I had always loved driving. I listen to CDs, never a radio. The familiarity of beloved music both lulls and excites me. My mind cleared up for free association thinking. I would plot stories behind the wheel, "write" scenes and let my subconscious work through back burner-ed issues in fiction and reality.
In my infinite wisdom, I decided I would drive to my parents’ house on Christmas Eve 2010. I’m a Polack, kinda-sorta. Christmas Eve is supposed to be important. I had missed the prior year. I was better. I thought there was no reason to miss another. I was, after all, better.
I had not seen the only sibling I had any relationship[ with in a year or more and for some reason I still do not fully understand, I had a yearning to. Maybe in my mind there was a knowledge that my ability to see him would only get more limited, literally. I go through those phases sometimes, feeling nostalgia for relations that never truly existed. The last time we had spent together was when I helped him move into his house, circa 1985. I had nothing specific to say to him. I pictured the conversation we might have in free-thought imaginings during the forty mile highway road "home" to my parents’. The thoughts didn’t fill either his or my mouth with witty repertoire or fraternal bond. It was more of a rehearsal for the dry and generic questions he could ask of a former coworker than someone raised in the same house for ten years. (He’s a bit older.)
The drive down was incidental, mostly highway where I am buffered from oncoming headlights that would misadjust my focus. I knew the areas where I was coming and going, including the maze-twisted development in which my parents lives.
I had forgotten how dark the old neighborhood was. Planning had included underground wiring that left no poles for street lights. My old-fart, over-cautious, can’t-see-it-til-you’re-past-it driving allowed someone with highbeams to overtake me. The highbeams blinded me. I missed a crucial turn and could not see houses well enough to regain my bearings. I couldn’t call my parents or brother for help because I could not have told them where in the maze I was lost.
I found my way out of the neighborhood over the next hour. I went around the long and easier way with only two turns.
As for that conversation with my brother, my imaginings might have well been a script. He asked each of those generic, boring questions I had anticipated, no more and no less. I wondered why I had bothered. The answer came in my reflections on the way home, those free association subconscious resolutions. Over years of warm silence and close distance, I had come to realize that I had no relationship with any sibling, including this old favorite one. I knew with increasing certainty that the days when I could just hop in the car and visit him were ending for me. (Not that I had ever done so in decades.) I had gone to wordlessly say goodbye.
Wednesday, December 14, 2011
Tuesday, December 13, 2011
Stepping up from the Setback
The first setback in the vision recovery in November 2010 showed various effects. I was back to being uselessly blind for several weeks. Bowling teammates had to identify pins after the first ball. Driving had to stop. Reading was impossible and the TV unclear. I was back to being a toddler who wanted to do so much but couldn’t quite figure out how to get out of the car seat restraints.
The direct effects of the vision ranged from symptoms between retinapathy and vitreous problems. It started as a chunk of a floater with spider-leg tendrils. The chunk faded to a cloud within a few days. The cloud lessened over the following weeks.
My peripheral further diminished. Everything seemed darker. Gridlines were wavy at the edges, to the point that doorframes looked jagged in the middle. My color sense diminished, though I did not quite notice at the time.
I have been off the generic Prozac; diminished capacity depressed me but I did not look at that as a biochemical problem needing biochemical solution. The fact that this setback had resulted in one of my infamous low sugar rages convinced me otherwise. I resumed because the Prozac did control those breaks when my sugar was down.
Things improved by December. In my infinite wisdom, I decided I would drive to my parents’ house on Christmas Eve. I’m a Polack, kinda-sorta. Christmas Eve is supposed to be important. I had missed the prior year. I was better. I thought there was no reason to miss another. I was, after all, better....
The direct effects of the vision ranged from symptoms between retinapathy and vitreous problems. It started as a chunk of a floater with spider-leg tendrils. The chunk faded to a cloud within a few days. The cloud lessened over the following weeks.
My peripheral further diminished. Everything seemed darker. Gridlines were wavy at the edges, to the point that doorframes looked jagged in the middle. My color sense diminished, though I did not quite notice at the time.
I have been off the generic Prozac; diminished capacity depressed me but I did not look at that as a biochemical problem needing biochemical solution. The fact that this setback had resulted in one of my infamous low sugar rages convinced me otherwise. I resumed because the Prozac did control those breaks when my sugar was down.
Things improved by December. In my infinite wisdom, I decided I would drive to my parents’ house on Christmas Eve. I’m a Polack, kinda-sorta. Christmas Eve is supposed to be important. I had missed the prior year. I was better. I thought there was no reason to miss another. I was, after all, better....
Sunday, December 11, 2011
Arrigg-ance
I remained a patient at Joslin Center’s Eye Clinic for multiple visits from early Summer 2010 to late summer 2011.
Dr. Paul Arrigg saw ne on the afternoon of my first visit after I had been abandon by Dr. Deborah Schlossman ’s urgency to leave for the day without a full address to the concerns of a patient with serious multiple problems.
Arrigg made me feel listened to. On that first day, he gave careful examination to the left eye, which Schlossman had not.
I also learned some private emphasis on the value of second opinions. He did not agree with all of the assessments that Schlossman had recorded but had not discussed with me, including lifting restrictions.
Here’s the catch: while Arrigg listened, he did not necessarily communicate. He went over issues with the left eye, but he did not want to explore options he thought were necessary or might become necessary. Simple truth here: eye doctors do not like doing risky procedures on patients who have only one functioning eye, because of the surgery just doesn’t work, they can be held responsible. I understand that. I just want all the information up front so I can make an informed decision. If the procedure were to go wrong, O wouldn’t complain or sue unless the doctor had been drunk or grossly incompetent. My complaints about O’Brien and Negrey at Koch lie entirely that I was not told of the risks, and I feel that they withheld information for the sake of their company’s profits.
Arrigg’s approach could not satisfy or placate me over time. I have an almost psychic ability to sense lies or holes in a story. I’m also smarter than I ever found particularly useful and am very good at filling in the blanks with considerable (but not perfect) accuracy with minimal information.
The important thing to me is to be receiving accurate information. This has always been a quirk of mine in professional contact, relationships familial, romantic and just casually personal, and any other aspect. You don’t have to be nice, just be honest and forthright.
Arrigg fir more of the pattern of the great listener who tells you what they think you want to hear rather than what you need to hear. He would, among other things, continue conversations about my medical state with other doctors after they had walked away from me.
He outlined an overall plan that may have been Schlossman’s original but uncommunicated intention: he wanted to do cataract surgery and retina reattachment on the right eye and then so r4etina reattachment on the left eye. We moved in that direction including with Sonograms of the eyes that were massive overcharges in comparison to the other two facilities where I had the same procedure done. I was eager to proceed with anything that might give me some restoration and prevent further deterioration in the left eye.
Dr, Arrigg was not so gung ho about it. Maybe grin prognosis, unguaranteeable results and cost to this out of pocket patient for something with a potentially negative risk benefit analysis. He’d hinted during prior visits, but finally said in Summer 2011 that he absolutely did not want to do any surgery and said I would be better off staying closer to home for my treatment.
On my own again.
Dr. Paul Arrigg saw ne on the afternoon of my first visit after I had been abandon by Dr. Deborah Schlossman ’s urgency to leave for the day without a full address to the concerns of a patient with serious multiple problems.
Arrigg made me feel listened to. On that first day, he gave careful examination to the left eye, which Schlossman had not.
I also learned some private emphasis on the value of second opinions. He did not agree with all of the assessments that Schlossman had recorded but had not discussed with me, including lifting restrictions.
Here’s the catch: while Arrigg listened, he did not necessarily communicate. He went over issues with the left eye, but he did not want to explore options he thought were necessary or might become necessary. Simple truth here: eye doctors do not like doing risky procedures on patients who have only one functioning eye, because of the surgery just doesn’t work, they can be held responsible. I understand that. I just want all the information up front so I can make an informed decision. If the procedure were to go wrong, O wouldn’t complain or sue unless the doctor had been drunk or grossly incompetent. My complaints about O’Brien and Negrey at Koch lie entirely that I was not told of the risks, and I feel that they withheld information for the sake of their company’s profits.
Arrigg’s approach could not satisfy or placate me over time. I have an almost psychic ability to sense lies or holes in a story. I’m also smarter than I ever found particularly useful and am very good at filling in the blanks with considerable (but not perfect) accuracy with minimal information.
The important thing to me is to be receiving accurate information. This has always been a quirk of mine in professional contact, relationships familial, romantic and just casually personal, and any other aspect. You don’t have to be nice, just be honest and forthright.
Arrigg fir more of the pattern of the great listener who tells you what they think you want to hear rather than what you need to hear. He would, among other things, continue conversations about my medical state with other doctors after they had walked away from me.
He outlined an overall plan that may have been Schlossman’s original but uncommunicated intention: he wanted to do cataract surgery and retina reattachment on the right eye and then so r4etina reattachment on the left eye. We moved in that direction including with Sonograms of the eyes that were massive overcharges in comparison to the other two facilities where I had the same procedure done. I was eager to proceed with anything that might give me some restoration and prevent further deterioration in the left eye.
Dr, Arrigg was not so gung ho about it. Maybe grin prognosis, unguaranteeable results and cost to this out of pocket patient for something with a potentially negative risk benefit analysis. He’d hinted during prior visits, but finally said in Summer 2011 that he absolutely did not want to do any surgery and said I would be better off staying closer to home for my treatment.
On my own again.
Tuesday, December 6, 2011
What Real-World Folk Need to Know
My intention was to write the blog roughly chronologically in terms of the physical condition of blindness. For reasons that include the declining condition and the fact that my mind works by association rather than in any linear fashion, that’s not quite practical.
I am not seeing too well.
When people approach me, more often than not, I cannot recognize them. I have always been good at voice identification, which helps. People with distinct body shapes provide better cues automatically.
Environment of where I know people narrows down the field, but is far from foolproof. The smaller of my two bowling leagues has an active roster of fifty-four people. The larger approaches eighty. More people are not on the active rosters. I’ve lived in same neighborhood for eighteen years. I’m in a successful community group. I’ve worked in countless places, many with large staffs. I’ve managed seven apartment buildings over the past twelve years. I have more family than I can count, even if there are so very few actual relationships among them. I have three years of college and went to a high school with some four hundred people per graduating class. Frankly speaking, in my younger years I was a he-ho. I know a lot of people from a lot of different places.Please do not be offended if I do not recognize you, even when we are in an environment we regularly share
This happened twice in department stores in the past week. The second time went well. Voice helped, and the person casually said something that identified from where we knew each other. As contact is still regular, he knew I probably couldn’t place him, and I think he was slightly flattered that I did correctly identify him.
The first incident went badly. First off, the person touched me as first contact. I was big on personal space even before I went blind. I mistook the touch as some ignoramus in the store bumping into someone he could not identify as blind. When he said my name, my sneer turned into a squint of trying to see to identify. There might not be as much difference between those two expressions as I might hope.
In those circumstances, I have become quick in waving my hand in front of my own face and saying I don’t see too well and asking who I am talking to.
Please ignore the fact that after that point, I have a hard time with the social grace of pretending to remember someone that I just don’t remember among the thousands of people who have passed through my life.
My advice in any circumstance is to identify yourself when you approach, and if we are outside the common environment where we met, indicate from where we know each other. And don’t be insulted..
I am not seeing too well.
When people approach me, more often than not, I cannot recognize them. I have always been good at voice identification, which helps. People with distinct body shapes provide better cues automatically.
Environment of where I know people narrows down the field, but is far from foolproof. The smaller of my two bowling leagues has an active roster of fifty-four people. The larger approaches eighty. More people are not on the active rosters. I’ve lived in same neighborhood for eighteen years. I’m in a successful community group. I’ve worked in countless places, many with large staffs. I’ve managed seven apartment buildings over the past twelve years. I have more family than I can count, even if there are so very few actual relationships among them. I have three years of college and went to a high school with some four hundred people per graduating class. Frankly speaking, in my younger years I was a he-ho. I know a lot of people from a lot of different places.Please do not be offended if I do not recognize you, even when we are in an environment we regularly share
This happened twice in department stores in the past week. The second time went well. Voice helped, and the person casually said something that identified from where we knew each other. As contact is still regular, he knew I probably couldn’t place him, and I think he was slightly flattered that I did correctly identify him.
The first incident went badly. First off, the person touched me as first contact. I was big on personal space even before I went blind. I mistook the touch as some ignoramus in the store bumping into someone he could not identify as blind. When he said my name, my sneer turned into a squint of trying to see to identify. There might not be as much difference between those two expressions as I might hope.
In those circumstances, I have become quick in waving my hand in front of my own face and saying I don’t see too well and asking who I am talking to.
Please ignore the fact that after that point, I have a hard time with the social grace of pretending to remember someone that I just don’t remember among the thousands of people who have passed through my life.
My advice in any circumstance is to identify yourself when you approach, and if we are outside the common environment where we met, indicate from where we know each other. And don’t be insulted..
Monday, December 5, 2011
Biochemically Speaking
My first setback after recovering from the October 2009 Cialis-induced vitreous hemorrhage happened in November 2010. Temper loss triggered the sudden release of a massive floater. The wedge shaped dark spot had spider web tendrils and a slight cloudy aura. I saw it appear like a ghost emerging from a wall, just instantly appearing where nothing had been there moments before.
The temper loss was not a tirade, but what I call one of my "low blood sugar, high blood pressure moments. The high blood pressure came from frustration and annoyance, the low blood sugar from not eating. When those two factors combine they cause a genuine biochemical reaction. Eating fixes the problem fairly quickly, bur until I eat, I am just not right.
The floater release happened while I worked on something minor at home. The task required my close-up vision. There’s always more difficulty and frustration in that. The eyeglasses could bring things in focus, but in needing to constantly look away, the refocus time on each of too many little parts then needing to see things a distance away. Anyone who’s looked across a room through a magnifying glass know it doesn’t work. It had been a morning of constant glasses on, refocus, look, glasses off, refocus, look, refocus, etc etc etc.
Tick
It’s easy for me to loose myself in what I am doing and loose track of time. Time loss is even more pronounced by the measure of how long it took me to do things, and I still have not relearned just how long some basic things now take. My insulin had been taken that morning and I had run into the "three hour surge" when the time release insulin first kicks in. The suddenly lowering blood sugar can make me testy.
Tick
Add in some minor mistakes that got me in a self abusive mindset.
Tick
The final straw came with a cat leaping on the table and "helping" by tossing around the little parts that I would never be able ton find if they hit the floor.
Tick
Boom
I will say now in complete honesty that no companion pet or person has ever been hurt or attacked during one of my low blood sugar, high blood pressure moments. Inanimate objects, yes, many have been smashed or kicked. I have hurt myself during these biochemically imbalanced fits, including a recent serious injury. But somehow, despite the loss of almost all rationale, I’ve always directed that bloodlust rage inwardly. The cats run when I start screaming like a lunatic.
Eating corrects the imbalance, but aftereffects remain. I often need to nap to fully reset my mood. The severe swing and my shame for how I can get can trigger a bout of depression that can last for days.
The tendency to fall into those uncontrollable rages has also saddled me with some control issues. I’, not a control freak; my control issues are matters self control., at least the way I see it. Given my overall strength of personality, however, not everyone sees me that way....!....
The temper loss was not a tirade, but what I call one of my "low blood sugar, high blood pressure moments. The high blood pressure came from frustration and annoyance, the low blood sugar from not eating. When those two factors combine they cause a genuine biochemical reaction. Eating fixes the problem fairly quickly, bur until I eat, I am just not right.
The floater release happened while I worked on something minor at home. The task required my close-up vision. There’s always more difficulty and frustration in that. The eyeglasses could bring things in focus, but in needing to constantly look away, the refocus time on each of too many little parts then needing to see things a distance away. Anyone who’s looked across a room through a magnifying glass know it doesn’t work. It had been a morning of constant glasses on, refocus, look, glasses off, refocus, look, refocus, etc etc etc.
Tick
It’s easy for me to loose myself in what I am doing and loose track of time. Time loss is even more pronounced by the measure of how long it took me to do things, and I still have not relearned just how long some basic things now take. My insulin had been taken that morning and I had run into the "three hour surge" when the time release insulin first kicks in. The suddenly lowering blood sugar can make me testy.
Tick
Add in some minor mistakes that got me in a self abusive mindset.
Tick
The final straw came with a cat leaping on the table and "helping" by tossing around the little parts that I would never be able ton find if they hit the floor.
Tick
Boom
I will say now in complete honesty that no companion pet or person has ever been hurt or attacked during one of my low blood sugar, high blood pressure moments. Inanimate objects, yes, many have been smashed or kicked. I have hurt myself during these biochemically imbalanced fits, including a recent serious injury. But somehow, despite the loss of almost all rationale, I’ve always directed that bloodlust rage inwardly. The cats run when I start screaming like a lunatic.
Eating corrects the imbalance, but aftereffects remain. I often need to nap to fully reset my mood. The severe swing and my shame for how I can get can trigger a bout of depression that can last for days.
The tendency to fall into those uncontrollable rages has also saddled me with some control issues. I’, not a control freak; my control issues are matters self control., at least the way I see it. Given my overall strength of personality, however, not everyone sees me that way....!....
Sunday, December 4, 2011
Storm of the Eye
When November 2010 rolled around, I had settled to my new status quo of being legally blind but functional. The vitreous hemorrhage induced thirteen months before by a dose of Cialis had left me legally blind, but I could do most things, even if with great difficulty. I am a strong person, too strong by some accounts. I’d rolled with some pretty severe punches and salvaged what I could. I was writing more short fiction and getting published more. I could drive myself, at least to places where I knew where I was going without having to distract myself by looking for landmarks instead of concentrating on the side of the road. I could read with the aide of eyeglasses so powerful I could burn ants with them on sunny days. Refocusing between different lighting and distances took time, but the eyes did adjust. I was off the generic Prozac, and dealing with my handicap and my usual seasonal depression. The drug had begun to mix with life’s circumstances to give me"suicidal thoughts and feelings," so I had thought it best to stop.
I had reclaimed enough of my life to satisfy my self control and self sufficiency issues.
I lost that to a diabetic "low blood sugar, high blood pressure" moment.
This time it exceeded the biochemical rage. Something in the eye popped and a large floater let loose. My vision hazed over in a smear of gray and a large dancing chunk of a black.
It may have been scar tissue that released from the inner eye. It may have been a retinapathy thing. I called my doc at Joslin Center. He wasn’t concerned enough about it to push up my next appointment. The release of floaters, it seems, is to be expected in an eye that had been so traumatized.
The visual effect matched the cloud from the original vitreous hemorrhage, only this time in gray rather than blood red.
Driving and reading were lost to me again. When bowling, my teammates needed to tell me what pins remained standing after the first throw. The TV became indecipherable jumbles of quick motions in black and white.
The momentary loss of self control led to a more sustained period of self control and self sufficiency. The depression, now a combination of seasonal effect, helplessness, boredom, and a natural downswing of shame for the biochemical temper loss, worsened..
I had reclaimed enough of my life to satisfy my self control and self sufficiency issues.
I lost that to a diabetic "low blood sugar, high blood pressure" moment.
This time it exceeded the biochemical rage. Something in the eye popped and a large floater let loose. My vision hazed over in a smear of gray and a large dancing chunk of a black.
It may have been scar tissue that released from the inner eye. It may have been a retinapathy thing. I called my doc at Joslin Center. He wasn’t concerned enough about it to push up my next appointment. The release of floaters, it seems, is to be expected in an eye that had been so traumatized.
The visual effect matched the cloud from the original vitreous hemorrhage, only this time in gray rather than blood red.
Driving and reading were lost to me again. When bowling, my teammates needed to tell me what pins remained standing after the first throw. The TV became indecipherable jumbles of quick motions in black and white.
The momentary loss of self control led to a more sustained period of self control and self sufficiency. The depression, now a combination of seasonal effect, helplessness, boredom, and a natural downswing of shame for the biochemical temper loss, worsened..
Saturday, December 3, 2011
The Long and Winding Road
In October 2009 I took a Cialis to counteract the ill effects of taking antidepressants that I needed after having gotten my diabetes "under better control." I woke the following morning to see a vitreous hemorrhage gushing blood in my only good eye.
Blood filled the center of the eye and an existing cataract. I got scared into PRP surgery, with sessions before and after the cataract procedure. As neither doctor involved bothered to tell me that both PRP laser and cataract surgery increase risks of diabetic retinapathy, I was foolishly surprised when retinapathy developed while I was still undergoing the PRP
I was also not told of lense options for the cataract. I did not understand why I had NO reading vision while old men I knew had no problem reading with their new cataract lenses.
By summer of 2010 I was finding my new groove in life. I could not do some things at all, could do others with increased effort and caution, and could almost carry on with other things like my old self.
The more familiar I had been with what I was doing before going blind, the better I could handle it blind .
This blog is one guy’s personal and subjective experience, but it contains important take aways for general readers, particularly diabetics and eye patients. I have been accused of being a caustic cynic long before I ever started blogging.
By law of averages alone, I can’t be as dumb as I look. One important objective of this bit of cyberspace is to throw out ideas and experiences that should be given some thought by patients.
These warnings include:
Ask every question of your doctors, because they may not tell you.
Do your own thorough research on any procedure before undergoing it. Be sure to include the term "risk factor" or "side effect" in your search terms.
Diabetic light sensitivity may be caused by the routine dilation treatments during exams.
You have a right to your medical records and you should be familiar with them.
When you find a good doctor who is knowledgeable about his field and honest to you when he just doesn’t know, hold on to him. No one knows it all and the arrogant doctor who pretends to know everything can do you more harm than someone who recognizes and admits his limitations.
Treat people who developed physical handicaps late in life as you did before, and like they were whole people. Blindness and amputations are not catchy. Humor is what we gimps usually need most.
Appreciate those around you!
Blood filled the center of the eye and an existing cataract. I got scared into PRP surgery, with sessions before and after the cataract procedure. As neither doctor involved bothered to tell me that both PRP laser and cataract surgery increase risks of diabetic retinapathy, I was foolishly surprised when retinapathy developed while I was still undergoing the PRP
I was also not told of lense options for the cataract. I did not understand why I had NO reading vision while old men I knew had no problem reading with their new cataract lenses.
By summer of 2010 I was finding my new groove in life. I could not do some things at all, could do others with increased effort and caution, and could almost carry on with other things like my old self.
The more familiar I had been with what I was doing before going blind, the better I could handle it blind .
This blog is one guy’s personal and subjective experience, but it contains important take aways for general readers, particularly diabetics and eye patients. I have been accused of being a caustic cynic long before I ever started blogging.
By law of averages alone, I can’t be as dumb as I look. One important objective of this bit of cyberspace is to throw out ideas and experiences that should be given some thought by patients.
These warnings include:
Ask every question of your doctors, because they may not tell you.
Do your own thorough research on any procedure before undergoing it. Be sure to include the term "risk factor" or "side effect" in your search terms.
Diabetic light sensitivity may be caused by the routine dilation treatments during exams.
You have a right to your medical records and you should be familiar with them.
When you find a good doctor who is knowledgeable about his field and honest to you when he just doesn’t know, hold on to him. No one knows it all and the arrogant doctor who pretends to know everything can do you more harm than someone who recognizes and admits his limitations.
Treat people who developed physical handicaps late in life as you did before, and like they were whole people. Blindness and amputations are not catchy. Humor is what we gimps usually need most.
Appreciate those around you!
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