I wrote this for a class I am taking. It is a response to “On Being a Cripple” by Nancy Mairs. All quotes are cited from Inquiry: Questioning, Reading, Writing 2e by Lynn Z. Bloom & Edward M. White. The following is my personal, original work. Please do not reproduce it, just link back if you like it.
Disease. The word alone conjures images of misshapen lepers with countenances twisted in a grotesque mockery of a species made in God’s image. Disease encompasses the downtrodden faces flashing across the television of impoverished children in third-world countries, their bellies distended from colonies of parasites and lack of food. Disease illustrates the sunken eyes and half-crazed appearance of AIDS patients in the early 90’s, the terrifying mystery sloughing from their skin in an aura of whispered words–contagious, pitiable, fearfully misunderstood. “Society is no readier to accept crippledness than to accept death, war, sex, sweat, or wrinkles” (25). But for some of us, disease is simply another tribulation in our lives. It does not define us, but it is a part of us with which we must learn to live.
I have a disease which has no cure. In fact, research has yet to show how it is even caused. Like Nancy Mairs’s multiple sclerosis, it is erratic and largely undefinable. Thus far in my life, I seem to have a mild case of it. Through my many sleepless nights of research, I have learned that at any time it could drastically worsen, even to the point of crippling pain or, in rare cases, death. My disease has a name, though what good that has done me is yet to be discovered. It is called endometriosis. It affects such a large number of women in this country that it is quite likely everyone knows someone who suffers from it.
I say our diseases are undefinable. I do not mean that if one looks in the dictionary, one will not be able to find the word, though it is darkly humorous that endometriosis is not even recognized by the spell check in this word processing program. Undefinable in this context means that though one can look up the words, have someone trained in medicine elaborate on them, and even talk at length with someone who has been labeled as such, one will never realize what it is like to be on this side of the fence. Part of me wants everyone to experience the kind of life-changing illness I have gone through, if only so that the world has a better understanding of what it is like to live in this body. Part of me would not wish this trial on my worst enemy.
Before I began reading “On Being a Cripple,” I was not sure what to expect. I have never been crippled, not in the way that people generally think of cripples. I have never had to use a wheelchair or cane. I have suffered problems in both my knees and elbows, but pride would not allow any but the most basic assistance from other people. I have never been disabled to the point Mairs describes in her recollection. Throughout the first few paragraphs of the essay, I found myself nodding and vocalizing guttural syllables of affirmation. By the middle of the composition, I was positive, without reading the other assignment, that this glorious revelation of illness was what I would write about in my own essay. The kindred spirit was awakened within me by Mairs’s simple descriptions of her everyday life. Endometriosis may be miles apart from multiple sclerosis, but healthy people seem to be from a different planet entirely.
The names we give our afflictions serve only to allow doctors and the general public to peg us into different slots. The experiences afforded us by being different are what really define who we are. Like Mairs, “I am immobilized by acute attacks of depression,” which has been debilitating on its own at times (28). I cannot say that my mental ill-health was caused by the physical diagnosis, but I can say that having an incurable disease has done nothing to improve the state of my psychological well-being. What gave me the final push to seek a cure is still up for debate. When I say cure, knowing that there is not one available, what I really mean is a band-aid to fix, albeit temporarily, the problems associated with my disease.
These days, both of my diseases, the mental and the physical, are manageable. I cannot live as the masses do. I must always be careful what I put into my body and on my skin. Even something as seemingly innocuous as toothpaste carries hours of research and anxiety in my house. Despite the restrictions, I suppose my life is about as happy as the average American’s life. Though, do we not all have restrictions? Few of us are ever truly free.
People with chronic illnesses struggle with definition. Healthy people struggle as well, but we have one more label to throw into the hat. We assert, daily, to ourselves and others, that we are not our disease. We are not defined by our disease. We question, daily, the truth of this statement. If we are not defined by something that commands such an overpowering presence in our lives, then what defines us?
I have noticed that many people with chronic diseases, after a period of time, tend to take on ownership. Rather than referring to the endometriosis, we say my endometriosis. This ownership gives us a power over it. It is the ruse of control that we know we have lost. The road to this point is long and harrowing.
Congruent with Mairs’ experience, throughout my journey with “a chronic incurable illness, I have moved through a process similar to that outlined by Elizabeth Kübler-Ross in On Death and Dying” (32). Most of the time I hover at acceptance, but sometimes, when I am sick of being sick (as Mairs so accurately puts it), I regress into anger, bargaining, or depression. It is only at acceptance that we can begin to heal. Obviously, it is at acceptance that she wrote her enlightening essay. “If I could make a cosmic deal, who would I put in my place? What in my life would I give up in exchange for sound limbs and a thrilling rush of energy? No one. Nothing.” (34)
Great liberation lies in being able to say I am X, I cannot do anything to change that, but I can learn to live despite of it. I can learn to not worry about what the future holds. I can learn to live for today. And if there is no tomorrow? I will have still lived for myself, and for no one else.
Endo Sucks 