The Worst of Times and the Best of Times
For as long as I can remember, I have been the worst case scenario.
When I was growing up, there weren't a lot of options in terms of treating RA or JRA (now called Juvenile Idiopathic Arthritis). And when I say there weren't a lot of options, I mean there really wasn't more than one, maybe two. There was gold injections and there was prednisone and although prednisone was used when things got really bad - as it did for me when I was 12 and my JRA went systemic and almost killed me - the goal was always to get off of it.
Throughout my childhood, my parents were the ones who helped everyone else in the loosely organized support group for parents of kids with JRA, because I was the poster child for how bad it could be and that meant they knew more than anyone elsse. I was the one for whom medication either didn't work or caused side effects that meant I couldn't take it. I was one whose body was so screwed up by age 14 that I spent a couple years in a hospital bed waiting for hip replacements because my hips had fused and I couldn't sit anymore. When I did get the surgery, the goal wasn't to get me walking again. It was for me to be able to sit in a power chair so I could get out of the institutional setting and go home.
They say that if you get RA today, the chances of you ending up in a wheelchair are miniscule and in that way, I'm still the worst-case scenario. The one that people look at and shudder in fear that this is possible, that this disease can wreck you this much
And then there was another flare in 2004, another big one, another fire in my body that almost killed me. But this time there was another medication that worked and one that I can keep taking. A drug that gave me back my life and then another one like it that gave me back even more. Gave me the opportunity to pursue a lifelong dream, to build the life I always wanted to build and now, five years later, I am even somewhat successful at it. After 40 years of being the poster child for the worst that can happen, I find myself in a most unusual situation. Because now I seem to have become the best case scenario.
It is a concept that people find surprising, even confusing. They look at me, at my deformed joints, my restricted movements, the high levels of chronic pain, the wheelchair and all the rest and see only can't. See only the surface and assume the worst. But I am the worst-case scenario and the best case scenario, both at once, overlapping, shifting in and out of focus like a mirage depending on your perspective. From where I sit, this is not worst. This is best.
And there's more. For as long as I can remember, I have lived Under the Shoe. Lived with the knowledge that it could all change in a moment at any time. Lived with the undercurrent of dread that maybe tomorrow, the meds will stop working, the RA will come back and take away my life again. Nine months ago, I wrote about a shift in my thinking when I realized that for five years, I'd been doing well on Biologics and I dared to take the leap and believe that maybe, I could hope for another five or more, could stop living entirely in the moment and start planning for a future. It was a big shift, a scary shift, taking this step into having faith that the thread that held the Shoe would be strong enough.
But there is still more.
Earlier this month, I mentioned a forum about RA and I was there last Thursday, listening to Dr. Ed Keystone talk about RA in the past, in the present and the future (I’ll put up a link when they post the webcast, he's a fantastic speaker). Although I've known it in some way through my work on MyRACentral, it was this speech that made it all click on a personal level. I came close to tears more than once throughout Dr. Keystone’s speech and it took me a while to realize why.
It was because his talk about the options that now exist, the nine Biologics on the market, the more that are coming and other types of meds still in testing gave me hope. And not the kind where you close your eyes, cross your fingers, base it on nothing but desperate desire. Now there is the kind of hope that is based in fact. The fact is there should the Humira stop working - this is terrifying to say out loud, so please everyone, knock something wooden for me - I have another seven options with more to come. And there is actual and real possibility - probability? - that should the RA come back and try to take my life away again, my medical team and I will fight back with all the weapons available to us and for the first time in my life, there are many. Which means that it will be more difficult for RA to entirely steal my life again.
For the first time in my life, the deep undertow of dread that has shadowed my days for as long as I can remember does not lead into a bottomless abyss. For the first time in as long as I can remember, hope is not a matter of blind faith, but an entirely reasonable notion.
It is the best of times.