If I was going to have a disease, it figures it would not be a politically correct disease. It was bound to be something of epidemic proportions that the medical establishment would not acknowledge—like climate change or peak oil—something so phantasmagoric it would have the ability to hide from potential cures like antibiotics or herbal remedies, change form, play dead, and entirely outsmart the perfect orchestration of the immune system. Many people I’ve talked to have revealed how the disease has gone “into remission,” yet remains a threat like a bully on the play ground who decides to pick on someone else and leave you alone, only, any day he could return to work, making your life miserable if he chose to do so.
If I was going to have a disease, it would not be clear cut and sympathy-arousing like cancer or ALS. It would be misunderstood and embroiled in controversy so that I would not only be forced to find my own journey to health, but, by association, feel responsible to be a voice for others living with the disease. I would be led (by an unseen but all knowing force) through the physical pain, cognitive impairment and crushing fatigue on a spiritual journey because, let’s face it, I haven’t gotten anywhere in the physical world of doctors, treatments, or validation for the past thirteen years. The way out, I’m realizing, is not something I can think or feel through. The solution to this disease – as has always been the case with “incurable” illnesses throughout the ages—is only through a miracle of faith that I will come out on the other side healthy and able to advocate for the people still fumbling through incredulous doctors' offices, prescription bottles and the debt of their conditions.
The late, beloved physician and writer, Oliver Sacks, who died this past Sunday, wrote in A Leg To Stand On about the predicament of the patient: “There had been . . . two miseries, two afflictions, conjoined, yet distinct. One was the physical disability—the organically determined erosion of being and space. The other was "moral"—not quite an adequate word— associated with the reduced stationless status of a patient, and, in particular, conflict with and surrender to "them"—"them" being the surgeon, the whole system, the institution—a conflict with hateful and even paranoid tones, which added to the severe, yet neutral, physical affliction a far less tolerable, because irresoluble, moral affliction."
Intrinsic to those of us with unresolved, chronic illness is this moral affliction. It is what makes me call into question my self-induced limitations and why I aspire to have a non self-pitying, non self-important day. And then comes a day like today when I’m able to sit down (or lie down) to write not only for a sense of purpose, but to hopefully connect with others. A reprieve, a spiritual gift. A way to touch others that may or may not be looking for Godot, but who are learning not only how to be sick, but how to be well in spite of their illness.