My mother was diagnosed with MS when I was five years old. She endured a long and devastating decline during a time when there were no treatments. Disease awareness was not on anyone’s agenda, and I can’t recall more than a few instances when I told someone my mother had MS. “She’s sick,” I would say. Using the name of disease was pointless, and would bring one of three responses: a look of horror, a look of pity, or a look of “I have no idea what that is.”
It was only when I was 17, shortly after my mother died, that I began to think about others living with MS. I wanted to know them. I didn’t know if the need arose because I was reaching adulthood and starting to see the world in a different way, or if I simply missed my mother and wanted to be with others who were like her. Or maybe I just wanted comfort from people who understood what MS was all about. I contacted the local MS Society and was invited to participate in a “family day” event where parents with MS would bring their children to a special day of fun-filled activities and connecting with others in the same boat.
I arrived early to the family day and helped decorate the room with balloons. I felt good and excited, but as the room began to fill, I grew nervous. Parents, some with walkers, some in wheelchairs, and some with tremors, struggled to make their way in. They all reminded me of my mother at different stages of her decline.
The children arrived energetic and eager to start the program. The group leader, the children, and I sat on the floor in a circle. The parents sat behind us. My job was to “connect” to the children, talk to them about living with a parent who has MS. I was supposed to be inspiring and understanding. I was supposed to give them hope. Instead, I froze. I hadn’t realized until that moment when the circle of children were all before me, that I had nothing positive to say. It wasn’t all going to be okay. When I had to introduce myself, and explain my connection to MS, all I could think about was the truth: My mother was dead and MS had killed her, slowly and cruelly.
I could not say this to the circle of children around me, and though I distinctly recall my panic in that moment, I don’t remember what I said. I know I said something, but whatever it was, I’ve blocked it out. Somehow I completed my job for the day – to play with the kids. I got out of there as fast as I could and never went back.
Today, there are treatments for people with MS. There is hope. And for people living with MS, and practically every other illness, there are support groups both online and off. There is MS advocacy, too, but to be honest, I don’t know very much about it. Until I looked it up right now, I had no idea that March is MS Awareness and Education Month. And if I didn’t run an online diabetes magazine I’m not sure I’d know that November is Diabetes Awareness Month.
I’m certainly not against Diabetes Awareness Month, but it doesn’t particularly move me. We who live with diabetes are always preoccupied with our blood sugar levels and food intake. Being aware is part of survival. My gut tells me, however, that because diabetes lacks the obvious urgency of cancer and many other diseases and conditions, no matter how omnipresent it is, diabetes won’t garner anyone’s deepest attention. I often hear the diabetes/breast cancer comparisons. (Why can’t we be more like breast cancer? Breast cancer has a more recognized symbol, raises more money, gets sympathy while we get called fat and lazy.) Rather than suffer awareness-envy and compare one disease to another, though, I prefer to think about the common thread that runs through so many of us with an illness or disability – vulnerability.
For those of us with insulin-dependent diabetes, no matter how strong we are, no matter how fast, or how smart, without insulin we are dead. This vulnerability unnerves me.
I don’t feel better or worse about having diabetes because, collectively, we’re making a lot of noise this month, and I don’t know if we’re getting through to anyone who doesn’t already know. But the more I think about it, the more I begin to understand what these awareness months are really about. The parties, walks, trying to educate others about us, or the lighting up of monuments in blue – those things are all misleading. These disease months aren’t really even about asking for improved care and better treatments. Diabetes Awareness Month and the other months like it are actually all calling for the very same thing: compassion.
Life with diabetes isn’t easy. Sometimes, we just need the world to acknowledge this fact. In hindsight, I can say that when I went to MS family day all those years ago, I went there to acknowledge the difficulties of those families, and despite my fear and awkwardness, I hope that got through to someone.
I can accept that improvements in care come in increments and that cure is still a long ways away, but compassion isn’t something we should have to ask and wait for. With a little more of it going around, “awareness” wouldn’t need to be a thing we designate 30 days for. It would be there always, for everyone. The way to get there, perhaps, is to put our own discomforts aside sometimes and pay attention to others. In this way we learn about each other and gain collective strength. In this way we could all become better.
Thank you for speaking, I have never felt supported or that others have any idea how hard it is living with IDDM for 42years. altho…it has instilled empathy in my heart for others.
Thanks very much for your touching description of the trials you faced in coping with your mother’s fatal illness. You concluded your blog entry with a note about the importance for all of us of demonstrating compassion, with which I strongly agree.
I came to your website after reading your excellent Op-ed in the NY Times. I see that you are not only compassionate but also brave.
My best wishes to you and your family.