Is Multiple Sclerosis a Blessing?
by Shelley Peterman Schwarz
I could feel her eyes rivet on me as I spoke. When I ended my keynote address, she raised her hand to ask a question; "Do you think of your MS as a blessing?" Pausing a minute she added, "Because I think of my having MS as a blessing."
It wasn't the first time I had been asked that question. Nor was it the first time I had answered it. Years ago I asked myself that same question. Now the three hundred women gathered together to learn from and support each other in this common journey were silently awaiting my answer. And my answer was and still is a resounding Yes!
If you're wondering what's good about having MS, let me try to explain my philosophy. I may never understand the actual reason as to why MS entered my life, and that's OK with me. Someday there may be a medical explanation why some people get MS and some don't, but for today I believe that I needed to learn some life lessons and grow spiritually, and the only way I could do that was by being faced with significant challenges.
In fact, I feel lucky to have learned at a younger age what most people learn later in life, that is, that life has no guarantees. Bad things can and do happen to good people. Knowing this has made me realize how acutely fragile life is and has helped me savor every moment.
Even if we can't explain why bad things happen to good people, we can change the way we choose to live with "what is." Author Barbara de Angelis writes about "Real Moments" in life and what they are. For me it was understanding that driving a car was not nearly as "real" as reading a bedtime story to my children, Jamie and Andy. Grocery shopping was not nearly as "real" as seeing my daughter's beaming face as she walked across the stage to receive her college degree. No matter what your physical condition, you can still enjoy "real" moments in your life and the lives of those you love.
Because my body aged more quickly than other people's, I could understand how older folks feel as their bodies age. When my husband David's parents began to fail, I could understand what they were going through and could translate that information to the rest of the family. I could also see solutions to problems that the other siblings couldn't. I was a helpful resource to the family and could have candid private conversations with my in-laws that others felt uncomfortable having. At times they shared thoughts with me that they didn't share with anyone else.
My restricted mobility and reduced energy level forced me to slow down. And when I did, I discovered that I had something special to offer my friends and family that few people had. I had time. Time to listen. Time to care.
When the kids were growing up, I was home before and after school. If one of them got sick or needed something at school, they knew where to find me. I also remember times when I was really glad I was there, like the time Andy fell off his bike on his way home from school. He was pretty banged up. Some high school boys saw the accident and stopped to help him. They carried him home where Jamie, under my direction, cleaned and bandaged his arms and legs. Even though I didn't have the strength to actually help Andy, I was there consoling him and rubbing his back as Jamie ministered to his wounds. Before MS slowed me down, I was working part-time and going to graduate school. How much time do you think I had left for my family? Now I have all the time they need.
I also have time to be a friend. While the rest of the world whizzes by at a frenetic pace, I have time be there when someone needs a friend to talk to. And it seems everyone needs someone to talk to.
Maybe it's because I am (relatively) young and in a wheelchair that people feel they can pour out their heart to me and I'll understand. One such occasion I was having new vinyl flooring put in. As I came in periodically to check on the installer's progress, he began asking me questions like, "What happened to you? How long have you been in the wheelchair?" and "Is there is a cure for what you have?" As I shared my story, he began talking. The doctor had recently told him he was "filled with cancer." He talked as he worked, his eyes fixed on the flooring to hide the tears filling his eyes. I sat and listened as he poured out his heart to me. When he left, he gave me a hug and the most heartfelt thank you I've ever gotten. As sad as I was to see this gentleman in pain, I felt I had helped make his life a little better at least for that day.
Over the years I've talked with people in person and over the phone about everything including suspected extramarital affairs, teenagers with drug problems, broken engagements, and problems with aging parents. I don't play "Dear Abby," because I don't have any answers. I merely listen with my heart and empathize with what the person is going through. MS has given me an insight into life and taught me that most people face challenges of one kind or another. Things that would not be a problem for me, may be a monumental problem for someone else. Our perceptions vary greatly. No one's right and no one's wrong.
I discovered that being a good listener has brought me knowledge and friendship. All the people I've met during my life with MS, - healthcare providers, new friends, neighbors, writers, people with disabilities and even bureaucrats, - have taught me something. Many have enriched my life greatly. I can't imagine my life without some of these new and special friends.
Having MS has also given me a new purpose and career. Ever since I was a 15-year-old sophomore in high school, I wanted to be a teacher of the deaf. When MS cut my teaching career short, I was despondent. It took a while but I eventually learned that MS had given me new and different opportunities to be a teacher again. Whether I was explaining how MS had affected my life to nursing students at the University of Wisconsin, or testifying at the state legislature, I was educating people about how illness and disability can change lives. When children at the mall ask, "Why are you in that wheelchair?" I educate them and their parents with my response. When I joke or exchange pleasantries with the bank teller, the sales clerk, or the librarian, I'm helping them feel more comfortable around people with disabilities. Maybe through my small efforts they'll see me and others like me as whole and complete people.
One of those small efforts happened just last weekend when we went to a play at the civic center in our community. We had dined out and arrived early at the theater. David and I decided to scout out an out-of-the-way restroom where David could help me use the facilities. As we walked into the building, we bumped into a group of friends. One of them happened to be the managing director of the repertory company whose play we were going to see. After visiting a few minutes, I pulled the director aside and asked if there was a restroom we could use in the closed office area of the civic center. My friend apologized because there were none in that area but offered to "stand guard" at one of the large public women's restrooms.
As we walked back to the group, I mentioned that a large public facility like the civic center should have a family or unisex restroom for situations where a member of the opposite sex has to provide personal assistance. My friend said, "You know, I never would have thought of that. Thank you for the great suggestion." Since the civic center will be undergoing a major renovation in the near future, I know that my input has the potential to help a lot of people.
Another reason why I feel my MS has been a blessing is that MS has taught me how creative, optimistic, and strong I am. In the beginning, I worried how I would manage when David was at work and the kids were at school. What would I do all day? Who would help me in the bathroom or in bed when I needed to nap? I didn't know what I was going to do. But slowly, over time, I figured it out. As I solved these daily problems my confidence grew. I set up schedules and routines and found people to help me get through each day. I also found I wasn't just existing. I was leading an interesting life.
I don't think I'm overstating it when I say that I know that I'll find a solution to ANY problem that comes up in the future. And if it's a huge problem that has me stumped, I'll count on my stubborn streak to take over. That was tested recently when David had back problems. It was awkward and painful for him to lift me. So I dug my heels in and met the challenge to reduce or eliminate the number of times a day he had to lift me. We managed and his back thankfully improved.
I could spend my days worrying about other future problems. What will happen when David is unable to lift me anymore? Or what if he becomes seriously ill? What if the children move far away? How will I cope if and when I become more disabled? I deal with these thoughts by trying to keep them in perspective. Sometimes I try to think of options or begin long range planning. Sometimes I cry to release my fears and frustrations. Sometimes I retreat into my private world and feel the pain. But whatever I do, I never let the fear and worries linger too long. If I did, it would be like a cancer in my soul with the potential to destroy all the wonderful and good things in my life.
I've also loosened up. I'm not a perfectionist any more. I'm less intense and more patient. It was a conscious decision to "let go." I couldn't waste my limited strength and energy getting aggravated because my friend put too much peanut butter on my sandwich or the children used the wrong cloth to wipe up the kitchen floor. In the same way, I don't let it bother me if my friends plan a party or activity I can't participate in like a golf outing or bowling party. I want to be part of the action so I simply find a place to sit where I can visit with those who happen to be free.
Having MS has strengthened my faith. I feel a deeper "connectedness" to the universe. Having lost several friends to MS and other causes, I feel I know what matters. If it hadn't been for this disease, I never would have dealt with my own mortality or my place in this universe. My faith has taught me that there's a higher power out there and that we're not alone. I look at a beautiful fuchsia sunset, listen to the squirrels crunching nuts to store for our long Wisconsin winters, smell the lilac perfume of the purple blossoms outside my window, and feel my husband's arms around me and I know it's no accident. It's comforting to me to know that there's something bigger than I am that created this beautiful world we live in.
Yes, I chose to see MS as a blessing in my life. I'm a nicer, more loving, compassionate, and caring person than I think I would have been had MS not entered my life. I like the person I've become. And, I look forward to learning other life lessons as I journey through this world. At the end of my life, if I am truly blessed, I will leave the world a better place for having been here.