Predictably Unpredictable

Patient Expert

The other day, someone asked me why I couldn't seem to learn to work within my limits, despite knowing that doing too much inevitably leads to needing to sit still for several days healing. For once I didn't joke, but honestly told them it was because of the dread.

Dread is the undertow in my life. Dread that my rheumatoid arthritis is going to flare; dread that tomorrow, I'll wake up and my life will be hijacked again. Dread that this time, there will be no coming back. Thinking about it, even for a few minutes, makes my heart trip with panic, my breathing quicken and the tears rise in my eyes. Because it could happen, has happened, more than once and each time, I have been sucked under, held under, drowning in the pain as the disease took my life, chewed me up and when my doctor found a way to pull me back into the air and the light, I would emerge altered, less able, leaving parts of myself behind.

This disease ebbs and flows and just as water erodes the shore, shaping the land, Rheuamtoid Arthritis has shaped me, taught me caution and fear of risk, for just living with this disease is a daily diet of risk. RA has taught me fear of commitment, for what if I can't follow through; taught me to overdo today, because what if tomorrow I can't? And it has taught me panic and how to live with fear.

When things are good, the spectre of returning RA has me cramming every bit of life I can into a day and quietly panicking at the wrong sort of twinge near a joint, superstitiously not admitting that things are good, finding dozens of ways of not writing down that the meds are working, not saying it out loud for fear of calling back the disease. When things are bad and my doctor offers yet another medication, I hesitate, paralyzed with the fear of hope, because living with the disease hurts less than hoping and having hope dashed.

So do I live in dread, every day cowed by the fear? No, for that would mean that the fear would win, that the disease had come to define me, that I was nothing more than illness and a reaction to the illness. Instead I work hard to be someone more than that, someone other, each day deciding that I will not fear, each day controlling what I can to shape my own life, a life in which the disease is firmly in the background, accepted, accommodated (grudgingly), reduced to a faint murmur.

A sort of willful blindness develops when you live with a disease that is predictable only in its unpredictability, dropping the other shoe at the most inconvenient times. Because you choose at some point to not live within its shadow, because living inside the fear is no life at all and so you turn away from it, close your eyes to it, ignore it, pretend it isn't there, at times so successfully that you are surprised when reminded - either by pain on someone else's reaction - that you are sick or disabled, because it has nothing to do with who you are.

And close on the heels of forgetting that you have a chronic disease comes an urge to control what you can and I know I am not the only one who is teased by family and friends about being a control freak. Not the only one who plans and organizes and sometimes, when things are bad, gets carried away and attempts to control the lives of others and I am forever grateful to the people who love me, pretending to allow me to run their lives. But the control doesn't stop there, because it is not just schedules that are made, CDs that are alphabetized, but the larger, more nebulous aspects of my life that I attempt to shape, like the language I use and allow others to use about me. I am not wheelchair-bound, I am a person with a disability, a wheelchair user and so, place me - the person - first, telling the world that this chair does not bind me, it liberates me. I do not suffer from rheumatoid arthritis, I have it, I am living with it, for to me, being a sufferer means the RA wins, means that I am defined only by the disease and I am not it. I refuse to be it. I reject pity, need no consolation, for we all have hard things in our lives and if they look at me with mournful eyes, I will crack a joke to shake them out of their preconceived ideas about who I am.

This disease has shaped me, taken and given, too, teaching me that although I may not be able to control what happens, I do decide how I react. And so, every day, I do my best to push down the dread - some days more successfully than others - and I go out there and live my life anyway. Despite the disease. Because of the disease.