There seems to be some kind of assumption in society that once you are diagnosed with something scary, chronic, or debilitating that your desire and will to fight goes up. It is as though people assume that the scarier the name of the disease the more exponentially the will to beat it becomes. It's just that, isn't it? We're a culture that beats things. Attack us and we'll attack back with a seemingly endless gusto. Be strong and all else will follow behind you. It's a culture that tells us the answers we seek are within ourselves, when often times they simply aren't. No amount of me finding peace with my condition, being prepared to fight and having a good attitude will fix the ailments that are wrong with my body. Those things certainly won't hurt me — they may, in fact, make the struggle more manageable, but they won't fix the problem. I can't just will this away. I can't look inward at the power I have and reclaim it and somehow expel a tumor or CSF leak from my body. But hey, it won't stop me from trying. So I do try. I look at inspirational songs and quotes and pictures ... and I hope.
I suppose that's why people keep telling me to "keep on fighting." It's just that sometimes when you've fought on and off for several years, you get tired of fighting. And you can't really figure out who you are fighting because you're fighting something that's a part of you, and you're sacred and beautiful. Are you fighting a disease? Are you fighting a condition? I'm not sure where to direct my fight.
I just got through my latest hospital stint. What was an anticipated outpatient surgery ended with six days in the hospital strapped to a bed with an alarm on it with a drain slowly siphoning out my spinal fluid. It was painful, dehumanizing and not a whole lot of fun. I was lucky to be constantly surrounded by loved ones and visitors who tried to bring my spirits up. Ultimately, though, it was a painful and difficult week with few bright spots.
Hospital stays are tough and seep your humanity away. They leave you listless and wondering, "What the hell am I doing this for?" I saw my mother at my bedside day and night, not always eating and sleeping as much as she should have and I wondered, "Is this worth it?"
I am not meaning to say is my life worth fighting for, but with all the debates of quality of life and death with dignity and who gets to choose who dies when and how, I wondered, for which of us was this a fulfilling life? Before you panic and your alarm bells go off, this is not the statement nor a marker of a suicidal woman. I want to live. I want to thrive and I will continue trying to do so. I am just trying to understand: When all you have is stints and moments of life between prolonged periods of sickness, what do you call that? Do you call that life? Do you call it suffering? Do you accept it for what it is? Do you deny it from teaching you what it is meant to teach you? What do you do with chronic pain or illness or just the exhaustion of being constantly told to fight?
My body is tired.
My body is weak.
My body doesn't want to fight.
My body wants rest.
My body wants joy.
My body wants lightness.
I had gone from the optimistic girl who was willing to fight anything to the one who just wanted the ordeal to end. My jokes went from silly and jovial to biting and cynical and right behind them was a quick temper ready to lash out at anyone nearby. I was perturbed at the lack of doctors' visits and the true lack of information. I wasn't sure how long I would be a prisoner in my hospital bed. The reassuring sad eyes of nurses helped, but not enough. I felt helpless and alone on a raft floating in a sea of well-meaning well-wishers. I was mad at everyone for caring and pushing doctors' orders on me, and then pissed when they wouldn't. This fight they kept telling me I was fighting, I couldn't understand it anymore and I didn't know how to fight. No one ever taught me how to do this, and I am a perpetual student of life.
"You will beat this!"
"It's almost over!"
"It's just one small part of your journey!"
"You're so close!"
I'm so close to what exactly?! At this point, it has been so long since I worked on my dissertation, I am essentially starting over. My day job that pays my bills has been scrambling to cover for me. I am not exactly sure what I am fighting for anymore. Sure, if I sat down and made a list I would come out blessed and this would all sound like the ungrateful rant of a tired sick woman.
I have a marvelous and beautiful family and another beautiful family of choice comprised of friends, mentors and teachers. I live for them every day, but what do I do for me? What do I go back to? I know I go back to all of those people who love me, but if my purpose now is just to fight this, if I win, what then? I've never devoted as much energy to anything as I have this, so what the heck comes next?
You see, the longer you go just being a sick person, biding the time between doing sick person things like tests, MRIs, surgeries and treatments, you lose the things that make you ... you. Yes, new things emerge and you learn and grow and that growth is magical, but sometimes we miss that person that got us this far.
I remember crying in the hospital bed as they informed me that my one night stay would be longer. As my one working eye teared up, I blubbered that "pretty soon I won't have anything to go back to."
So when I think of continuing treatment, of fighting more, giving it my all, the answer is no. I just have none to give — not to doctors, not to treatments, not to "beating this". The answer is no.
I know that if this surgery didn't work, the next step is a shunt. It is a tube that lines your spinal cord and drains the fluid from your ventricles in your head down to your belly. It means drills in skulls and incisions in new places. I don't want it. I don't want it, not because I am scared or it would be hard. I don't want it because I don't want to fight anymore, at least not right now. Shouldn't it be a patient's right to decide when she wants to be a patient and when she wants to be a human? I can tell you, while you would think those two things are not mutually exclusive, they often feel like they are.
I guess what I am trying to say, is give me a minute. Give me back some things to fight for that are not just encompassed in this tired vessel I call my body, and let me discover some new ones. Then, only then, when I can joke and laugh and smile with abandon, can you cut me open again. So if you find yourself battling a decision, having to give a yes or no, it's OK to take a moment ot figure out or find whatever beautiful thing it is you want to be fighting for. In the meantime, it's OK if the answer is no.
Yes, of course it should be a patient's right to decide when she wants to be a patient and when she wants to be a human. In fact, the real challenge is to be both, simultaneously, since being a patient often includes having your power stripped away by the very system that is working to fix you.
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