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.

Why Today Sucks

Why today doesn't suck: there's a very long list of reasons why I've been lucky, I'm making progress, and so on. None of which matter because today sucks.

Why today sucks: 
1. It just does. I started the day grouchy and it didn't get any better.
2. I could see improvement in my morning exercise, but didn't care becausethat one exercise is still hard. It's extra-frustrating because it involves not falling over, and I suck at the 'not' part.
3. My disabled railcard application was rejected because I accidentally checked Mastercard (like my Citi card), not Visa (like my UK bank). This is doubly egregious because next Tuesday's trip to London will now be even more expensive, and the number of a card defines the card type. Any system or form that requires card type has a lazy, ignorant or stupid programmer at the end of it. Damn them all to hell.
4. I have to jailbreak my iPhone to be able to use it in the UK and avoid the US telcos outrageous charges. It's bad enough that the monthly cost of using the phone is between three and four times as expensive in the US, it's bad enough that roaming charges are a way for two telcos to fleece you where one would do, but it's unpardonable that AT&T refuse to unlock iPhones, even when they're out of contract. I feel a sternly worded letter to my congresscritter and senators coming on.
5. I'm sure there's other reasons, but that will do for now. I'm simply not in asweetness and light kind of mood.

All in all, I'm fed up today, but dark chocolate is making things better. Also some judicious shouting on the telephone.

A Tale from Stroke-Land

A tale from stroke-land. I went for a coffee after a very long and slightly tedious induction into a research study*, and got it in a cup to go. Now I'm sure you all know this, since you don't live under rocks, but a typical sippy cup lid has two openings: one large one at the edge for the coffee to come out of, and a smaller one, often in the middle of a recycling logo, for air to flow into while coffee flows out. If the lid is properly constructed, air and coffee both flow smoothly, rather than having jerky splashes of scalding fluid and the like.

Alas, the second, air aperture was, as it so often is, completely inadequate, and thanks to coffee splashing against it from the inside was quite closed. No problem! Take the cup back to the counter, which was otherwise unoccupied, and ask to borrow a pen or pencil to poke a bigger hole. I have done this many times.

What's new is that now one of my glasses lenses is occluded, the left side of my face is still largely palsied, although no longer actually droopy, and I walk with a stick.

"This hole here is where the coffee comes out."

I shit you not. The young lady in question assumed I was too stupid or brain damaged to know which end the coffee came out. There followed, to the amusement of a nurse who had appeared wanting a coffee, a rapid discourse on elementary fluid dynamics, the correct application of the pencil, and a satisfying coffee.

To be fairer than I feel warranted, it's entirely possible she's encountered a whole string of patients incapable of drinking coffee, but it dismays me that her automatic response was to assume that I was loopy, rather than making sense. I went away with my objective achieved and a tasty coffee, but the lingering sense that she thought I was crazy for wanting a bigger air hole, and that she was used to dealing with all sorts of hospital crazies, so whatever. Before I looked the way I currently do, her assumptions would likely have been different.


* A study into the effects of adding use of the Wii to regular physio for stroke sufferers who have dominant side deficits. I don't find out until next Tuesday whether I get a Wii for six weeks, or I'm in the control group.

Most of the last few months I've been occupied with the work of functioning again. Doing things like learning to walk (still a bit iffy) and so on. It has been, I don't mind saying, quite hard work, mostly because my stamina went through the floor when I had those strokes. Two months ago, and I would need a sleep after half an hour's (with hindsight) light physiotherapy. 

Everything apart from the necessary pretty much went by the wayside. Of course, 'necessary' for me included hours spent painstakingly posting, but the damaged brain demands odd things of us after a stroke, and feeling connected can be as important as being able to stand unsupported for 60s.

Now, nearly four months after the "brain event" I can go to the gym and then swim and work up a sweat, be bushed, stiff and sore, but I don't usually just keel over and sleep (although it still happens). Similarly, writing this is a task measurable in minutes, not hours (or days), and won't leave me exhausted.

I figured it was about time I started to pick up some of the pieces that I left in New York, so life is a bit easier when I eventually get home. Unfortunately, less of the fun and interesting neglected friend-related pieces, and more of the AT&T and AmEx pieces. It did not go well.

My advice on the subject boils down to this: don't have a stroke, because most companies are simply not set up to understand the complete interruption to your life that a stroke entails. If you have to have a stroke, don't recover from it outside the US, because most companies--even the international ones--don't believe in addresses outside the US. Go ZIP or go home.

Despite the genuine concern and good wishes of all the human beings I spoke to, their companies' information systems seem designed to depress, threaten, distress, aggravate, and ideally kill anyone who's had a stroke.

Show me the designers, I need to work on the physical mechanics of kicking.