Losing Muscle, Gaining Strength
On March 6, 2012—Super Tuesday—I was diagnosed with inclusion-body myositis (IBM). Once rare, but now increasingly frequent, this disease causes the muscles of the arms and legs to weaken and deteriorate. IBM is more common among men than women.
Within five to ten years, I will probably need a leg brace, a cane, a walker, eventually a wheelchair. Mine is a rare form of IBM that also affects my hands. At some point, they will become useless to me. I will not be able to hold a cane or walker, not even a knife or fork.
The onset of the disease is slow and gradual. I had been noticing changes in myself for about a year and half. It took me longer to go places. I had trouble climbing stairs and getting up from a chair. I needed buses to kneel or to lower the ramp.
I had feared a worse diagnosis and prognosis, such as Lou Gehrig’s disease. Mercifully, IBM is not fatal or life-threatening. But it does pose serious problems in terms of quality of life.
It is hard for anyone in our society to accept such a prospect. Our society idolizes youth and beauty, health and strength. It dreads and fears the specter of weakness and infirmity, the creeping approach of age and death.
Men especially are socialized to be strong and independent, to rely on their own resources, to be the breadwinner and the pillar of their families. So it is all the more frightening for a man to find himself dealing with a degenerative disease such as IBM.
In the days since my diagnosis, I have become more keenly, sharply aware of others in similar circumstances. I have been more likely to notice others using assistive devices, or lurching along with an awkward gait. I have a greater appreciation of how much courage it requires to take another step forward, when you might fall flat on your face, or your next step might be your last.
The morning after my diagnosis, I recalled the words of Elizabeth I when she reviewed the troops at Tilbury, as the Invincible Armada sailed against England. “I know I am a weak and feeble woman,” she proclaimed, “but I have the heart and stomach of a king, aye, and a king of England, too.” I resolved to draw inspiration from that redoubtable monarch, whose life story so utterly fascinated me in my younger days.
In this American election year, I have also found myself thinking about two great presidents who faced physical challenges. John F. Kennedy wore a back brace and suffered from the early stages of Addison’s disease, necessitating cortisone shots. Franklin Delano Roosevelt was diagnosed with polio at the age of 39.
These two men achieved greatness despite (or perhaps because of) the obstacles they faced. Surely I can find the inner strength to maintain my quality of life for as long as possible. Surely I can be a profile in courage. Surely I can learn that “The only thing we have to fear is fear itself.”
In the 1939 classic Gone with the Wind, Ashley Wilkes says of those faced with a crisis, “The people who have brains and courage come through, and the ones who haven’t are winnowed out.” This is as true of an individual as it is of a society or a civilization. It is true of me, and it is true of every man.
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