LeeAnne’s MS Home Adaptation Adventure
Two years after being diagnosed with chronic/progressive MS we were able to buy our first home. At the time I was more mobile. I was able to be more involved with the whole process.
I distinctly remember walking through the house for the first time. MS made walking difficult but I was still able to do it. The difficulty was multiplied by the fact that there was so much food ground into the carpet that it stuck to my foot as I walked. It actually lifted with each step.
As bad as it was, we knew that we had no choice but to make an offer. I was a stay-at-home mom. I hadn’t contributed financially for years. Before we finalized the sale we had a home inspector check the house. The home inspector labeled it “non-habitable.”
My husband and friends worked very hard to make it safe and usable for our young family. We actually had a working heater! It was a small 50+ year old home, but we were happy to have it. It seemed perfect for us at that time.
For a few years I was able to get around slowly and carefully. I clearly remember one day walking cross the living room from the hall door without touching anything, on my way to sit on the couch. I didn’t even think about it. I realized what I was doing when I was about 3 feet from the couch. I slowly sank to my knees. I looked around and saw my husband looking at me, wide-eyed, in amazement and grinning from ear to ear. That is the only time I have ever done that.
During those early years I was able to go into the garage and do the laundry, cook meals, clean the kitchen, help the kids with homework and even drive them three blocks to school. As my reaction times slowed, I decided that for the safety of my children and other drivers the time had come to give up driving. It was an easy decision. My husband had a job teaching in a private school. Our children transferred into that school. He was their transportation. I was left home alone.
By the time our son was a junior in high school he was a gifted clarinetist; he was accepted to play in the North American Wind Ensemble. He had recorded and sent an audition tape to New York City. They only accepted 76 college and high school students nationwide. He’d had only four months of lessons. I was home alone when I got the call from New York. I remember my legs burning with excitement. It almost took my breath away. Our 17-year-old son had been invited to play at Carnegie Hall!
After a few weeks of preparation, my family left for the exciting trip. Due to the limitations of my illness I wasn’t able to go. I remember crying after they left. I was disappointed. I was also petrified at the thought of being alone for four days. With the help of my parents and a few friends, I was fine, buy it was a very slow, frightening few days.
They made it home safely and I got to experience their trip secondhand. They told me about walking by the World Trade Center. They did that in the May before 9/11. Just hearing about it hit a little too close to home for me. Once again my legs burned. My family could have been involved if the timing had been different.