Bloody Resolutions

For the first time, I've maintained a New Year's resolution for the whole year. I don't recall ever doing that before, certainly not for a resolution that was specific, rather than the "I will be a kinder person this year" type of vague promise that any lawyer could drive a truck through. No, for 2017 I resolved not to fall over, and I did it.

I've sat down quite heavily, but always on a chair and one I intended to occupy, if not so precipitously. My arm flies out often to help me keep my balance and I'm no stranger to the windmill flail of a gymnast trying to stick a landing, just with much less grace. Turning has meant some fancy footwork (from my left) when my right foot has decided to land in a very unhelpful spot, but for a whole year (and since then) I have not fallen.

This may not seem like a big deal, and for most, it isn't. Not falling is like breathing: something that we shouldn't have to think about in most circumstances; it's automatic. Over the last few years, however, gravity has taught me that I do need to concentrate, and for me, not falling will never again be automatic. Instead, the preparation and calculation when I stand up, turn or just walk must always happen, and that is on it's way to becoming automatic. It's faster now, but there will always be a delay when I get moving; I always have to think about it consciously.

"I am in blood stepped in so far that, should I wade no more, returning were as tedious as go oe'r." (Macbeth)

Making that mental preparation, rather than assuming that I can turn around without ending up on the ground, is boring. If moving can't be automatic again then the siren call of the sedentary response is even more alluring: if moving is a hassle, don't move. This has it's consequences, though. Brains develop by having to work, even with physical things (we just, mostly, get the boring repetitive stuff out of the way when we're little kids), so choosing not to move inherently limits healing. Also, doing nothing makes me fat and unhealthy. The very condition caused by having a stroke makes behaviours tempting that in turn increase the likelihood I'll have another. It's a trap!

A year ago, I had no expectation that I'd make it the whole year, just intentions. At some point, I'd gone so long without falling that merely having to start again would have been painful, as well as the physical discomfort of having fallen. By the last few days of the year, I was determined not to waste my efforts, although such 'waste' makes no objective sense. Now, a new year has begun, and I'm just as determined to maintain my resolve and not fall.

However, I've already made it a year, demonstrating to myself both that I am able to not fall for a whole year, and that I have the stubbornness to sustain a resolution. It would be foolish not to use the latter for further gain, especially to counteract pitfalls; resolving to eat a packet of biscuits (cookies) every week would easy, bad and delicious.

Last year was tough for me; I was depressed and news (local and international) has been appalling. I've found it hard to see anything ahead but doom and consequently had little motivation beyond the hedonistic. As a result, I find myself at the start of 2018 fat and unfit which is a downwards spiral, since exercise increases serotonin levels and makes one happier, as well as fitter and less likely to die.

So, for 2018, I've added to my resolution. I'm still adamant that I won't fall over, but in addition I've resolved to go to the gym at least three times a week and do some exercise. If I don't go three times and could have then my falling resolution is failed: I'm leveraging the tedium already spent to require further tedium. I am in blood so far stepped in... It helps to know that in a few months, going to the gym won't be a chore any more, but one of the ways I've failed before is when my routine has been disrupted; it's been trivial to routinely not go to the gym after a valid event to prevent me going. The resolution addendum, therefore, is not absolute: I know, for example, that I won't be able to go to the gym at the end of February because I'll be on a boat in Norway, but the addendum will require me to go back to the gym when I return.

This time next year we'll find out if my resolve is stronger than my indolence.

Scoring Goals

Two years ago and change, I had a clear goal: I wanted to get home. It was not very generous to the home I had lived in for most of the recovery until then, my father, stepmother and sister's home. Nor very generous to them, or the many people around me who were invested in my recovery. Nevertheless I wanted to be well enough to go home to New York City, where I've lived all millennium.

Without realizing, I had a clear and attainable goal for exercise, and through exercise, recovery. Returning home, though, has been a problem. Sure I have a ton of friends here, and a great support network, but my goals for recovery have been too distant, and I have often failed completely and fallen into a mire of doubt, depression and inactivity. My goal to walk on my hands again is too far away to be useful.

I also have a different perception of expectations here in New York. When I don't go to the gym or pool, then I feel as though I'm the only person who suffers. Back in England, I feel more keenly that I am disappointing the people around me. It doesn't make a lot of sense: people in the US are just as invested in my recovery, and people in the UK are invested regardless of where I am (not to mention those elsewhere). It may not be wholly rational, but I find it easier to exercise in the UK than in the US.

Of course, since I'm aware of the problem, I'm trying to fix it, but setting a goal that makes sense is hard. Right now, I'm lucky: I have a definite date by which I want to be in as good shape as possible. That means swimming 3-4 times a week, and going to the gym 1-3 times weekly. Or I fail. No excuses, no alternative.

Come January, though, what then? Goals to lift weights aren't very useful to me. I already swim for at least an hour and a half, non-stop. What next? Something attainable, achievable through diligence, beneficial. If I think of something, I'll let you know.

Sucky Progress Report

Several weeks of progress report obviously went missing largely because they sucked. I've gained a bit of weight (which I don't care about that much), and just not been to the gym or swam enough, let alone written enough, and so on.

Part of the problem was undoubtedly that I was off my depression meds for about two weeks, which was plenty long enough to start feeling the effects. It was all due to a preposterous series of cocks-up between my nearest pharmacy (the slowest Rite Aid in the world) and my doctor, and is at last sorted out. In the meantime I discovered that, even knowing that short-term discomfort or not-fun was better for me long-term than short-term pleasure intellectually, without the anti-depressants I made the wrong choice every time. With them, I make better choices.

On the other hand, I've noticed several small improvements that tell me that, slowly but surely, I am recovering. They are all attributable to some activity on my part, about which more anon, but they are still happening.

Moving Goalposts

I think one of the factors contributing to my erstwhile depression was the lack of a goal. More concretely, I had accomplished all my goals, and was left with nothing immediate to reach for, and a resulting sense of futility.

When I was in the UK, I wanted to be well enough to make it on my own, and to survive back here in New York. On top of that, I wanted to host a party to celebrate not dying for a whole year. Finally I wanted to attend the Burning Convention and run a game that weekend. I achieved all three goals, and promptly plummeted.

So, I intend to set myself some goals, and track my progress towards them. I'm going to try not to ask a vast amount of myself because it's unrealistic, but here goes:

Weight - I weigh too much again. I want to be at (or under) 170lb, from this morning's 197lb. There's no time limit on this goal, so long as I'm trending in the right direction.

Exercise - Staying at the frequency I was at before is quite doable. I should be at the gym 3-4 times a week, and swimming 2-3 times a week.

Meditation - Like exercise, this is one of those stupid ones: I know meditation does me good, so I just have to hold myself accountable for doing some. Let's start with making it super easy: meditate every day this week; doesn't matter how long for.

Stretching - I haven't been doing the neat regimen of stretches that I was doing for the dumbest reason: the android app that was timing the stretches is broken. Dumb, dumb, dumb. Goal for this week: stretch after every gym session. Stretch goal: every day.

Writing - Apart from this blog, I write stuff. Except I haven't been. It's tiring, but it is possible. So: write some of Project #1 every day. For the first week, a word is enough (but more is better). I also have projects #2 and #3 which deserve dates, but not this week.

Sure, I have to face that I do have more limited resources than I used to have, that reading, writing or typing take longer, in some cases much longer, and that despite the sure and certain knowledge that all of the above are good for me, sometimes I just don't wanna. But I know that if a week goes by when I haven't met these goals, then something is wrong.

So look for a progress report next Sunday where I find out how realistic my short-term goals are.

So Guilty

I feel hugely guilty that there's a backlog of email, commentary and Google+ private posting that I have to respond to, including kind friends and strangers whose generosity has gone quietly unobserved, those whose advice and support were personal and may have been agonizing to write, and those who offered no more than their love and empathy, which was more than I could have expected.

I read it all.

Every bit was helpful.

Writing to me no doubt was a costly endeavor in heart and soul, and I am truly grateful. It will take me some time to reply to everyone, because I don't want to be flip with any responses. Over the last couple of months I haven't had the emotional resources to reply as I think every message warrants, but that is changing.

Of course, there will be some who would pooh-pooh the idea of a reply, but they can STFU. They'll get one in the end. In the meantime, thank you!

Twists and Turns

I just finished Matthew Mitcham's autobiography, Twists and Turns. He's the Australian diver who won the gold medal at the Beijing Olympics with the highest scoring dive in Olympic history, which remains one of the most astounding pieces of physical activity I have ever seen. He was also the only out gay man at that Olympics, which is a delight: he's so bubbly and personable, yet still an amazing athlete (you hit the water at about 60kph from the 10m platform). A great role model.

The book is well enough written, it carries his voice strongly and articulately, which more than makes up for the naif style. Where it shines, though, is in its bruising honesty. This is a young man who was best in the world at what he did, a physically difficult discipline requiring hours of training every day, and who was nevertheless dogged by low self-esteem, depression and addiction.

As someone who is coming to terms with my own depression and self-esteem problems, now exacerbated by having had a stroke, Twists and Turns was as clear a message as you can get that the causes of depression are independent of the feelings of depression, and that unless you treat depression, you are screwed.

It's a great read for a number of reasons (including the big line spacing which made it easier for me), and I would recommend it to anyone interested in elite athleticism, Olympians, depression, addiction or the benefits of living an honest life.

Ça Continue

Monthly update time! Once again there's mixed news, although its less horrible than last month by far. The bad news is that, thanks to a couple of months of depression, I've put on a grotesque 9kg/20lb, and I've gotten weaker all over, which I guess is what happens when I don't to move anything but my jaw.

Time has been moving pretty strangely for me recently; I was reminded just how strangely last night when Bret mentioned that he'd been at his job for two years now. To me, it feels like a few months since he started, and not in the usual gosh, how time flies way. I will be 42 this year, but I feel like I just turned 40. In a way, this time of recovery feels unreal, the deficits I have feel somehow not me although I find it impossibly remote to recall what 'good' or 'proper' movement feels like.

As well as the oddity of having my (wonderful) sojourn in the UK feel like a dream, there has then been the months of depression. Again, I've been lucky in that it wasn't completely crippling, and I've had a lot of friends and acquaintances reaching out to support me. I hope they understand that, too often, it's been more than I could manage replying, but I will reply in the end.

For me depression has been like a sheer black veil, so fine that it's imperceptible. Each day another veil, with so little change from the day before that it's hard to tell that the world has gotten a little bit darker. Eventually, I am in a profound blackness that feels quite real, and impossible to break. It's shameful to discuss because it is so hopeless and so ridiculous. Each time someone contacts me, it's like a small hole in the veil; and if I reach out, the veils are insubstantial and I punch a hole in the darkness and let some light in. The veils keep drifting in, though, day by day, and sustaining an upbeat view on life is a Sisyphean task.

Happily, modern psychopharmacology is stopping the darkness from gathering, and gradually lifting the veils. I was reluctant to take SSRIs (or any mind-altering drug), because it feels like such a pathetic concession of defeat. My doctor pointed out, though, that I had chronic depression, I had good reason to be depressed, and over half of stroke patients have some form of depression. 30 days later, and I am glad to be taking the happy pills because I feel more like the person I was three months ago than the miserable sod of last month.

I know that long term I do not want to be taking anti-depressants, but I also know that I have to build far stronger habits of mind and body before I stop taking the nice little pills. They're a crutch, but one that I need right now, so I'll use the crutch, just as I walk with a stick.

The better news is many-fold: The improvement in my face has continued so although 15 months later I still can't smile with both sides of my face, I'm optimistic that eventually full control will return. I'm also sure that my double vision is slowly improving, but that's so slow that it feels more delusional than ever. Fortunately the idea of my vision being this wretched for all time is still untenable, so I'm resisting the idea that I am deluding myself.

Further, I think the right-hand side tremor / dysmetria is improving a bit. While it is still gainfully and painfully difficult to write, type, use keys and so on, I have noticed I am spilling less coffee while I walk up the street, which is a good thing.

That may, however, have been caused by the best improvement, which has been in gait. It's surprisingly hard to tell where the improvement came from: my hip is less loose, but my foot is more responsive, too, and I noticed on the cycle at the gym yesterday that my right knee's tendency to deviate to the left was almost gone. What was so striking was that the improvement came overnight, at a time I was feeling very low. I wonder if the anti-depressants had an effect, or it was just the right night for a brain connection to be made. Regardless it, once again, gives the lie to the idea that there's no significant recovery to be made after six months. That's just total horse shit.

I guess that's the moral of the month, especially if you're recovering from a brain injury: you may be depressed, that's OK, get help, and never doubt for a second that recovery continues: I had a step-function improvement that was clearly neurological, overnight, at 14 months. I am not extraordinary, most doctors are just wrong.

Tired

First things: some good news before the rest of this post depresses the crap out of everyone. There's now visible movement in my left cheek. It's not the whole cheek (or indeed the whole of my lips), but it's a good sign. I am also confident that my double vision continues to change; it seems to me that the displacement is slightly less diagonal and slightly more vertical. Given that I can now see what I have been feeling for a while in my left cheek, I don't think I'm deluded.

Now, the less-than-good: I've been profoundly depressed since late October. Medicaid got renewed (although their inncompetence is mind-boggling), so I have a prescription of happy pills to help turn me back into someone other than a moping ninny, but they sure as hell haven't kicked in yet.

The chronic depression is not unusual after a stroke, and even though I know that what I'm feeling is partly a biochemical thing, knowledge doesn't do anything to allay the sense of futility I have. Back in the UK, I was working towards coming home, but now I am here, I have to ask what now?

It would help, perhaps, to believe in anything other than entropy, but I don't, and having a stroke certainly hasn't changed that. Knowing that I have occasionally helped people, amused people now and then, and been liked, and even loved, is some solace, but that doesn't change the sense that had I died last year I would have been mourned and perhaps missed, but little if anything would change for anyone.

This is far from easy to write, both because I suspect my current rather bleak view on life is infectious, and because it's hard to admit how utterly useless I feel most of the time, but I always intended for these updates to be as honest as I could manage, and skipping is a coward's option. I've been working to smile to for over a year, and all I have to show for it is a twitch in my cheek. My balance is terrible, the tremor remains, and the worst is that it is now so hard to read. I'm not sure what's left to me, or of me.

Being with friends helps, because I have to sustain the front that I'm doing OK, that I am managing with everything, and if I practice being OK with how broken I am, maybe I will be. It is weird writing about how bad I feel, knowing that many of the people that I work so hard to convince that everything is going swimmingly will read this. The truth is that I need help and I am tired of not asking for help. I hate that I need help, I hate that I am so faulty, but I need convincing that life is worth living.

Before anyone panics, I am hardly about to go and top myself; that would be rude, stupid and awkward; it would cause unnecessary pain, and would be a shitty thing to do to whoever found me. I think it's very uncivilized that our society has no acceptable way of saying I think I'm done here, but it doesn't, so that's that.

(Not surprisingly this provoked a response from many people, and the reaction was universally helpful. I'm doing better now (Jan 2013), but can't deny that I was doing very poorly in November and December of last year.)

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.

8 Month Downer

Eight months and counting, and I am at something of a low ebb.

Physically, I can point to the progress I've made, which is consistent but slow. My eyes continue to improve, although I sometimes worry that I'm deluding myself; it's worth it to remember that it takes babies a good six months to get their eye musculature coordinated, and that my diplopia is unlikely to resolve faster than that. Stroke is making me patient.

Sadly, I've confirmed that I have an intention tremor in my right arm and hand. and to date there's been nothing much that western medicine could do about it. Acupuncture has been generally good, though, and I try to remain optimistic that the needles will beat the tremor. There are worse things to suffer, of course, and learning to be left-handed wouldn't be the end of the world.

My left face is still palsied, and my left eye doesn't shut on its own still, but both are improving. Again, slowly.

I don't understand why my blood pressure remains so high without medication; I've added a beta blocker to the mix to the other three pills that are there to manage my hypertension. It seems unreal that, when I am fitter and healthier than I have been in many years, something so primitive and fundamental is beyond my power to affect without medicine.

As I improve physically, though, the brutal reality of life comes on the horizon; to date my focus has been on recovery. It is hard to laugh when every positive sign is met with yet another failure. It's been days since I last fell over, and at least then I didn't hurt myself at all, but any time I'm feeling a bit more deft, I can expect to land on my ass soon enough.

Excellent as it has been to recover in Dorset, I miss New York keenly, more for the friends I haven't seen in so long than anything else. 

This depression is no stranger, and even less a surprise now that I have brain damage. I know it will pass, and until then I just need to keep soldiering on towards recovery. Today, though, it feels like hard work.