It was in the winter of 1986 when I had my first MS symptom. It was peculiar and concerning that my vision was blurry in one place (as if someone had smeared Vaseline on an area of an eyeglass lense). I would find out later that it was optic neuritis, a common first symptom of multiple sclerosis.
I went to the doctor and, after hours of waiting and examination, heard the words “I’m pretty sure you have MS”. After that, I had testing done and saw a neurologist; who joined in the suspicion of MS, but was unable to diagnose it at the time.
My vision slowly returned to normal in the following weeks, so my visual disturbance was temporary. MS did not re-visit me for many years; but the disturbing words “I’m pretty sure you have MS” found a permanent place in the fear section of my memory.
A couple of years later, we had moved across the country and bought a house, only a few hours from our families. My father was sharing his carpentry skills during some weekends to make home repairs and improvements for us. I appreciated his skill and that he came to help us. I enjoyed the time with him and watching him work, while trying to keep my two-year old out of the way.
We had many conversations during the times he was fixing things. One weekend, he was working on a loose screen door. As he sat on the floor, screwdriver in hand, I stood and watched his expert eyes and hands finding the problem and then finding the best solution. As he worked and I watched, we exchanged glances and words.
He shared that he had recently attended a high school reunion. He told me about a friend of his who had MS and had come to the reunion in a wheelchair. He sadly told about seeing his friend in such a weakened and crippled state, the conversation they had, and the words his friend said to him while shaking his head back and forth …”this is no way to live, Jim. This is no way to live”.
I stood there, absorbing his words. I kept watching him work with the screwdriver. I stared at his sad face, then at the door, then back at the screwdriver,….. and I didn’t know what to say, so I said nothing.
I knew I had MS, but my Dad didn’t know that. I had never told him. And I didn’t tell him then because I thought it would be too difficult for him to hear. I couldn’t think of a good reason to tell him. My MS had been quiet, so I was too.
Dad died about a year after that visit. I had never told him that I had MS. Dad never saw me walk funny, or use a walker, or a scooter, or a whompin’ big wheelchair. Dad never realized the loss I would experience, never saw me in pain, or knew about the guilt I would feel. And he never knew the impact that those words had on me.
The words Dad’s friend said to him, and then Dad said to me, lived in the fear section of my memory next to the words “I’m pretty sure you have MS”. The words surfaced many times over the years when I thought about my dad, or my MS, or both.
Something has changed though. I still remember the words, but I‘m not afraid of them anymore. I am now likely at the same place as Dad’s friend was when they met at their high school reunion. MS has now done to me what, years ago, I feared it would do. Like Dad’s friend, I am weakened and crippled and in a wheelchair. I understand how Dad’s friend felt. I don’t, however, agree that this is no way to live.
Because of MS, I cannot do things for my children like my Dad did for me. MS is a sad way to live. Managing doctor appointments, medication, mobility equipment and isolation doesn’t leave much time for other things. MS is a frustrating way to live. A progressive illness requires dealing with loss, coping with grief, and being resourceful enough to find new ways to do things. MS is a challenging way to live. Losing independence and dealing with isolation takes adjusting. MS is a difficult way to live.
Living with MS at this stage of progression is sad and frustrating and challenging and difficult. It is, however, the way I have been given to live and is my only option. It isn’t no way to live as Dad’s friend said – it is a way to live. There are better ways to live, but there are worse ways too. Life, regardless of its circumstances, is precious. Long ago, I read this sentence: “Do what you can with what you have in the time you’re allotted.” That’s how I’m trying to live.
If Dad were here today, I would tell him “This is the way I have to live, Dad. Life with MS is difficult, but it’s the way I have been given to live”. And I imagine my Dad would have the same compassion for me that he had for his friend…and more.