Posted by Jennie David on March 06, 2013
Today in class, a guest lecturer talked about patients with chronic illness “having to get used to” their new roles as patients. Those words were not the main point of the sentence; they were the words you say trying to pad the time, but nevertheless they were there, sandwiched in between other ideas. It made me think of space-saving storage bags. My grandparents bought them years ago, in an effort to control the umpteen crocheted afghans that had begun to overtake their Florida condo.
There’s a sense of disbelief – or at least at 13 I possessed such a notion – that overtakes you when watching someone demonstrate a space-saving bag. They show you the pile of items to be stored and the nonsensically small bag that the items will supposedly all fit into. No, your reasonable brain informs you, this is impossible; it is foolish, for it seems like trying to fit the entire American population into the state of Rhode Island. But the miracle is performed; disregarding your doubt, the vacuum is hooked up to a special port in the bag, sucking air out and shrinking down the large pile until it is neatly, possibly even comfortably, squished in the teeny space-saving bag. And this is what I thought of, as the speaker lectured, about fitting into bags that can't possibly contain the whole of you - until you shrink.
There is something about being a patient that is belittling, and for the chronically ill, something that is voluntarily so. We comply and save our feelings for favorite books, comfort food, the song that always makes us smile, the memory of our first car, our first kiss, our first failure, plans to travel the world, and whatever else makes us up. Instead we don the Johnny shirt, shrinking into our own space-saving bag. We become reduced down to our disease; a list of symptoms, a medicine cabinet of pills, a medical record number.
If there is a manual on how to deal with a chronic illness, I missed it. As far as I'm concerned there are no rules, all you can do is live (and trip) gracefully. Yes, it is important for people with chronic illnesses to learn about their illness and to adjust to what it means (read: adjust emotionally not adjust your expectations about your life's possibilities). But it is also important to be true to yourself. When I wake up in the morning and get ready for class, or sing along to some favorite lyrics, or tell my parents about my day, or make cupcakes for my roommates; I am not my disease. I am Jennie. I am a girl graduating from college who wishes Patrick Dempsey would marry her - and so many other things. I politely, but fervently, refuse to be put in a space-saving bag, because it’s impossible to shrink me down and after years of being reduced to a diagnosis, I will no longer allow it.
The noun ‘doctor’ comes from the Latin ‘docere’, which means ‘teach’. ‘Patient’, on the other hand, is also Latin but means ‘suffering’. Even if you can manage to overlook the double meaning of patients having to be patient, the roots of the words speak for themselves. But the best doctors are the ones who suffer alongside you, who see the pain you’re too proud to admit to, who are normal and everyday and accessible and in that way wholly incredible and wonderful. And the best patients are the ones who never pass up the opportunity to teach a doctor, a nurse, or a medical student. The relationship between a patient and a doctor is dynamic and constantly evolving, and only when we can understand and respect it as a process will we ever be able to meaningfully work together – to quote a Taylor Swift song (but of course), “two is better than one”.
So be a little rebellious (if you’re like me, you never really went through the traditional teenage rebellion phase [Mom, Dad, feel free to disagree], you’ve earned it). You don’t fit in a space-saving bag, so don’t bother trying. Be patient with yourself, but no need to be only a patient – you are a teacher, you are incredible, you are a thousand other things, and (in the words of a fellow Crohnie) you deserve a beautiful life. That, my friends, is impossible to fit in a space-saving bag.