Tuesday, April 30, 2013

This Is What Taxes Are For

A year ago, I was thinking about retraining as a physical therapist. If the people around me knew how insane that idea was, they very kindly didn't say so. That was before I was able to even acknowledge, let alone accept the extent of the visual damage I suffer or that if my balance is going to improve substantially, then it is going to take a long time. The brutal reality is that I have great difficulty reading (these posts are off the top of my brain damaged head, never edited) and I fall over in my own home. I usually catch myself and have yet to hurt myself. but I do keel over.

Yesterday I got a deposit in my bank account that strongly suggests (I'll wait for a letter, thanks) that my application for Social Security Disability Insurance was accepted. This is undoubtedly a good thing on a practical level: I don't have to worry about my rent every month, or how to  pay for acupuncture; I can take the "Donate" button down, and I can pay for my own brunch on Sundays rather than accepting the great generosity of good friends. So, for sure, a Good Thing.

On the other hand though, it does mean that people whose job it is to filter out lazy scoundrels, which I was afraid of being, have agreed that yes, you can't do any work worth doing. That is a rather sobering thought for someone who always thought "at least I can get hired to do something, after all I've worked at Goldman Sachs and Google so somebody should want to hire me."

I am eligible for SSDI because I paid a bunch of SS contributions; mandatory taxes. Although I'm pretty shit at completing my taxes on time, and I complain mightily about the process, I have no complaints about actually paying tax. In fact, I believe in societal taxation. The world is chaotic and sometimes terrible things happen, and civilized societies have systems in place to mitigate the chaos and help the people to whom bad things have happened.

Perhaps my perspective is very European or socialist or whatever, but it will be something like ten years before I take out of the SS Insurance program more than I put in to it. I didn't complain then, and I'm grateful now. This, not guns, agribusiness subsidies, or Congressional fact-finding in the Cayman Islands is what taxation is for. Social security should be the last thing on the chopping block, always. At the very least because bad things can happen to you, too.

On a day-to-day basis this means I get to concentrate on getting better, and have less angst, so we all win.

Thursday, April 25, 2013

Putting a Demon Down

Since the medical exam I have been wrestling with demons. Or one demon in particular: what use am I? This is not a new conunndrum for me, but my Disability Insurannce application has thrown it into relief. I am asserting that I am not fit to work at all, and that I'm particularly unfit to do the work that I used to do. In the eyes of the Social Security Administration I coulld be faking it, but I am not; I wish I were, but part of what has been so depressing is the sense that I am totally useless for gainful work.

It would be easier, perhaps if I believed in a God, Gods, an afterlife, resurrection, or reincarnation, but I do not. Instead I believe that the universe is random, chaotic, entropic and wholly without magic. Which is not to say that life cannot be magical; it can, but mistaking our brains' inclination to perceive patterns for the existence of the patterns themselves is foolishness at best. I also appreciate greatly the many people who do believe and have prayed on my behalf. To ask your deity for intercession on behalf of an unbeliever like me is a great kindness. However, there is no comfort for me in faith: I have thought long and hard about it, and I do not believe.

Many people set aside this existential angst by living for their partners or their children. Even if I weren't single and childless, I would know that this merely avoids the problem for a while, it doesn't answer the fundamental question: what are we good for? Procreation has never been an adequate answer for me. If our lives are singular and finite, unremarked by any supernatural entity, and if we serve no purpose be living, why not indulge in the cessation and simply die? It would be a lot easier.

When I was considering this problem some years ago, I heard an invitation for the "This, I Believe" segment on NPR that challenged listeners to state their beliefs in a positive way: it wasn't enough to say "I don't believe in this or that," to record a segment one had to believe in something. I found the challenge worthy; it wasn't enough for me to not-believe in things. The thinking I did then has helped me now that it is harder and harder to be lost in books, for example, or otherwise distracted from the rather unpleasant reality of my current situation.

I believe that the universe doesn't care one whit about me, you or anybdy else. I believe that I was just as likely to have died on the spot or been left a drooling imbecile as to have survived with brain damage. I believe that there was no reason for my strokes just as there there is no magical plan that I am unwittingly serving. I believe that what differentiates us from non-sapients is the capacity for choice: I choose to agree that murder and theft are bad things, but that is my choice, and I have made it consciously.

Finally, I believe that we have no purpose in life except that we choose one. I choose to smile and laugh, to amuse and entertain as much as I am able. I choose these things in spite of an uncaring universe. That is enough.

Thursday, April 11, 2013

A Not-Unpleasant Center with A Hard Coating of Horrible

I'm not sure why I expected to make sense of that experience, but it was largely baffling, and on balance pretty miserable. Hot chocolate is succoring me.

The office was not lovely, the receptionist was surly and the whole thing--down to the crappiness of the doors--was unfriendly to disabilities. The American's with Disabilities Act may be a step in the right direction, but unlike the UK, the country has yet to take the idea of accessibility seriously.

The first thing I had to do was write on a clipboard. There was no table. A clipboard is irritating but manageable if you're able-bodied. For me, it's hard to use, and when it's used to fill in information that they already have, it is infuriating. I was irked with having to fill out forms full of data that could be pre-filled and printed with gaps to make changes or corrections before I had a stroke. Now that the physical act of writing is hard, it is maddening.

After filling in the largely redundant forms, I exchanged them for an appointment slip and the unwelcome information that, having got Judd to painstakingly record my current array of medication, bringing the pills along was unnecessary. What joy. They're not heavy, it's just stupid and inconvenient to have to schlepp along the bottles as well as regurgitating a list they already have.

I took a moment to look at the appointment slip, and was baffled: rather than a neurological or visual exam, which were options, I was scheduled for a regular internal medicine exam. So, I asked the surly reception guy WTF? He checked, but that was all I was due for. I should call the Social Security specialist to find out more. Of course, there is no cellphone reception in their office. More joy.

Eventually I was called by the medical assistant to take basic stats. He didn't have any clue why I would be doing a regular old exam, rather than a neuro- or visual one either. He did, however tell me that I should put myself in God's hands. When I suggested that God didn't seem to be in a hurry to pay my rent, he assured me that He could. I now know where to refer my landlord in future.

Then more waiting somewhere else. Throughout the process, I had no idea what would happen next, except what I pieced together from overhearing the assistant talk slowly and loudly to people he thought were idiots. Over the last 18 months I've learned the hard way not to make that particular assumption about anyone. (I'm pretty sure the guy with a cane that had no ferrule was faking it, though.  Without that handy bit of rubber, the stick would be useless to me.)

Finally I was ushered into an exam room, instructed to strip down to my underwear and put on a gown. To give you an idea how much slower everything is, I hadn't finished putting the gown on before the actual doctor arrived. She was very pleasant, seemed surprised that I had had many strokes, not just one, and thorough. Talking to a professional who behaved professionally and treated me like a real person was the high point of the whole process.

That was it. Now I'm left wondering when the Social Security specialist will return my call (or answer the phone), when I find out if I get assistance, and whether I have to go for further exams. I can't help but think of all the things I didn't tell the doctor because they have become ordinary obstacles. But I'm a lot less anxious than I was, and I expect I'll sleep well.

Eighteen Months

It's odd that my SSDI assessment is today, exactly 18 months since I had a series of strokes. I often play down the difficulties I have - I don't want to be a whiner - and I'm trying to concentrate on the ability part of disability, inspired by this year's Paralympics amongst other things.

Today, though, I have to look medical orthodoxy in the eye and believe its depressing conclusions: I won't get any better from here. I think that's not true, but I am aiming to give orthodoxy the finger by continuing to improve, and in the meanwhile it's better not to be deluded (as they might think). So, reality check update.

As I will repeat to anyone that will listen, there is no sign of cognitive impairment. I think there is some damage, though, but I was smart enough before the damage that it's not measurable afterwards. It isn't major, but I am just not as sharp as I was. Maybe that's just because my brain is busy. Depression has been more significant since the stroke. It's hard to see a future being this crocked. It will be somewhat easier if the SSDI is approved because then I can make getting better a full-time occupation.

The palsy is slowly lifting, but the left corner of my mouth remains stubbornly inert, which means lopsided smiling and I have to be careful laughing and eating. I suspect some friends try to make me laugh when my mouth is full, but I'm OK with that. Bastards. I can just barely close my left eye, at night my eyes roll up a bit to get darkness.

This is the worst area, with least improvement. Specialists think there will be none. I believe my double vision is getting better, but it is glacially slow, and I still have double vision. I also have One and a Half Syndrome, and that may never go away, especially the nystagmus in the right eye. Harder to see from the outside, but pretty obvious to me is the oscillopsia, which is best illustrated in my post on how the world looks to me. It still looks like that.

I wobble and stagger, and occasionally fall down. I wrote about falling outside, which was the first time I went arse over tit outside in New York City, but a couple of weeks ago I fell in my own apartment, and every day I stop myself falling through conscious acts. I sway forwards and back without any apparent rhyme or reason when I don't have anything anchored (a hand or my ever-present stick). Honestly I can't tell if my fundamental ataxia has improved or as I suspect, my ability to handle it..

The dysmetria continues in my right side. You should see me try to pick up dice. Or a pencil. It's pretty funny. Except that it isn't; I still can't carry fluids in my right hand without spilling them, eating is an adventure, cooking is a challenge, and folding clothes is a punishment worthy of the ancient Greeks.

There's no doubt that I've got stronger. When I did the standard neurological test of squeezing pairs of my doctor's fingers, my grip is pretty strong. But the test is useless at determining how strong I was before, particularly relative to the left side. That's where much of my problem lies with strength, that, the tremor and the fact that stabilization muscles have got weaker.

So, that's the month's round-up of woes. It doesn't cover where I think I've improved, and nothing really explains how tiny the incremental improvements are. But I don't recommend having a stroke to find out. I'm about to set off for this assessment; I will probably be very early, but I'm still pretty bad at estimating travel times, so I hope the waiting room is nice.

Tuesday, April 9, 2013

Anxious waiting

Silence has reigned while I wait anxiously first for a date, now for the appointment itself for my disability insurance assessment. Again I'm faced with the spectre of everything I can't do, only this time I have to hope that the extent of the damage is clear.

It worries me that the system seems geared towards people who've lost limbs in a combine harvester, fingers in an industrial press, or some other gory spectacle. My own rather mundane brain damage, and ever-increasing appearance of being my old self belies the difficulties I still have.

I find myself wondering if I could be trying harder, or better to return to being productive. The truth is that I can't think of of any job I have done where I would be hired now, or even capable of the work I used to do. It's pretty crushing being so useless and even more so that I have to be demonstrably useless next Thursday, 18 months to the day since I had the stroke.