A little help
Posted by boakley59 on March 6, 2010
Friends, I’ll be contacting many of you shortly for support against Crohn’s disease. Here’s a bit of lead-in to that upcoming message:
I love basketball. I can explain that it’s because speed and quickness are advantages but endurance and consistency are equally important, that a racehorse type has no more or less chance of success than a draft horse, that the game’s ebb and flow give a player with the grace of a dancer hope against one with the brute power of a boxer. But if you don’t play and relish the game as I do, you probably won’t believe all that.
What has me thinking about basketball today, anyway, is an odd little thing that happens when the ball bounces away in a pickup game. If you’ve not heard the term before, that’s an open game not in sanctioned competition — playground ball, fun among friends or strangers, haphazard teams assembled at the gym. These are the affairs where people like me get their exercise, test ourselves a bit against other dreamers and remember fading youth.
Anyway, every once in a while in such a game, the ball flies out of bounds into whatever lies beyond. Then a player or two in closest pursuit will yell “A little help!” to anyone near where the ball ends up. It’s a small thing to grab the ball and toss it back, yet it allows the game to continue when things have gone beyond the players’ control.
Lately, “a little help” has been much on my mind as Suzy and I have gotten involved with Take Steps for Crohn’s and Colitis, a fundraiser of the Crohn’s & Colitis Foundation of America. I have been thinking about why we are doing this and what we need, and the answer is that we are looking for “a little help” for all those in Arkansas who suffer with inflammatory bowel disease.
Over the years since I was diagnosed with Crohn’s in 1998, we have been so lucky to have immense help from friends, family, and friends of their friends (check brulog’s health category for tales of the past couple of years). From hospital visits every time I’ve been especially sick, to meals prepared when Suzy was trying to work and serve as nurse at the same time, to overwhelming generosity that paid our mortgage for three months after we lost much of our income when I first became disabled, we are grateful beyond words.
With all that help, we survived the crunch. Suzy found a good job with generous benefits and I was granted Social Security disability, so we have our finances under control again and we are relatively secure.
This game, though, is out of our control. I still have pronounced fatigue and every time I have thought I was a bit stronger and able to take on a fuller life again, I have quickly found myself worn out, usually rehospitalized. My disability is reassessed every three years as well, and there’s no guarantee that my illness translates to bureaucratic standards. My employer’s insurer denied my initial claim, suggesting that accommodations such as pillows should have allowed me to continue working. I had then not been able to sit comfortably for five months, and the surgery needed to correct the condition weeks after that ruling prompted its reversal as the insurer decided perhaps I did know the difference between needing pillows and being unable to do a desk job.
So, for the moment our finances are under control, but the situation is not. We have come to realize that we are not alone in this, in more ways than one. We have great friends and great help, but 1.4 million Americans suffer with IBD. In this economy, amid the political debate over whether our health care system needs reform, it is harder than ever for any of us to cope with chronic disease. We want others to have the kind of support we had.
So, we are turning to you who have already given us so much and asking anew for just “a little help.” The CCFA provides information and support services for IBD patients, but there is no Arkansas chapter. We are marching May 15 in Riverfront Park as the Team Taylor Trotters, raising funds for research and support. If the walk generates enough interest, that will encourage CCFA to open an Arkansas chapter.
Please visit my Take Steps page and lend your support in any way you can. You will find links to donate, join our team as a fundraiser yourself or learn about the CCFA. You can see who is on our team and even search the CCFA database of teams for more than 100 walk sites, so if you know someone else wrestling with the disease, perhaps you will find even more reason to help.
Maybe “a little help” will be the thing that gets me back on the basketball court after these past couple of years out of bounds. More important, perhaps it will lift up somebody who’s new to this IBD game and hasn’t had my blessings.
Many thanks, my friends.