In a recent discussion with a close friend, the topic of pressing forward despite troubling times surfaced. She remarked, “How is it that you are able to be so optimistic when year after year your muscles become weaker? We have known each other for quite a long time, and I remember when you were able to do so much more. I remember when you were able to feed yourself, sign your name to your checkbook or on a credit card receipt, hold a telephone up to your ear, dial a telephone, and shake people’s hands. There was a time when you could be left alone at your home for three- or four-hour spans and not have your personal care staff constantly around you. You had privacy. You had independence. You had control. You had abilities and skills.”
I laughed and said to my friend, “Can you give me another bite of my meal now that it is cold? Then I will answer you!”
I began by reminding her of my perspective on where I had been and where I am going. I have never spent much time dwelling on the abilities and skills that were once mine but are no longer available to me. To be candid, I do not remember them in precise detail. It seems as though so much effort goes into living day to day and maintaining my health and meeting my needs that I do not have much time to reflect on what I used to be able to do and how I was able to do it. I am more concerned about what I have to do today and what is on my agenda for tomorrow.
As a matter of fact, I do not greatly miss the things that I used to be able to do to the degree that one might initially think. Fortunately, my body has gone through a subtle, gradual decline. For example, throughout the years I went from holding a fork in my right hand to eat as most individuals do, to holding the fork in my left hand, to adopting a two-handed technique in order to adapt as my fingers, hands, and arms became less and less cooperative. Eventually, the adaptations were exhausting, and I was ready to accept the reality that I could no longer feed myself. I was prepared to move forward to the next phase of my life of being fed by others and concentrating instead on instructing my family and helpers on the types of bites and the pace of bites that I found satisfying.
“I have very little control over the progression of my disease,” I explained to my friend. “But I have a lot of control over my reaction to the progression of my disease.” Having lived for five decades with a muscle disease has provided me with ample proof that sooner or later, my body is destined to fail me. But what won’t fail me is my attitude, my family, my friends, and my Savior. Those are the things and the people I can count on and trust. Those are the things that fill my life with hope, happiness, and strength.