• Waldenström Macroglobulinemia
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Scale Back: Honoring My Changed Body


It's hard to honor our bodies and respect what we need, especially when we are sick bodies living in a sea of the well.

It’s a natural human behavior, as least in my observations around the U.S., to compare ourselves to one another. A diagnosis of a tumor, a cancer, a need for life-altering surgery doesn’t change that somewhat neurotic behavior that urges us to wonder how we stack up in relation to the folks around us. Our Western education tells us to be fiercely independent, we should fight hard in the race of life. A race, we are told, we all have a fair shot of winning. Regardless of race, creed, class, or ability, we are fed the idea that our attitudes can shift our outcomes, that we should fight hard and valiantly and all that we want will come our way. Our shortcomings are made to seem the fault of our abilities, our laziness, our lack of a desire to succeed. When we don’t achieve as high as the next person, we are faulted. Try harder, fight longer, burn brighter.

It’s true, attitude can enable so much. Hard work can foster self-growth and success. Yet, we must stop and wonder, are we not setting a dangerous precedent? Are we not putting the onus on the individual to overcome any and all circumstances that are thrown at them? What about community? What about the obligation of an unjust system? What about honoring multiple levels of difference in ideas, abilities and attitudes? What about recovery?

Never have I understood this idea more than I do now, sitting here, typing with a weathered and weakened body. I cannot do what I used to. I cannot fight as hard as I once did. I cannot take on all the challenges of life that I did before. I don’t say that I cannot because I have a poor attitude. Anyone who has known me since I got my tumor would probably tell you I handled and am handling this ordeal with an extraordinary amount of grit, grace and humor. I take account of my surroundings and my reality and I choose to laugh and smile in the face of it, all the while forgiving myself for my weaknesses and honoring the times I must cry — the times where there are no other outlets for my tired body. I show myself and others compassion, so I don’t think that we can boil my experience down to the failures of a woman with a poor attitude.

It is not easy for me to confront the idea that my physical body can no longer endure many of the adventures that my heart and mind desire. I punish myself, calling it laziness. I wonder in amazement at how people can make it through a work week while I, by day 3, find myself useless under a blanket on a couch. My need for rest confounds me. It is wound up with the trite phrases that tell us that if we believe hard enough we can do anything. It’s true. But it is also not true. I believe in myself and yet, sometimes, I am just tired. My body lags behind, my legs like dead-weights, my neck stiff from the scars of surgeries past. I spend my mornings not on coffee outings but trudging through early morning traffic to make a physical therapy appointment before the day begins. I am tired. I condemn myself for the laziness. I judge myself for my lack of energy. Another cup of coffee, another Diet Coke, wake up, work harder, longer, be more efficient. I fault myself for being tired. I forget that it was not long ago I was lying on a table, body opened up, vulnerable to the perils of modern medicine. I forget where I came from. I forget to show myself compassion.

I compare myself to the "super crip" (an academic term intended to describe the way we valorize the overcoming of disability) that super hero in a broken body who manages to overcome all and be more powerful than they were with an able body. I wish I could be that but then sometimes, more often, I wish that society, that the world would value my body, with its scars and its bruises, its pain and its fatigue. I wish that I wouldn’t be told any longer that I would get through this, rather I would be told that I am doing a good job living. I wish our able-ness was valued in all of its varying degrees.

As a PhD candidate, I am often expected to perform many tasks at a high level. I spent my summer getting multiple surgeries, the last of which was on June 1. When people ask me what I did all summer, I don’t say convalesce. I say, “a little of this, a little of that.” I protect them from the reality that is recovery and I shield them from the awkwardness of what to say. It was difficult to admit to myself that when the school year started this fall that I would have to cut back on the many jobs I passionately pursued, some to make ends meet and some to fulfill that burning desire for success within me. It was hard for me to scale back when I felt as though I was expected to be so strong. It was hard for me to admit that my body had changed.

Then, when I did scale back, when I opted to take on less responsibility at work and in many obligations, with all the conflicting emotions that came with that, I realized that admitting those changes, it was not weakness. It was strength. I own my body how it is. I own my fatigue. I honor the path my body has taken and the way my mind has come alongside it, to find balance among the discomfort. I don’t run from my discomfort I recognize it for what it is in my life. A challenge, not to be overcome, but to be lived with. I will likely not ever be a woman without headaches, or a woman without a tumor, but I will be a woman who lived — a woman who lived with it all.

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