This isn’t my favorite thing I’ve written… but in the spirit of “keep swimming”, I’m putting it up anyway. We’ll look back at it as a remember when, probably.
I struggle with certain ideas that are peddled to the chronically ill. That I am somehow “stronger” than anyone else, for instance. (Spoiler alert, I’m not. As a species, we crave homeostasis. And we are desperate to keep it. That’s different.)
A big one for me is this statement that drug companies in particular peddle to us. I guess it’s probably to sell the hope that the drug is the pot of gold at the rainbow. I hate it so much. You probably have heard it on your television even today.
My illness does NOT define me.
It does. I’m sorry. Maybe I’m not supposed to say that. Maybe it’s some dirty little “chronically ill” secret (we have those, you know. They’re huge. We’re probably the Illuminati.) (we’re not.) As I alluded to yesterday – in more oblique terms, probably – every day, every moment is colored and influenced by my illness. I have to sit back every morning and assess how much energy I have to give. How much social interaction I can have. (Spoiler alert: if you make me laugh, you’re on the good list. It makes me feel better to laugh…. I guess it makes me kind of like a human Prius- recharging a bit as I go along). I have to think through every little thing that potentially could happen… that could creep up… in order to make sure the things that actually need to happen can happen. If I were writing a really bad high school term paper, I would point out that this is the literal definition of “define”.
I have MS. MS doesn’t have me.
This kind of thinking just seems incongruous to me. Perhaps people find this uplifting or something but for me it just rings hollow. It does have me. I am not and will not be the same person, doing the same things as before. The carefree days of jumping around and dancing around in front of festival stages with a cup of beer are gone. Hell, I can’t always carry a coffee cup across the house without spilling. I wear a cut glove when I chop my onions because I can’t trust my hands to stop cutting or to get out of the way. I cook Thanksgiving over three days at this point… and it still wasn’t spread out enough this year.
What I can do – what I can control – is how I react to what my reality is. I can try to be as happy in my place as I can be. That isn’t “strong”. It’s survival… because if I let things flip to the darker side, it all becomes untenable. There is no bright side to being chronically ill. It’s not fun or funny… unless you count gallows humor after you stick your toe into the ground and almost take a tumble and think to yourself “well, that was fun” (it wasn’t). But I can wake up each day and be thankful for my place. I am clothed and fed. I have a warm place to stay when it is cold. Hell, for that matter I have a year round climate-controlled environment to exist within. One that helps me minimize the effects that my disease does have on me. None of that changes the facts. At the end of the day – this day and every day – I am Jim. I have MS. I will wake up with MS. I will assess and make my plan for the day within the space that MS will allow. And that is just fine. All I ask is that you (the royal you) not piss on my leg and tell me it’s raining.
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