Friday, August 2, 2013
Saturday, July 20, 2013
Spam THIS!
Even while worsened eyesight and the latest leg crisis combine with other responsibilities to keep me away from my writing, including this blog, the international spammers have kept passing but constant attention to the blog. Real readers wouldn’t notice, because most of my actions have been to delete the link spam posted as comments.
The spam is obvious to me on so many levels. I’m not pounded soft by the empty and insincere compliments to how well written an article is or how I must be an authority on "this topic." I’m not taken in by compliments to the appearance or layout and do not feel the need to give free coaching to people asking what software I use to create the blog. I’m not even going to address the people who post with the advice that the blog needs "more" pictures. This is a blog by and mostly for blind people.
Most of the link spam is posted anonymously. It makes me think back to an online conversation I had with fellow writer Brandon Bell when he was being harassed by someone posting anonymously to his blog. There have been a couple friends or readers who posted legitimately, and I do not want to limit them. I also believe that limited comments in any way can inadvertently lay a foundation for censorship. No one has to agree with me, we just need to disagree respectfully.
Censorship opposition aside, the idea of this blog is to force myself to communicate the experiences of vision loss and diabetes and the other problems that arise. Most of the questions friends and acquaintances have but feel impolite to ask can be answered here. Judging from search engine hits, many other people have gotten useful information among these posts. It’s not a commercial site. If I am not even trying to make money off of it, I see no reason to allow people across the world to post a pasted comments on my blog along with who knows how many other, just so they can end with a link to their commercial sites that hawk things like trick teas, rascally raspberries, gimmicks for overall weight loss or specific weight gain solely to the penis, supplements and non-American approved drugs, cosmetics, prostitution, and the worst among others, boner pills. Do these assholes really think I will allow boner pill links when I have maintained the most frequent label tag as "Cialis = Blindness"?
The spam filters here work very well, and what garbage they do miss, I am quick to delete.
The spam is obvious to me on so many levels. I’m not pounded soft by the empty and insincere compliments to how well written an article is or how I must be an authority on "this topic." I’m not taken in by compliments to the appearance or layout and do not feel the need to give free coaching to people asking what software I use to create the blog. I’m not even going to address the people who post with the advice that the blog needs "more" pictures. This is a blog by and mostly for blind people.
Most of the link spam is posted anonymously. It makes me think back to an online conversation I had with fellow writer Brandon Bell when he was being harassed by someone posting anonymously to his blog. There have been a couple friends or readers who posted legitimately, and I do not want to limit them. I also believe that limited comments in any way can inadvertently lay a foundation for censorship. No one has to agree with me, we just need to disagree respectfully.
Censorship opposition aside, the idea of this blog is to force myself to communicate the experiences of vision loss and diabetes and the other problems that arise. Most of the questions friends and acquaintances have but feel impolite to ask can be answered here. Judging from search engine hits, many other people have gotten useful information among these posts. It’s not a commercial site. If I am not even trying to make money off of it, I see no reason to allow people across the world to post a pasted comments on my blog along with who knows how many other, just so they can end with a link to their commercial sites that hawk things like trick teas, rascally raspberries, gimmicks for overall weight loss or specific weight gain solely to the penis, supplements and non-American approved drugs, cosmetics, prostitution, and the worst among others, boner pills. Do these assholes really think I will allow boner pill links when I have maintained the most frequent label tag as "Cialis = Blindness"?
The spam filters here work very well, and what garbage they do miss, I am quick to delete.
Saturday, July 6, 2013
Feelings of Abandonment
I have not abandoned this blog, despite the lack of a new post since April. (Forthcoming case in point, no sooner did I write that one line on June 4th when I was distracted away and unable to get back.)
Now it’s July 6th and I believe I can finish a hasty missive.
2013 has left me with an overwhelming sense of loss. On top of reduced capabilities and an attrition of friends, over the time since the eye problems began, I started the year with poor feelings for having sold my car. I can accept the inability to drive more than no longer owning a vehicle.
As the year progressed, I had an eye procedure that brought complication and less result than anyone had hoped. My father passed away, I noticed that the Crow boot-bound leg is losing muscle mass and even routine things took more effort. Even further reduced exertion was more than I found I could handle. I’ve had to give up more, especially when "over" exertion inflamed the tendon in my leg, which re-triggered the Charcot Foot inflammation and ended up ulcerating the ankle. The hole was larger than a silver dollar. More than three months later, it’s about the size of a penny or nickel.
I suffered the worsened by moving prized possessions to a venue for their sale. Despite the pride in ownership, this stuff is heavy and bulky and useless to a blind guy. Removal became critical because the fact that my apartment–in a house I own–is no longer livable for me, even before the reduced eyesight and worsened leg. There’s 34 steps between the street and my apartment; 48 between the street and my bedroom. It’s hard enough getting in the house empty handed. Groceries are outright burdensome.
The eyesight, particularly effects of and adjustment to changes in light, is worse. This limits everything, including functional computer time. Work on fiction projects has stagnated as much as the blog while I try to close out responsibilities and roll with the changes.
Things are looking less bleak. My guardian angels may be masochists, but they are on the job!
Now it’s July 6th and I believe I can finish a hasty missive.
2013 has left me with an overwhelming sense of loss. On top of reduced capabilities and an attrition of friends, over the time since the eye problems began, I started the year with poor feelings for having sold my car. I can accept the inability to drive more than no longer owning a vehicle.
As the year progressed, I had an eye procedure that brought complication and less result than anyone had hoped. My father passed away, I noticed that the Crow boot-bound leg is losing muscle mass and even routine things took more effort. Even further reduced exertion was more than I found I could handle. I’ve had to give up more, especially when "over" exertion inflamed the tendon in my leg, which re-triggered the Charcot Foot inflammation and ended up ulcerating the ankle. The hole was larger than a silver dollar. More than three months later, it’s about the size of a penny or nickel.
I suffered the worsened by moving prized possessions to a venue for their sale. Despite the pride in ownership, this stuff is heavy and bulky and useless to a blind guy. Removal became critical because the fact that my apartment–in a house I own–is no longer livable for me, even before the reduced eyesight and worsened leg. There’s 34 steps between the street and my apartment; 48 between the street and my bedroom. It’s hard enough getting in the house empty handed. Groceries are outright burdensome.
The eyesight, particularly effects of and adjustment to changes in light, is worse. This limits everything, including functional computer time. Work on fiction projects has stagnated as much as the blog while I try to close out responsibilities and roll with the changes.
Things are looking less bleak. My guardian angels may be masochists, but they are on the job!
Friday, April 26, 2013
Circling Charcot
My resurgence of Charcot "Sharko" Foot makes it a good time to go over the condition, especially as one of the biggest threats of the condition is that it is rare enough that doctors can easily make it worse. To the cost of the patient’s limb.
Charcot Foot these days is almost an exclusive diabetic condition characterized by sudden and often "inexplicable" swelling of the foot. The foot will often "run a fever" and can be seven degrees Celsius warmer than the non-afflicted foot. The condition is most often painless to the patient.
Usually, the Charcot Foot is triggered by a break or fracture among the bones of the foot. With reduced circulation and/or nerve damage, the diabetic does not feel the break and continues to use the foot as normal. The swelling is the body’s way of protecting itself.
The unintentional risk posed by doctors is that the attending physician will not recognize or know of the condition. Often, the doctor will probe the swelling to test for bacterial or viral infection within the foot. In doing so, the doctor may introduce surface skin bacteria inside the foot and cause a sever infection that can jeopardize the limb. The patient should neither allow biopsy nor any type of mechanical reduction of the swelling. About half the patients who allow those thing quickly lose the foot.
Treatment for the Charcot relies on treatment for the underlying cause. X-rays and MRI’s are often necessary to determine the damage location and extent. Staying off the afflicted foot as much as possible will be necessary. The bones must heal properly. If they do not, they can separate further, mal-forming the foot permanently and risk ulceration of the foot. To be bluntly graphic, ulceration of the foot is when the bones poke through the skin from the inside out. The risk of infection during an ulceration is high, and the diabetic patient may not be able to feel it happening.
As usual with me, everything was slightly unusual. I developed Charcot Foot not because of a broken bone, but by tendon damage in my toe self inflicted by a hard kick. I had an inept foot doctor who prematurely declared the Charcot had passed Phase One and did not take into consideration that I was on eye-dropped prednisone for an eye surgery. The Charcot Foot renewed with a vengeance, and the swelling further reduced circulation. With further impeded circulation, nutrients including high levels of calcium and deficient Vitamin D could not reach the center of the ankle. The central bones collapsed, permanent damage that put me in a Crow Boot.
Overuse re-triggered the Charcot Foot recently by re-inflaming the tendon. When the foot swelled, the Crow Boot no longer fit correctly and the ankle bones that are twisted and misshapen ulcerated through the side of the ankle.
The tendon will ever be likely to re-inflame while a broken bone would likely have mended. The crushed ankle cannot mend. I have to be diligent, and my situation of not being able to feel much pain in the ankle combined with an inability to see things wrong with the foot makes that even more of an effort.
Charcot Foot these days is almost an exclusive diabetic condition characterized by sudden and often "inexplicable" swelling of the foot. The foot will often "run a fever" and can be seven degrees Celsius warmer than the non-afflicted foot. The condition is most often painless to the patient.
Usually, the Charcot Foot is triggered by a break or fracture among the bones of the foot. With reduced circulation and/or nerve damage, the diabetic does not feel the break and continues to use the foot as normal. The swelling is the body’s way of protecting itself.
The unintentional risk posed by doctors is that the attending physician will not recognize or know of the condition. Often, the doctor will probe the swelling to test for bacterial or viral infection within the foot. In doing so, the doctor may introduce surface skin bacteria inside the foot and cause a sever infection that can jeopardize the limb. The patient should neither allow biopsy nor any type of mechanical reduction of the swelling. About half the patients who allow those thing quickly lose the foot.
Treatment for the Charcot relies on treatment for the underlying cause. X-rays and MRI’s are often necessary to determine the damage location and extent. Staying off the afflicted foot as much as possible will be necessary. The bones must heal properly. If they do not, they can separate further, mal-forming the foot permanently and risk ulceration of the foot. To be bluntly graphic, ulceration of the foot is when the bones poke through the skin from the inside out. The risk of infection during an ulceration is high, and the diabetic patient may not be able to feel it happening.
As usual with me, everything was slightly unusual. I developed Charcot Foot not because of a broken bone, but by tendon damage in my toe self inflicted by a hard kick. I had an inept foot doctor who prematurely declared the Charcot had passed Phase One and did not take into consideration that I was on eye-dropped prednisone for an eye surgery. The Charcot Foot renewed with a vengeance, and the swelling further reduced circulation. With further impeded circulation, nutrients including high levels of calcium and deficient Vitamin D could not reach the center of the ankle. The central bones collapsed, permanent damage that put me in a Crow Boot.
Overuse re-triggered the Charcot Foot recently by re-inflaming the tendon. When the foot swelled, the Crow Boot no longer fit correctly and the ankle bones that are twisted and misshapen ulcerated through the side of the ankle.
The tendon will ever be likely to re-inflame while a broken bone would likely have mended. The crushed ankle cannot mend. I have to be diligent, and my situation of not being able to feel much pain in the ankle combined with an inability to see things wrong with the foot makes that even more of an effort.
Wednesday, April 24, 2013
Insensitive
Long story short on the latest malady:
I over-exerted from the third week of March through the first week of April, with a steady increase in activity. This caused no immediate strain, but inflamed the bad tendon, which inflamed the Charcot Foot, which caused the ulceration of my ankle. The open wound is typically encased in a Crow Boot, which is a tight, foam-lined brace that supports the permanently I have to wear the Crow Boot at all times or risk further ankle collapse whenever I put weight on the right leg. The Crow Boot can be very warm on the leg, and a symptom of Charcot Foot itself is temperature of the foot that can be seven degrees Celsius above the rest of the body.
This forms the ideal conditions for bacterial growth, dark and warm and moist. The problem getting so bad so fast is not a sign that I am a bad diabetic who does not take care of himself. It is a matter that I am a diabetic with nerve damage who could not feel the break in the skin on the foot. I am a blind diabetic who could not see the break in the foot, or blood on a dark sock.
Two things made me aware of the problem. The first was a lingering smell. I wondered what the bad smell was in the kitchen. I noticed it in another room. I thought the cat box in the bathroom had a funky odor. When I went to bed that night, the smell from the removed boot was overpowering. I happened to notice that the sock was wet, but not in a uniformly sweaty way. I touched what is normally a rough, dry area of skin and squished my finger in a wet hole.
I called a tenant who helps me out a lot. He came over and we cleaned things up. He found my emergency pack of antibiotics and I started those.
By specific criteria, he agreed with my decision not to go to an emergency room that night, but to get in contact with my regular foot doctor in the morning. This decision was not for financial reasons, but logistical ones. The truth is, Charcot Foot is not all that common and many doctors will not recognize it. Many, in the course of good and reasonable treatment, will do things that will increase the risk of Charcot Foot leading to amputation. I felt safer going to my doc–Thomas Mancini of North Providence–rather than to someone who I could only hope would not make things worse. I’ve been there and done that.
Dr. Mancini saw me that day. He cut away some dead tissue and was surprised by the amount of bleeding. Nerve damage is not the same thing as circulation problems. He prescribed Augmentin, a powerful antibiotic. I am making a concentrated effort to stay off the leg and keep the boot off when I can so the wound can breathe. I did catch the problem soon enough that the infection had not reached bone or flooded my system. The antibiotics knock me out a bit, but do not bother my stomach. I will be staying on them (and off the leg as much as possible) until the wound is healed up.
This may sound odd from a blind limpy guy, but I am lucky.
I over-exerted from the third week of March through the first week of April, with a steady increase in activity. This caused no immediate strain, but inflamed the bad tendon, which inflamed the Charcot Foot, which caused the ulceration of my ankle. The open wound is typically encased in a Crow Boot, which is a tight, foam-lined brace that supports the permanently I have to wear the Crow Boot at all times or risk further ankle collapse whenever I put weight on the right leg. The Crow Boot can be very warm on the leg, and a symptom of Charcot Foot itself is temperature of the foot that can be seven degrees Celsius above the rest of the body.
This forms the ideal conditions for bacterial growth, dark and warm and moist. The problem getting so bad so fast is not a sign that I am a bad diabetic who does not take care of himself. It is a matter that I am a diabetic with nerve damage who could not feel the break in the skin on the foot. I am a blind diabetic who could not see the break in the foot, or blood on a dark sock.
Two things made me aware of the problem. The first was a lingering smell. I wondered what the bad smell was in the kitchen. I noticed it in another room. I thought the cat box in the bathroom had a funky odor. When I went to bed that night, the smell from the removed boot was overpowering. I happened to notice that the sock was wet, but not in a uniformly sweaty way. I touched what is normally a rough, dry area of skin and squished my finger in a wet hole.
I called a tenant who helps me out a lot. He came over and we cleaned things up. He found my emergency pack of antibiotics and I started those.
By specific criteria, he agreed with my decision not to go to an emergency room that night, but to get in contact with my regular foot doctor in the morning. This decision was not for financial reasons, but logistical ones. The truth is, Charcot Foot is not all that common and many doctors will not recognize it. Many, in the course of good and reasonable treatment, will do things that will increase the risk of Charcot Foot leading to amputation. I felt safer going to my doc–Thomas Mancini of North Providence–rather than to someone who I could only hope would not make things worse. I’ve been there and done that.
Dr. Mancini saw me that day. He cut away some dead tissue and was surprised by the amount of bleeding. Nerve damage is not the same thing as circulation problems. He prescribed Augmentin, a powerful antibiotic. I am making a concentrated effort to stay off the leg and keep the boot off when I can so the wound can breathe. I did catch the problem soon enough that the infection had not reached bone or flooded my system. The antibiotics knock me out a bit, but do not bother my stomach. I will be staying on them (and off the leg as much as possible) until the wound is healed up.
This may sound odd from a blind limpy guy, but I am lucky.
Monday, April 22, 2013
Life and Limb
Yes, the blog’s been neglected this month. So has everything else. The new hole in my ankle is my excuse and my valid reason.
The Charcot Foot has relapsed with new complications. People who have read the older posts about the Charcot development may remember that I did not get Charcot Foot in a normal way. It is an esoteric diabetic thing, but normally stems from unfelt breaks or fractures in the foot. Mine resulted from tendon damage. During a "second" stage of Phase One, my circulation reduced During that time when nutrients could not find effective delivery to my swollen foot, the central bones of my ankle collapsed and a minor toe problem gangrened inside of three days. Luckily, somehow I did not have any part of the foot or toe amputated, although some meat was shaved off of the big toe. I’ve been in a Crow Boot since to reinforce the structural weakness of my ankle.
I am now a patient of podiatrist Thomas Mancini, who has offices in North Providence and East Greenwich Rhode Island. Doctor Mancini did great by me in every way. Instead of rehashing the bad things involved in last year’s mess, I’ll refer newer readers to the label for "Sturdy Hospital" and an old post titled "Doctor Dumbass."
So what went wrong this time? I over-exerted. I had to be a little more active with some things through the final weeks of March. That bothered the leg tendon in the thigh somewhat. Just having to walk to the adjoining building from my apartment is some 75 stairs each way. Having to make that walk so many times took more out of me than "it should."
April started with a project of moving things out of the house and setting up for sales in a booth at an antique co op. I arranged to hire an old friend ahead of time, a big brawny guy who can handle moving 40 boxes better than a limpy gimpy blind guy can. The fault in that plan was in hiring someone without a job. This friend has not outgrown his lazy streak since we’d had more exposure to each other. He called on the appointed day with supposed willingness but plenty of work-aversion ideas and theories. I went to the back up plans, which required more direct effort of me and did not get the entire project done in one day. It’s still not finished.
The efforts inflamed the tendon from toe to groin. This re-triggered the Charcot Foot. The foot swelled. Being trapped in a fitted brace that was now too tight, the collapsed ankle bone ulcerated the inside of the ankle against the boot. The Crow Boot is tight and warm, an ideal environment for bacterial growth.
My roommate was away that week. I can neither see nor really feel a problem on that lower leg. I realized it was infected by the smell.
Infection on that leg is literal risk to life and limb. Unchecked, an infection can flood my entire body pretty quickly, or it can root into local bones and necessitate removal of those bones and the part of the leg they form.
The Charcot Foot has relapsed with new complications. People who have read the older posts about the Charcot development may remember that I did not get Charcot Foot in a normal way. It is an esoteric diabetic thing, but normally stems from unfelt breaks or fractures in the foot. Mine resulted from tendon damage. During a "second" stage of Phase One, my circulation reduced During that time when nutrients could not find effective delivery to my swollen foot, the central bones of my ankle collapsed and a minor toe problem gangrened inside of three days. Luckily, somehow I did not have any part of the foot or toe amputated, although some meat was shaved off of the big toe. I’ve been in a Crow Boot since to reinforce the structural weakness of my ankle.
I am now a patient of podiatrist Thomas Mancini, who has offices in North Providence and East Greenwich Rhode Island. Doctor Mancini did great by me in every way. Instead of rehashing the bad things involved in last year’s mess, I’ll refer newer readers to the label for "Sturdy Hospital" and an old post titled "Doctor Dumbass."
So what went wrong this time? I over-exerted. I had to be a little more active with some things through the final weeks of March. That bothered the leg tendon in the thigh somewhat. Just having to walk to the adjoining building from my apartment is some 75 stairs each way. Having to make that walk so many times took more out of me than "it should."
April started with a project of moving things out of the house and setting up for sales in a booth at an antique co op. I arranged to hire an old friend ahead of time, a big brawny guy who can handle moving 40 boxes better than a limpy gimpy blind guy can. The fault in that plan was in hiring someone without a job. This friend has not outgrown his lazy streak since we’d had more exposure to each other. He called on the appointed day with supposed willingness but plenty of work-aversion ideas and theories. I went to the back up plans, which required more direct effort of me and did not get the entire project done in one day. It’s still not finished.
The efforts inflamed the tendon from toe to groin. This re-triggered the Charcot Foot. The foot swelled. Being trapped in a fitted brace that was now too tight, the collapsed ankle bone ulcerated the inside of the ankle against the boot. The Crow Boot is tight and warm, an ideal environment for bacterial growth.
My roommate was away that week. I can neither see nor really feel a problem on that lower leg. I realized it was infected by the smell.
Infection on that leg is literal risk to life and limb. Unchecked, an infection can flood my entire body pretty quickly, or it can root into local bones and necessitate removal of those bones and the part of the leg they form.
Wednesday, April 17, 2013
Awkward Silence
The last thing I wanted was to have the flow of posts interrupted where it was, amid observations about how control freaks make the best caregivers. That could sound like An empty or ungrateful criticism of some of the people who have been there for me most. That’s the furthest thing from my intent, partially because my core statement is true: control freaks make the best caregivers. Those without the ability to plow forward can’t do as much and are often not as effective.
When the blood hemorrhage happened, my friend Pat dove into the deep end of my care. For any minor complaint I could raise, I don’t know how I could have gotten through that time without Pat. The cycle of needs almost cost us the friendship. Pat took over more and more, too much for my liking both as someone trying to learn where and when I had to let go, and more as someone traditionally viewed as uncontrollable. Pat put so much time and effort and energy into my care that Pat’s marriage strained. We both needed a reset of the boundaries for our individual well being. That process was the right thing that never felt right to either of us. Pat had said at one point, I had such a look of hatred in my face; that moment had demonstrated the need to back off to Pat. I had unintentionally inflicted a hurt without being aware of it. I barely remember the incident as anything beyond one of my helpless, self-pitying moods.
It’s been three years. I am more adjusted to my situation and all its stark realities. Pat’s marriage has stabilized. We’ve maintained a friendship with roots back into the mid 1980’s. I am grateful for all that.
When the blood hemorrhage happened, my friend Pat dove into the deep end of my care. For any minor complaint I could raise, I don’t know how I could have gotten through that time without Pat. The cycle of needs almost cost us the friendship. Pat took over more and more, too much for my liking both as someone trying to learn where and when I had to let go, and more as someone traditionally viewed as uncontrollable. Pat put so much time and effort and energy into my care that Pat’s marriage strained. We both needed a reset of the boundaries for our individual well being. That process was the right thing that never felt right to either of us. Pat had said at one point, I had such a look of hatred in my face; that moment had demonstrated the need to back off to Pat. I had unintentionally inflicted a hurt without being aware of it. I barely remember the incident as anything beyond one of my helpless, self-pitying moods.
It’s been three years. I am more adjusted to my situation and all its stark realities. Pat’s marriage has stabilized. We’ve maintained a friendship with roots back into the mid 1980’s. I am grateful for all that.
Friday, March 29, 2013
Ghost in the Rear-View
After considerable delays, the anthology Our Haunted World" is finally available for purchase at Amazon.com and should soon be available at Barnes and Noble.com as well.
http://www.amazon.com/Our-Haunted-World-Stories-Around/dp/0977095681
My contribution to the volume is "Ghost in the Rear-View." The story is solidly set here in Providence Rhode Island. It’s more than a haunted car story, to which the title gives some hint. It’s a nifty story inspired by a line in the Jim Steinman song by Meat Loaf "Objects in the Rear View Mirror May Appear Closer than They Are." My story focuses on the appearance of a ghost in a guy’s car and moves towards the answer of why she began appearing there whenever he drives past a highway-side graveyard, as can be readily seen by people heading northbound on I-95 just pas Branch Avenue.
It is one of the favorite three short stories I have written. Originally the publisher planned illustrations for the stories, and mine was the first one chosen by the artists for some of its haunting imagery. The illustrations, unfortunately, were later omitted from the publishing plan.
The anthology features some other good writers I have encountered before and promises some great stories. It’s a must-have addition to the bookshelves for my three fans and anyone who enjoys ghost stories.
http://www.amazon.com/Our-Haunted-World-Stories-Around/dp/0977095681
My contribution to the volume is "Ghost in the Rear-View." The story is solidly set here in Providence Rhode Island. It’s more than a haunted car story, to which the title gives some hint. It’s a nifty story inspired by a line in the Jim Steinman song by Meat Loaf "Objects in the Rear View Mirror May Appear Closer than They Are." My story focuses on the appearance of a ghost in a guy’s car and moves towards the answer of why she began appearing there whenever he drives past a highway-side graveyard, as can be readily seen by people heading northbound on I-95 just pas Branch Avenue.
It is one of the favorite three short stories I have written. Originally the publisher planned illustrations for the stories, and mine was the first one chosen by the artists for some of its haunting imagery. The illustrations, unfortunately, were later omitted from the publishing plan.
The anthology features some other good writers I have encountered before and promises some great stories. It’s a must-have addition to the bookshelves for my three fans and anyone who enjoys ghost stories.
Thursday, March 28, 2013
Caregiver Seizing Control
Continuing on the ongoing theme of control freaks make the best caregivers....
It’s only special people who can truly rise up and become major caregivers to others in need. Vows of "in sickness and in health" often get broken under such circumstances. I find myself remarkably lucky to have or have had some of the people who have passed through my life and/or remain part of it. I am a cantankerous unmarried and unattached man without close family who went blind at 40. I’ve had more than one person who did or does take excellent car of me, often going out of their way to do so. Two of those rise above all others to the depth of their efforts. Conflict is inevitable with each. They have control freak tendencies in general, and my loss of control and ability creates a vacuum that is natural for either to want to fill.
One is my former employer, business partner, friend, border, roommate and probably a lot of other roles and definitions that escape me right now. I’ll deal with him later.
The other is "Pat," a name I assigned for gender neutrality in the policy I have always maintained with this blog of not specifically mentioning friends and rendering almost all of them anonymous to the blog readers and mutual acquaintances alike. I’ve known Pat for well over half my life and while there were intervening years without contact, at several points we were close, if not intimate.
When the blood hemorrhage happened, it seems Pat dropped everything to be there for me. It did not seem that way from the onset; he just gave rides and other favors here and there. The frequency rose quickly. My parents had taken me to the first few eye appointments in October 2009, but Pat took over that responsibility and had driven me to all the PRP sessions and other appointments. This was one of the first signs that Pat’s help was expanding from charity to control. I want neither Pat nor no one else to misconstrue anything here or think that I do not appreciate everything he did. I appreciate Pat’s actions and the person behind them.
The PRP appointments and intervening exams went from the option of Pat driving me to a mandatory thing by his actions. Pat was rearranging hectic work schedules to do this for me, and taking time away from an already troubled marriage at the time, which made that aspect worse at home. I was dealing with the loss of independence and self control as well as the loss of plain old eyesight. Pat was helping me, but it soon developed that he would arrange future appointments to his work schedule. He would take the appointment cards for upcoming visits; I would never have possession or sometimes even much knowledge when the next appointment was without his reminders and scheduling of my time.
I do not think Pat was intentionally acting out any control freakishness with any bad intent or simple goal of controlling me. Pat simply found it expedient to make sure he knew when the appointments were so he could rearrange his schedule and make sure the treatments were met.
I see this as a classic way that caregivers end up taking control. There’s no sinister conspiracy to seize someone else’s life. Pat did no wrong to me and in fact did much, maybe too much, right. Yet in that time, while I was trying to hold on to everything I was losing, there was no way that the small things Pat took over for expediency or ease in providing help could be surrendered without resentment.
It’s only special people who can truly rise up and become major caregivers to others in need. Vows of "in sickness and in health" often get broken under such circumstances. I find myself remarkably lucky to have or have had some of the people who have passed through my life and/or remain part of it. I am a cantankerous unmarried and unattached man without close family who went blind at 40. I’ve had more than one person who did or does take excellent car of me, often going out of their way to do so. Two of those rise above all others to the depth of their efforts. Conflict is inevitable with each. They have control freak tendencies in general, and my loss of control and ability creates a vacuum that is natural for either to want to fill.
One is my former employer, business partner, friend, border, roommate and probably a lot of other roles and definitions that escape me right now. I’ll deal with him later.
The other is "Pat," a name I assigned for gender neutrality in the policy I have always maintained with this blog of not specifically mentioning friends and rendering almost all of them anonymous to the blog readers and mutual acquaintances alike. I’ve known Pat for well over half my life and while there were intervening years without contact, at several points we were close, if not intimate.
When the blood hemorrhage happened, it seems Pat dropped everything to be there for me. It did not seem that way from the onset; he just gave rides and other favors here and there. The frequency rose quickly. My parents had taken me to the first few eye appointments in October 2009, but Pat took over that responsibility and had driven me to all the PRP sessions and other appointments. This was one of the first signs that Pat’s help was expanding from charity to control. I want neither Pat nor no one else to misconstrue anything here or think that I do not appreciate everything he did. I appreciate Pat’s actions and the person behind them.
The PRP appointments and intervening exams went from the option of Pat driving me to a mandatory thing by his actions. Pat was rearranging hectic work schedules to do this for me, and taking time away from an already troubled marriage at the time, which made that aspect worse at home. I was dealing with the loss of independence and self control as well as the loss of plain old eyesight. Pat was helping me, but it soon developed that he would arrange future appointments to his work schedule. He would take the appointment cards for upcoming visits; I would never have possession or sometimes even much knowledge when the next appointment was without his reminders and scheduling of my time.
I do not think Pat was intentionally acting out any control freakishness with any bad intent or simple goal of controlling me. Pat simply found it expedient to make sure he knew when the appointments were so he could rearrange his schedule and make sure the treatments were met.
I see this as a classic way that caregivers end up taking control. There’s no sinister conspiracy to seize someone else’s life. Pat did no wrong to me and in fact did much, maybe too much, right. Yet in that time, while I was trying to hold on to everything I was losing, there was no way that the small things Pat took over for expediency or ease in providing help could be surrendered without resentment.
Wednesday, March 27, 2013
Freaky
While talking about caregivers and control freaks, I would be negligent to ignore opinions of some that I am a control freak myself.
Tuesday, March 26, 2013
Losing Control
There, I’ve said it: The best caregivers are often control freaks.
They do not proceed with sinister intent. They are good people with the best of intentions, with the heart and mind and patience to look after a gimp like me or their agin parents or relatives.
Two digressions before I continue.
First, I was labeled "uncontrollable" as a teenager. I never lost the label as an adult, because it was always true. I can be worked with, guided and even directed, but not controlled. Employers and bosses who wanted jobs done were always happy with me. Those who wanted hoops jumped through soon became frustrated, and more often than not, former employers sooner rather than later. I was always brazen enough to meet the statement "If I tell you to jump, you’re to ask ‘How high’?" with open contempt. I am not an extension of other people and do not exist to boost the egos of others. That has not changed since I went gimp. Nor is it likely to change.
The second reminder for this subject holds true in my case and most others, whether the person needing help is going gimp or just getting old and feeble. People like us are psychologically dealing with losses of control over ourselves and our lives. I looked at giving up driving as a responsibility to the communities through which I would be endangering. I just have a certain mix of competency and confidence And genuine humility. My convenience and self control is not worth the danger I would pose to others. I wish more elderly people would have this reason and just stop driving before they kill someone. Yet I understand why they don’t, often until they total their car or their kids take the keys away. Loss of independence to go where you want when you want is an enormous loss of self control. It is not always the beginning of the end, but is usually the turning point from which there is no recovery. Getting a driver’s licence and car is a milestone for most people, and losing that privilege is akin to picking out your gravestone.
All on our own, we see, even blind, out self control and independence dwindle.
We feel grateful for those who are willing to help us and do for us.
We understand that we are a burden to those who help us the most, and even at our most cantankerous, we truly appreciate the efforts.
Watch that sandwich generation person in the grocery and department store as he shops with both children and a frail parent. Often the sharp barked orders to the parent are as commanding to the elderly parents as to the grade schooler. The caregiver is happy to help, but the daily demands and obligations take over. Getting shoes for the kids and prune juice for the parents become equal things on the to do list, often with similar annoyances: the kid doesn’t like the trim color on the shoes and the parents thinks that bottle of prune juice is too heavy or hard to grasp.
"Normal" or mediocre caregivers get frustrated by this. Usually they make the shopping trips less often or reduce the help they give. I do find that understandable.
The best caregivers seize the reins and take over the situation. This is less pronounced with children. With adults who are already losing control of aspects of their lives, the cycle can soon escalate.
The size and shape of that prune juice bottle really doesn’t matter. But the representation that even such an insignificant decision is out of our hands becomes a small point of stress in a growing porcupine that we sleep with each night.
Conflict between the caregiver and the receiver becomes inevitable....
They do not proceed with sinister intent. They are good people with the best of intentions, with the heart and mind and patience to look after a gimp like me or their agin parents or relatives.
Two digressions before I continue.
First, I was labeled "uncontrollable" as a teenager. I never lost the label as an adult, because it was always true. I can be worked with, guided and even directed, but not controlled. Employers and bosses who wanted jobs done were always happy with me. Those who wanted hoops jumped through soon became frustrated, and more often than not, former employers sooner rather than later. I was always brazen enough to meet the statement "If I tell you to jump, you’re to ask ‘How high’?" with open contempt. I am not an extension of other people and do not exist to boost the egos of others. That has not changed since I went gimp. Nor is it likely to change.
The second reminder for this subject holds true in my case and most others, whether the person needing help is going gimp or just getting old and feeble. People like us are psychologically dealing with losses of control over ourselves and our lives. I looked at giving up driving as a responsibility to the communities through which I would be endangering. I just have a certain mix of competency and confidence And genuine humility. My convenience and self control is not worth the danger I would pose to others. I wish more elderly people would have this reason and just stop driving before they kill someone. Yet I understand why they don’t, often until they total their car or their kids take the keys away. Loss of independence to go where you want when you want is an enormous loss of self control. It is not always the beginning of the end, but is usually the turning point from which there is no recovery. Getting a driver’s licence and car is a milestone for most people, and losing that privilege is akin to picking out your gravestone.
All on our own, we see, even blind, out self control and independence dwindle.
We feel grateful for those who are willing to help us and do for us.
We understand that we are a burden to those who help us the most, and even at our most cantankerous, we truly appreciate the efforts.
Watch that sandwich generation person in the grocery and department store as he shops with both children and a frail parent. Often the sharp barked orders to the parent are as commanding to the elderly parents as to the grade schooler. The caregiver is happy to help, but the daily demands and obligations take over. Getting shoes for the kids and prune juice for the parents become equal things on the to do list, often with similar annoyances: the kid doesn’t like the trim color on the shoes and the parents thinks that bottle of prune juice is too heavy or hard to grasp.
"Normal" or mediocre caregivers get frustrated by this. Usually they make the shopping trips less often or reduce the help they give. I do find that understandable.
The best caregivers seize the reins and take over the situation. This is less pronounced with children. With adults who are already losing control of aspects of their lives, the cycle can soon escalate.
The size and shape of that prune juice bottle really doesn’t matter. But the representation that even such an insignificant decision is out of our hands becomes a small point of stress in a growing porcupine that we sleep with each night.
Conflict between the caregiver and the receiver becomes inevitable....
Monday, March 25, 2013
Caregivers
The experience of going blind and gimpy is much like getting elderly. I’m less capable by far but can remember all the things I could do and could do well if only my body still possessed the physical capabilities. I can see to neither drive nor read nor much in between. Especially when wearing pants with cuffs that do not fit over the Crow Boot, the walking disability is clearly evident to people.
Many people, perhaps the majority, have an aversion to getting close to me for this, as if the blindness or diabetes or collapsed ankle was catchy. Some people just don’t know what to say in the face of evident misfortune and steer clear of the person to avoid saying the wrong thing. I understand this and mean no criticism. I was much the same way. I would look after people in my life when they needed help, but I just was never the type to see an old woman at the curb and grab her by the arm to help her across the street. People with something other than my lump of cold coal for a heart will take that old biddy by the arm and escort her across the street. People do this with me. Often they grip my arm to guide me along, and the hold is not completely different than police escorting handcuffed prisoners. I need help less when I am on familiar ground. I can say I am all right or can get by where I am, but seldom am I released to stand or fall on my own. I get the help, need it or not, want it or not.
I know some readers will take this line of complaints as ingratitude or general surliness on my part. I do appreciate even small kindness from others. I express gratitude without hesitation, to the person who earned it, and often about the person who earned it. People who truly know me do know that I say things how they are, and I am good on stating the positives rather than just the negatives.
Some dark paths run close parallels to the bright and cheery roads that the casual caregivers travel. The first is that offers to the effect "if you ever need help, call me" are moist often empty offers. The person making the offer is often making it in front of others, to make themselves seem charitable and caring. Actually being taken up on those offers strikes them as inconvenient.
The second pitfall is someone who does want to help but finds there can be no end to it. Giving an occasional ride is no problem, but a regular ride somewhere becomes an unwanted obligation. The receiver of the recurring favor needs to keep aware of this. The "now-obligated" caregiver can quickly grow resentful of the obligation but feel unable to separate from it. The stress of the situation will grow in those caregivers and reach a boiling point.
The other type of charitable caregiver can be the most sinister situation of all. My reference to arm-grasping assistance being like police corralling prisoners was not casual. Care-giving is often an expansion of mommy (or daddy) instincts. The best caregivers are often control freaks.
Many people, perhaps the majority, have an aversion to getting close to me for this, as if the blindness or diabetes or collapsed ankle was catchy. Some people just don’t know what to say in the face of evident misfortune and steer clear of the person to avoid saying the wrong thing. I understand this and mean no criticism. I was much the same way. I would look after people in my life when they needed help, but I just was never the type to see an old woman at the curb and grab her by the arm to help her across the street. People with something other than my lump of cold coal for a heart will take that old biddy by the arm and escort her across the street. People do this with me. Often they grip my arm to guide me along, and the hold is not completely different than police escorting handcuffed prisoners. I need help less when I am on familiar ground. I can say I am all right or can get by where I am, but seldom am I released to stand or fall on my own. I get the help, need it or not, want it or not.
I know some readers will take this line of complaints as ingratitude or general surliness on my part. I do appreciate even small kindness from others. I express gratitude without hesitation, to the person who earned it, and often about the person who earned it. People who truly know me do know that I say things how they are, and I am good on stating the positives rather than just the negatives.
Some dark paths run close parallels to the bright and cheery roads that the casual caregivers travel. The first is that offers to the effect "if you ever need help, call me" are moist often empty offers. The person making the offer is often making it in front of others, to make themselves seem charitable and caring. Actually being taken up on those offers strikes them as inconvenient.
The second pitfall is someone who does want to help but finds there can be no end to it. Giving an occasional ride is no problem, but a regular ride somewhere becomes an unwanted obligation. The receiver of the recurring favor needs to keep aware of this. The "now-obligated" caregiver can quickly grow resentful of the obligation but feel unable to separate from it. The stress of the situation will grow in those caregivers and reach a boiling point.
The other type of charitable caregiver can be the most sinister situation of all. My reference to arm-grasping assistance being like police corralling prisoners was not casual. Care-giving is often an expansion of mommy (or daddy) instincts. The best caregivers are often control freaks.
Thursday, March 21, 2013
Adjusting the Dividing Lines
It’s been nearly three and a half years since the vitreous hemorrhage that started the permanent decline in vision and other diabetic related maladies. I’ve dealt with it OK, admirably, according to some people. I find irony that some of my personal strengths that have gotten me through these days and years are the same elements that did (and still do) grate on other people.
I’m not a warm and fuzzy guy. There’s a cold center beneath a warm midrange beneath a somewhat icy shell. Not everyone sees that. Cordial introductions can make people overestimate my social demeanor. Introductions made with a cool distance can lend opposite perceptions. Neither extreme is either wholly true nor untrue.
I’m cold and analytical. I judge no one but appraise everyone. Depending on where and how I know the other person, my appraisals often are twofold, personal and professional. Nobody’s all good or all bad, no one’s better than me and I’m not better than anyone else. I don’t force my way into others’ conversations with a driving need to express my opinion, yet have no fear of calling a spade a spade, or a diamond a diamond. I can come across as a wise ass, a know it all, a cold hard ass, a sympathetic shoulder, a passionate debater or a non-caring stone. They’re all legitimate parts of me, and different people tend to bring out different aspects under different circumstances. Under all circumstances, I stay true to myself. I don’t pander or jump through hoops for anyone, but compromise easily to find common ground with compromising people.
It’s those who don’t compromise from their own ways and desires who have had the greatest problems with me. Making friends by burying all my thoughts and needs for others never struck me as worth it. Those people can be very loyal, but only for as long as they are getting their own way. I’ve recognized since early adulthood that no one can be liked by everybody, and too often, the harder someone tries, the less they succeed.
That subtle and easily overlooked willingness to compromise and let others live as they would on their side of any dividing lines has also served me well, even when also being some of the greatest hardship to my adjustment. I have to learn to compromise on my own turf more, learn to accept help and adjust to things I can no longer do or control for myself.
That process of adjustment is still underway.
I’m not a warm and fuzzy guy. There’s a cold center beneath a warm midrange beneath a somewhat icy shell. Not everyone sees that. Cordial introductions can make people overestimate my social demeanor. Introductions made with a cool distance can lend opposite perceptions. Neither extreme is either wholly true nor untrue.
I’m cold and analytical. I judge no one but appraise everyone. Depending on where and how I know the other person, my appraisals often are twofold, personal and professional. Nobody’s all good or all bad, no one’s better than me and I’m not better than anyone else. I don’t force my way into others’ conversations with a driving need to express my opinion, yet have no fear of calling a spade a spade, or a diamond a diamond. I can come across as a wise ass, a know it all, a cold hard ass, a sympathetic shoulder, a passionate debater or a non-caring stone. They’re all legitimate parts of me, and different people tend to bring out different aspects under different circumstances. Under all circumstances, I stay true to myself. I don’t pander or jump through hoops for anyone, but compromise easily to find common ground with compromising people.
It’s those who don’t compromise from their own ways and desires who have had the greatest problems with me. Making friends by burying all my thoughts and needs for others never struck me as worth it. Those people can be very loyal, but only for as long as they are getting their own way. I’ve recognized since early adulthood that no one can be liked by everybody, and too often, the harder someone tries, the less they succeed.
That subtle and easily overlooked willingness to compromise and let others live as they would on their side of any dividing lines has also served me well, even when also being some of the greatest hardship to my adjustment. I have to learn to compromise on my own turf more, learn to accept help and adjust to things I can no longer do or control for myself.
That process of adjustment is still underway.
Saturday, March 16, 2013
Finding Accomplishment
I get compliments on how well I handle my situation, this limpy-gimpy blind guy routine. Some compliments are direct by words. Others, demonstrated through actions, mean even more.
Things are a struggle, daily and continuously. I’m stating that clearly, without whining about it.
In some ways, I could cope better. My roommate demonstrates awe for my struggle. He says he could not handle it as well. I disagree, because he likes being taken care of. I built my life on self sufficiency, and that has been the greatest loss overall. I know my roommate likes having someone do all his shopping, meal prep and driving. He would not feel an inappropriate shade of shame when he needs to be led from the car to any unfamiliar building. I know this for certain as a roommate and a former employee. He can feel accomplishment for having requested or ordered something to be done and come back later to find things squared away. I always found accomplishment in doing for (and often by) myself.
I still cook, not as well as I once did, but with remarkably few mishaps. On bad days, it is an accomplishment to pour my own coffee and bring it to another room without spilling it. I’ve learned to find accomplishment in small things. I could never paint a fresh even coat in a room again, but I can still change locks.
I believe that luck is an exchange of fortunes and misfortunes that all evens out in the end, between individuals if not for one individual. This whole eye thing, that’s bad luck that forever stole so many of the things that had provided me true happiness. I’ve trudged and limped on since then. The exchange of luck came with my writing. At about the same time as the blood hemorrhage, I started being published regularly. This blog gets good readership, especially since I don’t advertise it outside my website, email signature and Facebook links. My short stories have usually been well received (usually.) I never expected to set literary or commercial worlds afire. Story submission can be grueling and brutal, more often than not a constant stream of rejection for personal and heartfelt work.. Thick skin is necessary. I learned to take pride in the small accomplishments.
My ability to submit to editors is hindered. I used to regularly review all unpublished stories that had been returned for re-submission somewhere else. I can usually now submit only one in the same timeframe. Despite my de-acquisition of responsibilities, I still get called away from the writing with frustrating regularity.
The thing most important to the overall view of my life is the first things that must be put aside. "Life is what happens when you’re busy making other plans," someone said long before John Lennon popularized a similar phrase.
Things are slower with the writing as with everything, but I am plugging on.
I got real close with the very last story I've written, "Stone Soup." A big "professional" magazine, Abyss and Apex, held onto it for months beyond their normal time. They said they had been considering it closely but ultimately chose other material. A bummer, but maybe because I've been spinning my wheels with the fiction efforts so much lately, I find it very encouraging.
"Stone Soup" a Sivil Galaxi tale based on the old folktale but with a couple of my psychotic twists.
It will be available, someday.
Things are a struggle, daily and continuously. I’m stating that clearly, without whining about it.
In some ways, I could cope better. My roommate demonstrates awe for my struggle. He says he could not handle it as well. I disagree, because he likes being taken care of. I built my life on self sufficiency, and that has been the greatest loss overall. I know my roommate likes having someone do all his shopping, meal prep and driving. He would not feel an inappropriate shade of shame when he needs to be led from the car to any unfamiliar building. I know this for certain as a roommate and a former employee. He can feel accomplishment for having requested or ordered something to be done and come back later to find things squared away. I always found accomplishment in doing for (and often by) myself.
I still cook, not as well as I once did, but with remarkably few mishaps. On bad days, it is an accomplishment to pour my own coffee and bring it to another room without spilling it. I’ve learned to find accomplishment in small things. I could never paint a fresh even coat in a room again, but I can still change locks.
I believe that luck is an exchange of fortunes and misfortunes that all evens out in the end, between individuals if not for one individual. This whole eye thing, that’s bad luck that forever stole so many of the things that had provided me true happiness. I’ve trudged and limped on since then. The exchange of luck came with my writing. At about the same time as the blood hemorrhage, I started being published regularly. This blog gets good readership, especially since I don’t advertise it outside my website, email signature and Facebook links. My short stories have usually been well received (usually.) I never expected to set literary or commercial worlds afire. Story submission can be grueling and brutal, more often than not a constant stream of rejection for personal and heartfelt work.. Thick skin is necessary. I learned to take pride in the small accomplishments.
My ability to submit to editors is hindered. I used to regularly review all unpublished stories that had been returned for re-submission somewhere else. I can usually now submit only one in the same timeframe. Despite my de-acquisition of responsibilities, I still get called away from the writing with frustrating regularity.
The thing most important to the overall view of my life is the first things that must be put aside. "Life is what happens when you’re busy making other plans," someone said long before John Lennon popularized a similar phrase.
Things are slower with the writing as with everything, but I am plugging on.
I got real close with the very last story I've written, "Stone Soup." A big "professional" magazine, Abyss and Apex, held onto it for months beyond their normal time. They said they had been considering it closely but ultimately chose other material. A bummer, but maybe because I've been spinning my wheels with the fiction efforts so much lately, I find it very encouraging.
"Stone Soup" a Sivil Galaxi tale based on the old folktale but with a couple of my psychotic twists.
It will be available, someday.
Monday, March 11, 2013
Rose Colored Lenses
My fiction piece "Through Rose Colored Lenses" is in its final month as part of the latest issue of the Breath and Shadow online magazine.
http://www.abilitymaine.org/breath/win13f.html
This is the only fiction story to date I have written about being or going blind, and it’s a black humor satire. Other free reads and links to paper publications that feature some of my stories can be found at www.kozzi.us
.
http://www.abilitymaine.org/breath/win13f.html
This is the only fiction story to date I have written about being or going blind, and it’s a black humor satire. Other free reads and links to paper publications that feature some of my stories can be found at www.kozzi.us
.
Friday, March 8, 2013
Forest for the Trees
"Things are never as bad as they seem
You just gotta learn to see
The forest for the trees...
"Huey Lewis, "Forest from the Trees"
I have the opposite problem from the old, often unclear expression quoted in that song. "Can’t see the forest for the trees" indicates an inability to see the whole for the individual components. In so many ways, physically and psychologically, I can’t see the details for the whole.
I can’t see what is in my vision clearly. My range of vision is also greatly reduced. At home, to walk from the living room and down the length of the house to the bathroom, I can get a sense of the hallway and know the territory, but any cat that walks under my feet gets inadvertently stepped on or kicked. I can’t focus on the end of the hall and the intervening steps. The hallway is clear unless something independently mobile puts itself in my path.
The bowling alley is a similar circumstance. I am familiar with the place. The playing area itself is one of my safest and most stable environments because lighting is consistent and the approach area is clear, all according to the sport’s rules. Navigating through the building from doors to bathrooms and lockers and the lanes I’m playing on is more difficult. I do as well as I do from years worth of familiarity with the place and massive effort. The specific invariable difficulties are inconsistent lighting, especially unshaded fluorescent lights at the front desk and vending machines. Sundays are easier than Thursdays; my locker is directly across from the lanes on which I bowl. Thursdays require navigation of the entire building. If I focus on the final destination, there’s no way to avoid all the people who will step in front of me, thinking I will see them to avoid them. With the differences in lighting, lack of contrasts and bustling people, it’s a slow walk. I need to concentrate on individual details rather than the entire environment.
Psychologically, I need to concentrate on specific trees more than the forest. There’s many things I procrastinated or delayed over the past few years, often with the thought "My vision will be better next week." That was true for a while, but did not hold true over time. I know now that there are things I will never be able to do again. The landscape of my life is littered with ongoing projects big and small that I need to complete, have someone else complete, or I need to give up on with acceptance of the impossibility for me. Becoming handicapped has been a humbling experience that has taught me to re-prioritize. I’m trying to release responsibilities in a responsible manner, make sure batons are passed in workable ways, where other people can pick up right where I left off with minimal disruption to others who are affected by the change.
My more private responsibilities and desires are harder to prioritize. There are things with eventual deadlines that I feel I should have more progress on. My fiction writing gets pushed aside for all the other things that come up. New writing is easy enough, but editing can be difficult, and my loss in acuity for reading web sites is one factor that has pushed submitting work to potential publishers into the nearly impossible category.
Slowly, and with help, I manage most things. Each task done is one less tree in the overgrown forest.
You just gotta learn to see
The forest for the trees...
"Huey Lewis, "Forest from the Trees"
I have the opposite problem from the old, often unclear expression quoted in that song. "Can’t see the forest for the trees" indicates an inability to see the whole for the individual components. In so many ways, physically and psychologically, I can’t see the details for the whole.
I can’t see what is in my vision clearly. My range of vision is also greatly reduced. At home, to walk from the living room and down the length of the house to the bathroom, I can get a sense of the hallway and know the territory, but any cat that walks under my feet gets inadvertently stepped on or kicked. I can’t focus on the end of the hall and the intervening steps. The hallway is clear unless something independently mobile puts itself in my path.
The bowling alley is a similar circumstance. I am familiar with the place. The playing area itself is one of my safest and most stable environments because lighting is consistent and the approach area is clear, all according to the sport’s rules. Navigating through the building from doors to bathrooms and lockers and the lanes I’m playing on is more difficult. I do as well as I do from years worth of familiarity with the place and massive effort. The specific invariable difficulties are inconsistent lighting, especially unshaded fluorescent lights at the front desk and vending machines. Sundays are easier than Thursdays; my locker is directly across from the lanes on which I bowl. Thursdays require navigation of the entire building. If I focus on the final destination, there’s no way to avoid all the people who will step in front of me, thinking I will see them to avoid them. With the differences in lighting, lack of contrasts and bustling people, it’s a slow walk. I need to concentrate on individual details rather than the entire environment.
Psychologically, I need to concentrate on specific trees more than the forest. There’s many things I procrastinated or delayed over the past few years, often with the thought "My vision will be better next week." That was true for a while, but did not hold true over time. I know now that there are things I will never be able to do again. The landscape of my life is littered with ongoing projects big and small that I need to complete, have someone else complete, or I need to give up on with acceptance of the impossibility for me. Becoming handicapped has been a humbling experience that has taught me to re-prioritize. I’m trying to release responsibilities in a responsible manner, make sure batons are passed in workable ways, where other people can pick up right where I left off with minimal disruption to others who are affected by the change.
My more private responsibilities and desires are harder to prioritize. There are things with eventual deadlines that I feel I should have more progress on. My fiction writing gets pushed aside for all the other things that come up. New writing is easy enough, but editing can be difficult, and my loss in acuity for reading web sites is one factor that has pushed submitting work to potential publishers into the nearly impossible category.
Slowly, and with help, I manage most things. Each task done is one less tree in the overgrown forest.
Tuesday, March 5, 2013
Interpreting Offers
People see a blind guy, and he’s all limpy and gimpy with problems sometimes more evident than legal but not full blindness. Many people are inclined to offer, and sometimes even provide unsolicited help.
Two guys in one of my bowling league give unsolicited help when my team plays theirs. They’ll see me hesitate at the step down into the well. They will flank me and move me down the step by lifting me by the elbows. The assistance is also followed by a pat on the back and a kind or humorous remark.
That type of help grates against my old self sufficiency standards. I’ve never said this to them. The annoyance is one of my personality quirks. They’re likable guys being altruistic and helpful when they see a needs. I sincerely appreciate the efforts, probably in greater proportion than the annoyance. It’s kind, cute in a way, and humorously entertaining.
I’ve learned to accept things like that. The acceptance took time, and the resistance definitely originated in my personality. I can be surly and abrasive like that, one of my many personality flaws.
But there’s another aspect of my personality flaws that maintains a positive effect. I feel and express appreciation for things done to me. I have a bemused gratitude for each time those two bowlers have lifted me up or down that precarious step. I have a tendency to cultivate too much appreciation for people who do small things with willingness and natural humility. Sincerely and freely given efforts at even small and relatively insignificant things earns somewhat disproportionate appreciation from me. I am one of those people who feels awkward asking for help. When an entire process where the help and getting it is easier than expected and remains dignified, my cynical expectations are surpassed. The best general circumstance I can compare this to for the non-disabled is the retail return of something defective, when you expect resistance from the store but find them friendly and accommodating.
I use the word cynicism with careful intention. My condition can bring out altruism in others, and that is not always sincere. I’ve learned that generally vague offers of any kind of help, especially the offers that begin "If you ever need..." are best avoided. Politically minded people are particularly prone to making empty offers, because they know they sound good publicly when heard making the offer. They are creating a public persona of altruism and express incredible inconvenience and frustration if actually taken up on such offers. It becomes a highly undignified process just to get a ride home from someone who lives a quarter mile away. This is a sharp contrast to people who have gone and are willing to again go miles out of their way to help out.
It’s another of life’s tightropes to walk. My reluctance to accept help has unintentionally offended friends with good intentions and intentionally offended people who only pretended to be friends. I have a tendency to say what’s on my mind, good or bad, with cold, analytical demeanor. I’ve developed a tendency to not test the sincerity of casual offers because sometimes I’d rather not know which people are fair weather friends.
Two guys in one of my bowling league give unsolicited help when my team plays theirs. They’ll see me hesitate at the step down into the well. They will flank me and move me down the step by lifting me by the elbows. The assistance is also followed by a pat on the back and a kind or humorous remark.
That type of help grates against my old self sufficiency standards. I’ve never said this to them. The annoyance is one of my personality quirks. They’re likable guys being altruistic and helpful when they see a needs. I sincerely appreciate the efforts, probably in greater proportion than the annoyance. It’s kind, cute in a way, and humorously entertaining.
I’ve learned to accept things like that. The acceptance took time, and the resistance definitely originated in my personality. I can be surly and abrasive like that, one of my many personality flaws.
But there’s another aspect of my personality flaws that maintains a positive effect. I feel and express appreciation for things done to me. I have a bemused gratitude for each time those two bowlers have lifted me up or down that precarious step. I have a tendency to cultivate too much appreciation for people who do small things with willingness and natural humility. Sincerely and freely given efforts at even small and relatively insignificant things earns somewhat disproportionate appreciation from me. I am one of those people who feels awkward asking for help. When an entire process where the help and getting it is easier than expected and remains dignified, my cynical expectations are surpassed. The best general circumstance I can compare this to for the non-disabled is the retail return of something defective, when you expect resistance from the store but find them friendly and accommodating.
I use the word cynicism with careful intention. My condition can bring out altruism in others, and that is not always sincere. I’ve learned that generally vague offers of any kind of help, especially the offers that begin "If you ever need..." are best avoided. Politically minded people are particularly prone to making empty offers, because they know they sound good publicly when heard making the offer. They are creating a public persona of altruism and express incredible inconvenience and frustration if actually taken up on such offers. It becomes a highly undignified process just to get a ride home from someone who lives a quarter mile away. This is a sharp contrast to people who have gone and are willing to again go miles out of their way to help out.
It’s another of life’s tightropes to walk. My reluctance to accept help has unintentionally offended friends with good intentions and intentionally offended people who only pretended to be friends. I have a tendency to say what’s on my mind, good or bad, with cold, analytical demeanor. I’ve developed a tendency to not test the sincerity of casual offers because sometimes I’d rather not know which people are fair weather friends.
Friday, March 1, 2013
Charcot Revisited
The Charcot "sharko" Foot seems settled and healed. Perhaps I should do another visit with the good foot doctor, Thomas Mancini, before declaring that, bur I say so from observation of my own body.
The biggest "wild card" advantage I had during the Charcot cycle actually came from the retina reattachment. I was dropping prednisone into my eye, which regulated and reduced the swelling.
On the eye doctor’s advice, I ceased the prednisone. I did this with reluctance; when I tried getting off the prednisone in spring of 2012, the Charcot Foot, then erroneously declared "past Phase One according to Doctor Dumbass, flared worse than before.
This time, judging by the lack of a flare up, Phase One was truly over. The leg has not reswelled with discontinuation of the eye drop prednisone.
I had discussed the side effects of the prednisone with my eye doctor on previous occasions. She wrote off the stomach problems as a probable diabetic thing, perhaps bad kidneys. Maybe her opinion changed the morning she treated the post-victrectomy pressure build up. That was a bad morning altogether, even before she stuck a needle in my eye. Perhaps watching me retch acidic bile convinced her that the prednisone was having the stomach acid overproduction. Who knows? Maybe my puking in her trash barrel was the real reason she stuck a needle in my eye.
With the prior massive swelling of the left leg below the knee last fall, my already hindered diabetic circulation was further impaired. This had led to the gangrene infection on the toe, the problem that sent me to Sturdy Hospital in May. That all recovered nicely, without amputation but with a loss of some fleshy tissue from the big toe. More devastating, the swelling reduced circulation to the structure of the foot. I did not particularly stay off the foot, particularly with Dr. Dumbass telling me all was well. During this time, the bones could not get the nutrients they needed. Those nutrients were there; the semi-regular blood tests always show my calcium on the high end of the scale. While swelled, the center bone of the ankle and the inner portion of the hell bone weakened, rolled and collapsed. My right leg shortened about an inch, and it will never be safe for me to put weight directly on that ankle. The crow boot I wear everywhere except to bed and in the shower keeps the weight off and protects the leg with immobilization. I don’t complain about the Crow Boot. Without it, I would rely on crutches, and there’s not as much I could do with my hands otherwise occupied. The immobilization by the Crow Boot has had its own side effect. My calf muscle has diminished, to the point that it is noticeably smaller than the left calf. The Crow Boot is not a temporary cast or brace, but a permanent fixture.
It is what it is. I am accepting about it, even when I freely acknowledge that the combination of bad leg and blind eyes is a particularly difficult combination.
Difficult, but not insurmountable.
The biggest "wild card" advantage I had during the Charcot cycle actually came from the retina reattachment. I was dropping prednisone into my eye, which regulated and reduced the swelling.
On the eye doctor’s advice, I ceased the prednisone. I did this with reluctance; when I tried getting off the prednisone in spring of 2012, the Charcot Foot, then erroneously declared "past Phase One according to Doctor Dumbass, flared worse than before.
This time, judging by the lack of a flare up, Phase One was truly over. The leg has not reswelled with discontinuation of the eye drop prednisone.
I had discussed the side effects of the prednisone with my eye doctor on previous occasions. She wrote off the stomach problems as a probable diabetic thing, perhaps bad kidneys. Maybe her opinion changed the morning she treated the post-victrectomy pressure build up. That was a bad morning altogether, even before she stuck a needle in my eye. Perhaps watching me retch acidic bile convinced her that the prednisone was having the stomach acid overproduction. Who knows? Maybe my puking in her trash barrel was the real reason she stuck a needle in my eye.
With the prior massive swelling of the left leg below the knee last fall, my already hindered diabetic circulation was further impaired. This had led to the gangrene infection on the toe, the problem that sent me to Sturdy Hospital in May. That all recovered nicely, without amputation but with a loss of some fleshy tissue from the big toe. More devastating, the swelling reduced circulation to the structure of the foot. I did not particularly stay off the foot, particularly with Dr. Dumbass telling me all was well. During this time, the bones could not get the nutrients they needed. Those nutrients were there; the semi-regular blood tests always show my calcium on the high end of the scale. While swelled, the center bone of the ankle and the inner portion of the hell bone weakened, rolled and collapsed. My right leg shortened about an inch, and it will never be safe for me to put weight directly on that ankle. The crow boot I wear everywhere except to bed and in the shower keeps the weight off and protects the leg with immobilization. I don’t complain about the Crow Boot. Without it, I would rely on crutches, and there’s not as much I could do with my hands otherwise occupied. The immobilization by the Crow Boot has had its own side effect. My calf muscle has diminished, to the point that it is noticeably smaller than the left calf. The Crow Boot is not a temporary cast or brace, but a permanent fixture.
It is what it is. I am accepting about it, even when I freely acknowledge that the combination of bad leg and blind eyes is a particularly difficult combination.
Difficult, but not insurmountable.
Wednesday, February 27, 2013
Turning a Blind Eye
Maybe one day, it'll happen to you,
you know lighting strikes without warning!
Who'll see you struggle and who'll hear you cry,
when everybody there just turns a blind eye?
"Blind Eye," Graham Goble as part of Little River Band
Occasionally, I find or seize advantage in my disability.
Don’t get me wrong. No temporary or fleeting convenience can ever compensate for all I’ve lost. I miss driving. I miss reading. I miss being able to watch a movie. I miss being able to observe people. I miss the clear and colorful world and all its little details that I cannot capture on my own. I miss working in my yard and plowing snow. I miss my independence and self sufficiency, things I worked so hard to develop.
I miss taking the trash out. I still do that when my roommate is not around sometimes, during daylight hours when I can see well enough to het down those thirty-four stairs to the barrels. If he is around, my roommate yells at me for doing it. He’s wrong to do that, but the fact that I have fallen down the stairs carry it out puts shades of gray into that statement. I miss being able to do things and being left alone to do them. Now, many people offer help that while appreciated, would be taken better if it was actually offered rather than forced. The situation of increasingly lost self sufficiency has hit me hardest. I can’t do much, and I used to do so much. I still wake some morning, and before opening my eyes, start telling myself I should do this or that item on long neglected lists. When I finally do open my eyes, I remember why that list of things I :should: do got so long. Despite sporadically failing health over the past year, my father helped me or more accurately did for me a number of things I could not do and some others could not do right.
I have not reverted to seeking every easy way, something I was firmly warned against at the age of 17. Now things are just too hard to get too wrong on my own. I realized last fall that I would have to leave my house. This month’s experiences of the blizzard and the loss of my father have only emphasized that.
When it comes to coping mechanisms, I do actively exploit the advantages of being blind. I got out and tried some shoveling, only to learn I really can’t do it. That’s a hard realization to accept. I can block it out even easier now because I can barely see the contrast between snow covered areas and the street’s bare asphalt. Just looking out the window isn’t enough for me to see; if I avoid a prolonged gaze that gives time for adjustment to changes in light, I can block out that stress rather easily. Out of sight, out of mind.
I stated that I dealt with my father’s death perhaps too well. My poor vision helped that. I could not see him in the casket. I could hear my mother’s reactions, but my disability spared me the sights. This worked with my cold core to keep me unemotional throughout the experience.
I cultivated that disability on that sad day. Even adjustment from eyes closed to eyes open needs time. So I kept closing my eyes and then reopening them to keep the adjustment from happening, to keep a blind eye to things too hurtful to see.
you know lighting strikes without warning!
Who'll see you struggle and who'll hear you cry,
when everybody there just turns a blind eye?
"Blind Eye," Graham Goble as part of Little River Band
Occasionally, I find or seize advantage in my disability.
Don’t get me wrong. No temporary or fleeting convenience can ever compensate for all I’ve lost. I miss driving. I miss reading. I miss being able to watch a movie. I miss being able to observe people. I miss the clear and colorful world and all its little details that I cannot capture on my own. I miss working in my yard and plowing snow. I miss my independence and self sufficiency, things I worked so hard to develop.
I miss taking the trash out. I still do that when my roommate is not around sometimes, during daylight hours when I can see well enough to het down those thirty-four stairs to the barrels. If he is around, my roommate yells at me for doing it. He’s wrong to do that, but the fact that I have fallen down the stairs carry it out puts shades of gray into that statement. I miss being able to do things and being left alone to do them. Now, many people offer help that while appreciated, would be taken better if it was actually offered rather than forced. The situation of increasingly lost self sufficiency has hit me hardest. I can’t do much, and I used to do so much. I still wake some morning, and before opening my eyes, start telling myself I should do this or that item on long neglected lists. When I finally do open my eyes, I remember why that list of things I :should: do got so long. Despite sporadically failing health over the past year, my father helped me or more accurately did for me a number of things I could not do and some others could not do right.
I have not reverted to seeking every easy way, something I was firmly warned against at the age of 17. Now things are just too hard to get too wrong on my own. I realized last fall that I would have to leave my house. This month’s experiences of the blizzard and the loss of my father have only emphasized that.
When it comes to coping mechanisms, I do actively exploit the advantages of being blind. I got out and tried some shoveling, only to learn I really can’t do it. That’s a hard realization to accept. I can block it out even easier now because I can barely see the contrast between snow covered areas and the street’s bare asphalt. Just looking out the window isn’t enough for me to see; if I avoid a prolonged gaze that gives time for adjustment to changes in light, I can block out that stress rather easily. Out of sight, out of mind.
I stated that I dealt with my father’s death perhaps too well. My poor vision helped that. I could not see him in the casket. I could hear my mother’s reactions, but my disability spared me the sights. This worked with my cold core to keep me unemotional throughout the experience.
I cultivated that disability on that sad day. Even adjustment from eyes closed to eyes open needs time. So I kept closing my eyes and then reopening them to keep the adjustment from happening, to keep a blind eye to things too hurtful to see.
Tuesday, February 26, 2013
Blocking It Out
Two things have me thinking about the mentor who took me under his wing when I was 17 and helped me find and develop and focus personal strength through my adulthood. The first was a comment on an old post here ("Finally, a Good Doctor") that asked about how I found center for my writing and overcame start of day writer’s block.
The second factor was the February 18 death of my father. This family trauma predictably ushered in a lot of family drama. I handled everything OK, maybe too well. My father and I had our rough periods. Extended family seem to fall short of understanding how I always avoided the list of disowned kids and grandkids. My family, including myself, we are not easy people. I can’t answer how I held on through specific rough times, but in general, the emphasis and a level of blind loyalty to family is something the old mentor specifically developed, sometimes even when he was also saying "You don’t go mentioning me around there." No, I am assuring my readers, the relationship with my mentor was not a form of "Greek apprenticeship."
The issues of my writing center and getting by with my family both stem to the guidance I received when I was 17 to 18. In short, the mentor had told me about negative things, "Block it out." That’s easier said than done. It’s not advice I was able to say "Yeah, sure," about and just do. I developed the skill over years. I’m still a work in progress.
I started writing at age 13 as a means of escapism. Fleeing to space now known as the Sivil Galaxi gave me a refuge when life on earth got to grim. I blocked out the grimness with distractions. I wrote longhand in those pre-PC days and carried a loose leaf notebook anywhere and everywhere. My father had times of direct pride in what I was accomplishing, but little specific encouragement or interest came from family. It’s possible that any interest they would have shown may have invaded my private places. I don’t think my father could understand that escapism aspect; when I was reading Lord of the Rings, he told me he thought only people with problems with reality read that type of thing.
I blocked out the bad things with my writing, with work, and sometimes with music. I block things out long enough to make any situation less stressful, then I deal with it head on. I have found myself both respected and despised for my tendency to be direct, my willingness to meet confrontation and call out bad behavior with some of my own, my knack of saying what other people will only think. From those kernels planted by my old mentor in 1986 and 1987, I did learn and internalize that not everyone can be pleased, and that what others say, think and do doesn’t matter if I am not treating them wrongly. There’s important distinction there; I question myself. I do not get from others or give to myself a blank slate to trample others. I hold to my beliefs and opinions without deeming those who don’t agree as automatically wrong.
I hope that earnest humility and willingness to agree to disagree comes across in the blog. I’ve seen many people’s surprise when they realize that I enforce my ethos (and pathos) only to my own life and maintain the feeling that everyone needs to make their own decisions about their own lives and tolerate everything on the other side of that line drawn in the sand.
I owe most of these unobvious good qualities to someone who helped me out so much in so many ways so long ago. His time was not wasted, and I have tried to live up to those ideals ever since.
The second factor was the February 18 death of my father. This family trauma predictably ushered in a lot of family drama. I handled everything OK, maybe too well. My father and I had our rough periods. Extended family seem to fall short of understanding how I always avoided the list of disowned kids and grandkids. My family, including myself, we are not easy people. I can’t answer how I held on through specific rough times, but in general, the emphasis and a level of blind loyalty to family is something the old mentor specifically developed, sometimes even when he was also saying "You don’t go mentioning me around there." No, I am assuring my readers, the relationship with my mentor was not a form of "Greek apprenticeship."
The issues of my writing center and getting by with my family both stem to the guidance I received when I was 17 to 18. In short, the mentor had told me about negative things, "Block it out." That’s easier said than done. It’s not advice I was able to say "Yeah, sure," about and just do. I developed the skill over years. I’m still a work in progress.
I started writing at age 13 as a means of escapism. Fleeing to space now known as the Sivil Galaxi gave me a refuge when life on earth got to grim. I blocked out the grimness with distractions. I wrote longhand in those pre-PC days and carried a loose leaf notebook anywhere and everywhere. My father had times of direct pride in what I was accomplishing, but little specific encouragement or interest came from family. It’s possible that any interest they would have shown may have invaded my private places. I don’t think my father could understand that escapism aspect; when I was reading Lord of the Rings, he told me he thought only people with problems with reality read that type of thing.
I blocked out the bad things with my writing, with work, and sometimes with music. I block things out long enough to make any situation less stressful, then I deal with it head on. I have found myself both respected and despised for my tendency to be direct, my willingness to meet confrontation and call out bad behavior with some of my own, my knack of saying what other people will only think. From those kernels planted by my old mentor in 1986 and 1987, I did learn and internalize that not everyone can be pleased, and that what others say, think and do doesn’t matter if I am not treating them wrongly. There’s important distinction there; I question myself. I do not get from others or give to myself a blank slate to trample others. I hold to my beliefs and opinions without deeming those who don’t agree as automatically wrong.
I hope that earnest humility and willingness to agree to disagree comes across in the blog. I’ve seen many people’s surprise when they realize that I enforce my ethos (and pathos) only to my own life and maintain the feeling that everyone needs to make their own decisions about their own lives and tolerate everything on the other side of that line drawn in the sand.
I owe most of these unobvious good qualities to someone who helped me out so much in so many ways so long ago. His time was not wasted, and I have tried to live up to those ideals ever since.
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