Extra Effort

One of the neighbors I spoke of in the last post is also the one who came closest to actually offending me about my disability. He did this with a simple statement, "You’re not really blind" in reaction to some things I had generated on the computer.
I specifically chose not to be offended. Instead I took it as a compliment on the quality of work I had produced. I pretty much also figure he feels some shame for not being able to do something relatively basic as well as a blind guy can do it.
I have no history of feigning illness to get out of work or escape responsibilities. My attendance record on jobs and other commitments is well above average. If I had a history of slacking, maybe his ignorant comment would be warranted.
Instead, I have overcompensated for my new and increasing disability. Whenever possible, I walk without direct assistance. I do not use a cane for a few reasons. First, I think it is labeling myself in a way that will corrode my self concept. It labels me as blind to others, and in this economy of robberies and other desperate crimes, the cane amounts to a target sign. I would hate to embarrass such ne’er-do-wells by having them get a public beat down by a scrawny blind guy. And my original joke-line excuse remains: if I expend effort to stay out of others’ way and then they get in my way anyway, I will get frustrated enough to beat them with the cane.
I do make genuine effort to let anyone else get around me first. Shopping takes much longer because of this. I shouldn’t have to carry a cane to make other people more aware of or more comfortable with my disability.
Fat people seem to be most offended by this. I assume they are most used to being seen under any circumstances. I see mostly by motion and contrast. If fat folks’ stretchy clothes are colors that blend into the background of the environment and they’re moving slowly as fat people typically do, it’s easy to miss them.
I have spent the last two years pretending to be more capable than I am, trying to remain a whole person. It takes a lot of effort and determination, sometimes more than it seems worth. My roommate has pointed out that I am becoming less able to pretend. In group situations when those around me change or someone walking by says hello, I am being more open about not usually knowing to whom I am talking to.
I figure if someone doesn’t understand that, he’s probably not worth talking to anyway.

Good Neighbors

The best approach to most patients losing their eyesight is a nonchalant "If you need help with that, just let me know." The patient will know he has help if needed, but feels free to try on his own.
One key to this is to make your offer sincere. If you don’t want to help, keep your mouth shut and don’t make any offers. Just stick to "I’m so sorry to see what happened. Sorry you can’t."
OK, leave off the last part. Not many people share my sense of humor.
One of the worst things is to think you’re being polite and charitable as a means of showing support, then huffing or rolling your eyes if the blind guy ever has the bad manners to take you up on your offer. One neighbor told me to let him know if I ever needed a ride from a recurring local event. I gave sincere thanks and remembered the offer. When I did ask one night, he spent more time asking around for someone willing to drive me the six blocks than it would have taken him to give the ride that had been offered. Any number of excuses may be possible or legitimate, but none could diminish how I felt when I heard him start peddling me off.
Another neighbor, this one more typically ignorant to begin with, pulled over in traffic when he saw me walking the opposite way on a cold and rainy day in April 2010. He talked to me for four minutes or so. When I asked for a ride to my destination three blocks away, he told me he couldn’t because he was heading in the opposite direction.
Newsflash, neighbor: you’re nowhere near interesting enough to talk to that I feel honored that you took time out of your day to partially pull over to say hello and tell me about your life while you obstructed traffic on a city thruway and I got wetter and colder than I would have if I had just waved and continued walking.
I would have even used all five fingers in that wave, which is something I can no longer guarantee you.

The Right Approach

Worse than being blind is the process of going blind. The blind guy is constantly having to adjust to and accept new, ever-increasing limitations.
Yes, the patient may be resistant to losing yet another element of self sufficiency. There’s a whirlwind of negativity that the patient feels. Self worth and capability decline with sight.
Getting mad at the stubborn blind fool will only escalate the downward spiral.
Ripping a childproof line-up-the-arrows aspirin bottle from the blind guy’s hand will not alleviate his headache. One of my bowling partners deals with me with abrasive humor, something I deal with especially well but may not work so well with other people. After the first time of trying to snatch the bottle away, he employed humor to much better result.
"I’m timing you, and this is getting boring...still timing you...still timing you...still timing you...."
"Taking bets! Fifty says the bottle wins over the blind guy!"
"You’re getting frustrated with that and I’m getting frustrated watching you. Can I help?"
"I’m recording this with my phone, so unless you want your ten minute fight with that all over U-tube, let me help."
Somehow
Those small but growing inabilities add up. The list of things I can do with my remaining vision seems to get shorter every day. Something as simple as opening an aspirin bottle can be a major headache.
Snatching things out of blind hands or just taking over something are not approaches that work without further eroding the patent’s confidence.
My teammate’s approach wouldn’t work on everyone. The lack of malice in the "mean" humor and the sincere offer of help carried it for ne, even while that teammate’s general attitude that developed over years of friendship caused a newer teammate to quit the team.
The best approach to most patients is a nonchalant "If you need help with that, just let me know." The patient will know he has help if needed, but feels free to try on his own., he trained me to just hand over the bottle when I need to open it. Admittedly, that is a lot easier than trying to gnaw open the bottle. This approach appealed to me not just because I have a similar rough sense of humor, but because fewer people interact with me as a whole person. Sometimes I become a project, other times a magnet for quiet unease because people don’t know what to say to a blind guy.

Frrustration

My roommate and a couple friends had seen my outright flares of temper from the October 2009 Cialis-induced vitreous hemorrhage through Spring 2010 when I healed enough to be somewhat functional. In general I maintained composure and superficial acceptance of the new status quo. Many people from friends to acquaintances to doctors were amazed at how well I dealt with it all.
I wish I could say I was a calm, even tempered guy. I’m not. The funky thing is my temper triggers differently than other people’s.
For so long I have wound myself pretty tightly against the fits of bad temper that get triggered by frustrations during periods of low blood sugar. I have developed into someone who handles the big things well. But frustration is my enemy.
The friend who drove me around most during the red blackout period is still amazed at my utter lack of reaction to the car accident with my own vehicle during one of our trips to the grocery store. As a blind passenger in his own vehicle during the accident, I felt no anger during or since. It was an accident. That same friend watched me hurl my cell phone through tempered glass because I was too blind to dial and the voice recognition kept interpreting everything I said as instruction to call a hated tenant. This was a good enough friend ro clean up the broken glass before the blind guy could cut himself on it. Everyone should be so lucky to have such friends.
At bowling, I can get frustrated by bad scores but manage to step back from that without cursing loudly or kicking the ball return. That self control is much harder when the blood sugar is at a relative low. It’s only a game.
Yet someone who, after asked nicely, continues to use powder on his shoes. This is illegal in the sport as it poses slipping hazards to others. The blind guy who relies on the bowling alley as one of the few places he can be sure-footed does not deal with new slipping hazards well. The willful ignorance triggered the blind guy to taking the bottle of baby powder and tossing it into the trash in front of the offending bowler. And when that blind guy is verbally attacked for being so rude by someone who prefers polite self-centered ignorance, this blind guy doesn’t back down.
Blindness is an endless exercise in frustration. I still do a lot with what little sight I have left, but everything takes longer. Everything involves extra steps and increased caution. Some things just aren’t possible, but I learn that only after frustrating myself.
Maybe dealing with blindness is easier for people who were born that way because they don’t know what they’re missing. Or maybe that presumption is sheer ignorance.
I’ve worked hard through life for self sufficiency. The constantly increasing reliance on others is a frustration all to itself.
Getting mad at the stubborn blind fool will only escalate the downward spiral.

For Better and for Worse

I dud not return to the Koch Eye Associates offices after the exam that followed the PRP session on 2 February 2010.
I felt like income rather than a patient. I received no answer to my questions about the onset of retinapathy during a series of procedures meant to prevent retinapathy. I had not been told that both the PRP procedures and the cataract operation posed risks to retinapathy development. I could not ignore that the retinapathy advanced and the "trusted" doctors who increased my risk factors had neither warned me about those risks or did anything to actually help.
From February to June 2010, things got better and worse. I was in denial that I was permanently legally blind. By April, I was trying to work again, with very limited success and a few glaring failures.
I think it is important that I kept trying. I’m a fighter and was unwilling to surrender.
The cloud of blood left behind from the vitreous hemorrhage of the previous October did slowly diminish in this time. The more active I became, the faster it seemed to heal. I resumed sleeping in bed rather than the recliner. Things were fuzzier when I woke due to a different angle of separation between blood and vitreous gel, but the obstruction reduced. I got to my optometrist–an eye doctor I could trust, Hendrick Krosschell in Attleboro Massachusetts–and did get reading glasses that worked for a time.
Unfortunately, as the vitreous gel healed, the retinapathy worsened. Flashers and wavy floors became routine plagues. My central vision in the one good eye cleared, but the overall vision reduced to just that central vision. I could see what I was looking at, but only what I was directly looking at. The peripheral had darkened and closed in to the borders of the cataract.
I could drive, with limitations. I really had to know where I was going because I couldn’t be extending my vision to check the surroundings and focus on the road. Because the cone of vision was wider at distances, it was actually easier to drive to the grocery store than to navigate among bustling people inside.
I clung to gratitude of what I did have instead of focusing on what I didn’t.
Despite the public demeanor, inside I seethed. I still seethe over the situation. Maybe this is some hindsight tunnel vision, but this was done to me. With more complete information, I would have made different decisions. I seethe even more because it continues to get worse.

Warning Signs

I lost vision in my right eye when the eye was looking around a temporary obstruction caused by a cornea abrasion. The eye muscles pulled at the back of the eye and against the retina. Slow blood leaks started at that time and progressed quickly. Dr Lowenstein’s statement "You never had an eye injury" displayed the doctor’s evident belief that a sudden change from nonproliferative to proliferative stages of diabetic retinapathy only happens in a vacuum to naughty diabetics. I know his diagnosis was wrong. The sudden change from bad but stable and non-problematic to actively bleeding stages only happened in one eye.
Despite his scoffing at the reported cause, Lowenstein found my left eye stable and did not recommend immediate PRP surgery in the years I saw him.
My next doctor, Harold Woodcomb, also determined the left eye to be surprisingly stable.
If I had been better educated about the warning signs and symptoms, I would have sought help for the right eye sooner. Some level of useful vision might have been saved. I didn’t notice the signs soon enough because my whole field of vision in that eye was moving. I was seeing double. The right eye saw images above and to the left off the left eye’s image. I had incorrectly assumed that the flashing and swirling effects were part of the muscle movement.
The dark eye does retain excellent color vision through the remaining pinhole. I noticed this when further complications on the good eye diminished my color vision.
That earlier loss had taught me retinapathy’s signs and symptoms. I have blamed no one but myself for the incident from start to finish.
Diabetics need to be aware of:

• distortions at the edges, such as when a tile floor seems wavy;
• flashing light spheres or crescents that circle or flow around the eye whether the eye is open or closed;
• gradual darkening at the edges of vision;
• small recurring floaters, which are dark spots or stringy clouds loose in the eye.

A good self test for the periphery is to look at a tile or checkerboard floor that has sharp contrast between tiles or between the tile and grout. If the edges curve or the floor looks wavy, seek immediate help.
I judge from the fact that in a 15+ year period, three doctors told me I would be blind in six months but not one of them told me what signs of active problems to look for. Educated patients are less profitable patients.
I had none of those symptoms when I began the PRP treatment. My eye had not leaked from the Cialis, it had gushed, creating not little black flecks but an enormous red wave;.
What I cannot recommend is that any patient simply take the word of his doctor that he needs PRP right away, if the patient has no actual visual signs of a problem. Study the risks and side effects of the surgery, here or on independent internet searches. The treatment can cause the precise problems it is supposed to prevent.

What PRP taught me

The flashers started after the third PRP session. I told Dr Michael O’Brien about them and got no response, no reassurance, and he went ahead and did three more sessions. By the end of the sixth session, I suspected that my periphery was closing in. Both these symptoms indicate retinapathy that the PRP treatment was supposed to prevent. Both are also well documented side effects of PRP treatment.
So what is the point of calling the doctor right away, as instructed? It had always been my intent to do PRP when I perceived retinapathy problems, not when some doctor told me I had problems. The hemorrhage changed that and I let myself get scared into it on the chance that I was wrong about the hemorrhage being caused by the Cialis. I’d been warned and threatened and scared about retinapathy so many times that filtering the legitimacy from the profiteering scare tactics could not be done.
I was pretty sure I was right about the hemorrhage, but I am not arrogant enough to refuse to entertain the possibility that I was wrong.
While O’Brien showed no God Complex–probably because Dr. Michel Negrey’s God Complex left no room in the Koch offices for anyone else to compete–I do, however, think O’Brien and other doctors need to think more about performing PRP procedures before doing them. Doctors need a little less confidence in their own certainty. They need to listen to their patients more and listen to the drug reps and medical equipment salesmen less.
I had been told three times over fifteen years that I would be blind in six months without PRP surgery. Not one of those three different doctors mentioned the risk of causing the precise thing that their profitable procedure should prevent.
None
All three
Doctor Michael O’Brien, who finally did the procedure, had not needed scare tactics. The blood from the Cialis-induced hemorrhage had me scared enough. O’Brien only needed to exploit minor reasonable doubt about the cause of the blood.
O’Brien and the others are still making money shooting lasers into other people’s eyes while I descend ever more rapidly into darkness that leaves me without means to earn funding for the next medical bill.
This is America. Medical treatment is a for-profit business.
Buyer beware.
I do not mean to discourage anyone who needs the treatment.
I do mean to have the information out there for the people who don’t need it, for people who might be easily scared by the threat of blindness in six months.
The patient should be the primary decider, and he needs to be honest with himself. If he is not seeing the signs himself, he should have his eyes checked no less than every six. The first time he notices wavy lines or loss at the peripheral or dancing lights in his eyes, he has nothing to lose from the procedure that could possibly salvage his vision before further loss. were far more concerned in scaring me into a procedure for a hefty fee.educated me on warning signs to watch out for.