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Location: United States

It's everything I want to tell people when they make small talk and profound talk, but I often can't. Sickness, sex, and the process of dealing with aging parents feel unspeakable and sometimes unreachable, but they sure aren't here.

Wednesday, January 11, 2006


Originally uploaded by Arnold Pouteau's.

There's this fear that even though I am fully in the driver's seat of my life, I am left far, far behind everyone else, just waiting, and my car is going nowhere. My resume testifies to the slow, plodding achievements of my life so far, or rather all the things that the outside world would accept as achievements. The outside employment world may not care what it was like to learn to walk normally again after a major walker stint or to rehab my spine. Those aren't the things I have listed under "Projects" or "Skills." This is the reality of fatigue and hours spent sitting in medical settings: compromised productivity *at times*; adding hours to the work day to compensate for the time lost to medical things; or simply not working 12 hours in a day when that's exactly what I want. What if everyone is moving faster than I am? What if they are, in fact, leaving me in the dust? Is it a race? When I saw my neurologist and internist this week, we talked about the realities of not wanting to sleep so much and the ongoing battle of fatigue. Previously, another internist prescribed Inderal, but I stopped it after the first pill for several reasons, a strong contender being the resulting "sluggishness," as the doctor called it. That simply won't work. I am already in a battle with my white cells and drugs for energy. I get first crack at it as much and as often as possible. My doctors and I this week talked about ways of avoiding narcotics and other lethargy-inducing drugs. We thought of ways to use hormones and steroids. We found ways of allowing me to incorporate my mega-caffeine: "Why do you need all this caffeine? Is it just habit to keep taking it for hours?" "No, I need it. If I want to run on the same playground as the healthy kids, I have to be awake and go just as fast. I have to make results happen, just like them, and I have to invent ways of tricking and coaxing my body into letting me do that."

Photo credit: by Arnold Pouteau on flickr (click on photo for more work by this artist).


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