Learning to Accept Multiple Sclerosis
How do we accept that our lives are out of our control? How do we accept that multiple sclerosis is going to be calling some unforgivable shots?
MS is an incredibly insulting disease. It waltzes into your home and takes any number of your most precious things and crushes them right in front of you without any warning or apology.
My MS relapses always seem to occur while I am sleeping so they can reveal themselves as soon as I wake; sitting there proudly, mocking me, and no one else can see or feel what this latest relapse has done. I am alone in the experience, and I have to go to bed every night knowing that the next morning I could wake up paralyzed or blind.
I was not, am not, ever going to be the person who accepts this disease quietly without complaint. I am loud and I am angry. I fought its existence in the beginning. I would not, could not accept that this disease was actually a part of me that I could not remove. It was just so alien.
I knew nothing about this kind of torture and I fully believed, as I do today, that it has absolutely no business coming into my life and stealing from me EVERYTHING that I have built, everything that I have earned. The trouble is though; I can’t get rid of this disease. It is my body that is doing this to me. My immune system is working too hard and it is out of my control. I hate being helpless to this fate.
Meeting a Hero
In the beginning, I was quiet and terrified. I was so alone. My husband loved me so much, but his ability to speak to me about my MS was about as deep as my shallow understanding of the disease itself. We were both trapped and unable to reach each other. The two of us would lie in bed at night, without much to say.
Around the same time that I was diagnosed with MS, a man named Denny was diagnosed with ALS. Denny was an old friend of one of my husband’s coworkers. My husband, Kier, works in technology as a career, but is also an incredible photographer. Denny wanted to document his progression with ALS so he could share his experience with the public, and he chose my husband to be his photographer. He didn’t want to hire someone who would exploit his disease and he believed that Kier would be sensitive to his needs, in large part because he knew of my situation — MS and ALS are similar diseases.
I believe Kier felt good about meeting with Denny and diving into a project that could provoke strength and goodness within a tragedy. Denny was a character! The day I met him, he was so full of life and insistent on meeting me. I was so removed that I had separated myself from the large group of people and I was sitting at a picnic table across the park from Denny. He beckoned me from afar and insisted that I stand in the group photo with him and his friends, marking the beginning of his journey with ALS and the end of his Harley days.
That day was his last ride. His hand had already begun to decay and he would no longer be able to control his bike safely. My hands were still numb from my first large relapse. We were two strangers missing the strength of our hands, standing within a group of people who would never understand our similar struggles.
I looked at Denny with such deference. He was going to die and yet he was incredibly loud and funny. He had a strong and raspy laugh. Denny became one of my biggest heroes in life. His road with his disease was going to be shorter and more predictable than mine would be with MS. He had to live every day knowing that he would never watch his grandchildren grow up.
Next page: standing on the edge of a well, and being grateful.