How do you deal with a future that you know for sure is going to get worse? That was the question on my mind when I met Jennifer, a mother of two who has a rare neuromuscular disease called hereditary inclusion body myopathy (HIBM). I was introduced to Jennifer (she asked me not to use her last name) by my friend Sharon Glaser, co-founder of Genetestnow.com, an awareness and educational initiative that TRIBE Media Corp., parent company of the Jewish Journal, has helped create to promote the importance of screening for genetic diseases.
Jennifer’s condition, also known as GNE myopathy, attacks muscle function and worsens over time. She was already seated when I met her at Pat’s for lunch, so I couldn’t see that she has difficulty walking. All I saw was an elegant woman in her late-30s with a delicate, soulful face and an easy smile.
Do you know that feeling when you meet someone and immediately click? Jennifer and I got silly within minutes. It was as if she were my long-lost buddy from high school. After about 90 minutes of banter and laughter, interrupted by occasional insights about life, I realized I had done a terrible job of discussing how she handles her disease. I’m not sure it even came up.
Her condition became noticeable only when we got up to leave and I noticed a slight awkwardness in her walk. Before we said goodbye, she told me how excited she was about attending a medical conference on HIBM the following week in Berlin.
On one of her blog posts from the conference (she blogs on livingwithhibm.com), she wrote about what she calls “meant to be moments”:
“I often, in the context of this disease, have a lot of ‘meant to be moments.’ I imagine we all do, as one of our many coping tools. For example, the fact that I had been working out since I was 14 years old was ‘meant to be,’ since it put my body in the best possible shape before beginning its premature decline (sorry, just keeping it real).”
She brought up a moment at the conference that felt almost too real. She had noticed a Japanese woman named Yuriko in an electric wheelchair whose physical “decline” was much further along than Jennifer’s.
“Throughout the day,” Jennifer wrote, “I couldn’t help but be distracted. I watched how [Yuriko’s] husband removed her scarf for her when she got warm. I observed how he brought a glass of water to her lips when she was thirsty. … I looked at her and wondered how she looked so beautiful, so neatly dressed with her hair perfectly tied up in a pony tail. I wondered how much time went into her simple act of getting dressed.”
The hardest moment came during dinner: “I went to sit at Yuriko’s table for a bit to chat as best we could given the language barrier. We enjoyed each other. We shared our experiences as mothers, as wives and as patients. But when the food arrived, I chose to go back to my seat, because I wasn’t ready to watch her husband cut up her veal schnitzel for her and then feed it to her. I may be strong. But not that strong.”
When I met up with Jennifer again after her return from Berlin, I was determined to discuss her condition. By now, I had read all her blog posts and I was armed with a notepad and plenty of questions.
This time, we met in her office in Westwood. Jennifer is a psychiatrist, so I had the benefit of a comfortable couch. We spent the first 10 minutes discussing something I had just heard on a jazz station on the way to her office. A musician was talking about how he had learned so much from the great Miles Davis — but that Davis’ lessons were always “indirect.” He never spelled things out. He gave you clues, asked questions, all so that you would learn the lessons for yourself.
Jennifer seemed to channel her inner Miles Davis during the rest of our meeting. She asked questions, and I tried to give answers. Before I knew it, she had turned the tables on me: Instead of talking about her, we ended up talking about my own life and my own problems, and I confess, it felt pretty good. But I never did get to ask my original question: How do you deal with a future that you know for sure is going to get worse?
So, as I drove away and reflected on what had happened, it dawned on me that maybe I had to figure out the answer for myself. What I came away with is that no matter how difficult Jennifer’s condition gets, what helps her cope is the knowledge that she still has the power to help other people.
I know, because I’m one of the people she helped.
David Suissa is president of TRIBE Media Corp./Jewish Journal and can be reached at firstname.lastname@example.org.