July 1st, 2002
Marcia Tarbis Tofteland
THE FIRST QUESTION my son Joshua's kindergarten class asked me when I walked into their classroom was, "Why are you using that thing?" They were referring to my cane in their blunt, 5-year-old way.
After explaining MS to the children in a way that they could understand (see Real Living with Multiple Sclerosis, June 2002), they understood why I needed a cane to steady my balance.
The epiphany I experienced after speaking tb Joshua's kindergarten class about MS would have a lasting effect on my life. My insight was simple: The more comfortable I could make others feel about my MS, the more comfortable I became with it myself. After sharing my MS experiences with Joshua's friends, the atmosphere became more relaxed each time we met.
Candy, Licorice Stick, Penny, and Sparkle
I gave my canes names that I thought my son and his friends would enjoy and remember. The cane I used most often was a clear Lucite one that I called Candy. When I asked the children what they thought Candy's last name was, they quickly responded that "her" last name was "Cane." I would decorate Candy every year during the Christmas holidays every spiraling it with a bright red ribbon and topping it with a red bow. I soon discovered the bow was impractical for any long period of time, so the red spiral was sufficient. for the cane to resemble "her" namesake.
I acquired several other canes: a black cane called Licorice Stick, a copper cane that I named Penny, and a black cane that had hand-painted gold flowers with a rhinestone center that I called Sparkle. Whenever I would see the children, they always asked "who" I had with me.
On several occasions throughout the school year, I read a book to my son's class. Though I wasn't there to discuss my MS, my book-reading visits further familiarized the children with me and made them comfortable with my awkward gait and the canes I used for assistance. My MS, my gait, and the help I needed became a natural part of what the children expected to see when I was in their classroom or when they came to visit our home.
The level of comfort Joshua developed with my physical differences made me realize that I was approaching my life with MS with a level of acceptance I hadn't anticipated. Some questions arose: Why couldn't people simply accept disability as a physical problem and realize I was the same person I had always been?
Why did I have to be looked at or spoken to with an attitude of pity?
Why was it my responsibility to approach people with an upbeat and jolly personality so that they could realize I hadn't changed as a human being in any way that really mattered? What was the lesson to be learned from the experience with the kindergarten children? Again, I realized that it was my responsibility to put people at ease with my MS and me. I must admit, I occasionally resented this.
A Slow Acceptance
Ultimately, I realized that the experience with my canes was a metaphor for accepting MS as a reality I must deal with. I was still the same human being I'd always been. The only change was that I now needed a cane to help me walk safely.
Over the years, as my MS progressed, each loss of physical function required a recommitment to acceptance. My husband will tell you I was slow to accept these changes.
The first change of mobility aides was by far the easiest. I had little problem accepting the need to use a three-wheeled electric cart. At the beginning of this transition, I was still able to do limited walking. I was still driving and being a chauffeur to our son and his friends. We purchased a lift for the electric cart, which made it possible for me to go independently to the grocery store or on limited shopping sprees. I was able to load the electric cart into the back of our car and off I would go. The looks I received from others were odd, if not yet looks of pity. I (with my husband's guidance) learned the necessity of separating someone else's problem from my own. If others had trouble with seeing someone on an electric cart, that was their problem, not mine.
As years went by, my losses continued. I eventually could no longer drive safely. My fatigue and weakness made loading the electric cart into the car by myself impossible. Finally, the time came when I could no longer operate the electric cart. My increasing spasticity made it difficult for me to reach the handlebars. The final blow came when my thumbs lacked the strength to guide the electric cart. My acceptance of this reality, however, took a long time. Caregivers, my husband, my mother, even Joshua, would walk beside or behind me and guide me in the electric cart.
I was struggling with the necessity of needing a power wheelchair. Although there isn't a great deal of difference between an electric cart and a wheelchair, it took me a long time to realize that I was having difficulty with acceptance. I was also having difficulty with how others, including my husband and our son, would perceive me in the chair. Was this my problem or theirs? I know now I was allowing my increasing disability to affect my own perception of myself... exactly what I had been working on and writing about for years.
Finally, Curt had to emotionally "strongarm" me into seeing what I had to do. This pattern would become much too typical of my behavior at each crossroad in my care.
A large part of my concern that accompanied every loss of function was
the reaction of Joshua and his comfort level with his friends. In my denial,
I was leaving Josh out of the process these changes were having on him.
As I will talk more about next month, it wasn't until he was in middle
school that Joshua himself awakened me to this fact.
© 2002 Real Living with Multiple Sclerosis