Balance of Superpowers

Yesterday, my MS flared up out of nowhere.  That’s how I saw it, anyway, when out of the blue my legs just sank from beneath me. What an insult! I kept saying,”This is so surprising.”

My husband was unflappable. Finally he said, “This is not a surprise. You have MS.”

You would think, twenty three years after the diagnosis,  I wouldn’t need to be told I have multiple sclerosis. But it does still surprise me. I haven’t had my legs drop out from beneath me in months. I’d kind of hoped maybe that symptom would remain in the past.

While I depend utterly on my husband’s acceptance of my MS, I depend equally on my own stubborn denial to ensure I live my fullest life. Denial may be my greatest superpower. Acceptance may be his.

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It’s a Small World

refugeedimer

While at the refugee potluck, my husband and I met two guys from the Congo who like to play soccer. One Syrian mom and all six of her children. A Cincinnati lady who specializes in refugee stress reduction through drumming and art. A professor who happened to have taught at Macalester College, our alma mater. “Small world,” we said. Two young doctors in town for a conference on pediatric medicine, from Toronto and Long Island, respectively, who had wound up here by searching the net to see what cool things Cincinnatians might do on a Thursday night. Turns out, the doctors specialized in  auto-immune disease in children. When I mentioned I had MS, the Long Island doc told me her best friend was newly diagnosed with the disease. “Small world.”

For years when I’d meet someone who told me they had a loved one with MS,  I used to ask, “How is your best friend/uncle/brother/mother doing?” I don’t know why it took me  a long time to realize that I would never get an uplifting answer to this question. But it did, it took me years to stop expecting something more hopeful than,  “pretty bad, worse than you, confined to bed, dead.”

Recently I’ve started trying out a new go-to answer. I’ve learned say, super solemnly, “I am so sorry.” And damn, not one person yet has said, “Oh, it’s not that bad.”

The young doc said her friend was doing everything right: diet, exercise, meditation. And her friend was pretty depressed. No matter how virtuous she was, the MS did not go away. I might have said what I always want to hear, “Oh, I’ve had MS for over twenty five years, and I’ve managed. It’s not that bad.” But underneath, I had to agree. I, too, was doing everything right, I had love, good food, swimming, pilates, yoga. And I too, was frustrated that my MS has not gone away. MS is bad. It’s just bad. I didn’t give the doc my card, or tell her about my blog. I didn’t feel like I had any super inspirational advice for her friend.

And yet. We were sitting in this vast room, full of happy people of all ages, from all over the world, who were here because of an idea I’d had. And that’s all  I had contributed—an idea (plus a tub of broiled vegetables plus a salad)—the Clifton Cultural Arts Center and Catholic Charities, and every single person in that room, had done all the rest. We followed the very easy tried and true guidelines set up by refugeeswelcometodinner.com. Anyone can follow them. Even a person who still can’t mangage to outsmart MS.  You, too, can gather a bunch of random people together, and find you share the same pleasures. And the same struggles. It’s a small world.