This is a piece that I was asked to write for today, the International Day of Person’s with Disabilities. It was published in a newsletter at work and while it was nerve wracking to put myself out there like that, the response that I got from the article made it all worth it. They asked me to write on the challenges that I face living with multiple sclerosis and cerebral palsy.
I hope you enjoy it!
At the beginning of my journey with Multiple Sclerosis, I had to relearn to do a lot of things I had done before without any thought.
When I woke the ms on the morning of Dec. 31, 2012, I had no motor control, vertigo and balance issues. I wasn’t able to remain upright and had to support myself with the walls and doorways in my apartment. I thought that everything would get better, that my body would miraculously heal itself, but as the days passed, I realized that I was not getting better and that I would have to find a new way to get around, especially if I wanted to go back to work. I had no idea what was wrong with me, but I was determined to find a way to deal with it.
I was able to obtain a cane and with it, I learned to walk again. It was difficult work as I had to retrain my legs and feet to take steps and to remain upright without falling over. It was slow going at first, but over time I was able to work out a rhythm and figure out how to walk in a new way. I took taxis instead of busses and took my time getting to where I needed to go. Sometimes, I was too hard on myself and pushed myself beyond what I could do, but it was all part of the new way of doing things.
I was initially diagnosed with labyrinthitis, an infliction of the inner ear that causes vertigo and balance issues. The doctors told me that everything would go back to normal in two weeks. This didn’t happen and I continued to get worse.
When I returned to work, I tried to carry on as if everything was as it had been, but my body eventually had other ideas. I lost the ability to type. I’ve been a writer for as long as I can remember and I had learned to type at a keyboard when I was in my teens. I could normally type without looking at the keyboard. Now, I couldn’t hit the right keys. My brain knew which direction I wanted my fingers to go in, but I couldn’t make them work. The messages from my brain would not get through to my fingers.
I had to retrain myself. I normally wrote several thousand words during a weekend without thought. Now, I had to work for a few hours to type out five or ten words. Instead of writing a novel, I would stitch those words together to make a poem, one word at a time. Each word I was able to type felt like a personal victory. The mountain may have been small, but I climbed it one words at a time.
Eventually, my body rebelled once more. One morning, I arrived at work and I wasn’t able to speak. I resorted to communicating with hand gestures and the odd word that I could actually get out past my stubborn lips. Once again, like typing, my brain knew the words I wanted to say but my mouth could not shape them. To say that I was terrified was an understatement.
However, that’s what made my mother make me go to the hospital. Thankfully, there was a neurologist on staff in the emergency room that day. He took one look at me and listened when I told him about the symptoms, I was having which included numbness, difficulty walking, speaking and swallowing. He said that it was likely multiple sclerosis, but we would have to run tests to be sure. In the meantime, I had to learn to speak more slowly and carefully form my words until the issue passed. This took some time and I still had to force my words out, so I chose them carefully.
When I was eventually diagnosed with relapse and remitting multiple sclerosis several months later, it came as a relief. The enemy that I was fighting now had a name and I knew what I would have to do. Though it threw several more obstacles in my path, and continues to do so, I am grateful for the life I have.
The multiple sclerosis has taught me what to truly be thankful and grateful for.