For many of us in the world of MS, our families are the unsung heroes in our lives. While us MSers do our best to act appropriately around others, there are times that our behavior is a little “left of center.”
One time I was sitting in the kitchen with my wife and daughter. My wife asked if I knew when I had to pick up the kids.
“Yes,” I replied. “I have to pick them up on Thursday.” My wife frowned and then corrected me.
“No,” she said. “You have to pick them up on Thursday.”
“That’s what I said!” was my reply. My wife and daughter looked at each other.
“No,” she said. “You said Wednesday.” I didn’t say Wednesday, I thought to myself. Then I turned to my daughter.
“What did I say?” I asked.
“You said Wednesday, Dad.”
Wow, I thought. I would have bet the ranch, the cows and every stalk of corn I owned that I said Thursday.
To further demonstrate the challenges that family and close friends have to deal with when working with us MSers, I submit the following. It is a piece that my daughter wrote for her college application essay. It not only mentions things that are hard for a non-MSer to understand, it also shows how keeping kids involved with the world of an MSer has the ability to help them become stronger people.
My Dad – by Abigail R. Macaluso
My Dad, Dr. Vincent Macaluso, was the alumnus speaker at my middle school graduation. People still talk about his speech three years later. He began by noting that my class never learned about the human brain in science class. This concerned him, since he is a neurologist specializing in multiple sclerosis (MS). In fact, he just published his first book: Multiple Sclerosis from Both Sides of the Desk: Two Views of MS Through One Set of Eyes. You see, he’s had MS for 29 years.
He declared, “Graduands, in the next four minutes I will teach you about the brain. There will be one quiz, one lab, and a final!” So, he taught us about the brain, the mind, and nerves, using posters and diagrams. Our “final” had just one question, a take-home. We had to ask ourselves everyday, “Whom did I help today?”
Standing on stage next to him as he spoke was one of my proudest moments. What an inspiration to see him extol his passions and exhort my classmates to help others. He has instilled in me the hope that no matter what the challenge, I can become a better person. His example has enabled me to grow in unanticipated ways—strength, patience, and compassion. I am the woman I am today because of him.
I will always be proud of my father, but sometimes others don’t understand him as I do because MS impairs his neurocognitive function. I don’t care what others think. Some become afraid when they learn that Dad has MS. They don’t understand what it is and how it affects him. Living with him all these years, has given me insight into MS and I now see that my support helps him manage his life.
We’ve worked together on many projects. He is extremely geeky and creative, with a terrific sense of humor. We once went to Michael’s craft store for materials to make a model triceratops for my kindergarten project. We also created a 3D model of a Basophil Granulocyte (white blood cell), which my science teacher still keeps in his classroom. I also helped him display his brain diagrams that graduation day. Sometimes it’s hard for Dad to communicate his thoughts, so I worked with him to get the order of those illustrations correct. Working with him over the years has made me much more understanding of and patient with others.
MS affects the brain in strange ways. Dad is very sensitive to loud noises. When my brother, Vincent, and I were younger, we would shout across the house to each other and it hurt Dad’s ears. I had no idea that “normal” sounds could be so painful to someone with MS. Heat is also a problem for him, so as soon as it warms up in spring, our air conditioning is on full blast. We freeze, but he’s comfortable. Vincent and I would help our Mom administer Dad’s medication. We’d disinfect the skin where Mom would make the injection and then apply a Band-Aid for protection.
I mentioned my Dad’s sense of humor. It has taught me to see the lighter side of many “heavy” situations. I’ll always remember our Disney cruise, where a ventriloquist entertainer chose Dad to be one of her “dummies.” Dad played along perfectly, even when the ventriloquist gave him the voice of a squealing little girl. He just obediently moved his mouth and the crowd laughed hysterically. After the performance, one enthusiastic “fan” even asked Dad to autograph his arm!
Thus, my background of having lived with my Dad and his MS has contributed a significant part to my identity, and made me who I am and how I think about things. If I can live my life half as well as he has, it will be an overwhelming success, especially since I now know what a “graduand” is.
By the way, she got into and just started college.
I didn’t know how expensive college was going to be.
Now I’m putting the ranch, the cows and every stalk of corn that I own up on eBay.