I was diagnosed with Multiple Sclerosis (MS) four months after I completed a 150-mile bike ride for the American Lung Association. I was thirty-one years old. Two years later, I had to stop working. Soon, I could no longer identify with anyone I knew. It seemed like everyone was either having babies or working. I was doing neither.
Finding balance was difficult. I have always thought of myself as an athletic person, but my MS was starting to limit me. I found myself getting so tired every day that I needed to go to bed at 8:00 PM. I was missing many activities and times with friends and families.
I started going to the Catholic cathedral in town. This gave me time to feel God’s presence and to talk about my spiritual pain. Seeking a spiritual direction helped me get my life into focus. I realized there were some things I could still do and be part of the world.
A turning point came when I began helping an elderly neighbor I met at a local MS support group. Our relationship grew as we got to know each other through shopping trips when she needed help buying things. She was my inspiration; she still took cruises with her friends. I saw how she made a life for herself with her MS. I saw how MS did not have to destroy me.
I started volunteering for the Alcohol and Drug Help Line. I learned to laugh and have fun again. I made new friends in the MS support group. We went on outings together. Life started to be fun. I felt God’s presence inside and outside of the church. I began to watch birds. I learned to be still. In this stillness, God was there.
My husband lost his job and got another one. We moved to Olympia, and I began to attend Olympia Friends Meeting. I was drawn to the stillness. At times, I was moved to speak during worship. After attending a year, I decided to become a member and became very active in the meeting. I joined committees and was involved with ordering Friends Bulletin for the meeting.
I began to find new ways to define myself. No longer did I think of myself as an illness. Instead, I thought of myself as a contributing member of society. I did this by reaching out to friends. I started a book club. I made an effort to not focus only on my illness, but to listen to others talk of their lives. By no longer focusing on myself, I felt God’s presence. I was changing my life. I began to draw again. I took music classes.
In 2000, I started teaching harmonica at the Olympia Community Center. The class energized me and it was fun. My students taught me about their musical experience and lack of it. I joked that it seemed I had taught all of Olympia how to play the harmonica. I also performed at the Olympia Arts Walk with students from my class and a friend.
Eventually, my MS progressed to the point that I had to stop teaching the class. I also stopped performing. I began to do less and less for the Quaker meeting. Once again, I had to find a new balance in my life. I did this by teaching students in my home and learning the ukulele. I continued worshipping with Friends. I took art classes in town. I joined the city’s bicycle and pedestrians committee. I was appointed to be on the diversity panel of The Olympian. When I started to feel stress, I would go for a retreat at St. Placid Priory. Just walking in the door, I could feel my stress melt away.
In July 2016, I moved into assisted living two miles from my home. This was another step in finding a new balance. I had been falling a lot and ending up in the hospital more times than my husband and I liked. We kept having “the MS fight.” While my husband was at work or at the store, I would try doing something I really no longer could do. Then I would fall. Oftentimes, my husband would come home to see the fire truck pulling out of our driveway. He would ask me, “Why didn’t you wait until I got home? Why did you try to get up from your wheelchair on your own?” I spent so much time in the hospital that year, I felt like nothing but a patient. All this time, I was struggling to find a new balance in my life.
The dictionary defines “balance” as an equal distribution of weight enabling someone or something to remain straight and upright. I tend to lean towards the left when sitting or standing. I need to remain upright. I am practicing sitting balance and standing balance. I want to be able to take a few steps to transfer to my wheelchair. Right now, I am doing this more often than not. My goal is to walk down the hall to dinner one day. By exercising, I am keeping myself healthy.
I am not able to attend meeting for worship at Olympia Meeting any more. Members from my Quaker community come to my assisted living facility to worship here twice a month. I feel God’s presence. I bask in the silence. I do know my life is more balanced now than when I first got my diagnosis.
I asked my caretaker if she thought my life was in balance. She replied, “Yes. You go to activities. You socialize.” And I do. In this eighty-room facility, people care about each other. We show concern when others are taken by ambulance to the hospital. We rejoice when they return. I make a habit of encouraging people to join our morning exercise class.
I also make sure to immerse myself in my art and music. Recently, my friends created a wall of art from some of my work. I play my harmonica and practice my ukulele. I hope one day to take voice lessons and private art lessons. In order to live happily in an assisted living facility, it is good to get out once in a while. I hire a private caretaker for those times when I want to get out.
My husband visits often. We no longer have the MS fights. Our marriage is healthy. In the spring, I will go watch him play softball. We have been married thirty-five years. Life is good.
But keeping my life in balance can still be a challenge. Sometimes sadness creeps in. I miss my old life. I don’t sleep. During the challenging times, I try to remember to keep looking forward. Everyone struggles to keep balance. For me, I just need to take life one step at a time.
I feel God’s presence. This morning I saw a rabbit outside my window, crunching leaves. Beautiful! God’s presence is there. ~~~
Marybeth Bland is a member of Olympia Friends Meeting (NPYM).