Friday, September 09, 2005


I have a confession to make. Despite my initial promise, I have not been completely honest with you. As most of us do, I have filtered reality a bit when sharing my thoughts. I haven't lied, but I haven't been entirely forthcoming as I set out be. My writing thus far has certainly included some heavy stuff. Hinting at or flatly reflecting the typical cycle of grief that we human beings tend to go through (denial, anger, bargaining, depression, acceptance). But for most it, I've been making a conscious effort, both for myself and for my audience, to come across as positive. As hopeful. Maybe it's worked on you, or maybe it hasn't.

The cold hard truth is, on many days, living with ALS just plain fucking sucks. While everyday I really do in fact appreciate what I have, recognizing my good fortune in the world, I still need to deal with the illness. Comparing my situation to others can help, but it only goes so far. The bottom line is I still have to get up every morning and face the reality I find myself in, good, bad or otherwise. I strongly suspect that even those such as Christopher Reeves, who projected a great deal of strength and resilience, still had incredibly dark moments.

To some degree, I've avoided writing about them. And I don't want to focus on the negative going forward. But I'd be shortchanging myself and you if I didn't admit to being tempted by the "dark side of the force". Fear, confusion, despair, anger. And not just anger. Some moments, perhaps when imagining my daughter growing up without me, I feel an outright fucking fury. I have felt a rage inside of me that would rival a hurricane, and I shudder to think what I could unleash on those around me, especially those that I care most about. It takes all the will I can muster to hold that shit back sometimes. And sadly, I haven't always succeeded. Fuck.

I trust you'll forgive my choice of words if you find yourself sensitive to them. But I'm not apologizing. Bad words were invented to deal with bad situations. And lately I just haven't had enough sugar handy to coat what often feels like a shitty situation. Besides, I've got bigger fish to fry than worrying about sending a few naughty words airborne here.

Some people have commented to me or Kirsten that I seem to be handling things well. On some days I really do feel that way. I even allow myself to be a little proud of how I'm dealing. But it's not an all or nothing game. Every day is a rollercoaster, one minute feeling denial, like perhaps this isn't really happening to me. The next minute I'm angry. Rage for the way our society treats people with disability, how we spend our money on frivolity, the incompetence of our health care system (not necessarily the doctors, but certainly the administrative nightmare). And the next minute I lose all sense of hope and fall into despair. I become overwhelmed by my physical weakness, by my emotions, thinking about dying young. I just want to curl up into a ball and cry. Later I feel a sense of hope and appreciation, perhaps even acceptance, creep back into me. And the cycle goes on like that, day in and day out.

My stated intention to focus on the now is true. But while I may have done well at talking the talk, I have really struggled some days at walking the walk. I don't want to show weakness or struggle. I want to inspire and not make people worry. And above all, I don't want pity. But it's really hard, at least for me at this point, to spend every minute appreciating every damn second. Especially these past few months, with the fatigue I've been feeling. My ability to deal seems directly proportional to my energy level.

It's only natural to go through this cycle I suppose. Healthy in fact, to process the natural emotions that come with facing a fatal illness. It's a learning process and I truly believe I will get there. I have to. But I'm still learning to fall. So I trust that you will have patience with me if I need to vent here sometimes. To feel despair and depression and let down my guard.

Military folk are familiar with bad situations, most far worse than mine, and they have a saying to describe them: FUBAR. Fucked Up Beyond All Recognition. That's exactly how our lives how felt last fall after the bomb was dropped. But be that as it may, we often talked of how we would someday find a new normal. A certain comfort in our new, less than desirable situation. And I think we've reached that point, turned a corner so to speak. But we're still stuck on the rollercoaster, unable to get off.

Now that we've adjusted a bit, I think a another term the military likes to use applies: SNAFU. Hopefully you know me well enough to realize I can write that with a bit of a wry smile on my face. I'm not being fatalistic. Just realistic. And that's how things sometimes feel these days. Situation Normal - All Fucked Up.

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