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By Mary Clark

 

 

I want to respond from my own experience and focus on hope and on making the most of our strengths. I know that by doing this I run the risk of looking through rose-colored glasses and of minimizing the agony of our limitations.

I don't want to do that. I'm a big proponent of looking our limits square in the face and of making space in our lives to grieve, over and over again, our ongoing losses in order to free ourselves up to be truly alive.

 

That said, here are some hopeful thoughts from my own experience (next month will be 31 years since I first got sick).

 

It's been important for me to try to let go of the traditional idea of "dating." I was single when I got sick and since then I have married twice and been in a couple other serious relationships. With both of my husbands we became friends before we began to be romantically involved.

It's been challenging to make and maintain friendships in general but I do my best. . . keeping an open heart (when I'm not terrified of rejection) and trying to be creative in working around my limitations.

 

My second husband and I have known each other for a long time but with infrequent contact. One year he answered my Christmas card with a note about his new address, he and his wife had split up a year before, and giving me his email address. It was not lost on me that this was the first time we were both single at the same time :-).

 

Over the next 6 months we emailed each other from time to time. It seemed a little flirty to me but nothing I could really put my finger on. I tried not to think about it too much. Then he suggested he stop by (we lived about 45 minutes apart) to show me photos of his recent hiking trip with his son. I felt like a teenager--was this a date? just two friends getting together? My head was spinning.

 

He called to reschedule it (definitely not a date), then an email note from him that seemed flirty (definitely a date), then he was 45 minutes late (definitely not a date), then his arm leaned against mine as we looked at the photos (definitely a date), then he didn't call for a week (definitely not a date).

 

Slowly we discovered we were more than just friends and slowly we've built this marriage. It doesn't look like the romanticized ideal of a marriage because of my illnesses, but none of my friends' marriages look like the ideal either. We build our relationships from scratch, sometimes in spite of feeling we fall short of what we're "supposed" to be.

 

Especially for those of us with serious disabilities I think it's important to embrace our sexuality, no matter how limited, and to see our selves as sensual beings whether it's lovemaking or just feeling a gentle breeze across our cheek.

There can be a certain increased sensitivity that comes with the fact that our illnesses have forced us to be quiet and still and introspective at times. We have lost some of our energeticness but, perhaps, gained some depth.

 

I think that that same stillness can be a source of strength in our emotional relationship to a partner. Perhaps we have more time to reflect on what we see and hear from our partner and, just maybe, are able to provide them with a sense of being truly known and seen.

(This is an ironic thing for me to be writing this morning. My husband and I had a big argument last night and I'm sure he's feeling anything but "known and seen" at the moment. But I digress.)

 

After each break-up I have believed that I would always be single. And there certainly are some pluses to being single--especially around pacing and emotional stability. But here I am, late in life, madly in love.