Marrying the Unknown

I invite you to click comments at the end of this piece, and contribute your thoughts.

When I was in high school I crewed one summer on a Lightning class sailboat in Lake Decatur for a neighbor, one of the angriest men I ever met.

We practiced evenings during the week and raced on Saturdays. We waited at one end of the lake, watched the smoke from the gun and then hear the shot that started the race. I loved skimming across the water of the lake. When the wind caught the sails, Hawley sat at the rudder, held the mainsail line, and managed the centerboard which kept the boat from sliding sideways across the lake. He must have had three hands.

I scurried to do his bidding. I was thin then, and young and agile. With the centerboard deep in the water and the wind pushing against the sails, the boat sometimes lay almost perpendicular to the water. And I sat on the high side, my feet wedged so I wouldn’t fall out, and leaned back as far as I could to keep the boat from going completely over. At other times I managed the jib. It was glorious.

Hawley was the first person who ever swore at me, and he berated me on a consistent, regular basis. I became “too busy” the next summer to crew for him.

And that is probably a tragedy because I didn’t understand the source of his anger. I’m not sure I do now, but I have a better idea. I was the immediate target, but Hawley, I suspect, felt life conspired against him to make him miserable. His only joy was that sailboat, flying across the water, taking him out of his life for a little while.

Hawley and his wife had no children. He was ex-military, and I remember he kept a bottle in the garage where he worked on his boat during the winter.

His wife, whose name I can’t remember, had multiple sclerosis. What I do remember about her is her brittle movements, her unsteadiness, her eventual cane, her gradual decline. And the explosive screaming that came from their house more and more often until they moved. She went to a nursing home or died, I’m not sure which, and he sold the house.

MS manifests itself usually between the late twenties and forty in most people, and Hawley and his wife were long married before she became ill. The drugs available now weren’t available 50 years ago.

A friend’s wife has MS and he handles the disease much differently. Karen takes very good care of herself, and has found help in meditation and diet as well as medication. But she is now pretty much incapacitated and wheel-chair bound.

Stan has the means to hire care for her, and he treats her with kindness. But he also gets away and has time for himself. He travels to visit old friends abroad and occasionally travels east to visit us in the Chicago burbs. While he was here several years ago, he asked our permission to have a girlfriend. He’s still the sunny side of fifty, after all.

We couldn’t give Stan that permission. But we couldn’t deny it, either. It’s not up to us. No doubt he’s found comfort in another woman’s arms, and I can’t hold it against him. Karen’s mind still works, but her body has conspired to imprison her.

Would either Hawley or Stan have married their wives if they had known about the disease? I can’t answer for either of them. And I don’t know that I would have married Ann if I had known she had a chronic debilitating disease. She doesn’t, thank God. Stan and Hawley stayed with their wives in sickness and their health. That’s the honorable, manly, courageous way to act.

But the toll it has taken on their lives cannot be dismissed.

Now, a dear friend has had an “episode” that may signal MS. It is a difficult disease to diagnose, and there are many symptoms that mimic other conditions. (Even Dr. House would have difficulty. Of course, he always almost kills his patients before he saves them. I’m not sure I’d want him to be my diagnostician.) Diagnosis of MS involves two episodes at least a month apart, MRI’s, eleventy other tests, and waiting. And at this point our friend hasn’t had a second episode.

We hope desperately that our friend’s first episode was something else. Like stress. Or exhaustion, or – we don’t know what else. And in the meanwhile there is little we can do.

Except pray for her. Please join us.