Twenty two years ago I went to visit my Aunt Marianne in a nursing home who had MS. There she was in her forties, confined to a wheelchair and barely able to speak. Her words were delivered in a running sentence, stuck together like molasses and unidentifiable. I was eight years old and in short, I was terrified. Admittedly it made me so uncomfortable that I remember my body breaking into a cold sweat as my little brain tried to wrap around what could have happened to this woman. It was hard to look at her directly. I wondered why my grandmother, who also had MS, could still walk and talk. How could this be the same disease? This comparison was actually an important first lesson in MS, each person travels their own path with the disease. It truly never occurred to me that the thing that caused me so much fear as a child would become my own reality not many years later.
As I was beginning to feel the early effects of the disease, my Aunt signed a form with an X to end her life. They cut off her feeding tube and began the painful process of letting her body starve until she passed. Nine days. That it how long it took for her to die. As my MS continued to progress I began to see others become nervous around me just as I had around Marianne. There are not words to describe how much guilt and pain I felt around how I reacted to her. Yes, I was only a child. Yes, I didn't understand what she was going through. However it continued to really bother me. I had haunting dreams of her and desperately wanted to go back in time and hug her, whisper in her ear that I understood and that I knew she was "still in there".
As time has gone by, I have obviously been forced to come to terms with my fear of MS. I am certain that Marianne understood I was just a child, just as I understand when children squirm around me. Most importantly I have been able to refer to the feelings I had as a child about MS in dealing with my son. I remind him that no matter what strange things my body does, I am still the same person on the inside. He is learning very young that although our bodies are temporary, our souls are eternal. Marianne's soul certainly lives on through me and I draw strength from her life everyday.
What and incredible experience you have had being exposed to MS from a very young age. When I was first diagnosed, we had a friend of the family who had been diagnosed a year prior. His course was progressive degenerative from the start. It was so hard for me to separate my uncertain future from what his handed him. And as his health became increasingly compromised, it fueled my fears of what I might become. Having had MS for over 21years I'm more confident in being able to manage whatever this disease hands me, and my optimistic nature has me confident that I will never know what he does. This past Passover I sat next to him at a seder and we spoke in ways we hadn't been able to prior.. our visits had been very brief in the past. And although his movement is limited and he struggles with pain and life from a chair, he is still the funny guy he was when I was a kid. He is still him.
I'm most intrigued about your perseverance with all that you have had to endure prior to your diagnosis. Of course you have seen for yourself the variable nature of this disease. And your frank conversation with your son is a testament to your strengths.
Quite frankly I could go on and on about how I am moved by your writing.... but I'll stop here and look forward to our next conversation and your next post!
~Amy