Fear is the Recovery Killer

For most of the last three years, since I first got brain damage, I have lived with fear. It's a fear that is not likely to go away in a hurry either.

It isn't the fear of having more strokes; I certainly don't want any more, but I am not afraid of more strokes, and they're pretty unlikely.

I'm not often afraid of my vulnerability, either. I am an easy target: I can't run away, and can't defend myself, except to flail with my walking stick, which is as risky for me as anyone else. I have been*, but tend to avoid any situation where I might be again, so it's not a constant issue for me.

Most of the time, I'm afraid of falling. Whenever I get up, walk, climb a stair, step over a leaf, turn around, carry anything or take almost any action, I'm afraid. It's hardly paralyzing, but it is always there. I can avoid it by swimming, or sitting and lying in one place. I do plenty of those things.

The fear is based in rational thought, too: I'm 5'8" and weigh over 180lb**, and if I fall poorly it is going to hurt, even if nothing gets broken. Small children with the same level of coordination as I have enjoy a much lower center of gravity, more padding, and less mass. Gits.

Poor me, right? Sod that. What's worse is that the fear inhibits me. I'm afraid that if I walk up a stair with nothing to hold on to, then I'll fall over, or be at risk of falling, so I hold a rail or touch the wall and don't take the risk.

As I get better, and my motor control improves, though, the danger is that I still take the safer path. That I take the lower risk path with compensatory motion, rather than the more challenging, but ultimately more rewarding, high risk path of recovering function.

I have definitely noticed a tendency to safety that sometimes exceeds my ability. To keep getting better, I have to keep pushing myself in awkward ways. I can't let the fear rule me, because it isn't going away in a hurry, and it shouldn't, but it's not the boss of me.

* I was threatened anonymously. The risk to me that the threat was real, no matter how risible, was too great. I had to remove myself. He won, by threatening violence.

** For now.

Timor Tremoris Conturbat Me

I am not bothered by the prospect of death at all; the fear of it doesn't happen to me, let alone disturb me as it did the medieval Catholic poets. I've seen death close up, my own and others, and I know that I'm doing what I can to defer my demise as long as possible. What does bother me, is the tremor and fear of it.

My right hand and arm is the most obvious place that the tremor occurs. I have what is called an intention tremor, which, if you look at the linked Wikipedia page, is "very difficult" to treat. So there's the fear that it will never go away, and I will always write terribly with a pen, always spill drinks with my right hand, and so on. I'm afraid that the brain damage's effects will be permanently with me.

The fear is more extensive though because the tremor--or at least something like it--is more extensive. To start with, my right leg shakes. This is similar to the sort of shaking that happens with muscle fatigue, and usually goes away when I press down on my right heel. My concern, though, is that the tremor extends to my leg as well, but that genuine muscle fatigue is masking it.

This isn't as crazy as it sounds, when you consider what is perhaps the scariest trembling that I have, which is in my diaphragm. My breath shudders as I inhale, as though I am taking a series of gasping breaths, instead of one smooth inhalation. I notice it when I'm meditating (it's a distraction!) but it's obvious to observers when I inhale involuntarily after sighing.

The fear that my breath will always be juddering is horrible, and I have to try to ignore it. It was terrifying to realize in November 2011 how damaged my voice was, and it's scary now to contemplate the possibility that I will never attain the vocal facility that I once had.

The most effective treatment seems to be acupuncture, so far. Nothing else has worked. So thanks to the donors who've made more needles possible! I'll talk about the needles soon, I promise. 

Fear and Compassion

The real downer lasted about a week, and I'm still kind of picking myself up from it. It was great to have support from all over, and it was definitely good to have been measuring things so I have incontrovertible progress to point myself to, but somehow neither was enough. I hate that depression is so irrational, but there it is. At least it was pretty short, and fairly light, and I'm grateful to everyone who got in touch here or by email.

It's a strange thing that as I make progress, I find 'new' areas of weakness that are afflicting me. It's weirder that they're sometimes things that I identified six months ago, but just didn't get fixed enough, or weren't fixable at the time. For example, when I was just learning to walk again, I knew that the outside three toes of my right foot weren't really doing anything. So I made them act, and in doing so improved my balance (which was terrible back then). Recently, I've been aware that my right foot wobbles around a lot at the end of a stride, and sure enough it's those same three toes just relaxing and not engaging. As a result, I'm paying much more conscious attention to them, which improves my gait, in the hope that eventually, they just work on their own. It's hard to do, though because it's hard to even notice the left little toe doing it's thing.

I had some good news again from the hospital: I have no arrhythmia, so that's another cause ruled out. The un-news was that means they still have no real clue why I had the first haemmorhage, or particularly the subsequent clots. There's one genetic test they're waiting for  (CADASIL), and another they need to decide if it's worth spending over £750 on (COL4A1). In some ways, I don't care, because of the fear.

I'm more or less fine with the idea that it was my hypertension that caused the strokes I had, especially since it's now under control. But I don't understand why it takes four drugs to bring my blood pressure down to where it should be, especially since I'm fitter now than I have been for years. Blood pressure seems more like a measurable symptom than a cause in and of itself. Of the ischaemic attacks. I can see how my epic blood pressure could have caused a brain haemmorrhage;

One of the horrible aspects of new problems being old, or just finding new things to work on is the fear that I've had more tiny strokes. The fear that my brain is steadily decaying. It's nonsense, of course, even when I think I'm getting worse, I'm getting better, but fear doesn't have to be rational. What is rational is the fear of falling: it damn well hurts. It also leaves me distressed way out of proportion to the actual physical pain, which is often not trivial. I may have lost a bunch of weight, but I still have an adult's center of gravity, and it turns out that gravity sucks.

All of which could be pretty gloomy, and last week it was, but this week the sun is shining, the gym was excellent today, and life goes on. Which means it's time for anotner:

Tale from Strokeland

I was waiting patiently to cross the street, waiting where a year ago, I would easily have nipped across the road; now I'm not sure I can get to the other side fast enough, partly because of reduced mobility, but also my inability to judge how fast cars are going. The oncoming cab stopped, and made sure I got across the road. Later that day, the same cab pulled up beside me, and the driver poked his head out to say I'd been his fare four or five months back, and how good it was to see me getting about more.

That's just one example of the countless ways that people have been kind or considerate to me, since I had my strokes. For every time that I'm annoyed at someone or something, there are dozens of small kindnesses to my day.