My Life With Multiple Sclerosis: What I Wish Others Knew
I was in a hurry to get dressed and get to work. Two hours later, I looked down and realized I had my comfortable black working shoes on the wrong feet. This was part of a pivotal moment for me to stop ignoring a series of symptoms I had been experiencing: icy cold feet, numbness, pin and needle pain.
I did not expect a diagnosis of Multiple Sclerosis. But that was back in 2005, when I didn’t know too much about the disease. My primary care physician broke the news to me and warned against researching Multiple Sclerosis on my personal computer. Of course, I nodded in agreement, and then immediately went home and Googled. The first site opened said, “no hope, no cure.” The second site I opened was from a blogger whose progression was severe enough to put him in a wheelchair.
Both websites depicted a scary future for me. The reality was harsh, and it forced me to see that my life was about to change.
After I had given myself the appropriate amount of mourning for a derailed life and uncertain future, I moved forward. First, I walked with ease. Then I became a “wall hugger,” using my hand along the surface for balance. Then straight to a walker with wheels. Now the time is coming to resort to a wheelchair, full time. Not yet, but not long in my future.
Every long-term idea now has a codicil of understanding the plan might change. Multiple Sclerosis is unpredictable. If the nerve sheath frays beyond repair, I may find a leg ceasing to move. My progression may force a different set of new challenges hitherto unanticipated. The nature hike I plan in January to be taken in April could become an impossible dream in the few months between winter and spring. A beach vacation might not include walking to the water’s edge and enjoying the feel of sand between my toes, but a cool ocean breeze and the rhythmic sound of waves upon the shore still holds an attraction. Since I do not know what I will be able to do from one day to the next, I want to make no promises. I live in the “here and now.”
I no longer worry about what I did not accomplish in the day. Rather than retreat from life, I work on solutions. I deal with my spasms, the nerve pain and the numbness by acknowledging it, taking a few medications and giving myself permission to be miserable on the inside but arranging a smile and a positive attitude to those around me. No sense bringing everyone down when each person I meet has the potential of lifting my spirits.
How I Wish Others Would Respond to My M.S.
If I was in control of the words and actions of all people I meet, I would love to stop well-intentioned souls from frantically looking for a place for me to sit down the moment I stand. I want to stand and stretch my body and rearrange my squashed vital organs and relieve pressure from my back.
I have heard many a person thoughtlessly say they would rather die than use a walker or wheelchair. Not me. I will do what is necessary to be out among people. The walls of my house are not enough for me, better to wheel about in my chair than live the life of a hermit.
I would ask for acceptance of my disability rather than an attempt to relate to my plight by telling me about an aged grandmother. Inside, it hurts. On the outside, I smile. I appreciate the desire to sympathize with my challenges, but my ego screams that I am your peer, not two generations older.
I would ask that no one ever envy the handicap placard and think of it as the bright side of not being able to walk long distances. In the heart of every person confined to a wheelchair is a soul willing to park in the farthest spot in a soaking cold rain and walk, skip, or run into the grocery store. I am not happy to avoid the long lines at the airport and cut in line. I will never forget the inconsiderate man who begrudged being displaced momentarily by the skycap assisting me. I hope he will always remember my words when I told him how I wished I could trade his body for mine for just a moment in time. Truth be told, I may not have willingly given it back.
I would ask for a ban on the phrase, “I have been so busy but I think about you all the time and I have been meaning to call.” This is invariably uttered when I contact a friend or relative. I appreciate your full life and I cannot help but feel envy. In the life I had before Multiple Sclerosis, I do not remember this phrase being uttered. It feels insincere and patronizing.
I would also wish for positive action. You see, I can no longer drive. I am a prisoner in my house. If you truly do think of me, send a random text about something that may have happened just now. It can be happy or humorous or sad. Suddenly I would really be a part of the world through you. People in my condition love the occasional diversion of everyday living.
We don’t pity those we love. We include them.
Cynthia Berg and her husband Aaron currently live in a suburb of Scottsdale, Arizona. They are planning to move into an urban setting to enable Cynthia to have the opportunity of exploring a more interactive lifestyle with activities outside her front door.
By Cynthia Berg