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.

Undue Influence

For a year stretching between 1986 and 1987, I was fortunate enough to have a mentor. I worked with him at the long-defunct restaurant The Maple Root Inn, and greatly considered him a father figure. Despite working two jobs and being utterly dedicated to his wife and four kids, he had taken this punk kid under his wing. He provided direction and outlook that was desperately needed. I really needed more than he or anyone could give. I am not a child from a "broken" home, but things were pretty badly shattered and had been for years. I’ve regretted the loss of the mentor but never blamed him and did my best to implement the things he taught. I was lucky to have him. His influence includes balancing loyalties to both myself and the troubled family, fighting my own lazy streak and what was then (if not still now) my crazy streak. I still think I never succumbed to drug addiction or alcoholism due to his influence.
Those coping mechanisms laid out for me so long ago have carried me through my life, particularly with the strength needed to get through these past few years as my eyes and leg have failed me. I had an inherent but inconstant strength, but my old mentor taught me how to tap into it and provided direction.
A lot of people, including some who do not particularly like me, have been amazed and complimentary in how well I have dealt with the disabilities. I credit that strength to the old mentor. I credit the strength to have stood tall and strong through so many things over so many years to the influence of someone I have not seen since 1987.
At http://www.kozzi.us/LongWay.html,
I have posted an essay published in 2006 by Dana Literary Society Online Journal. This essay dealt with a lot of things that have come up over the past month, including family irregularities and vulgarities and the fact that I am living in a very difficult property to manage and maintain at the best of times. The essay made it clear that I relished the challenges of daily life and the little difficulties that reminded me I was alive. That outlook also came from my mentor, who’d asked pointedly, "You have to have everything the easy way?"That challenge adjusted my attitude and energized my efforts. I don’t give up on this because they prove difficult.
That outlook has been invaluable.

Impaired Driving

For years, I drove despite one eye total blindness.
I did not drive overmuch. I bought the jeep Wrangler in late 2005 with 115,000 miles and sold it in December 2012 with about 145,000 miles. I was mostly local and worked out of my house and mostly in my own neighborhood. I planned shopping of all sorts for one day per week and generally gassed up to a full tank on that day, need it or not. Less than once a month I would make a strip to New Hampshire or Southern Maine on business for an antique dealer for whom I worked.
I had no accidents. Certainly other will find this post via search engines when their driving is "prohibited" when they develop problems in one eye. Here’s some tips and cautions.
Always remember that everyone assumes you can see them. You must be a defensive driver who anticipates everyone else’s stupidity.
The people in your life will always have reservations, concerns, and opposition to your driving. To get angry about this is to be angry that they care.
Your field of vision is reduced on the side you cannot see out of, so you must compensate for that. My blind eye was on the right. I stopped making left hand turns at uncontrolled intersections, which require a full range of vision. I’d turn right, then make a safe left hand turn and circle the next block. The safety far outweighed the inconvenience. Passengers who objected to the roundabout ways were asked if they would prefer to walk.
I still tended to be a cowboy when I knew the immediate area was free of hazards. This could make people who knew I had eye difficulties very nervous.
Pedestrians will always be a problem, and if you can’t see perfectly, you are extremely likely to miss some spots when washing their blood from your fenders. When driving through parking areas, drive slowly and with the destination building on the side of your good eye. Better yet, drive on the accessway further away from the building. Again, people will always assume you see them.
Park in what are called "sprews." A sprew is a spot that you drive into the bumper-to-bumper adjoining spot and pull through to the next. When you leave, you can pull straight out rather than have to back into the accessway where drivers can carelessly rush you and pedestrians can walk behind you. This means you can’t often park close to the building, but the ease in getting out again was always worth this sacrifice to me.
Don’t resume driving until you’ve had time to get used to the missing depth perception. Depth perception tends to be less important from four to six feet away as your brain will fill in the differences. It will take time to get used to and develop those "automatic translations."
And the basic stuff that applies to all drivers becomes even more crucial. Don’t drive overtired, after any alcohol or on any new meds. Don’t drive with distractions. Need to use the cell phone? Pull over.

The Stable System

My "lack of control" regarding my blood sugar developed over years. At the point of "taking care of myself better" circa 2005, I had stable but definite signs of old diabetic damage. Diabetes effects became opportunistic in the face of other problems that developed independently. Throughout those years I had a stable situation that resulted in good health, at the very least as defined by how I felt.
Those years of being a "better" diabetic–never a good diabetic–destabilized me. I have not felt healthy since.
I know this sounds like a load of bull poop. I can’t count how often I am told I am wrong about how I felt and how I feel. I am told that what I report just isn’t possible.
I don’t think it’s that impossible, and I can explain it with knowledge of another hobby I have mostly had to give up to being blind.
If you set up a new tropical fresh water fish tank, you have to create specific conditions that the fish find comfortable. Otherwise, they die. There’s things you shouldn’t put in the tank, there’s things you can’t put in the tank, and things you can’t put in together. There’s some fish such as tiger barbs that thrive in a new tank while your desire for something like neon tetras must wait until the tank’s enclosed system ages. You set the tank up successfully and get it off to a good start.
Time passes. Your diligence fades and you pay less attention to the tank’s ongoing water conditions. The fish in the tank continue to thrive with minimum care of filter cartridge changes and daily feeding. You stop testing the water. Some fish die by attrition. You get more of the same to maintain a school, and they die off quickly. Testing shows that the water is not healthy for the fish. You effect changes to accommodate new fish you want to add, and the changes kill all the old fish that were thriving in the "unhealthy" water. Because the bad changes had happened over time, the old fish adjusted to it.
My body was an enclosed system thriving under bad conditions. The changes I made under my GP’s guidance were textbook and statistical moves towards the way things should" be and they massively disrupted my thriving unhealthy system. The chain of events of unintended consequences directly led to the loss of the good eye and the Charcot foot.
My impossible desire isn’t going back to not taking that dose of Cialis, but going back and never putting myself under care and making those efforts to "take care of myself better." I never needed boner pills when I "wasn’t taking care of myself." Every other function worked better back then too.
My GP says that it all just caught up with me. I find the timing of the decline too perfectly coincidental to believe anything other than that the GP’s statement is just more bull poop.

Hungry Years

Home testing the blood sugar is probably the most direct way of knowing the numerical value of your immediate blood sugar level. I refuse to do it for many reasons.
(The repeated warning: don’t try this at home kids, at least not until you intimately know your own body, how it reacts to different things. I am telling about the how’s and why’s of my own circumstance, but I encourage no one to follow this path.)
I take the diabetes seriously and pay attention to it. I simply place higher value on how my body feels and functions than I do what number a chemical test gives.
I was out on my own at a young age, too young. I tested my diabetes via urine testing methods up until the point supplies ran out and the choice was taking limited funds that were usually trying to catch up on rent arrearage and buy either food or testing supplies. I was renowned by friends in those hungry years at age 19 and 20 for having no food in the apartment, not even saltine crackers and peanut butter. I survived largely by working foodservice jobs, which provided at least one solid meal a day on break. The night’s leftover bake potatoes were a feast for home consumption. I became adept at opportunistic feeding, a mouthful of tuna salad seized while retrieving something from the walk-in refrigerator or a swallowed-whole slice of cheese or lunch meat. F I was as truly as smart as I claimed, I would have committed the more typical forms of restaurant theft, with sides of beef tenderloin or cases of burgers or chicken patties out the back door during trash runs. I think I was just too afraid to get caught, that visiting coworkers would see "hot" food in my apartment and "know" I was a thief.
I learned to not talk about needs or being broke in those years. If people know that about you, their eyes fall to you first when someone’s wallet is stolen from their jacket. A waitress’ tip-filled apron had been stolen at one place I worked. Another employee had accused me outright, without privacy or tact. I remember how I felt that day. I remember that same coworker bringing in return slips from her department store job so her restaurant coworkers could fill the slips out. This allowed my accuser to steal cash from her other job. Ne of the other "prime" suspects was caught a few days later with "marked" tips in his pocket. You could trust me with your money, but not with a plate of French fries.
These hungry years shaped diabetes management. Testing was a luxury I could not afford. I had to alter insulin doses when I could not afford to eat enough to maintain the insulin dose, or afford to eat at the times the insulin dictated I must. I developed a habit of eating for the sugar. Gone were the luxury days of oatmeal for breakfast. Instead, I carried plastic bags of Tang and often mixed it in my mouth from a bubbler (which is Rhode Island for "water fountain".)
This era is probably where the old damage from diabetes occurred within my body. For a while in the early to mid 1990’s, I had a job that included insurance and tried being a good, doctor-visiting diabetic. It lasted just long enough for me to know problems existed. All the problems were put to me by doctors as crucial things, but before long I was without means to follow up on anything. The same things came up in the interim, and pretty much all the problems were still there at the same level when I started indulging myself with doctor exams from 2005.
I say that precisely: "still there at the same level." In the intervening years I had learned to walk the balancing act that the diabetes requires. Without sugar testing that had become the vogue and accepted standard, I had managed to manage the diabetes without doing damage to myself.
I had a stable system that I managed by feel.

Flashpoint

My GP and I have certain fundamental differences in approach and philosophies. He wants to paint by numbers with an objective of a long life. I want to feel good for as long as I happen to live, a quality-over-quantity preference. The last couple years of diminishing abilities has only reaffirmed my outlook.
Any doctor would have gasped in horror at my numbers in 2005 when I started seeing my GP. Perhaps a diabetes specialist would have had more experience with diabetics who were "living high" and had taken a more cautious approach to making changes. It's way too late to speculate now. Egged on by a couple friends who felt I didn't take care of myself, I went along with the changes promoted by my GP, the largest of which was doubling my dose of insulin. He did not change my daytime dose, but specifically prescribed taking an equal dose at night. Gauging my sugars by feel, I knew that most of the time my sugar ran high, it was doing so only at night.
I specify here that my highs and lows were relative changes to my own bodily system. The lows were not numerical lows by standard practices. My lows would be sugar-shock coma-inducing highs to a fragile diabetic.
This did work at drastically lowering my A1C.
This period of change, from spring to summer of 2005, also spelled the end of what I refer to as "The Healthy Years." My numbers improved, still not to the GP's satisfaction, but I felt like crap. The better my numbers got, the worse I felt.
With the onset of diabetes at age 4 and a hospitalization at age 12, 2005 at the age of 36, became my third flashpoint with the sugar. This was a period of massive change, and none felt then–or now–like changes for the better.
I encountered this GP in kind of a literal way, by accident. Results of a car accident had left me with a broken shoulder, and I ended up with physical therapy in the GP’s practice. The accident triggered a mid-life crisis. It became a practice run at being needy
My vehicle was a stick shift, unworkable with a shoulder brace and sling. I was living alone at the time of the accident and the medical aftermath. Some people in my life at the time proved themselves more loyal and caring–more there–than I would have expected. Some of the ones I would have expected to be there for me (because I had been and always was there in their times of need in so many ways) were either conspicuously absent or made the inconvenience factor well known when they were there.
I think part of the reason I have adjusted so well to the permanent disability was for having lived through that temporary bout. I looked at the new presence of an internist doctor in my life as fate, especially while in the middle of a mid-life crisis. Loose and independent threads had seemed to converge. With clearer thinking, with less acceptance of "fate" to where I ended up. With less criticism and disfavor from some of the people closest to me and if other factors had been different at the time, I would not have continued seeing my GP when the shoulder issue cleared up.
I do firmly believe that in the entire cycle of events, I would not be in this permanent predicament of neediness now.

Onsets

Another aspect of the Mayo Clinic’s website statement "The A1C test is a common blood test used to diagnose type 1 and type 2 diabetes..." bothers me. Specifically, I do not know that the part "common blood test used to diagnose type 1" is true.
Type two is in many ways a different disease. It’s onset is gradual and the patient can live for years without knowing they have it.
The A1C test measures sugar coating on cells in the blood. This coating forms over two to three months until the coated cells die by attrition. The A1C test can diagnose Type 2.
The onset of Type 1 is not a matter than the pancreas reduces insulin production or the body has increased difficulty metabolizing or using the insulin. In Type 1, the pancreas just stops. There is no gradual development of the condition that would show up in a test that calculated sugar in the blood over time. Doctors diagnose Type I "Diabetes Mellitus" by the symptoms in front of them. A test of the here-and-now blood sugar levels will confirm the symptoms of extreme thirst, constant urination, tiredness, apathy, sweet-smelling breath and a quick question to the patient or hir parents about weight loss.
It seems to me that claiming an A1C test as a useful diagnostic tool for Type 1 is more a matter of running profitable tests.
I could be wrong; this wouldn’t be the first time in life. I am basing the commentary on near-40 years of diabetes experience rather than academic studies telling what tests can be run for information and profit to the industry. But I don’t think I am wrong.
My onset was sudden. I do have memories of the day, true memories, not memories of retellings. I was wasted and drained and had lain down on a picnic table in the back yard and had no interest in being called for dinner. There’s no true or retold memory of a lead in to illness.
The other true diabetes-onset memories are odd snippets. I do not remember the first shot of insulin or blood tests in the hospital.
I do remember my older siblings not being able to visit, but they had been dragged along to wave from the end of the hall of the children’s ward. I remember that because one of my brothers always terrified me and I felt safer knowing he could not get near.
I remember being given tomato juice for the first time and gagging on it in distaste.
I remember playing "Old Maid" with my grandmother. She was sore winner about it, way too triumphant for having won against a four-year-old who had just learned the game. I remember suspecting she cheated. I observations of her character later in life dissuaded me from thinking that even if she didn’t cheat, she would.

Price Pact with a Devil

The break in the Eli Lilly Company’s monopoly of the insulin industry came circa 1997, from the Lilly company itself in a situation like following national news by watching Jay Leno monologs.
I received an important notice from the pharmaceutical company. I was on ancient mailing lists, mostly from syringe manufacturer BD. The Lilly Company was concerned about me and wanted to remind me about the dangers of making changes to insulin outside doctor supervision. They didn’t send me such a notice when they caused diabetics who could not afford doctors when they eliminated the availability of beef and pork insulin, but they had become aware of a new peril to diabetics everywhere.
After years of monopoly and manipulation by the Lilly Company, the Humulin patent had run out. Wal-Mart’s pharmaceutical division had produced a generic.
Diabetics needed this urgent reminder for their own health and well being. They should not change insulin to a potentially unreliable product. The letter had a bunch of scare tactic propaganda in it. I choose to curtail memory to avoid incorrect memory or embellishment, but the bottom line message was one that indicated that Wal-Mart was the mortal enemy of diabetics everywhere. And as reward for being a "loyal Lilly customer," the mailing included a coupon for $5 (maybe it was $10...old memory again) off any purchase at K-Mart.
In the time since two-eye blindness onset by a dose of the Lilly product Cialis, the Lilly Company started manufacturing the generic insulin for Wal-Mart. Maybe it was even longer than that; time flies and remembering exactly has that jarring realization that a "four year old" never-seen cousin is actually now in college. The price has gone up a couple times since then, but remains less than $25.00 as opposed to the $50.00+ of non-generic.
To the best of my knowledge, the generic is still exclusively available only at Wal-Mart; I have not re-checked that fact since the last time I was away from home and needed insulin on the spot. The generic is packaged under Wal-Mart’s Reli-on "brand."
I know of and agree with many criticisms of Wal-Mart’s corporate practices. Electronics and powered devices often have models numbers or price bar codes that are exclusive to Wal-Mart while the same item has the same bar code at every other store. Despite quality or social issues regarding their employees, Wal-Marty earned considerable loyalty from me. Wal-Mart stood up to at least this one pharmaceutical giant in a way that only another corporate behemoth can successfully do. Wal-Mart has saved me thousands in the past 15 or so years, and I have never felt as if I had gotten a bad vial.
It also is apparent to me that Wal-Mart’s $4 prescription program also triggered a small pharmaceutical revolution that has been of direct benefit to American consumers. Pharmacy chains have had to come up with similar programs to stay competitive. This reaped benefits for private consumers and Medicaid programs. I lament the blow to smaller mom-and-pop pharmacies, but the competition brought too much gain to too many people for me to join any Wal-Mart protest movement.
Wal-Mart is the giant corporate enemy that is in front of our faces, an obvious enemy. I’d prefer to save my revolutionary’s energy for the less obvious enemies such as pharmaceutical companies who disguise their pursuits of corporate profit under distractions like "it’s so dangerous to change away from our product lightly."

Getting Porked

I used insulin derived from pork and beef pancreas until sometime in the mid 1990’s. With the human insulin –called Humulin– having been developed and patented in the 1980's, pharmaceutical giant Eli Lilly and Company made a concentrated effort to make pork and beef insulin obsolete with massive price gouging that made it cheaper for self-pay patients like me to switch ro humulin. A vial of animal insulin was $10.00 in 1992. The same vial approached or exceeded $20.00 by 1997 (maybe before then,) and had perhaps exceeded the price of humulin. Then Eli Lilly and its fine company just stopped making old-time insulin because it was no longer cost effective to make for "so few" patients. Lobbying of doctors helped force the migration of patients to the patented product.
My memory of the exact when of this is faulty and I cannot recall the year of change with any certainty, but the price of the animal insulin seemed to rise several times per year while I lived near a Pawtucket Walgreens from 1991 to 1994. I don’t remember where I was living when informed by Walgreens that Lilly was discontinuing animal insulin. I specify this in the spirit of remaining as accurate as possible. I did not have much choice other than to buy the patented Humulin at higher costs. The same vial exceeds $50.00 at any pharmacy now, which to me demonstrates continuous greedy gouging.
I repeat that from what I could feel, the only change for me with Humulin was that my body metabolizes it "better" than pork and beef insulin to the point that I do not feel physical symptoms until the blood sugar has fallen critically low. I sensed no change in the way the insulin actually reacted to food. If anything, the bodily sensation that "all" insul;in had been fully consumed after 12 hours was more definite with the human insulin than the animal insulin. The animal insulin seemed to last longer.
I made the change without doctor supervision. This was not a choice but the result of an utter lack of choice, financially. My only adult exposure to diabetes specialists had been an expensive, distressing and discourteous experience that left such a bad taste in my mouth, I still feel it in my teeth some 20_ years later.
Nor did I have a choice in changing insulin. The animal insulin was discontinued by the only manufacturer in favor of Humulin. Monopolist Eli Lilly had me over a barrel and would pork me like only humans do.

Feeling it Out: Insulin Changes

I used insulin derived from pork and beef pancreas until about 1997. With the human insulin –called Humulin– having been developed and patented in the 1980's, pharmaceutical giant Eli Lilly and Company made a concentrated effort to make pork and beef insulin obsolete with massive price gouging that made it cheaper for self-pay patients like me to switch ro humulin. A vial of animal insulin was $10.00 in 1992. The same vial approached or exceeded $20.00 by 1997 (maybe before then,) and had perhaps exceeded the price of humulin. Then Eli Lilly and its fine company just stopped making old-time insulin available because it was no longer cost effective to make for "so few" patients. (If this statement is factually wrong, blame the Walgreens pharmacist who said this at the time. It is possible that Walgreens just did not want to carry the extra product anymore.) Lobbying of doctors helped force the migration of patients to the patented product.
Insulins always seem to come with warnings not to change dose or type outside a doctor’s supervision . I could not afford a doctor back then. I just made the switch and paid attention to what my body told me.
In a big way,"Humulin" worked better. My body seemed to absorb it more efficiently. That was not entirely a good thing, especially for a diabetic who managed by feel. Humulin absorbed so well that physical symptoms no longer served as the first signs that my blood sugar level was hitting a relative low. Instead, the big change came in mood. On good days, I could say, "wow, this minor frustration is irritating me way too much. My sugar must be going down, so I’d better eat." On really good days, I would notice nothing until the sugar was critically low. On moderate days I could tell by a surge of temper if things had been calm for a while. On the bad days, escalating frustrations triggered explosion. Those fits always cause embarrassment. When they’re witnessed, or even worse, when they end up directed at people I care about, they trigger lasting bouts of depression. Here’s a secret of the psychology that has raised many eyebrows: I am "wound too tight" in overcompensation for that daily potential to always "lose it" because of constant changes and fluctuations in by biochemistry.
True enough, it’s easy to say, "it’s lunchtime" or "I shot up four hours ago" and stop what I’m doing to eat. Call me OCD or ADD, but I lose track of time easily, even back when I could easily see clocks.
The old pork and beef insulin was consistent in giving physical hints that the sugar was low. I felt them more readily. That does not mean that I was without that biochemical irritation or surge of black temper, but those things happened less frequently on the old insulin.
Being a financially desperate diabetic pushed me into self management outside accepted practices. Desperate lives lead to desperate living. I learned how to manage my condition by feel, and in so many ways, I did remarkably well. No doctor would agree: they manage by blood sugar numbers, not by how their patients feel.

Paying Attention

One of the most frequent questions I have been asked in the two and a half years the vitreous hemorrhage kicked off this experience of going blind: "Have your other senses gotten better?"
The answer is no. I have not become Marvel Comics’ Daredevil with extraordinary abilities of smell or hearing or touch.
While by no means a severe case, as a diabetic of nearly 40 years, I do have some neuropathy, which is pretty much inevitable. My tactile senses have slightly diminished over time, and I am not sure that my fingers retain enough acute sensitivity for me to even learn braille.
My roommate thinks my sense of smell if better, but am pretty sure it is more of a matter of comparison and that his sense of smell is not good, in part because he is not one to pay overmuch attention to his surroundings. Someone in this urban neighborhood has been burning wood throughout the winter. The roommate has not been able to sense that while it often triggered my sinuses throughout this past winter. I can smell the beginnings of mold on bread, but I also specifically sniff for it. He will deny any off odor; I will usually leave that bread for him and he will throw it out to the birds without comment in a day or so.
I have not explored the sense of taste as compensation for the diminished sight. In a house full of moldy bread and kitty litter boxes, this does not seem very practical.
Hearing most of all requires paying attention. I am lucky that I have always been very good with voices, which was perhaps compensation for the fact that I was never very good with faces. I got a job once years ago by my voice recognition: as I walked through the door following an interview I answered the ringing phone and recognized the voice of the interviewer as she asked for someone else after accidentally calling that person in my number. The ability worked well with taking the visual cues I can discern un identifying who I am talking to. I work with what I have left, as best as I can.
Heating, however, is reliant on being free of distraction. When bowling, I can often–but not unerringly–tell how many pins I hit when shooting for a spare by listening for the collision. If there are other nearby rolls, this obviously does not work so well.
In loud or clamourous settings, I often don’t hear when being spoken to directly.
\Nor can I eavesdrop with any certainty. I typically don’t have the motivation. If I want to know something badly enough, I typically have the tactlessness to ask on point.

Shameless Plug

I generally keep the blog and my fiction separate (there’s that compartmentalization thing again)but of all stories I have ever written or probably ever will write, this one deserves an extra push.
Some have noticed my "bitterness" about the blind thing while others have noted the humor I try to infuse (and other have noted both with the connection between angry people and that over-the-top Three Stooges humor.)
WTF?!
Paperback or Kindle http://www.amazon.com/dp/0982991347
http://www.barnesandnoble.com/w/wtf-rose-mambert/1107930675?ean=9780982991343&itm=5&usri=wtf%3f%21
I do have to add a language advisory to this one as I do usually avoid excessive cussing in my writing, but what’s a few F-bombs between friends? is finally available...too late for Christmas, unfortunately. If you only ever get one anthology with one of my short stories, this is the one! This urban fantasy is full on with my warped, politically incorrect humor in a sharp satire about Providence during the shameful Ciccillini administration. "The Rats of the Renaissance City" in WTF?!
es, the book's cover illustration was inspired by my story!

Setbacks and Disappointments

I call the incidents of large floaters breaking loose in my eye "setbacks." That is a gross understatement. Each could have stopped me dead in the tracks of whatever I was trying to achieve at the moment, and for that day or week or month. The first setback in November 2010 did just that. I let it. I reverted to the state of blood obstructed vision from the original vitreous hemorrhage. I sat in the recliner day by day, listening to the TV.
The February 2011 release caused more stress. The winter had been rough in regards to maintaining my responsibilities. Three apartments had emptied. I was not up to the work of rehab. A quick job such as upgrading window blinds became next to impossible. I couldn’t see up close even when things were clearer, thanks to Doctor Negrey’s decision to install a cataract lense that killed my close vision.
In 2003 I had single handedly turned over six apartments in one month. This time it took nine months to turn over three. Getting help proved difficult. Friends with good intentions made promises out of pity. Some made it worse when they realized they didn’t really want to help. They became too embarrassed about their second thoughts to even call to cancel. In some cases, waiting for the promised dat of help then waiting around all day for someone with no intention of actually showing up wasted weeks.
I ca be a pretty difficult guy in a lot of ways. I’m strong and cocksure. I fought since adolescence for self control and self sufficiency. I’m not arrogant–I do not believe myself better than anyone else, just equally good as anyone else, better at some things, worse at others. Cocky, yes. Arrogant, no. But a lot of people can see that distinction about as well as I can see the directions on the back of an aspirin bottle.
I was never big on relying on other people and the multiple disappointments with multiple people I am genuinely fond of did lead to emotional shut down. I’m prone to those. In some ways the lifelong fight for self sufficiency was too successful. Failed results when reaching out to or relying on others kicks me back to cold and fierce independence.
I’m struggling to accept that those lifelong default modes just won’t work well anymore. Each helping hand I push away usually leads to another stumble over a curb or down the stairs.
Parents, teachers and mentors found my strength of will banes of their existence. People always found my infamous "don’t care, don’t need anyone" attitude abrasive.
That cocksure strength prompts me to call these massive regressions and relapses "setbacks." I recover from each less completely. To apply a more serious label for them will only speed my loss of self control, a loss that seems inevitable at this point.
But I won’t let it happen any faster than nature rips it away..

Scare Tactics

I understand the natural questions that come about from some of my past decisions concerning my health. The post "Braying to a new God" begs the question, "How can you be so >censored< stupid to not have PP surgery after you were told that you would be blind in six months?!"
The answer may clue in a lot of people who often just shake their head at me with complete incomprehension.
I was an average sized child when the diabetes struck at age 4. Upon entering first grade at the age of 6, I was 45 pounds. Upon entering third grade at age 8, I was 45 pounds.
My mother would see me just glance in the direction of a stray Oreo, and she would warn me "If you eat that, the doctors will have to cut your toes off." Sometimes, it was "If you eat that you’ll go blind." The problem with that was that I had neither gone blind nor had toes cut off when I did secretly seize a stray Oreo. I already knew the scare tactics were untrue.
My parents were not well educated in diabetes care. The family pediatrician was an old stout German woman who wore too much perfume and had a remarkable inability to color in the lines when it came to her lipstick. She gave most kids lollipops to keep them from hating her. As I couldn’t have candy, every visit I got a crumpled brown bag filled with plastic "toys." These "toys" were the long caps of the plastic guards for the needles that she gleefully jabbed into terrified children, and I was expected to be appreciative that the old bat "got something special" for me. She did not want my parents ever taking us kids to the hospital local to us because she was not affiliated with them. My parents followed the lead of this woman who saw no reason to share control of her patients.
Throughout the first eight years or so of diabetic living, I was seen only by the old world pediatricianl whose management of diabetes remained simple: starve the child to keep the sugar low. Unintentionally, this created a context that needing more insulin was bad and special treatment for diabetes unnecessary.
I can only assume that she saw a patient who neither gained even one pound in two years nor died of starvation as a success.
Growing up diabetic for me was an existence of denial and limitations in an atmosphere that diabetes needed no care beyond that of a "healthy" child. Scare tactics saw favor over more complicated things like discussion. I’m not inclined to believe any authority "because they say so."
I’ve eaten Oreos and have lost no toes.

Braying to a new God

On my own, I do not remember the details of the 1998 examination. I remembered where the office was, but not the name of the practice or the attending doctor. I remembered only broad strokes.
The detailed recollection came after a search through old file folders. A letter from Dr. Arthur Geltzer thanks Dr. Krosschell’s office for the referral and provided a recap of the exam. I haven’t looked at it in years, maybe not since cramming it in the file.
I do independently remember that Geltzer asked general health questions and I stated I was healthy. I remember his response, this declarative statement said in the tone of a commandment. "If you’re a diabetic, you’re not healthy."
I also remember Geltzer’s prognosis. I’d heard the same prognosis word for word eight years before. If I didn’t have the PRP laser surgery ":you will be blind in six months."
Actually, I lied. It wasn’t quite word for word. When I heard it from the quack at Vision World in 1990, he had said "If you don’t have that surgery, you will be blind in six months.
Geltzer’s warning was an imperative laced with God Complex. "If I don’t do this surgery, you will be blind in six months."
I suppose I should have dropped to my knees and prayed to the exalted doctor Geltzer. He would strike with his holy lightning as red lasers burning into the back of my eyes and he would cure me.
His God Complex was so bad, that he extended his plan for living in his Godly image. "You need to quit your job and get one with health insurance or you need to save your money so I can do this surgery."
He did not mention that preexisting clauses in health plans would have disallowed his laser surgery at a new job for 6 to 18 months after the deadline had faded to black.
He did not mention that clinics at some of the hospitals would do the same procedure at a fraction of the cost.
He did not refer me to any social service program.
He had simply commanded me to marshal whatever forces I had to so he could do the PRP treatment.
That’s what I remember.
The letter I found puts things differently. It states that he found no rubeosis (the growth of abnormal blood vessels on the iris.)
It was Geltzer’s "impression" that I had "neovascular diabetic retinapathy from longstanding diabetes mellitus."
Maybe I’m too jaded, but his having "the impression" doesn’t quite sound the same as a conclusion based on careful examination.
In this letter, Geltzer "also suggested that he, in all likelihood, will need laser in the not-too-distant future."
Maybe I am too jaded. These experiences helped make me that way.
I did hear that "blind in six months" threat once after this. By that third time, it didn’t produce angst. My reaction: "oh, this again."

Blooderball Turkeys

Small vitreous hemorrhages do occur in the natural course of diabetic retinapathy. The sites I reviewed describe them similarly.
The hemorrhage comes from newer or weaker abnormal vessels. Those vessels bleed a little and the discharges enters the vitreous gel that fills the center cavity of the eye.
Because the vitreous gel has no nerve cells, it feels no pain or pressure. The sufferer of hemorrhages related to diabetic retinapathy alone see dark matter, sometimes tinged red, but usually black or grey. The floaters appear as tiny spots, or flecks of stuff, or in small masses of stringy cloud such as spider webs, the type found in corners, not the ornate stretching ones.
None of the sites I reviewed again in researching this blog describe a vitreous hemorrhage caused by diabetic retinapathy as a massive outlet of enough blood to fill both the venter of the eye and a cataract. All describe diabetic retinapathy caused hemorrhages as minor, even if the patients suffers recurring hemorrhages. None that I encountered describe a diabetic retinapathy hemorrhage as making the patient see bright crimson.
The massive blood letting I watched in my eye was a flow. I saw it start as I woke and I watched it spread throughout the eye in a matter of seconds, like the effects in cheesy horror movies when they end the opening credits with a falling wave of dripping blood.
I bring this up after some conversations about the blog and reviewing medical records from 1998. Dr. Kroschell did not think the isolated 1998 floater was necessarily related to retinapathy.
The doctor he referred me to listed the floater as a vitreous hemorrhage. In his examination, Dr. Arthur Geltzer used a specific phrase that I had heard before....

Finally, a Good Doctor

The scare tactic pushing quack who told me in 1990 that I would be blind in six months without PRP laser was wrong. The next internal eye problem that arose was in 1998 when the appearance of a floater scared me enough to make an appointment with another eye doctor.
I saw Hendrik Krosschell, who up until recently had been affiliated with the Pearl Vision Center in Attleboro, Massachusetts. He now had an office up the road from that former location.
A minor gray fleck, I only noticed the floater while reading, which I did a lot of in those days of hotel desk clerking. The reasonable chain of logic told me I am a diabetic and should get this new developed looked at without delay.
Dr. Krosschell determined that the floater was just one of those floaters that all people get from time to time. He adjusted my prescription got distance glasses with a minor tweak that he assured did not need to be adjusted in any hurry. He did note that while he saw no signs of bleeding, he did see retina damage. With candor that is hard to find in the medical community, he admitted his limitations as a general optometrist and urged me to see a retina specialist.
I continue to see Dr. Krosschell. His honesty has been the one constant in my eye care and the storm of problems surrounding it. I go to him for referrals and second opinions. I relay on him for the manner of treatment he has provided. He will be honest in telling me when there is a potential problem to be looked at without dramatics or scare tactics. He admits when things are beyond his range without trying to pretend he knows more than he does or holding back information that might be scarey. He conveys no bullshit, and no God complex.
I’ve had some real bad luck with doctors and situations that brought me to them. When I’ve been done wrong, I am not afraid to name names and report how specific doctors lost or disillusioned me.
If nothing else, I strive to be fair, so I name names in the good sense too.
Hendrik Krosschell has been the best. I have always been treated as a patient, never as a number or a dollar sign. I cannot recommend him enough.
He has been my anchor in treatment through two very tough years.

Light Sensitivity

Most diabetics experience light sensitivity. I never had a problem with it as a teenager, even though I had been diabetic for more than sixteen years when I became old enough to drink.
The summer when I was 21 marked the first time I saw an eye doctor on my own. I don’t remember what my childhood eye doctor did, and I do not remember ever being dilated before 1990.
I saw a quack at Vision World because I wanted new glasses for distance vision. Nearsightedness for me had begun in 7^th grade.
I should have kept my mouth shut and just gone for the standard vision correcting test. I think mentioning diabetes brought more "concerns" for me, and, incidentally, bigger bills for the doctor.
I found dilation to be an excruciating process, particularly that first time. They put drops in your eyes that expand your pupils in a stuck open position. Then they shine ultra bright lights in your eyes and flash the lights around while they look at the retina. Your pupils are stuck open afterwards. The excess light your eyes receive hazes and glazes over everything. I had taken a bus to the appointment. I had a hard time finding the bus stop for the way home.
My eyes did not recover from the light sensitivity. Ever.
No doctor would ever admit that diabetic light sensitivity can be caused by the eye treatments they give. The examinations are necessary. The diabetic eye must be monitored. I don’t dispute that.
I do, however, question the methods used in the treatment of diabetics. Some may cause problems, and no doctor seems to want to entertain the possibility aloud. I don’t believe that the onset of my lifelong light sensitivity began immediately after a dilation exam any more than I believe that the Cialis had nothing to do with the hemorrhage.
Staring at the sun can make you go blind, and often not until hours after you stopped staring. So why such a stretch to believe that artificially opening the eye and flashing of light so brilliant that it hurts can do damage, even if "just" gradual damage over long term repetition of this exam? The light used in the exam is as bright as the sun, even if it is a more white light. Some theories state that sun-staring blindness is a matter of UV rays. I think if that were entirely true, it wouldn’t hurt the eyes of even "healthy" people to have highbeams flare into their eyes.
I never saw that quack again after that 1990 visit. Twice my life gone by, I don’t remember his name. Besides the onset of light sensitivity I just remember one other thing, besides the result of his little eye fry.
He told me that if I did not have immediate PRP surgery, I would be blind in six months.

The Bug-eyed Monster

After being disillusioned by Dr. Woodcomb’s statement "It’s doubtful that Cialis causes any eye problems," I sought a new eye doctor to check out my blood-filled orb. I didn’t know precisely what I did want or need, but I knew what I did not want: a retina specialist. This was a clear hemorrhage...oh, wait..."clear" is really a bad word choice as I was seeing everything through a sheen of bright blood red. Anyhoo, what had occurred was not a retina issue per se, and I sought to avoid having the words diabetic and eye being used to shoehorn me into distraction from the problem at hand.
I ended up seeing Dr. Michael Negrey at Koch Eye Associates. My parents drove me to the appointment. While waiting, they read the resume that Koch provided and were greatly impressed.
I wasn’t so sure. There’s an emotional factor in waking up to a blood filled eye and the inability to do anything for yourself that will cloud anyone’s judgment. I did not like his bedside manner, but I can be pretty rough and gruff myself, so I probably should not criticize. Negrey had a distant and superior manner that I did not care for, but the reality is that his technical ability was more important than his mannerism.  His nannerisn quickly manifested as a God Complex.
He prescribed an MRI with concern that I may have ab enlarged thyroid or other foreign growth behind the right eye. I wondered if the thyroid possibility would prove my GP right. Health measured by how I feel had drastically declined under his care. My GP said the health decline was hard living and had nothing to do with me becoming healthier according to his color-by-numbers standards. The MRI came back clear. My mother noted that I had "buggy eyes" since I was a child.
Negrey clearly noted that blood had filled the existing cataract and preplanned surgery for the near future.
But first he wanted me to see Koch’s retina guy, Michael O’Brien.

Cataracts

I discovered that I had cataracts in spring of 2006.
While driving a "lorrie" on one of the antique buying trips in England, I really noticed that I was having increasing difficulty reading the traffic signs, even with my distance-improving glasses on. One of the closer friends I had at the time had undergone Lasik surgery and was absolutely eagle-eyed. Once back in the US, I made an appointment for a free consultation.
He Lasik people were not about to do any surgery on me based on the fact that I had only one functioning eye to begin with. While disappointing, the experience proved some value. My slowing increasing diminishment was determined to be due to cataract, and not to plain old nearsightedness or to any retina problem. I greeted both those things as good news.
Yet one aspect of the examination lingered in my brain: why, when I had been going to Dr. Lowenstein two or three times a year for the past couple years did I first learn of what was a relatively large cataract from a free Lasik consultation? The arrangement of Lowenstein’s practice did not quite make him an economical option for this self pay patient. Upon every visit, I had to pay Dr. Lowenstein. Then, a bill of another couple hundred dollars would come from The Massachusetts ye and Ear Infirmary in the following weeks. For so much money in double billing, why had it never been even casually mentioned to me that I had a cataract? I don’t bemoan paying for services, but I do want some bang for my buck.
I asked about the cataract on my next visit in the summer of 2006. I was told that I was scheduled for a retina exam only, and that if I wasn’t another issue looked at, I needed to make another appointment.
I never did make another appointment with Lowenstein or anyone else at Mass Eye. Instead, I started seeing Dr. Woodcomb in Providence. That professional relationship lasted about three years, until his doubt that "Cialis causes any eye problems." I could live with Lowenstein’s skepticism about the 2003 cornea abrasion because I was by that time seeing him for routine evaluation. I couldn’t live with Woodcomb’s doubts because I needed someone who would treat me according to the facts, not according to pharmaceutical propaganda.