treebendingwindA lot of adjusting needs to happen when a human comes down with a chronic illness. The complex web of commitments, obligations and responsibilities—all the patient was accountable for— must be scaled down to what is appropriate to their newly reduced capabilities. This invariably involves conversations (or e-mails) that can be difficult because most of us don’t want to be seen as not “showing up” or “being flaky”. I personally hate reneging on my word and have found that I am conditioned to feel shame when I am forced to do so. But, such is our lot with chronic pain, or RA, or lupus or any other debilitating condition. We live and still make commitments in the hope that we will be able to fulfill on them, or else we have no future. It’s that future that keeps all of us going.

“I guess it comes down to a simple choice, Billy, get busy livin’ or get busy dyin’..” as Andy Dufresne said in Shawshank Redemption, a quote that has become ever more pertinent to me. I constantly make promises that I might not be able to fulfill, but I have learned to build a lot of wiggle-room into the process. Clients, friends, volunteer coordinators, medical professionals are all appraised that I may or may not make it, given how my body is doing. They are assured that I will do my level best, but will stop short of doing damage to myself. I am completely open to them not finding it convenient and will work with them to find alternatives to achieve their agenda given my physical restraints.

In quite a few accounts I have read online, people are choosing to hide their condition from the world, and I cannot fathom how they manage for long. Truth be told, I did try it in the very beginning when I had no diagnosis and couldn’t fathom that this was ‘for real’ and a serious life-long event. It backfired a few times in embarrassing ways when clients were no longer mollified by my creative excuses around delays and friends wouldn’t stand another ‘raincheck’ on a date, until I came to realize that explaining my ailment was an opportunity for honesty and intimacy rather than a confession of weakness.

People who could not deal with the level of unpredictability (and there were a few) were free to make other choices, and I got to keep my sense of integrity. Those who chose to stay and engage on the terms we both had been dealt had to be brought up to speed on how RA affects me, and in turn, them, and our relationships deepened as a result. One lady in particular found this vulnerability in a grown man to be “accessible”, and chose to become my partner despite the real challenge of taking on life with a chronically ill mate. (Insert here, if you will, the most thunderous standing ovation for the fleet of angels everywhere standing by their partners. Heroes, every one.) On the other end of the spectrum, actually showing my doctor my level of distress when I had a gallstone and felt I was dying got me an astonishing level of compassion and response from people I had formerly experienced as fairly blasé​ about my problems. Sharing deeply and being real about my weaknesses never came easily to me, but it turned out to be crucial for me to manage my life with any chance of “success”.

It is a deft sleight-of-mind to maintain this ‘willingness-to-be-at-the-mercy-of-my-illness’  without falling into the role of ‘victim’ or ‘sufferer’, (it can be a fine line, after all..) but I feel it vital to my pride and relationship with myself. My minds-eye it shows it as a sapling bending before the onslaught of a fierce storm, springing back after each gust subsides and stronger for the flexing.  It requires keeping a tight leash on my self-pity and a vigilant spurning of thought-paths that lead to the Dark Places, but it is a point on which I refuse to yield. Holding that distinction is the tenor of my life in dancing with my monster.

It works for me, and I’m sticking with it.