The idea that family members, loved ones and friends would be disinterested or unsympathetic to the MS sufferer would have surprised me in the past. In fact, it did surprise me as I began early on to discover this reality. It is actually where the name of this blog came from. In brief, I had remarried, and my new wife and I were having some relationship troubles, unrelated to MS. My daughter from the previous marriage, having heard of this 'trouble in paradise' through the grapevine, called me on the phone. She asked no question about my MS. She did not ask after my health or my condition. No, she said, with barely concealed glee, 'Sooo, how are you and your new wife doing?' It was my first experience of the fact that other people, even those close to you, have no interest in the issue of your health. And so I answered, rather tiredly, acutely disappointed, 'Oh, no worries. Everyone here is Jim Dandy'.
In the years since then, I have heard many stories like this one. I have heard many MS sufferers express surprise and a sense of betrayal that those who they might have thought would come alongside them and help take up their burden were silent instead, disinterested, irritated, annoyed. I have heard, as well, of a fair number of divorces as a result of the disease. I have heard the accusation that we are not well because we don't really want to be well. I have heard the accusation that we are exaggerating our pains. And, of course, I have heard the simple solutions -- you need to take more vitamins, you need to take these stem-cell pills, you need to get more exercise, you need to stop thinking about it. You need to get over it, because your unwellness, your complaints, your deficits are ruining our marriage/friendship/relationship. In short, your disease is ruining my life and I can't handle it anymore.
Of course, this is not everyone's experience. It is just much more common that one might have imagined. Many of us are truly on our own. For many, the only sympathetic ear is that of the doctor -- and, of course, you have to pay him for his time. We find ourselves increasingly left out, uninvited, off the friend list. And that's only natural, in a certain way -- for those who are healthy do active things and those who are unhealthy do not. We would if we could. Please understand. We do want to live again, to function at 100 percent, to laugh, to run, to hike, to party -- to simply feel comfortable once again in our own skin, to throw off the burden that this random disease has inflicted upon us, to recover, to be well, to be able. BUT THIS IS NOT OUR CHOICE. The disease marches forward. It neither seeks nor needs our approval. In fact, it has nothing to do with us. It lives its own dysfunctional life, having seized control of an unwilling host. We are taken captive, blindfolded, gagged. We are locked in cells, slowly starved, yet kept alive.
And in our captivity, the body wastes away, but the heart grows large and strong. This, at least, is within our reach, and the road is open, the way unfettered. Compassion is very close at hand.