Fraudulent Brain Damage? No Such Thing.

When I was in England at the end of May, I went back to the ASPIRE group as the alum guest speaker. It was the day after I had flown in, but I didn't let the travel affect me, because I think the group is really good, does important work with people who've had strokes, and they gave me a chance to run my mouth, which is always welcome.

Before I started talking, though, one of the group's members, a woman about my age escorted by her mother, said that she felt "a bit of a fraud" attending the group. She had had her stroke quite recently (like many in the group) and had not been hit very badly: she suffered some left-side weakness, and that was it. The worst thing for her was that she got tired knitting, and could only wield the needles for short periods. Compared to the people in wheelchairs, she was fine and dandy, she thought.

Soon after I joined Fitocracy (and started the "stroke recovery" group there), I found a group for "people with disabilities" and even though I did not consider myself disabled, I joined it. Almost at once, I posted to the group that I felt like "a bit of a fraud" joining the group because I expected to recover. As if, somehow, the possibility that I might one day recover disqualified me. I was going to the gym regularly, after all. 

Over a year later, I don't have that problem any more. It is going to take me years to get better, and there are some things (vision, balance) that may never truly recover. In the meanwhile I am disabled. I am not making shit up. I am not a fraud. I worry that I say I can't work, but I write this blog, don't I? I make funny on the Internet, don't I? I can play games and read comics can't I?

Then I remember that it takes hours to write blog posts, and far longer than it once did, to read the context to make the funny. I recall that I read comics because I have to read and even novels are damnably hard work. When I play video games, there are whole classes of games I can't play, when I play tabletop games, I can't run them weekly, and I can barely sustainable length of a normal session. 

So, although I joke that I am a welfare queen, I am profoundly glad that the social safety net has not failed me, at least. Both because it will be several years before I take out what I put in, but more because it should not fail anyone. That's part of what it means to live in a civil society: we help each other out. Put baldly, it also makes economic sense to afford me the recovery time to become a productive member of society again. Maybe not everyone is fiscally worth it, but that's the cost of coming down from the trees and deciding to band together to build a society, instead of just flinging poo at each other. 

In the end, I told the knitter that she should not feel any kind of fraud: she had brain damage and it was affecting her life. Knitting was symptomatic, but useful as a metric: she should use it to measure how long she can now knit, each day, and celebrate as that time gets longer, gradually or in spurts. She may not be as badly affected as many who get brain damage from a stoke or otherwise, but it's a mistake to trivialize your own damaged brain; if you are to recover, you must be honest with yourself.

It is hard to be comfortable with the idea that I am damaged, perhaps permanently, and still sustain optimism that I will recover. It's harder still not to consider myself diminished, when in some respects I clearly am: trivially I couldn't run to save my life from zombies. One thing I am sure I am not, though, is a fraud. 

Maybe Pride, Definite Fall.

My walking improved over the last day or so. Not hugely, but enough for me to notice; some connection has been made in my brain between the balance part and the part that controls my right leg, hip and foot. As happens frequently when I've made any sort of progress, I promptly fell over. 

It was the first time I've fallen in the gym, and it was fairly spectacular. I was mere inches from sitting heavily and gracelessly on the bench, but instead hit the floor with two 30lb dumb bells in tow. My pride was far more hurt than I am, especially since there were people around (at 8am on a Saturday!), who helped me up and racked the weights. The help chafed but was welcome, because the surprise of falling on my ass was a bit of a shock. Later, I would be lifting heavier weights, but the amount of metal is less significant than my internal (im)balance. 

Strangely, it was a sort of relief. One of the criteria for my current inability to work is that I can't carry a (light) weight around regularly. I claim this and yet I go to the gym and lift weights; surely I'm lying? The fall was an accident, but an ample demonstration of what happens when I don't concentrate all the time that I'm carrying anything. Going to the gym is tiring both because I'm working out, but also because I have to pay attention all the time.

Happily, the rubber floor in the free weights section saved me from all but a bruised behind, and if I was a bit pleased with myself, that got put in perspective. 

42

The meaning of life, the universe and everything still eludes me, but it is perhaps a cosmic joke that I had my strokes on the 11th, not on the 18th. If I had them a bit later, then I could tidily package a monthly update with this birthday one. Would it have killed me to wait a week? (Let me answer that: probably.)

It's weird to be turning 42 when I feel like I should be only 41. I remember my last birthday, and the first year of recovery, but perhaps because I spent almost a year somewhere other than my home, that year feels somehow unreal. Robert McCrum's book about his stroke is called "My Year Off," and I get it; it feels like that year didn't happen, while it so evidently did. There it is, though: I'm a year older, which makes me 42. 

Things continue to improve. It's slow, but really only to an adult mind. A friend had a son within a few weeks of my strokes; he's a toddler now. It's taken him this long to get his muscles sorted enough that he can sustain bipedal balance with his arms outstretched and occasionally falling over and bumping in to things. I'm at least on par with that, if not ahead. I recently met a 2-year-old, and he was clumsy with his food (and rather shy but with a delightfully impish mien), much as I am still.

One difference between me and infants is that we perceive time differently: I'm more aware of it (although that will change in a few years). Another is that children are driven to grow up by their biology. Consciously or not, they see what adult bodies are capable of, and work on being able to do the same things. They want to learn how to be dextrous enough to do buttons up easily.

For me, though, there's less of an implicit imperative. I have to want to improve as well as put in the hours of work or I'll will stay more or less the same. One of the terrors of the disability insurance process is that it says to the disabled person "this is what life is now". It becomes easy to forget but that it is possible and that it is necessary to recover.

Anyone reading this blog will know that I want to recover, but if I forget that, then I'm all right. I have an income. It is quite possible for me to be comfortable, and stay comfortable until I die if I do not improve. That is the trap. There is no counseling associations with disability insurance: nothing to encourage you to recover, merely a date for reassessment. It would be easiest not to work hard, not to improve substantially, to stay more or less the same, and in a year's time get paid again.

I am happy to say that once again I am rejecting the alternative. It has been a difficult start to this year, or even a difficult six months, but that will not stop me. I am going to get better. Since that means doing the hard work, I am going to do the hard work. The Social Security benefit I received gives me the opportunity to recover. An opportunity I would not have if I was trying and failing to work.

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.

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.

Can Do vs. Can't Do

I focus a lot on what I can do, and try to stretch that every day. Interacting with officialdom, like trying to fill out a Social Security application for disability insurance makes me pay attention to the ways I can't do stuff that is ordinary. It's a disheartening process to acknowledge that, sure, I can lift a 50lb dumbbell the couple of yards it takes to get it to a bench and back, but I couldn't carry it downstairs for love or money. Nor stand for six hours. Nor can I read long detailed text with ease. That last is the hardest admission to make at the moment.

I suspect there's a missed opportunity in the way the social security net is structured here. To be clear, I only pass the first hurdle because I paid a lot of tax when I was working. But the insurance incentivizes staying disabled, instead of rewarding recovery. This seems medically and economically dumb.

Whatever. The conflict between thinking optimistically about my capabilities and thinking realistically about my capacities is raw today.