Bedridden with MS to Death of Professor

When I moved to the assisted living/retirement home almost 3 years ago, I immediately sought out others with my reason for being here: multiple sclerosis. There was one other woman, in her sixties and I was told she was "bedridden."

Bedridden. That word always shook me and it is, I think, what all humans fear---that one day we will be bedridden and that will be the end personified. Well, I had to meet her. I had heard she was once a university English professor of great acclaim with much love and respect from students along with peers.

First I met with her caregiver. They had been a team for over a decade. The Professor was told she had just weeks to live, that was years ago. "Her will to live is so inspiring," said her caregiver.
The Prof. agreed to meet with me. I hedged my bet with the fact that I am a published author. I took along the book for her and signed it.

Her room was small and crowded, with the bed taking center stage. She had a pet canary. In front of her was a balcony and window. (I worried about the heat, but she had an air-conditioner.) Her caregiver stayed with her during the day and at night she was in "lock down," with door locked, all alone, only the pull cord from the building security to aide her in a crisis. That seemed so sad to me. But she seemed so happy.

We spoke, the caregiver trying to help her, until I we were alone, so the Prof. could speak to me in private, which she seemed to like. Her words came slowly, and breathing easily was impossible. She told me funny stories about her bird. I told her funny stories about the bird I once had. We talked about our MS, how much she missed the university life and how rarely she got visitors. On her wall were a few, poorly trimmed photos of her family. They didn't visit much, she told me.

It was difficult for her to keep her head up and her hands were both completely curled. If you cut away, trimmed neatly aside, all those obstacles to physical normalcy, you could find a well-spoken, intelligent, upbeat woman. I wish I had visited her more, but she was often , "not feeling well." She never left her room. Doctors and dentists came to her.

A few weeks ago she was rushed to the hospital and died within days. What did she die from? I'm sure her obit read "MS." I never got to know her well, but I hope she had lots of physical therapy in spite of a doctor saying, "Will be dead soon." I hope she had lots of lung/breathing exercises. I hope her family loved her in spite of MS and showed her as much love as they could. I hope her canary sang sweetly every morning while she waited on her caregiver. The love between them was real and helped fill the small room.

MS is so misunderstood. And those of us who live with it are too often written off. Even Issac Asimov once wrote that after diagnosis, people with MS can expect to live five years. THAT was the first thing I read about MS, after I was diagnosed. We are often told to "fight MS," I suggest that we must also fight doctors who sign our death certificates so soon that our family and we see no reason to keep up the job of working on getting BETTER.

"The canary sang so cheerfully, so full of life that with each note she was lifted upwards, eager to live on. And in the dark of night, if she cried, her canary chirped as if to reaffirm that life was waiting for another day to begin." -Diane J Standiford