Connections

Twelve years ago, I heard the first plane hit the World Trade Center in New York with my own ears. I smelled pulverized steel and people with my own nose. I felt the street shake as if an earthquake had struck when the first tower came down with my own two feet. I was there, and it was a terrible day.

What has it to do with recovering from brain damage after a stroke, though?

In the hours and days following the attack, my horror and sorrow were tinged with optimism: the tragedy was an opportunity, a chance at introspection, a shock that had a chance to change a country's way of thought. A moment to ask why? and to make the connections that would preclude another such attack.

Since having a stroke, I have been happy to make connections that I might otherwise never have made. With the Eqyptian-American guy I know whose father has had a stroke, with devout Christian midwesterners that I have little in common with but brain damage and most of all with friends from my past that have turned out to be good friends still.

I've also connected briefly with other stroke and brain injury sufferers talking at (and participating in) the ASPIRE program, and I hope that this blog is useful or informative for those who've had a stroke, or their carers.

It's not enough, though; I want more. I want to be able to have a conversation with someone who has first-hand experience of brain injury. I want to share the stupid weirdnesses of not having a limb respond when you think it will with somebody who has empathy, not sympathy. I want someone who gets it to share war stories and bore stories with.

So if you're lurking, talk to me.

Also, all you other people, what do you want to know? If you're too shy to ask in public, I'm not too shy to answer and my email address is my first and last names @gmail.com.

After 9/11, I learned some Arabic, and after I had a stroke, I kept talking; but I want to converse. I don't love the sound of my own voice that much.

For the record, I wrote about my experiences on the day.

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. 

ASPIRE

I said I had a bunch of posts owing, and this is the first of them, about the ASPIRE program I was fortunate to take part in, at nearby Yeovil District Hospital.

ASPIRE stand for "Acute stroke Self-management support, secondary stroke Prevention, Information, Rehabilitation and Exercise" program. Too many letters, but trust me it looks better on the page, and you end up with ASPIRE. Which I thought was lame as all hell, but I was game to try anything to aid my recovery when I was assessed on Christmas Eve 2011.

As far as I know, it was the first and for a while the only such program in the country; I've not heard of anything like it in the US. It proved to be almost indescribably useful for me.

The program is simple enough to grasp: It runs for twelve weeks, and participants, who have all had strokes and are encouraged to attend with their primary carer if there is one, do an hour of exercise, choosing whether that's before or after the half-hour chat with a cup of tea and a biscuit.

The chats are directed, and cover the bases of providing information about stroke itself, as well as things like medication, nutrition, stress, exercise and relationships, and how they relate particularly to stroke. The conversation often drifted (particularly when I got involved).

The exercise was tailored to people's deficits, and always seemed included a combination of rehabilitation, simple cardio and strength. We were helped into machines if we needed it, encouraged and cheered on by the two stroke ward nurses who run the program, Debbie and Caroline, and a physiotherapist, Donna, as well as the volunteers, all of whom had had strokes in the past.

I never thought that I would be glad to get on a treadmill, but the feeling of being able to walk, even slowly, and even holding on desperately was magnificent. Being in the hospital gym gave me the confidence to start going to a regular gym again, and gave me measurable results for the work I was putting in (see below for details).

Both have proven very useful: I have been enjoying going to the gym and pool four times a week for a while now, and making measurable gains in fitness means I have something to point myself to when I feel like I'm making no progress. The pace of neurological change and recovery is sometimes so slow that the effort it requires seems almost not to be worth it. So I stagger, I think, is that so bad? Can I live with double vision, after all, I'm functioning? 

I refuse to accept neurological deficits, though, and making progress at the gym or pool, however small, gives me enough feedback to persist until my brain does a lot better job of recovery than just good enough.

At least as useful as the exercise, though, were the tea'n'biscuit (cookie!) chats. Less for their content, which was still excellent pragmatic advice of the sort you're more likely to get from a nurse or therapist than you are from a doctor. More for the fact of being in a room with a couple of dozen other people who had had strokes too.

I'm not much of one for support groups. I mean, sure, in theory, but for me? I would have said not, and I would have been wrong. I had underestimated how isolating my stay in the hospital and in-patient rehab facility had been. I think in the twelve weeks before ASPIRE I talked to maybe three people who had had strokes, and that just wasn't enough.

With ASPIRE we had people to share notes with, tips, gripes, and everything else. People who understood in a way that nobody who hasn't had a brain injury truly can what it is like to be recovering from neurological deficits. How it feels when you're worse at everything you put your hand to, if you can even do that. And more, the volunteers were two or three years past having had their strokes and were back doing some of the ordinary things that are still beyond me.

It's hard to say which aspect of the program benefited me the most; they worked together to set me on a solid path of recovery. I recognise that there's quite a way to go, but I'm far better equipped for the journey, now.

Penultimately, the posts I'm making about stroke recovery and so on are now public, whereas before you had to be a special flower just to see them. As soon as I figure out how to make the old ones public, even the Ultimate Urine Victory, I shall.

Addendum: boring progress part (weeks 1 -> 12)
Treadmill: 10mins @ 2kph, no incline -> 10mins @ 4.5kph, 5.0 incline.
Cycle: 10mins @ L2 flat, 58rpm, 5.88km -> 15mins @ L7 Hill, 80+rpm 8.07km
Rowing machine: 3.29m/500m for 500m R5 -> 2.09m/500m for 1500m, R7.
Trampette: 4'30" holding on for dear life -> 5m, no hands
Free weights: 3 x 10 x 1kg curls -> 10,8 x 8kg, super: hammer curls, raise, squat
Lat pull-down: 3 x 10 x 6.25kg -> 3 x 12 x 16.25kg
Weight: 91.4kg -> 85.7kg

I'm fitter and stronger now. Find me on Fitocracy.