Wednesday 18 June 2008

from despair to where.....

For the first time that I can remember, I actually experienced a feeling of hopelessness and despair the other day. I like to think that I'm generally a fairly phlegmatic person. I know that I can worry and fret about the smallest of things, but on the big stuff, I've always been fairly calm and relaxed. Any yet, sat in my bedroom the other day, I despaired. It only lasted for about thirty seconds before I snapped myself out of it, but it was definitely there.

The reason for my despair? Self-pity about my condition.

It's just about three years now since I was first diagnosed with Transverse Myelitis. I have a lesion on my cervical spinal cord, just on the left-hand side of my neck. The damage it has caused there interrupts the transmission of nerve signals from my brain down my body, and had led to feelings widespread numbness, loss of sensation and a generalised weakness, loss of power and consequent muscle wastage across my upper body. It's apparently very rare, and you could say that I'm very unlucky to have got it. On the other hand, I've read that sudden onset Transverse Myelitis can be devastating - one chap describes how over the course of a horrifying ninety minutes, he permanently lost the use of his legs and is now in a wheelchair. I've been unlucky, certainly, but at the same time it is very clear to me that I've also been relatively lucky: I am inconvenienced by condition, sure, but it hasn't actually stopped me doing anything. I run, I swim, I play football... hell, I walk, I am continent (mostly), I can swallow when I want to swallow and I have the full use of my hands.... It could have been so much worse. On the whole, I'm grateful for small mercies, but at the same time, I wouldn't wish what I already have on anyone.

So what was it that made me despair the other day? Nothing was particularly different about the way I was feeling. My symptoms never go away completely and they vary from day to day: I have good days and I have bad days. I had perhaps been feeling a little more tired than usual, and my left shoulder was perhaps giving me a bit more grief than usual, but I'd felt worse, I reckon. The numbness in the soles of my feet and in my sides, the tingling in my hands and the burning feeling in my right thigh? They're always there, and over the last three years, I've more or less got used to them. Hell, it might, if I develop any more lesions, get worse.... but I've never been too fussed about that. Why worry about what might (or might not) happen tomorrow?

So what was different now?

What was different was that, for the first time since my diagnosis, I stopped and thought about how this was never going to go away. These are thoughts that I would prefer not to have and fight to keep locked away: there is no cure for this; I'm not going to get better; my hands will always tingle like this; I will always struggle to carry anything across my shoulders for long and I will probably always have to do a set of specific exercises three times a week just to stave off widespread muscle wastage. Just this once, those thoughts came bubbling up through my consciousness and, just for a minute, they overwhelmed me and I felt a genuine despair.

I pushed it away quickly enough.... after all, what the hell's the point in wallowing in self-pity? Where's it going to get me? This condition is nobody's fault and it is what it is. No one can do a damn thing about it, least of all me, and I have little choice but to get on with it. What's the point of despair? Am I going to spend the rest of my life worrying about it and feeling bitter that it happened to me? Of course I'm not.

But now that I've experienced it, I can't forget what I felt. No matter how quickly I shrugged it off, I can't help but remember what it felt like to be sat on the edge of the bed with my head in my hands, contemplating my future with the tears welling up in my eyes. I know that those thoughts are all still in there somewhere, but I don't want them to come bubbling back any time soon.

I went running this afternoon, and it was bloody hard work. I've been extremely tired recently, and I have no idea if that's anything to do with the myelitis or if it's simply the consequence of working long hours at work and having a great weekend with my friends. For thirty-five minutes, I dragged myself through the wind and around my normal route alongside the river near the office. I'm now back in the office, preparing to work late into the night on the release of some new functionality. My hands are buzzing, my thigh is burning, my shoulders ache and I get a sharp jolt of electricity down my spine from my neck every time I tip my head forwards.

So it goes. I chose to go running. Running makes me feel good in other ways. If this is the price I have to pay, then that's fine.... and tomorrow I'll be playing football, I'll swim on Friday and then go for another run on Saturday. That's my choice. Bollocks to the WTs.

I'm not moaning about it and I don't want sympathy. This is just the way things are for me. I simply can't afford to stop and think about it too hard. That way despair lies, and I've got a life to live.


  1. No sympathy, then, just admiration for your attitude. Those things do come bubbling up sometimes; that's just part of being human. You're such a strong person in many ways, but nobody is strong all the time.

    Sending warm and bracing thoughts your way.

  2. This isn't sympathy my friend, its empathy.

    A few years back I had my gall bladder removed. Rather simple surgery, extremely common. Within six months I had some extreme pain where the gall bladder used to be.

    As things turned out, I had some scar tissue grow in a way that its sending false pain signals. Of course, it took 14 months and 9 doctors over that 14 months to figure it out and sort of treat it.

    I haven't had a pain free day in over five years, but... it could be worse. I still can do whatever I want, and sometimes I even forget the pain is there.

    Psychologically speaking though, it can mess with me. That's the hard part. Before I had some treatment that got me to a reasonable level of pain, I had many days like the one you wrote about... and on occasion still do.

  3. Just want to put in a word about the helpfulness of grief, sometimes. I know that this isn't something that's easy to grieve about, but the things that you have mentioned are losses for you. It may be that a little grief can help in the long term.