I continue to struggle with the crash from hell, but Joe Landson has graciously stepped up to provide a guest post. His chance encounter on the streets of Washington, DC gave him a powerful insight into our own advocacy situation.
One Sunday in early January, I mustered the energy to take my mother to the National Gallery of Art in Washington, DC, just a few blocks from the Capitol Dome. We walked past a steam grate with the usual collection of homeless men gathering warmth from it. However, one man was different, and stood out. First, he was white. Second, he was very young. Third and most oddly, he made direct eye contact with me, following my movement as I walked past holding an umbrella over my mother. The moment stuck with me, but what could I do? My first duty was to my mom.
The next morning I saw this article about him. For those of you who don’t have time to read the article, an Associated Press journalist photographed the very same man for a story about the cold snap here in the mid-Atlantic. While scanning the news, a friend of friend recognized the young man’s published photo, and alerted his parents. They in turn brought him home to upstate New York. He had disappeared from their house on New Year’s Day.
Yes, it is the same man as the one I saw. I recognized him instantly in the article photo, and the Federal Trade Commission building is directly across from the National Gallery of Art, where my mother and I went.
At first, I couldn’t help but wonder at how unlikely and lucky this rescue had been. Then I wondered if his rescue would ‘take’, if whatever compelled him to leave would be resolved, or if he would be back out on the street again in a month or three. And then after that, I wondered if he was us.
We with ME/CFS are homeless patients with an orphan illness. No medical specialty has claimed us. We have no medical authority to trust. To casual observers, we are obviously lazy whiners; to those paying attention, we are an unsolved mystery. In any case, we are waiting on a steam grate for some random investigator to publicize an image of us that will produce a shock of recognition for the awful disease we know we have.
We are waiting for our image to be recognized, because it’s hard to believe that anything we say makes any difference. I certainly get that feeling from the many meetings I have attended. Certainly nothing the homeless man said in a news interview could have mattered to the journalist, even if she wanted to help him. He was, quite literally, background for a story. But publishing his photograph possibly helped more than anything else she could have done.
It has been said before: 80 percent of success is showing up. So I’m beginning to wonder if all we can do is show up and wait – in other words, the two things we are least able to do. We desperately need help now if we are to recover anything resembling lives for ourselves. We only survive the endless waiting by NOT showing up – by skipping out on work, family duties and events, and virtually every aspect of public life.
It is very, very hard for most of us to show up and be seen: By doctors who don’t get it. By disability adjudicators who don’t believe us. By government officials with no sympathy. We meet cynical contempt everywhere, over and over again. Yet I’m becoming convinced that being seen, like formerly homeless Mr. Simmons was seen online, is the only hope for us, the only effective thing we can do. We can speak all we wish, to demand attention and more research, and we have at least partly succeeded here. However our words are powerless to influence the medical ‘facts’, as the licensed fact-makers see them. To the doctors and researchers, we can only mutely present ourselves for observation.