"Med-seeker." "Clock-watcher." "Junkie." The last is my favorite, because it's the most honest I've heard. People really think these things about us, don't they? They have no idea what it's like, for us. In our personal orbit, our allies are the hematologists - occasionally - and the career nurses, usually the ones who've had some pediatric experience, who've been there and know our suffering to be real. Here's our first hurdle, my comrades: convincing other people we're really in as much pain as we claim.
We suffer from a disease that almost only affects Black Americans - this creates a socio-political dimension, an angle that has nothing to do with our health and everything to do with our appearance and the stereotypes other people have about us. This is not a second hurdle, my friends; it's a sad reality that raises the height of the first one.
There are other hurdles, of course, depending on whether or not we can even afford the frequent health care we require, and whether or not we have access to the quality of care that will get us back on our feet and back to our lives quickly. I've been so fortunate, to be able to afford that high-quality health care, to be able to remove that concern from the front of my frequently troubled mind. If this has not been your story, I am pained to know it. But we share so many other battles, don't we?
I'm thirty years old; I've just pulled myself out of yet another bout with Sickle Cell, and I'm in the cleanup phase. You know what I mean: the drugs are just about fully flushed from my system, the swelling from the infiltrated IVs has started to recede, I don't feel the urge to crawl in to Mommy's bed and huddle into the fetal position so often; but there's still recovering to be done. I've got homework assignments left to turn in, this blog to reinvigorate, and oh yeah my life to live again. Because it feels like a little hiatus from life, doesn't it? It feels like we have to stop and drop everything and dedicate the full powers of our hearts and minds to coping with this pain and what we must do to arrest it. In fact, that's exactly what our bodies require of us, and we have no choice but to obey - that level of pain is so much harsher a master than any Simon Legree.
When the whips of our master finally subside, there's a moment of shocked relief, of returned breath, of looking around the room and waiting for the next blow to fall. Even as we return to our daily lives, that waiting often fails to leave us in peace, doesn't it? We'll get so excited about new opportunities, only to remind ourselves that our vision of the future is contingent upon our ability to rise up and face it. It's easier, so often easier, to surrender any notion of a future; to live day-to-day, not in the healthy way espoused by 12-Step Recovery and therapists everywhere, but in the manner of the terminal patient who wonders upon each sunrise if he'll be granted the gift of seeing the sunset.
Each of us has our list: the List of Things I Really Wanted To or Almost Got To Do, But Got Sick Instead. My list is not short, and there are some very big items on it; but I've begun a new list, the list of Things I Got To Do Even Though I Was Afraid I Couldn't - and it's growing fast. These are the little resiliency tricks I want to share from time to time. I also want to share my experiences, the ones I know you can relate with, because the single most empowering two-word phrase in the English language is "Me, too." I know, literally, your pain. I have felt it, and the despair that comes swiftly behind and sometimes well ahead of it.
I want to pass along my little tricks for hospital survival, like how not to strangle that one nurse that's driving you nuts (remember, she's on a long shift, doesn't understand Sickle Cell, and will be out of your life in just a few days). I want to remind you that the humor of the gallows is your friend. I want you to know, and I want to remind myself, that a full life is possible for each of us - as long as we know how to cope with its necessary interruptions.
Its dull and throbbing, sharp and stabbing, seemingly never-ending, universe-narrowing, are-you-sure-that-scale-only-goes-to-ten-asking, emotionally crushing interruptions.
No comments:
Post a Comment