failing eye and perhaps find treatments to save what I could.
Instead, the records I had sent were not to be found and I met Dr Schlossman
She concentrated on the long-dark eye that I said was a secondary concern compared to the active diminishment in the left eye.
Her treatment held little more than an appointment to see her again some other time.
She utterly failed to listen to her patient’s concerns and had left the building for the day at noon before the technician could photograph my eyes..
She put notes I my records that indicated she had seen and spoken with me far more extensively than she actually did, including medical precautions of do’s and don’t’s that she never said to me. I still wonder id this was some kind of medical malpractice buffer or if she was just "proving" to her bosses at Joslin that she is some great employee rather than the lazy hack she proved herself to be to me.
I’ve worked in plenty of places where the good employees compensated for the useless ones, so perhaps I should not be surprised that the medical profession has its share as well.
As one of two other Joslin doctors who saw me that same day, Doctor Paul Arrigg compensated for Schlossman. Nothing could be done about the missing records, but I maintained hope that actually having looked at the eye would restart the Joslin experience in a good way.
When it comes to Deborah Schlossman, I can’t. I want to Joslin Diabetes Center for a fresh start and to resume monitoring the failing eye and perhaps find treatments to save what I could.
Instead, the records I had sent were not to be found and I met Dr Schlossman
She concentrated on the long-dark eye that I said was a secondary concern compared to the active diminishment in the left eye.
Her treatment held little more than an appointment to see her again some other time.
She utterly failed to listen to her patient’s concerns and had left the building for the day at noon before the technician could photograph my eyes..
She put notes I my records that indicated she had seen and spoken with me far more extensively than she actually did, including medical precautions of do’s and don’t’s that she never said to me. I still wonder id this was some kind of medical malpractice buffer or if she was just "proving" to her bosses at Joslin that she is some great employee rather than the lazy hack she proved herself to be to me.
I’ve worked in plenty of places where the good employees compensated for the useless ones, so perhaps I should not be surprised that the medical profession has its share as well.
As one of two other Joslin doctors who saw me that same day, Doctor Paul Arrigg compensated for Schlossman. Nothing could be done about the missing records, but I maintained hope that actually having looked at the eye would restart the Joslin experience in a good way.
Saturday, November 26, 2011
Rights to Records
I first went to the eye clinic in Boston’s Joslin Center during the summer of 2010. The new course of treatment I had planned did not start well. Records I had sent in advance were missing; Doctor Deborah Schlossman met with me long enough to only make a future appointment to coordinate procedures on the dark-blind eye in coordination with another doctor and had sent me on my way without discussing the more immediate problem of my faltering left eye. I was not dissatisfied with that situation and let the desk know it. As far as IU was concerned, I had not been treated or examined for the problems I had gone there for, and I insisted on seeing a doctor who would actually treat me. They accommodated.
This took time. I ended up at the clinic for hours, mostly waiting in an examination room while doctors with their own caseloads had to accommodate for Deborah Schlossman’s rush to leave for the day at lunchtime.
The time alone in the room with the records Schlossman had created showed me that Schlossman’s misconduct exceeded ordinary laziness.
She had stated in those records that she had discussed the left eye with me, including a notation that she had told me not to lift anything heavy.
That detail could have sent me berserk. I had been told nothing of the sort, I had been trying to get back into my work, which often included physical exertion throughout the day. Such a note had been put in my record without it being discussed with me; I did not even know what her definition of "heavy" would be or what limits I should try to impose on myself.
The take away for the readers here is this: you have every right to access your own medical records. You should exercise this right and be aware of what your doctors are not telling you, as well as things they might add only in a way that might make it easy to forget among the course of a longer examination.
If the doctor or facilities deny you this right or want to impose additional hefty fees for this, you should start looking for other treatment. It will only get worse from there.
This took time. I ended up at the clinic for hours, mostly waiting in an examination room while doctors with their own caseloads had to accommodate for Deborah Schlossman’s rush to leave for the day at lunchtime.
The time alone in the room with the records Schlossman had created showed me that Schlossman’s misconduct exceeded ordinary laziness.
She had stated in those records that she had discussed the left eye with me, including a notation that she had told me not to lift anything heavy.
That detail could have sent me berserk. I had been told nothing of the sort, I had been trying to get back into my work, which often included physical exertion throughout the day. Such a note had been put in my record without it being discussed with me; I did not even know what her definition of "heavy" would be or what limits I should try to impose on myself.
The take away for the readers here is this: you have every right to access your own medical records. You should exercise this right and be aware of what your doctors are not telling you, as well as things they might add only in a way that might make it easy to forget among the course of a longer examination.
If the doctor or facilities deny you this right or want to impose additional hefty fees for this, you should start looking for other treatment. It will only get worse from there.
Eye Climic at Joslin Diabetes Center
Although I had decided I would not go to Koch Eye Associates again, I needed to have the eye monitored and tracked. I had been done badly by Koch and had been disillusioned by the Rhode Island doctor who is considered best, Harold Woodcomb. I had also been disillusioned by Massachusetts Eye and Ear. When I get disillusioned, I walk away.
I chose to go to the eye clinic at Joslin Center. They’re rated as one of the best diabetes hospitals in the world. I had enough problems and paid for all medical expenses out of pocket, so I did not want to waste time and money shopping around for second rate doctors.
Yet again, I was off to a rocky start.
The technician who made the preliminary exam stated they could not find the medical records that I had e-mailed to them when I made the appointment, so Joslin would be running with no documented history.
I saw Doctor Deborah K. Schlossman late on a Friday morning. I had high hopes in going there.
Doctor Schlossman looked things over quickly after I told her the circumstances that had brought me to Joslin. I bit my lip when she seemed to concentrate on the long "dead" right eye with plans of what might be done for it. I might have been more eager to hear those plans if she had made any reference as to what could be done for the problematic left eye. I was more interested in preventing further loss of vision than getting greedy to seize what I could for the right eye. He plans amounted to cataract surgery on the right eye and retinal re-attachment and instructions that IU make an appointment with her in conjunction with one of Joslin’s cataract doctors. She then sent me in to photography.
When the photographer had done her thing, she told me to have a nice weekend.
Imagine my surprise that Dr Schlossman hadn’t planned on looking over the photographs of my mangles eyes and going over her assessment of the left eye with me.
Imagine the photographer’s surprise when I told her that I had come for treatment for the left eye and that I wasn’t leaving without some. Confusion ensued, in part because Dr Schlossman had left for the day immediately after seeing me.
While I do not know the specifics, I was not the only patient upset with Schlossman that day. The photographer told another patient something along the lines of "You can join Mr. Kozzi with that complaint."
I heard that while waiting to be squeezed in by another doctor, and it made me think that at least this time I had some independent clue at the time that it wasn’t just me.
Not that the thought provided any relief....
I chose to go to the eye clinic at Joslin Center. They’re rated as one of the best diabetes hospitals in the world. I had enough problems and paid for all medical expenses out of pocket, so I did not want to waste time and money shopping around for second rate doctors.
Yet again, I was off to a rocky start.
The technician who made the preliminary exam stated they could not find the medical records that I had e-mailed to them when I made the appointment, so Joslin would be running with no documented history.
I saw Doctor Deborah K. Schlossman late on a Friday morning. I had high hopes in going there.
Doctor Schlossman looked things over quickly after I told her the circumstances that had brought me to Joslin. I bit my lip when she seemed to concentrate on the long "dead" right eye with plans of what might be done for it. I might have been more eager to hear those plans if she had made any reference as to what could be done for the problematic left eye. I was more interested in preventing further loss of vision than getting greedy to seize what I could for the right eye. He plans amounted to cataract surgery on the right eye and retinal re-attachment and instructions that IU make an appointment with her in conjunction with one of Joslin’s cataract doctors. She then sent me in to photography.
When the photographer had done her thing, she told me to have a nice weekend.
Imagine my surprise that Dr Schlossman hadn’t planned on looking over the photographs of my mangles eyes and going over her assessment of the left eye with me.
Imagine the photographer’s surprise when I told her that I had come for treatment for the left eye and that I wasn’t leaving without some. Confusion ensued, in part because Dr Schlossman had left for the day immediately after seeing me.
While I do not know the specifics, I was not the only patient upset with Schlossman that day. The photographer told another patient something along the lines of "You can join Mr. Kozzi with that complaint."
I heard that while waiting to be squeezed in by another doctor, and it made me think that at least this time I had some independent clue at the time that it wasn’t just me.
Not that the thought provided any relief....
Thursday, November 24, 2011
Summer 2010, My Golden Age of Blindness
Through Spring, Summer and Fall of 2010, my vision got steadily better as my eye recovered from the Cialis-induced hemorrhage. The retinapathy that started with the PRP treatment advanced, but stopped at the border of the artificial lense put into my eye to fix the cataract. Glasses helped me read again, an ability I’d lost because Dr. God had, without patient consultation, chosen a lense that did not provide any close-up vision. Reading would never be comfortable, but I convinced myself to be grateful that I could do it all.www.kozzi.us.)
Combined with the dark-blind right eye, the loss of peripheral vision rendered me permanently legally blind. Nothing makes up for the loss, but with difficulty, I could function.
The retinapathy in the left eye darkened the vision to a circle, giving me tunnel vision.
Focusing also became a permanent problem. Changes in lighting required a long adjustment time, and angle of light could prove problematic. The artificial lense of the cataract surgery delayed distance refocusing. Change both distance and light at one, and I became pretty useless for a while.
I could drive without too much of a problem. The further away I focused, the wider the opening of the tunnel appeared. At that point, it became easier to drive to the supermarket than to walk around inside it. I could not see anyone who stepped beside me, so when I step to the side, I collide. Refocusing on reading labels to walking down the aisle requires time. I took to getting out of others’ way, letting crowds pass to avoid bumping into people and to maintain some buffer of personal space. The harder I tried to stay out of the way, the testier I got when other people keep getting in mine. That frustration has not eased with time.
At bowling I had to maintain focus on the pins. Checking the scoreboard displays triggered an extreme change in both light and distance that made my next frame suffer. I got in the habit of asking how the game was when each game finished. My bowling seemed to improve for the lack of self distraction.
I looked at the time since the hemorrhage as completely lost time. I worked as fast as I could on my fiction writing and on my other responsibilities. It did not take long to learn that "as fast as I could" fell short of my desires. I concentrated on short stories. Some of those written in 2010 have already seen publication. Publication can take a long time under the best circumstances, so I take great pride in how quickly "Advance Gratitude," "A Pediatrician in Wartime" and "The Thirteenth Day on Kurko" found homes in paper pages. (Shameless plug: those three and other anthologies can be found for purchase on my home site
The other consideration at that time remained medical treatment of the eye. With the eye already a mess, I knew I could not go without close monitoring. I did not wanted the situation to get worse....
Combined with the dark-blind right eye, the loss of peripheral vision rendered me permanently legally blind. Nothing makes up for the loss, but with difficulty, I could function.
The retinapathy in the left eye darkened the vision to a circle, giving me tunnel vision.
Focusing also became a permanent problem. Changes in lighting required a long adjustment time, and angle of light could prove problematic. The artificial lense of the cataract surgery delayed distance refocusing. Change both distance and light at one, and I became pretty useless for a while.
I could drive without too much of a problem. The further away I focused, the wider the opening of the tunnel appeared. At that point, it became easier to drive to the supermarket than to walk around inside it. I could not see anyone who stepped beside me, so when I step to the side, I collide. Refocusing on reading labels to walking down the aisle requires time. I took to getting out of others’ way, letting crowds pass to avoid bumping into people and to maintain some buffer of personal space. The harder I tried to stay out of the way, the testier I got when other people keep getting in mine. That frustration has not eased with time.
At bowling I had to maintain focus on the pins. Checking the scoreboard displays triggered an extreme change in both light and distance that made my next frame suffer. I got in the habit of asking how the game was when each game finished. My bowling seemed to improve for the lack of self distraction.
I looked at the time since the hemorrhage as completely lost time. I worked as fast as I could on my fiction writing and on my other responsibilities. It did not take long to learn that "as fast as I could" fell short of my desires. I concentrated on short stories. Some of those written in 2010 have already seen publication. Publication can take a long time under the best circumstances, so I take great pride in how quickly "Advance Gratitude," "A Pediatrician in Wartime" and "The Thirteenth Day on Kurko" found homes in paper pages. (Shameless plug: those three and other anthologies can be found for purchase on my home site
The other consideration at that time remained medical treatment of the eye. With the eye already a mess, I knew I could not go without close monitoring. I did not wanted the situation to get worse....
Thanksgiving
This is the appropriate day to specifically reflect on what I have to be thankful for.
That can be a tall order. Little more than two years ago, I was blind in one eye, but fully functional, self sufficient and independent.
I left the narrative in summer of 2010 when I was regaining some function. Things have gotten more complicated since then, and to spoil things towards "the ending" things have gotten worse even since I started this blog a little more than a month ago. The typing, proofreading and spellchecking are all more difficult now than those things were a month or so ago.
I am grateful that I still have some hope that some things can be done to make things better.
I am grateful that I have retained my sense of humor, and I give kudos again to the bowling partner whose surly humor directed at me helps ensure that I hold on to the ability to laugh at myself as well as others. Most of the real cutting edge humor is born of anger, and the situation has ensured that my lifelong comedic talents–which some people insist exist only in my own head–remain.
I appreciate the friend mentioned in an earlier post as having gotten into a fender bender in my vehicle while driving me for groceries. He in particular has been a rock for me through this. My appreciation is boundless.
I appreciate my roommate, someone who had remained in residence over the years mostly because I can cook and I had always been the rock he leaned on. We don’t always get along so smoothly. There’s aspects to the going blind decline that he just doesn’t get and psychologically can’t get. But he sees the worst of my bad moods and despair, and has done his best to adjust to the role reversal of my becoming the needy one.
I appreciate the bowling partners past and present who have provided transportation to get me there each week. I have been largely homebound aside this very odd activity for a blind guy. All of my teammates in all leagues over the past two years have been great in emphasizing that they didn’t care about scores or rankings that suffered for my disability. We’re all there to have a good time. One actually was not supportive and helpful, but he can be very hard to like anyway, so I appreciate that he chose not to bowl with me the following year;
I appreciate the tenants who have been patient and helpful as my capacity diminished. Those who refused to accommodate are gone now, and I appreciate that fact as well.
There’s countless other people who have provided rides or little favors, whether one-time or recurring. I have gotten very used to being the curmudgeon who goes it alone, so I am amazed and so very grateful that this hellish situation has shown me some very appealing sides to the people I have chosen to be around me in the days when I truly didn’t need anybody.
That can be a tall order. Little more than two years ago, I was blind in one eye, but fully functional, self sufficient and independent.
I left the narrative in summer of 2010 when I was regaining some function. Things have gotten more complicated since then, and to spoil things towards "the ending" things have gotten worse even since I started this blog a little more than a month ago. The typing, proofreading and spellchecking are all more difficult now than those things were a month or so ago.
I am grateful that I still have some hope that some things can be done to make things better.
I am grateful that I have retained my sense of humor, and I give kudos again to the bowling partner whose surly humor directed at me helps ensure that I hold on to the ability to laugh at myself as well as others. Most of the real cutting edge humor is born of anger, and the situation has ensured that my lifelong comedic talents–which some people insist exist only in my own head–remain.
I appreciate the friend mentioned in an earlier post as having gotten into a fender bender in my vehicle while driving me for groceries. He in particular has been a rock for me through this. My appreciation is boundless.
I appreciate my roommate, someone who had remained in residence over the years mostly because I can cook and I had always been the rock he leaned on. We don’t always get along so smoothly. There’s aspects to the going blind decline that he just doesn’t get and psychologically can’t get. But he sees the worst of my bad moods and despair, and has done his best to adjust to the role reversal of my becoming the needy one.
I appreciate the bowling partners past and present who have provided transportation to get me there each week. I have been largely homebound aside this very odd activity for a blind guy. All of my teammates in all leagues over the past two years have been great in emphasizing that they didn’t care about scores or rankings that suffered for my disability. We’re all there to have a good time. One actually was not supportive and helpful, but he can be very hard to like anyway, so I appreciate that he chose not to bowl with me the following year;
I appreciate the tenants who have been patient and helpful as my capacity diminished. Those who refused to accommodate are gone now, and I appreciate that fact as well.
There’s countless other people who have provided rides or little favors, whether one-time or recurring. I have gotten very used to being the curmudgeon who goes it alone, so I am amazed and so very grateful that this hellish situation has shown me some very appealing sides to the people I have chosen to be around me in the days when I truly didn’t need anybody.
Wednesday, November 23, 2011
Feedback 2
I have made some specific approaches to the blog.
I’m a guy, so I use the masculine pronoun. I was never that fond of the overly PC BS anyway. Womankind is part of mankind. Get over it.
I have also chosen to use the masculine pronoun in reference to all friends and acquaintances mentioned in this blog, no matter what circumstance I am discussing, whether kudos to someone who has been there or some ignoramus who got in my way.
Someone had said specifically not to name him on the internet. I’m not so sure I would have reason to anyway, but he got me thinking about people’s privacy. I don’t need to publicly call out or embarrass people even if they deserve it. I’m not afraid to, believe me. But I am better at holding my tongue than most people realize, if there is nothing to be gained from the ensuing argument. I’m not afraid to pick fights, but I am just smart enough to choose my battles.
To those who would want to be named for their good deeds, you have my advance apologies. If I tell people of intent to mention them, they might want an advance read, and I’m not going to open myself up to potential content editing on my own blog. Those who I appreciate know it, even if other shades of gray creep into relationships.
My regard for others’ privacy does not extend to doctors, you may have noticed. They work in the public and people should have as much input as possible when selecting people for their own care. I do strive for balance in my overall subjective experience, even if that is only really visible across several posts on a subject or event rather than in a single post. The search feature is enabled to find all posts that mention a specific doctor or term. The comments section for each post is also open. I may respond, but guarantee in advance I will only argue two cycles about a disagreement comment. I may also choose not to respond directly or do a "Feedback" post at a later time.
In a blog meant to be about my experiences as a diabetic and a blind guy, I think I have that right, just as you have the right to start your own blog.
But this is my party and I will decry if I want to.
I’m a guy, so I use the masculine pronoun. I was never that fond of the overly PC BS anyway. Womankind is part of mankind. Get over it.
I have also chosen to use the masculine pronoun in reference to all friends and acquaintances mentioned in this blog, no matter what circumstance I am discussing, whether kudos to someone who has been there or some ignoramus who got in my way.
Someone had said specifically not to name him on the internet. I’m not so sure I would have reason to anyway, but he got me thinking about people’s privacy. I don’t need to publicly call out or embarrass people even if they deserve it. I’m not afraid to, believe me. But I am better at holding my tongue than most people realize, if there is nothing to be gained from the ensuing argument. I’m not afraid to pick fights, but I am just smart enough to choose my battles.
To those who would want to be named for their good deeds, you have my advance apologies. If I tell people of intent to mention them, they might want an advance read, and I’m not going to open myself up to potential content editing on my own blog. Those who I appreciate know it, even if other shades of gray creep into relationships.
My regard for others’ privacy does not extend to doctors, you may have noticed. They work in the public and people should have as much input as possible when selecting people for their own care. I do strive for balance in my overall subjective experience, even if that is only really visible across several posts on a subject or event rather than in a single post. The search feature is enabled to find all posts that mention a specific doctor or term. The comments section for each post is also open. I may respond, but guarantee in advance I will only argue two cycles about a disagreement comment. I may also choose not to respond directly or do a "Feedback" post at a later time.
In a blog meant to be about my experiences as a diabetic and a blind guy, I think I have that right, just as you have the right to start your own blog.
But this is my party and I will decry if I want to.
Tuesday, November 22, 2011
Extra Effort
One of the neighbors I spoke of in the last post is also the one who came closest to actually offending me about my disability. He did this with a simple statement, "You’re not really blind" in reaction to some things I had generated on the computer.
I specifically chose not to be offended. Instead I took it as a compliment on the quality of work I had produced. I pretty much also figure he feels some shame for not being able to do something relatively basic as well as a blind guy can do it.
I have no history of feigning illness to get out of work or escape responsibilities. My attendance record on jobs and other commitments is well above average. If I had a history of slacking, maybe his ignorant comment would be warranted.
Instead, I have overcompensated for my new and increasing disability. Whenever possible, I walk without direct assistance. I do not use a cane for a few reasons. First, I think it is labeling myself in a way that will corrode my self concept. It labels me as blind to others, and in this economy of robberies and other desperate crimes, the cane amounts to a target sign. I would hate to embarrass such ne’er-do-wells by having them get a public beat down by a scrawny blind guy. And my original joke-line excuse remains: if I expend effort to stay out of others’ way and then they get in my way anyway, I will get frustrated enough to beat them with the cane.
I do make genuine effort to let anyone else get around me first. Shopping takes much longer because of this. I shouldn’t have to carry a cane to make other people more aware of or more comfortable with my disability.
Fat people seem to be most offended by this. I assume they are most used to being seen under any circumstances. I see mostly by motion and contrast. If fat folks’ stretchy clothes are colors that blend into the background of the environment and they’re moving slowly as fat people typically do, it’s easy to miss them.
I have spent the last two years pretending to be more capable than I am, trying to remain a whole person. It takes a lot of effort and determination, sometimes more than it seems worth. My roommate has pointed out that I am becoming less able to pretend. In group situations when those around me change or someone walking by says hello, I am being more open about not usually knowing to whom I am talking to.
I figure if someone doesn’t understand that, he’s probably not worth talking to anyway.
I specifically chose not to be offended. Instead I took it as a compliment on the quality of work I had produced. I pretty much also figure he feels some shame for not being able to do something relatively basic as well as a blind guy can do it.
I have no history of feigning illness to get out of work or escape responsibilities. My attendance record on jobs and other commitments is well above average. If I had a history of slacking, maybe his ignorant comment would be warranted.
Instead, I have overcompensated for my new and increasing disability. Whenever possible, I walk without direct assistance. I do not use a cane for a few reasons. First, I think it is labeling myself in a way that will corrode my self concept. It labels me as blind to others, and in this economy of robberies and other desperate crimes, the cane amounts to a target sign. I would hate to embarrass such ne’er-do-wells by having them get a public beat down by a scrawny blind guy. And my original joke-line excuse remains: if I expend effort to stay out of others’ way and then they get in my way anyway, I will get frustrated enough to beat them with the cane.
I do make genuine effort to let anyone else get around me first. Shopping takes much longer because of this. I shouldn’t have to carry a cane to make other people more aware of or more comfortable with my disability.
Fat people seem to be most offended by this. I assume they are most used to being seen under any circumstances. I see mostly by motion and contrast. If fat folks’ stretchy clothes are colors that blend into the background of the environment and they’re moving slowly as fat people typically do, it’s easy to miss them.
I have spent the last two years pretending to be more capable than I am, trying to remain a whole person. It takes a lot of effort and determination, sometimes more than it seems worth. My roommate has pointed out that I am becoming less able to pretend. In group situations when those around me change or someone walking by says hello, I am being more open about not usually knowing to whom I am talking to.
I figure if someone doesn’t understand that, he’s probably not worth talking to anyway.
Sunday, November 20, 2011
Good Neighbors
The best approach to most patients losing their eyesight is a nonchalant "If you need help with that, just let me know." The patient will know he has help if needed, but feels free to try on his own.
One key to this is to make your offer sincere. If you don’t want to help, keep your mouth shut and don’t make any offers. Just stick to "I’m so sorry to see what happened. Sorry you can’t."
OK, leave off the last part. Not many people share my sense of humor.
One of the worst things is to think you’re being polite and charitable as a means of showing support, then huffing or rolling your eyes if the blind guy ever has the bad manners to take you up on your offer. One neighbor told me to let him know if I ever needed a ride from a recurring local event. I gave sincere thanks and remembered the offer. When I did ask one night, he spent more time asking around for someone willing to drive me the six blocks than it would have taken him to give the ride that had been offered. Any number of excuses may be possible or legitimate, but none could diminish how I felt when I heard him start peddling me off.
Another neighbor, this one more typically ignorant to begin with, pulled over in traffic when he saw me walking the opposite way on a cold and rainy day in April 2010. He talked to me for four minutes or so. When I asked for a ride to my destination three blocks away, he told me he couldn’t because he was heading in the opposite direction.
Newsflash, neighbor: you’re nowhere near interesting enough to talk to that I feel honored that you took time out of your day to partially pull over to say hello and tell me about your life while you obstructed traffic on a city thruway and I got wetter and colder than I would have if I had just waved and continued walking.
I would have even used all five fingers in that wave, which is something I can no longer guarantee you.
One key to this is to make your offer sincere. If you don’t want to help, keep your mouth shut and don’t make any offers. Just stick to "I’m so sorry to see what happened. Sorry you can’t."
OK, leave off the last part. Not many people share my sense of humor.
One of the worst things is to think you’re being polite and charitable as a means of showing support, then huffing or rolling your eyes if the blind guy ever has the bad manners to take you up on your offer. One neighbor told me to let him know if I ever needed a ride from a recurring local event. I gave sincere thanks and remembered the offer. When I did ask one night, he spent more time asking around for someone willing to drive me the six blocks than it would have taken him to give the ride that had been offered. Any number of excuses may be possible or legitimate, but none could diminish how I felt when I heard him start peddling me off.
Another neighbor, this one more typically ignorant to begin with, pulled over in traffic when he saw me walking the opposite way on a cold and rainy day in April 2010. He talked to me for four minutes or so. When I asked for a ride to my destination three blocks away, he told me he couldn’t because he was heading in the opposite direction.
Newsflash, neighbor: you’re nowhere near interesting enough to talk to that I feel honored that you took time out of your day to partially pull over to say hello and tell me about your life while you obstructed traffic on a city thruway and I got wetter and colder than I would have if I had just waved and continued walking.
I would have even used all five fingers in that wave, which is something I can no longer guarantee you.
Saturday, November 19, 2011
The Right Approach
Worse than being blind is the process of going blind. The blind guy is constantly having to adjust to and accept new, ever-increasing limitations.
Yes, the patient may be resistant to losing yet another element of self sufficiency. There’s a whirlwind of negativity that the patient feels. Self worth and capability decline with sight.
Getting mad at the stubborn blind fool will only escalate the downward spiral.
Ripping a childproof line-up-the-arrows aspirin bottle from the blind guy’s hand will not alleviate his headache. One of my bowling partners deals with me with abrasive humor, something I deal with especially well but may not work so well with other people. After the first time of trying to snatch the bottle away, he employed humor to much better result.
"I’m timing you, and this is getting boring...still timing you...still timing you...still timing you...."
"Taking bets! Fifty says the bottle wins over the blind guy!"
"You’re getting frustrated with that and I’m getting frustrated watching you. Can I help?"
"I’m recording this with my phone, so unless you want your ten minute fight with that all over U-tube, let me help."
Somehow
Those small but growing inabilities add up. The list of things I can do with my remaining vision seems to get shorter every day. Something as simple as opening an aspirin bottle can be a major headache.
Snatching things out of blind hands or just taking over something are not approaches that work without further eroding the patent’s confidence.
My teammate’s approach wouldn’t work on everyone. The lack of malice in the "mean" humor and the sincere offer of help carried it for ne, even while that teammate’s general attitude that developed over years of friendship caused a newer teammate to quit the team.
The best approach to most patients is a nonchalant "If you need help with that, just let me know." The patient will know he has help if needed, but feels free to try on his own., he trained me to just hand over the bottle when I need to open it. Admittedly, that is a lot easier than trying to gnaw open the bottle. This approach appealed to me not just because I have a similar rough sense of humor, but because fewer people interact with me as a whole person. Sometimes I become a project, other times a magnet for quiet unease because people don’t know what to say to a blind guy.
Yes, the patient may be resistant to losing yet another element of self sufficiency. There’s a whirlwind of negativity that the patient feels. Self worth and capability decline with sight.
Getting mad at the stubborn blind fool will only escalate the downward spiral.
Ripping a childproof line-up-the-arrows aspirin bottle from the blind guy’s hand will not alleviate his headache. One of my bowling partners deals with me with abrasive humor, something I deal with especially well but may not work so well with other people. After the first time of trying to snatch the bottle away, he employed humor to much better result.
"I’m timing you, and this is getting boring...still timing you...still timing you...still timing you...."
"Taking bets! Fifty says the bottle wins over the blind guy!"
"You’re getting frustrated with that and I’m getting frustrated watching you. Can I help?"
"I’m recording this with my phone, so unless you want your ten minute fight with that all over U-tube, let me help."
Somehow
Those small but growing inabilities add up. The list of things I can do with my remaining vision seems to get shorter every day. Something as simple as opening an aspirin bottle can be a major headache.
Snatching things out of blind hands or just taking over something are not approaches that work without further eroding the patent’s confidence.
My teammate’s approach wouldn’t work on everyone. The lack of malice in the "mean" humor and the sincere offer of help carried it for ne, even while that teammate’s general attitude that developed over years of friendship caused a newer teammate to quit the team.
The best approach to most patients is a nonchalant "If you need help with that, just let me know." The patient will know he has help if needed, but feels free to try on his own., he trained me to just hand over the bottle when I need to open it. Admittedly, that is a lot easier than trying to gnaw open the bottle. This approach appealed to me not just because I have a similar rough sense of humor, but because fewer people interact with me as a whole person. Sometimes I become a project, other times a magnet for quiet unease because people don’t know what to say to a blind guy.
Friday, November 18, 2011
Frrustration
My roommate and a couple friends had seen my outright flares of temper from the October 2009 Cialis-induced vitreous hemorrhage through Spring 2010 when I healed enough to be somewhat functional. In general I maintained composure and superficial acceptance of the new status quo. Many people from friends to acquaintances to doctors were amazed at how well I dealt with it all.
I wish I could say I was a calm, even tempered guy. I’m not. The funky thing is my temper triggers differently than other people’s.
For so long I have wound myself pretty tightly against the fits of bad temper that get triggered by frustrations during periods of low blood sugar. I have developed into someone who handles the big things well. But frustration is my enemy.
The friend who drove me around most during the red blackout period is still amazed at my utter lack of reaction to the car accident with my own vehicle during one of our trips to the grocery store. As a blind passenger in his own vehicle during the accident, I felt no anger during or since. It was an accident. That same friend watched me hurl my cell phone through tempered glass because I was too blind to dial and the voice recognition kept interpreting everything I said as instruction to call a hated tenant. This was a good enough friend ro clean up the broken glass before the blind guy could cut himself on it. Everyone should be so lucky to have such friends.
At bowling, I can get frustrated by bad scores but manage to step back from that without cursing loudly or kicking the ball return. That self control is much harder when the blood sugar is at a relative low. It’s only a game.
Yet someone who, after asked nicely, continues to use powder on his shoes. This is illegal in the sport as it poses slipping hazards to others. The blind guy who relies on the bowling alley as one of the few places he can be sure-footed does not deal with new slipping hazards well. The willful ignorance triggered the blind guy to taking the bottle of baby powder and tossing it into the trash in front of the offending bowler. And when that blind guy is verbally attacked for being so rude by someone who prefers polite self-centered ignorance, this blind guy doesn’t back down.
Blindness is an endless exercise in frustration. I still do a lot with what little sight I have left, but everything takes longer. Everything involves extra steps and increased caution. Some things just aren’t possible, but I learn that only after frustrating myself.
Maybe dealing with blindness is easier for people who were born that way because they don’t know what they’re missing. Or maybe that presumption is sheer ignorance.
I’ve worked hard through life for self sufficiency. The constantly increasing reliance on others is a frustration all to itself.
Getting mad at the stubborn blind fool will only escalate the downward spiral.
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