There are eight of us in the room. Five have Huntington’s. Four of them are my patients. For this hour of the annual Huntington’s conference, we are here to talk about what it is like to live with Huntington’s disease. Mrs. Abrams, a social worker, welcomes us in to the room.
We arrange ourselves around the circle of chairs. Next to me is Sharon, a slight woman in her 30s, her large glasses askew, accompanied by her service dog, a black Labrador named Sherlock. Earlier in the conference, Sharon demonstrated the ways Sherlock can help her: he brings the phone, hands her wallet to a clerk, carries a shopping bag, and changes the attention of strangers from fear and pity to friendly curiosity, although Sharon didn’t talk about that. The dog shifts quietly on the floor beside her in his work harness, occasionally turning his head to look at her.
To Sharon’s right are Judith and her husband. Judith is in her 40s, also thin. She can no longer be understood, although earlier in the morning she had come up to me and taken my hands, attempting to speak. She holds herself rigid, back slightly arched, movements jerky and unsteady. Her husband guided her in to the room, one hand supporting her back as they walked arm in arm. William is on Judith’s other side. An older man in his early 70s, he sits upright, a cane clasped between his knees, his pants neatly pressed and his thinning hair slicked back. Mrs. Abrams sits between William and Tracy, a plump and slightly disheveled woman in her late 20s who slumps in her chair. Her plaid shirt is untucked and her dark hair partially obscures her face.
Carol comes in after the others and takes the chair next to me. Catching her breath, she smoothes her hair, turning the sudden choreic movement into a gesture. She looks around, smiling. She is a friendly talkative woman in her 40s, still working as a receptionist. This is the first time I have seen her without her husband. At clinic, he often interrupts her: “Carol, Carol, the doctor doesn’t want to hear all that.”
But I do want to hear it. That is why I am here today.
Sharon breaks the ice, asking who else has Huntington’s, which parent, what siblings. Her words come in sudden bursts punctuated by abrupt pauses. When someone mentions an unaffected brother or sister, there is an appreciative murmur in the room, “That’s good” echoing from the group.
Next to me, Carol says, “I’m not driving now.” That’s good, good not to take chances, everyone agrees. It turns out no one is still driving. Someone says it’s hard. Maybe Sharon.
“You know what sucks?” Sharon says, “getting worse. If I could live the rest of my life like this I could handle it, but it’s getting worse.” She pauses. “I worry that people won’t be able to understand me. The speech therapist thought I was doing OK, but I think my speech is worse.” A long pause. “She told me about a machine I can get if I need it. You push a button and it will talk for you. That’s cool.”
That’s good travels around the room, call and response.
Carol turns to Tracy and introduces herself. Tracy had testing before she showed any symptoms and knew that she had inherited the gene from her father. The last time Tracy was in my office, she had cried for the first time, the changes coming faster than she had thought they would. She and her young husband were exhausted from caring for their two-year-old son. “I knew I would get sick someday,” she had said. “I just didn’t think it would be so soon.”
Tracy looks small and young and afraid in the corner of the room. Her Huntington’s is not yet part of who she is, but stands over her, ready to dismantle her life piece by piece. Mrs. Abrams invites her to tell the group something about herself if she wants. In a very soft voice she talks about what it has been like to stop working, stop driving, not to be able to take her son to day care.
That’s hard, the others respond this time.
Sharon mentions her brother. He has Huntington’s too, but won’t go to the doctor. She says, “My father wouldn’t go to the doctor either. He was a terrible man, with a terrible temper. He set himself on fire because he couldn’t face living with it.”
In the silence that follows, I glance at William. His face betrays no reaction. He has just been discharged from the psychiatric unit where he was admitted, depressed and suicidal. He too has recently given up driving, after being pulled over by the police. “It’s been hard,” is all he said when I spoke to him earlier that morning.
When he was diagnosed six years ago at 65, the neurologist was clearly shocked. She offered him a cane as he left, along with the phone number of a genetic counselor. William had never heard of Huntington’s disease before then. The last time I saw him, he was still going to the gym three days a week and tutoring home bound children. When Mrs. Abrams invites him to tell a little about himself, he talks only about his cane. “I have a cane now,” he says, “I need it to walk.”
Sharon begins talking about her doctors. “I see Dr. Jim,” says Sharon, “he’s nice. I don’t like the others.” Without pausing she continues. “You know what sucks? The research. They tell you that they are going to find a cure. I don’t think they will ever find a cure. That’s what they told my mom when my dad was diagnosed, and she thought that if her kids got it, there’d be a cure. This is what I think about the research,” and she makes a rude gesture. I am startled by her bitterness and think of the logo for one of the research studies. It shows light streaming from a lighthouse, the surrounding darkness only implied.
Judith and her husband haven’t spoken. He breaks their silence. “Doctor, I’d like to ask you a question. I have been thinking about the clinic. I can’t figure out why we should come. Maybe that is why we haven’t been back.” He hesitates, concerned perhaps that he may have given offense.
I consider his question. It is a long drive and the sessions can be exhausting. “It only makes sense to come if you take something back with you that helps,” I reply.
He nods, then says, “I guess I am really asking why you do it. Is it for the research?”
That is a very different question. I hear myself answering, stumbling over the words: “maximize functional independence, effectively manage symptoms ….” And stop. This is not what I want to say. Before I can think further about what it is I do want to say, I hear myself again, the words coming in a rush.
“Huntington’s is a terrible disease. It is overwhelming. No one should have to go through this alone.”
He nods again but doesn’t answer.
Mrs. Abrams offers some closing remarks. The hour is up and it is time to rejoin the others at the conference. The group breaks into pairs, comparing notes, lingering just a bit longer with those who understand in a way the rest of us cannot. There is a jingle from Sherlock’s collar when he stands, supporting Sharon as she sways to her feet. Judith moves toward the dog, her husband’s hand at her elbow. Sherlock’s tail wags as she reaches for him, her words unintelligible, her smile clear.
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