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.
Men are trained from infancy to stand on their own two feet, to keep fighting and never give up, to go it alone without leaning on anyone’s shoulder. Surrender or dependence is viewed as a lack of manliness.
Yet knowledge and acceptance of your limitations, your finite nature as a human being, is not weakness or defeat. Rather, it is a source of power and strength. It is also a source of wisdom, the wisdom of ancient Greek philosophy, with its basic tenet, “Know thyself.”
In the early 1970s, the maxims of “Desiderata” inspired millions, including this piece of advice: “Take kindly the counsel of the years, gracefully surrendering the things of youth. Nurture strength of spirit to shield you in sudden misfortune.”
This is the kind of strength it takes to be a real man—not the power of sinew and muscle, but resilience of the spirit, greatness of heart and soul.
My reaction to the diagnosis of IBM has been interesting, to say the least. My primary emotion, surprisingly, has been one of great calm. Perhaps this is because the worry, doubt and uncertainty are now past.
Fear? Anger? Sadness? Revolt against the unfairness of it all? Resignation to the inevitable? These have not been present, or at least not consciously or acutely so.
I do not even think of IBM as an illness or a disease. Rather, I think of it as a chronic condition that I must live with from now on. IBM will become part and parcel of who I am. But it will not entirely and absolutely define me as a human being.
I am fortunate, indeed blessed, not to be facing this alone. Above all, I have a partner—a true helpmate in the biblical sense—whom I know will be with me every step of the way. I realize now, more than ever, what a great good stroke of luck it was the day he walked into my life.
I truly believe that this change in our circumstances will ultimately bring us closer together, and solidify our relationship. I believe it is already doing so. We will grow in strength. We will grow in wisdom and patience. We will grow in love.
I do not view my condition as a divine punishment for my transgressions, as a scourge or plague. If anything, I see it as a challenge, a test. I can allow IBM to cow me into submission. Or I can use it to my advantage to grow and become spiritually, if not physically, stronger than before.
Ecclesiastes 9:11 says, “The race is not to the swift, nor the battle to the strong, but time and chance happeneth to them all.” I do not feel I am the toy or plaything of chance or random circumstance. I believe my life has meaning, that there is reason and rhyme to what is happening to me, that it is all part of some larger scheme or plan beyond my ken.
To be truly strong, truly a man, is humbly to accept the will of the gods. To quote “Desiderata” once again, “Whether or not it is clear to you, no doubt the universe is unfolding as it should.”
—Photo Christopher Neugebauer/Flickr