Samira Rajabi was diagnosed with a vestibular schwannoma, also known as an acoustic neuroma in 2012. She has had ten surgeries to deal with her tumor and its various side effects. She writes a blog about her life, surgeries, recovery and experiences at LivingWithHerbert.com. She is currently a post-doctoral fellow at the Center for Advanced Research in Global Communication at the University of Pennsylvania, where she studies media studies. In her spare time she plays with her two pups and spends time with her husband exploring Philadelphia.
It's hard to stop comparing our sick bodies to the people around us, but once we do, as both patients and caretakers, we learn to honor our own experiences and value ourselves in new and beautiful ways.
It's been more than a year since my last brain surgery. I have had time to recover, and I'm no longer acute according to medical professionals. I have done my course of physical therapy, I have returned to life as a functioning member of society and I take my medicine every day in such a way that it has become routine. Also routine is the precariousness of my daily existence, both in my mind as someone who survived a trauma, but also as a chronic pain sufferer. I know I am always one big sneeze away from a massively debilitating headache or one rapid movement away from losing my balance. I don't often talk about those things anymore, except with my husband, perhaps because they are tiresome and smack of complaints. I don't want to be labelled a complainer, thus any suffering I have is relegated to the margins. So, when the pain suddenly and needlessly makes a comeback into my life, I try not to complain. I assume everyone around me is as tired as I am, as rigid in their back as I find myself to be, and that their day-to-day existence feels as precarious as mine does.
The other day on my Facebook feed, I saw an article posted in a medical community that was admonishing people who tell their friends who suffer from chronic illness that they, too, are tired. The article’s premise is that to articulate your exhaustion to someone whose baseline of existence is always exhaustion is to potentially dismiss their testimony of their disease. I don't necessarily feel that way; I feel like we are all entitled to be tired. That said, the article forced me to offer myself something I'd been lacking as of late, compassion.
I need to show myself compassion and recognize that the work my body does for me each day is not just the work of living, but it is the work of continued healing, the work of continued function in a body that is a little dysfunctional in a world where high-function and ability matter. It is the work of a body missing nerves that allow it to hear, balance and move seamlessly. All of these things that my body does, things that are supposed to come naturally, are work. So, when I'm tired, I'm not just tired from the work of the day, or because of the hours I didn't sleep, or the coffee I failed to drink, I am tired because my body is working constantly, to keep me upright, to keep me smiling, to keep me engaged in my own corporeal existence. That doesn't mean that when you tell me you're tired I think, "no you're not!" it just means that I get to be tired, and I get to be OK with it.
You see, the thing is, we tend to compare ourselves to each other. They work smarter than me. He runs faster. She eats less. I hurt more. What we miss in these comparisons is that the way I feel doesn't change the way you feel, and the way you feel doesn't mean that I can't be unique, accepting, mindful and vibrant in my body, no matter how hard that body works. And, when we stop comparing and start to see our bodies as uniquely fascinating and beautiful as we are, we stop feeling so bad about the ways we feel. We own who we are, what we are, and the way we are.
And so today, I just want to say it out loud: I'm tired. My body is working overtime to function in the most basic ways and I am tired. But I am more than that, just as I am more than my tumor, my surgery and my anxiety. I am also a hard worker, a dedicated daughter, a devoted wife, a loving sibling and a loyal friend, and I need to remind myself that me being tired doesn't change that.
Recently, someone very close to me was diagnosed with breast cancer. I don't write about her journey because it is just that, her journey. But her diagnosis shifted my positionality in powerful ways. I went from being the suffering body in need of care to the body that cares for and must nurture someone I love. In this shift from patient to caretaker, I saw just how much the people who took care of me suffered in their worry, their love and their pain. They hurt in ways my body didn't, just as my body hurt in ways theirs didn't too.
My sick friend, we'll call her Angelica for now, worried one morning that her illness and the outcomes of it were making us, her troop of supporters and friends, miserable. She told us that she didn't want to be tired and she didn't want us to worry. It seemed neither of those feelings were in our control. She was going to be tired and so was I, in different ways, and we couldn't fix that for each other, so we should stop trying to protect each other from it. So, then we just tried to be honest, and to be present, and to be there with one another — me with my broken heart for Angelica, and she with her exhausted body. But in being real about where we stood, we were able to set our exhaustion aside. What is amazing is that once we did set all those feelings and the comparisons to each other, the world, and our past selves aside, we were left with one thing, love.
I hope that we can all stop comparing, start showing ourselves and each other more compassion each day, and, in so doing spread the love.