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Carrying the Weight of Chronic Illness

Carrying chronic illness can be very difficult, but there are ways to navigate the world without being crushed by the weight of what we cannot control.
PUBLISHED May 14, 2019
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.

Today I walked to work carrying several boxes that needed to go to the post office. The boxes were precariously forced into a very large reusable grocery bag. They were awkward and heavy. I couldn't quite get my arm under the strap, so I'd haphazardly shifted my weight to one side and then perched the bag of boxes on my forearm, suspending my arms in front of myself and doing my best impression of a T-Rex. Since I started working after my brain surgeries, I have tried to walk the mile and a half to my office as a form of meditative exercise, but bearing the burden of these boxes, I couldn't focus on where I was going, what I was seeing or what was happening in my world. I was consumed by the weight, by its discomfort, by its heaviness.

I stopped halfway to wipe the sweat from my brow. I put my bags down and adjusted my sneakers. As I felt relief wash over me with each roll of my tired arms and shoulders, I was suddenly struck by all the other weight I carry. Weight that is harder to put down despite years of physical and emotional therapies to help me do so. I carry my disease with me everywhere I go, I carry my mom's disease with me wherever I go. I let the pain wash over my tight neck. I peel the pain off of my body each morning as I struggle to unravel myself from the fetal position that I inevitably descend into each night.

I carry my illness every day and it is so damn heavy. But I realized that while I may not be able to "put down" all the symptoms of my illness, I can put down the burden of carrying it.

Let me explain what I mean a bit more. You see, I have never been the type to think that everything happens for a reason. I fail to find a reason why a tumor ravaged the nerves that run through my inner ear and face and filled up the space next to my brain. I fail to find the reason why my mom got cancer, or why the doctors didn't heed her warnings that something was significantly wrong with her body. I fail to find the silver lining in the suffering of my body, my mom's body, of our family's collective body. I fail to see that. Nor do I believe that from great suffering must spring great joy. We don't suffer in order to see joy. No. We suffer regardless of our joy.

We don't get to choose what happens to us. The world is unpredictable, so are our bodies. And I don't really think that every last thing must be explained. There are things that happen that we fail to understand. That's okay.

We can let that be okay.

That is what I mean when I say that even while our bodies may feel the suffering we've endured, we can put down the burden of having to carry it. For example, I remember going on a run once, while I was in Nice, France, on a glorious boardwalk watching the sun glint off of the sea. It was altogether magical but with each forceful step of my sneakers on the pavement I felt the pain rising through my scars into my face, and down into my neck. I started whispering to myself, "This pain cannot hurt you, it will simply run alongside you." Over and over again, I whispered these words to myself, washing over my body a gratitude for my enduring body. This mantra carried me for two miles. At the end of the boardwalk I sat on a big concrete abutment and watched the waves crash into my sore feet. I had put down the burden, I'd let it walk (or run) alongside me.

This past weekend I spent time with a woman who has become a near and dear friend to me in just a short while. She spoke to me of her life, sharing stories and telling me that I could be brave in my life, indeed that I already had been and that she saw me as a gift. I was struck by her words, her gentle but encouraging advice that I could advocate for myself in my life and her honest recognition of my friendship. It was a refreshing place to be in. I learned so much from her in the space of a few hours. I felt fortunate and grateful for her friendship, for her voice, for her grace, and in that gratitude, as we dashed across rainy sidewalks, I felt unbridled joy. Later, on her suggestion I watched Brené Brown's new Netflix special and she talked about how, in life, to feel joy, we must have gratitude – even when life challenges us.

I am not grateful for my disease; it was a crap thing to go through, it is very annoying to deal with and it still sometimes haunts me. That said, I am profoundly, utterly, speechlessly grateful for my life – for my access to treatment, for my doctors, for my support system, for my friends, for my family, for my puppies. I am grateful for my body that carries me, that for so long carried so much weight, and I am so grateful to be putting some of that weight down.

I can't fix my pain, I can't stop my symptoms. I can manage it all and that is work. It is in fact, a job I never applied for that I can never quit. That doesn't mean I am helpless. I can stop carrying the burden of that pain; I can invite it to leap off my shoulders and onto the ground and even while it persists right next to me, I can let it go. "Sure, walk alongside me," I will say to my burden, "but you better keep up because I have places to be."

I am letting go now. I am grateful to do so, and I am joyful to have made it this far.

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