Creating a Happy Life
by Shelley Peterman Schwarz
Recently a friend of mine stopped over to visit. As we talked, the telephone rang several times, a neighbor stopped by with an invitation to her daughter's bridal shower and a volunteer dropped off library books I had ordered. My friend shook her head and asked, "How do you manage to stay so busy? Every time I stop by your house it's a hotbed of activity."
I never thought about it before, but I guess I do stay pretty busy. Considering I'm severely disabled by primary progressive MS, I suppose people think it's unusual that I have such an active, diverse life filled with lots of friends and diverse activities.
When I was diagnosed with MS, I was determined NOT to let it change my life. I was a wife and mother of 2 preschoolers. I'd always worked as a teacher of the deaf and had a busy life that included craft club, dinner with friends, and women's service organizations. But the illness had other plans for me. No matter what I did, how much I slept or what I ate, I woke up every morning worse than I was the day before. Ever so slowly I lost my physical abilities. At home, I found shortcuts and made compromises. My wonderful husband Dave began doing many of my jobs, especially the jobs that required energy and stamina.
As I cut back on all but essential activities, my world outside the home began to shrink. If I had to give up my outside activities, I'd lose another piece of me. Losing my independence was bad enough, but I didn't want to lose my contact with people. My biggest fear of all was that I'd have nothing but this illness to talk about and it would turn me into an angry, bitter person whom no one wanted to be around.
I cried nightly over my frustration with this illness. Would my condition ever stabilize? What was I going to do? After one particularly bad crying spell, I laid in bed exhausted. What options did I have? Through puffy swollen eyes, I could see the answer clearly. I had to accept what was and use the energy I did have to stay involved. My family would be my first priority, and running a close second would be my friends. I was determined to live a life filled with interesting people and fun activities.
One of the first places I thought I could involve people in my life was with range of motion exercises. I couldn't get out to swim or go to the Y anymore because it just took too much out of me. Passive range of motion exercises kept me limber and comfortable. With a little instruction from a physical therapist, anyone could learn the routine.
So for the past 15 years, I've had a wonderful combination of paid helpers and volunteers come into my life to help me exercise. Occupational therapy and physical therapy students from the University of Wisconsin earned class credit and gained valuable experience working with me. Two high school students learned the routine, earned a little money and helped foreshadow what my own children might be like when they became teenagers. Confirmation students helped me as a service project. The nursing assistant at my children's elementary school helped out once a week, as did a former student of mine who is deaf. Friends and neighbors took turns filling in for each other, making the arrangements between themselves. Sometimes my friends would come in small groups, and, while someone exercised me we'd talk, plan a party, or listen to each other's problems. Some friends, like my friend Carol, have been coming once a week for 15 years. It wouldn't be Tuesday without my visit from Carol.
Over the years, I learned so much from the men and women who helped me. Special bonds grew and as close friends we talked about everything from divorce and raising kids to caring for aging parents and what we were having for dinner. Even though many of the young people have moved away and now have families of their own, I still keep in touch with them. (One of the high school students is now a college graduate and last month I was invited to a baby shower for her. I feel like an expectant grandma.)
My range-of-motion exercises only take about 45 minutes a day so I had plenty of hours to fill while Dave was at work and our two children were at school. I needed time to rest but thought that since I still enjoyed reading, maybe a book club would provide me with another way of staying involved. When our temple sisterhood started a book club, I offered to host the monthly gathering. Everyone took turns bringing goodies to share. The guests served themselves beverages and cleaned up afterwards so Dave and the kids didn't have extra work. The women in the group were very understanding and willingly made one concession for me: we read only books that were out in paperback because I couldn't manage the hardbacks.
When I was a little girl, my mother taught me how to play Mah Jongg, a Chinese game played with tiles. Some of my friends wanted to learn how to play so I offered to teach them. For almost two years I taught groups of three this ancient game. It was fun being a teacher again and we laughed hysterically at how hard it was for adults to learn new games and strategies. One group of four still meets every other week to play. Drop by if you're in the neighborhood and we'll teach you how to play.
People have different interests and talents and I've learned to capitalize on that. Sue and Fran enjoy cooking so we get together and cook cauldrons of chili, soup, and stew which we divide up for our freezers. Sonya and Jesse are computer literate and have taught me shortcuts and explained why my computer isn't responding to my demands. We have van with a wheelchair lift that many of my friends are willing to drive. Jean and I head to the beauty school a couple of time a month to get $4 manicures. Judy helps me run errands and enjoys going out to lunch. Linda has a great sense of humor and makes me laugh even when I don't feel like it. Ina is my quiet, gentle friend who has been coming at least once a week for more than 10 years. We have lunch and she stays to open mail, write letters, wrap presents, help me in the bathroom and into bed. No one could ask for more special friends.
When I'm alone, I enjoy writing on the computer. I've been keeping a journal since my diagnosis in 1979. Writing in my journal and writing articles for magazines like Real Living with Multiple Sclerosis have helped me deal with this illness and the sadness I feel. I read books to help me improve my writing skills and books to help me cope better. I use "down time" in bed to call friends.
The people I know with MS are doing the best they can. It would be easy for us to fall into a "Gee, ain't it awful!" pattern, but the people I seek out are like me. They're trying to make a good life for themselves. They're problem solvers and solution seekers. Ask your local MS society to put you in touch with others who will give you the kind of support and encouragement I'm talking about.
Since my diagnosis, the world as I knew it is gone. But in its place is a world where I can still be happy. I'm still having new experiences. I've started raising orchids, attending book readings at bookstores and tutoring an Armenian woman in English.
MS may have a big hold on us but we must NEVER let it take over who we are. You and I can fill our lives with positive people who want to be around us because we are so much MORE than this illness.