Stroke Survivor? Victim? Sufferer? None of the above.

Within a week of having the first stroke, the nomenclature around it vexed me. "Stroke patient" worked while I was in hospital, but that was it, and the terms that replace it are rubbish.

I can't abide "stroke victim." The brain event I had didn't select me for victimisation, and I'm not now, nor have I ever been, a victim of any singularly malign force. I had the stroke because I was fat, lazy and have a genetic predisposition to high blood pressure that, coupled with my obesity and sedentary indolence made my head explode. No victimisation there.

Whenever I hear "stroke victim" I am reminded of a scene in the movie Addams Family Values, where Wednesday is trapped at summer camp and is enduring a swimming rescue lesson. She's shown on the end of a pier in a black Victorian bathing costume, next to her tween nemesis, the preppy, peppy, pretty bland and blond girl. The instructor asks for a volunteer to be the victim. The blond girl's hand shoots up and she squeals "me, me, me." The camera cuts to a close-up of Christina Ricci deadpanning "all your life."

The popular alternative is "stroke survivor." I reject this because it's tautological. I'm either a stroke survivor, or I'm dead, and if I were a corpse, you wouldn't be reading my writing. "Survivor" is way better than "victim" but it's  still rubbish, because it adds nothing to the conversation.

Until recently, I had settled on "stroke sufferer." There's certainly been some suffering involved; recovery isn't really that fun. The term is at least accurate, but a problem still obtains: the word "stroke." Having a stroke is significant, and it matters a lot when the underlying cause is strange and unusual. But seventeen months later, I find 'stroke' as a magic word troublesome. Sure, I will use it to my advantage whenever I can, because frankly, I need the help and consideration, but it implies that there is something particular and unusual about my condition, and I see that as more of a problem than a perquisite.

I'm not recovering from strokes, you see. They were what caused it, but what vexes me now is simply brain damage. Differentiating stroke from being shot in the head or getting your brain damage some other way serves only to make excuses for not recovering, and sod that.

So, I'm left without a snappy term, and default to "stroke sufferer" for the time being, until I  can think of a good way to encapsulate "ordinary guy recovering from brain damage."

Acupuncture and Stroke

Why I Pay To Have Over 50 Needles Shoved in Me Every Week

It works.

I go to the gym, go to the pool, and go to acupuncture, all things I have to pay for, and all things that involve varying degrees of discomfort, because they are all working, demonstrably, to hasten my recovery from brain damage.

To get why they are having a positive effect, I think it helps to understand what's going on with me. When I had the strokes, bits of my brain died. The bits that died mostly controlled motor function: the movement of muscles. In some cases, like the left side of  my face, although sensation remained, I lost all the brain matter that was sent signals to move the muscles. In other cases I lost sensation and control, like in part of my right butt; it felt like I was sitting on something in my back pocket, but in fact I was just sitting on my ass, and couldn't feel it (I can now, no need to kick me). In most cases, I lost some of the brain matter controlling some of the muscle, with the result of making almost every part of my right side below the neck weaker and less coordinated. The secondary problem, in some cases, is that of atrophy: it's been a long time since some muscles saw use. My right hand is visibly thinner than my left, and there are muscles in my face that can only be felt on the right side.

At this point, some seventeen months after the strokes, to recover, I have to get other parts of my brain to do the jobs that the dead bits used to do. This is a process that is similar to a baby learning to use its body, a process that takes many years, and is eventually optimized in adolescence, which is why teenagers can be great klutzes, but suddenly graceful by their late teens. I'm hoping it doesn't take me as long as a decade, but it might.

Using the brain's plasticity to get live bits to do the work of dead can only happen when there is stimulus in the brain in the live bits. That's why function now improves slowly, and improvement only happens in muscles whose controlling brain parts were adjacent to living brain tissue. Their signals were reaching still-living brain matter, but it has to learn not to ignore the signals as irrelevant, and take responsibility for new muscle.

Gym work both requires muscles to work, and the brain to control them, more often than not in the stabilisation; that's why I do mostly dumbbell work. In the pool, I'm requiring muscular control and coordination, and also parenthetically working on my endurance which is pretty low. The benefits are clearly noticeable: despite being tired after swimming, I walk better. So, what does acupuncture do?

Here's what an acupuncture session is like, if you've never had one. You take off varying amounts of clothing, sometimes  lie face up, sometimes face down, and the acupuncturist puts a bunch of needles in you. Then you rest for a while, often falling asleep. Finally the acupuncturist removes all the needles and you're done. Yes, some of the needles hurt some of the time, but usually for no more than a second or two. Also, I've had a lumbar puncture (a.k.a. spinal tap), and these are nothing in comparison.

Often, you're booked in for an hour's session, and the acupuncturist will come and wake you up so they can get the needles out and get you dressed before their next client. I've been going to a great place called Olo Acupuncture in New York, that practices community acupuncture: the treatment happens in a communal space with a bunch of table and chairs to lie in. Apart from the price, the best thing for me is that they let you rest (or snooze) for as long as the treatment takes. On a recent trip, when one of the needles was damn sore, I slept for over two hours, and it's not like I'm running a sleep deficit.

There's a lot about traditional Chinese medicine that is alien to my skeptical self, and as a result I find it useful to think of much of the approach as having a very good, but rather peculiar, working metaphor. Frankly, I don't care if a practitioner is balancing my chi, clearing wind from my trembling limb, or just poking me with needles: it works. I feel better afterwards, more even, more symmetrical.

What about the placebo effect? Perhaps it's just me thinking that acupuncture is going to work, and so it does. For many of the benefits I perceive that could be the case, and the mind is certainly significant in changing the brain, but not all. The left side of my face has gradually been moving thanks to acupuncture. I have no doubt about it. Before I had needles in my face and left orbit, my left side did not visibly move. It does now.

What I think is going on is that the needles are stimulating the atrophied muscles, or nerves into those muscles, and my brain is recognising that stimulation as requiring response. Perhaps it's as simple as the needle being fine enough to be an irritant without causing damage. Perhaps it's something else: acupuncture anesthesia seems to work on a different principle. No matter, I can't stimulate those muscles any other way; believe me, I've tried.

In the end, what matters to me, is that acupuncture is helping me to recover, and to recover faster from the brain damage caused by stroke. It works.

Boobs, Balls and Lumps

Last night, after acupuncture, I went to some friends' new place ostensibly to play board games, but more accurately to celebrate the successful removal of a cancerous lump from Bitsy's boob. She wrote about how she saved her own life with a good tit-grope in the shower, and continues to write amusing and engaging things about something that is scary.

Bitsy's medical fun-ride took just under three weeks; mine has taken just under sixteen months, but we found something we have in common that people don't really get: it never ends. There are questions that simply cannot be answered accurately, or even approximately. Humans do not like this truth. Western medicine hates to have to admit it, also. This is more evident, perhaps, with neurology, but it's just as true with oncology.

When will my brain learn to use my right side? No idea.
Are you going to need chemotherapy? Dunno. Ask later.
Will you have double vision for ever? SCIENCE says probably, but not certainly.
The lump is out and you caught it early, so you're all clear, right? SCIENCE says probably, but not certainly.

The lack of a finite endpoint could be disheartening, and I think it is to many, but I like being a rational person, I like to understand things, and I like logic. I will get better if (and only if) I work hard. I don't know when I'll get better, but it will happen. So I work hard. There's no point worrying about unknowns, when the known path is right there, and clear.

What's your next step? Take that. Don't worry about the chasm down the road, you can build that bridge if you have to, but unless you take the next step, you'll never find out if there's already a way across.

I Have It Easy

My life has its moments, right now. Getting around is not automatic, my vision's terrible, and I can't think of a single thing that has not got harder since having a stroke; but I have it pretty easy, and there is no way I'm going to forget that.

It could certainly be easier: I might have died which would have been pretty straightforward (for me, at least) or I could have had TIAs, and already be much closer to my old level of function. I could also have been managing my blood pressure, fit and sleek, and not had a stroke at all, but that didn't happen.

Obviously I was lucky to have good friends and a supportive family; I was lucky Bret was around, and to be taken to Mount Sinai hospital, where I got great care. In fact I was, in the global scheme of things, very lucky to be eligible for the NHS* and then Medicaid, and to be living where I do. If I were in the majority of the 7 billion people in the world, I would be hosed. I'm also relatively fortunate to have had a stroke at 40, not 60 or 80, when it would be that much more difficult to recover.

When I think about what happened at an anatomical level, I definitely got lucky. Bearing in mind that at least two arteries ruptured, probably from the pressure, I was fortunate indeed that the damage wasn't to bits of the brain that control my heart, or lungs, none of which is very far away in the brain from the damage I did sustain.

I am able to walk now, and from the earliest days have been able to clean myself and use the bathroom unaided. My cognitive faculties are unimpaired, as far as is testable, and my memory seems uninjured. Each of those is significant to me; I'm confident that life would be intolerable for me if I knew that I was simple now, or had to have help wiping my arse. Arrogant, perhaps, but I would not want to live like that. Stroke makes you think of these things.

The cause of my stroke remains officially undetermined, but was most likely high blood pressure (check yours; if it's high get fit and get it treated. Now!), which was very high and is now under control. That's also lucky: hypertension is treatable, manageable and you can totally deal with it.

However I am reminded frequently of friends who don't have it so easy. People I met in recovery, or afterwards that have deficits that appall me. The teacher who spent much of her life showing kids how to read and write, and then taught other teachers, but lost the ability to write with her stroke. She spent a year having to re-learn how to write.

Then there's my friend whose strokes were the result of a rare form of a disease (one I was expensively tested for), sufficiently rare that it went undiagnosed until his third stroke. Each time he was recovering, he had another stroke, until the doctors figured out what was wrong with him. Then, to treat the underlying condition he had to take steroids that wasted his muscle. He couldn't make any physical progress.

My life has been challenging for a little while, but I have been able to look at the changes in my body and use them to keep my spirits up, even when they didn't directly relate to my recovery. I am lucky indeed that I can use my mind to fix my brain and get better.

Not everyone has it so easy.



* NHS: The UK's national health service which was fêted in the Olympic opening ceremony, but edited out by NBC; Too socialist or something.

Young Adulthood Is a Trap

As I look at my life and swing between feeling ancient (when I'm outpaced by geriatrics in the pool, or struggling to keep up with my walking stick) and between feeling the same age as I did in college (a surprising amount), I think the calorific bounty of our age lays a terrible trap for younger people; a trap that I walked right in to.

When I was in my teens I was strong, fit, lean and healthy. I also ate a frankly vast amount, and it didn't affect me much: I was growing enough and active enough that I could shovel great piles of junk food in my mouth and be little the worse for it.

College involved less food, but also less activity, and a lot more booze (lots of calories!). In my early twenties, I could still eat a bunch, drink plenty, and stay in reasonable shape with as little as 45 minutes of squash every week.

What I didn't realize, until it was too late, I was 40, and I'd had a stroke, was that I had encoded the idea that I could eat anything, do a little exercise, and be just fine, into my brain's world view. Because it seemed to be true. I made a habit of eating large amounts, and exercising only rarely.

Therein lies the trap: it is true, but only for the quarter to a fifth of your life (assuming you'll be 80-100 years old) when your brain is most malleable. The sad reality is that for the majority of your life, you will need to eat less and exercise more to stay healthy, all evidence to the contrary.

I guess it's one of the modern tests of adulthood: can you override your biology to account for our time of plenty, and thereby survive to old age? Not everyone is as lucky as I was and gets to retake a failing grade.

(Of course I'm aware that not everyone is living in a calorie glut; I hope this isn't obscene and offensive.)