March 18, 2010
Chronic illness takes a person on a lonely journey. No matter how lovingly a family surrounds and embraces a seriously sick person, many of us feel alone. Illness can be isolating, and all too frequently, that loneliness is self-imposed, as we withdraw from those closest to us, not wanting to be a burden to them.
Perhaps that’s why many of us feel drawn toward others who share our conditions. We join affinity groups, single illness advocacy or service organizations. For some of us, these groups become our second family—brothers and sisters who listen, offer advice, and are there to help in any way they can. We do not have to go on and on about our conditions to our comrades. Without saying a word, we know they “get it,” and sometimes, they’re the only ones who do. This becomes a special comfort zone, a safe place where we can just be with others like ourselves.
Recently, I spoke at Harvard Medical School as part of a series of workshops called Life with Long Term Care. I talked about what it was like to live with multiple sclerosis. The room was filled with doctors and soon-to-be docs. Then came invited guests, many on scooters and canes, some in wheelchairs. These were people in search of each other. They spoke more than the docs and medical students in response to my remarks. And they did so in open, intimate terms, almost as if there was no one else in the room. The bonds between these folks are unselfconscious and easy.
Kayla Rachlin Small, writing in the New York Times, tells the story of meeting and being attracted to someone like herself, a young man with cystic fibrosis. The couple sat at a bar, sitting closer to each other than common sense said they should. Always before, she would keep her distance, ever-conscious of the risk of passing infections to each other.
“I reached for Thomas’s glass and said, ‘Let me have a sip,’” she recalls. “He did nothing to stop me. The liquid disappeared, and with it went the infection-control protocol that had been drilled into us for years.”
Thomas and Kayla were carrying bacteria harmless to the general population but catastrophic if transmitted to each other. They knew the score. What was that dangerous flirtation all about? “I ache for my vision of quarantine,” Small writes, “an apartment with others like me that has a medicine room instead of a medicine cabinet. Since I was a pre-teenager, I’ve mythologized this community.” Their subsequent intimacy punctuated their defiance and need to connect.
Searching for community, wanting and needing a strong bond, is precisely what that dangerous liaison was all about. It was the burning desire to be with one’s own, to feel normal, just like anybody else. That is why those with serious conditions seek each other out. Maybe we feel less like freaks. Perhaps we simply do not want to travel through perilous territory with anyone who does not understand.
“I believe it is a recognition of the isolation that sickness brings,” says Fred Fisher, President and CEO of the ALS Association, Greater Los Angeles Chapter. “Patients with ALS are told, ‘You are going to die. Go home and get your affairs in order.’ They want to share that fear.”
One woman with ALS wrote to the ALS Association about the power of PALS, Persons with ALS: “You are the only ones who give us a voice and something we can do with our lives. We have a new sense of purpose, and with that, there is hope.”
In the end, that single word—hope—may explain what community is all about. People reassure, even inspire, each other. In the lives of others, we see our own. And we find acceptance. We are not damaged goods to each other, only human beings in pain.