What is health? How do you define being healthy? Do you compare yourself to others? I’ve been thinking about this post for quite some time and find myself no closer to an answer than when I started. In the hospital, or maybe years prior as multiple sclerosis took more and more of my mobility, I wondered what made someone healthy. I constantly compared myself to others. And as anyone with chronic illness will tell you, the benchmarks for health change on a regular, if not daily basis.
But the thing is, health isn’t just one thing. And comparison is a ridiculous endeavor when it comes to defining health on so many levels, because most illness is invisible.
As Theodore Roosevelt said, “comparison is the thief of joy.”
As my mobility declined in the last three years, the number of steps I took decreased. I used to take 2,000 steps in the morning before heading to work. I could hit 10k before lunch if I had a meeting across campus. I spent nine months achieving my 200 hour yoga teacher certification. I took any of the flights of stairs in my house without a second thought. I picked something up off the floor in a deep squat without knowing how amazingly strong and solid my legs were. I discovered my sensitivity to gluten and without pause, cut it from my diet. I paid attention to my diet and my environment, and did everything in my power to control an uncontrollable situation.
I don’t believe my efforts were in vain but there is no way to measure their success. Because despite the changes I made, MS continued a merciless attack on my central nervous system causing continued neurodegeneration that stumped my neurologists and left me without much hope.
I was thrust into the cancer community with my insurance approval to receive HSCT. But the thing is, I do not have cancer. This may seem like a small distinction but I felt it throughout the HSCT process from my initial meeting with my oncologist to present day. As the clinical protocol is for cancer patients, every blood test and measure of success was relayed to me as it compared to a patient with cancer.
During my two days of testing, each and every technician made a comment about my health – blood work, heart or lungs. This commentary of my health was made as I sat in a wheelchair or used my rollator to get around. The tests to undergo HSCT, were not neurological so I was reassured time and time again, how strong my body was.
I was told I was healthy. I was told I was young. I was told I was strong.
I was told that MS patients typically harvest the necessary 5 million stem cells in one day rather than several days which is typical for individuals with cancer. On the day of stem cell harvest a nurse came into my room and said, “hey stem cell rock star!” While I was elated, I wondered at that time if there were patients with cancer in the bays next to me who, upon hearing that, would feel despondent.
Jealousy and mind games
In the hospital, my body wrecked by chemotherapy, I had a lot of time to think, very little to look at, and almost no mobility as I was paralyzed for several days. I watched cancer patients in the ward walk up and down the hallway, bald heads uniting us. I stared in awe at their ability, despite undergoing the same or similar treatment, to seemingly without effort, take lap after lap of the Bone Marrow Transplant floor.
I felt sorry for myself in my hospital bed cage, stuck in a body that couldn’t move. I was jealous. Even as I type that, I understand the absurdity. I was jealous of their mobility which was the only marker I equated to health at the time. I saw my prison and their freedom. The mind can be a real bastard at times.
I vividly recall seeing the dry erase board denote day +3 and thinking to myself, “I can’t do this. How will I get through to day +20? I can’t do this.” Then one day and without warning, my paralysis was gone. I was able to walk again using my rollator. The shift was so swift that nurses and PCNAs came into my room and stared in shock. One even walked in and yelled, “holy shit!”
Each morning in the hospital, I received my blood counts – white blood cells, hemoglobin, platelets and more. My numbers didn’t just increase, they soared. I was discharged at day +12. I recall feeling pure excitement as I was wheeled out of my hospital room. But I also felt ashamed for my original jealousy and comparison to others on the ward.
In nine days, I went from believing I couldn’t continue on through the pain and suffering, to going home. The oncology team said it would happen fast but none of us was adequately prepared. I was leaving in record time… albeit in a wheelchair.
For the last few years I’ve looked at health as an ability to walk or my lack thereof. I still to this day, stare at others ability to move with ease or complete a task I can’t, with wonder and awe. But I no longer think it’s a one to one comparison. Walking does not equal health. I am not jealous of cancer patients. Illness is mostly invisible and everyone has their struggle.
Several well-intentioned people said to me, “but it’s nothing like what you went through!” when discussing a struggle they were in the midst of. Saying this to me as if there is a hierarchy in the world that denotes whose situation is worse. As if in telling me, I would view their pain as less valued than my own.
There is no hierarchy. The worst thing you’ve ever been through is the worst thing you’ve ever been through.
A note on invisibility
Health, illness, joy, pain and suffering are often endured quietly and alone. For years people I worked closely with knew nothing of my disability or struggle. Only recently, with the use of mobility aids or the loss of my hair, is there an easily identifiable marker to my illness, my struggle, my lack of health. So much is endured without outward acknowledgement in illness and in health. And I think we could all stand to be kinder to ourselves.
Even on the bad days, the seemingly unendurable days, take a moment of gratitude for the body that keeps going despite all our different struggles. Stop comparing and come up with what health means for you in your wonderful body, and know that definition can shift each day.