Illness is a solitary endeavor, but you still need people to ground you and give you strength as you move through it and face tests, treatments and recovery.
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.
Just about two weeks ago I had to get a follow up MRI to see how the “enhancement” where my tumor was had changed since surgery and to check for hydrocephalus. For various reasons, not excluding complicated interpersonal relationships, a misplaced and bloated sense of pride, and a busy schedule, I went to this MRI alone. This, in and of itself, is not a bad thing. I wasn’t (at the time) upset to be in a waiting room by myself, nor was I disappointed that no one had done their normal overly enthusiastic push to join me in the horror show that is a doctor’s appointment or scan. I suppose I was even a bit relieved for in my times of greatest pain and turmoil I find that even the love of the people that give me the most can be confounding. Their intense need to protect and save me from any physical or emotional pain turns my deeply rational interactions with my health into the stuff of bumper stickers, quick and trite phrases that remind me how far I have come, and how far I have to go. It is the equivalent of a “You can do it!” sticker placed on a mediocre homework assignment in grade school. I love them for that. I also need that a lot of the time and swell with gratitude when I think of my family and family of choice. But sometimes, I need quiet. It is in the quiet, when you are forced to face your fear with no one to sugarcoat the realities of your every day that you name that fear, recognize that it does not serve you and you can choose to let it go. It is only when you stare down a waiting room filled with the fears and anxieties of others that you let go of the hopes and desires of others and find strength of your own. Facing down your fears is a solitary endeavor — you need support to keep you grounded and strong — but you must face them alone.
An MRI is a solitary endeavor too. This MRI ranked among my top five worst MRIs. Given that I have had more MRIs than I can count or even remember, that’s saying something. My skull is tender from repeat craniotomies. My newly deaf ear rings with phantom sounds that sound like panicked screams urging my brain to hear them. The trigger points around my head and neck twitch and tense, shooting pain down my arms and up into my face. With each pounding of the magnets of the machine, the physical pain becomes sharper, more pronounced. I am alone with my pain attempting somewhat fruitlessly to find a peaceful moment of reprieve in my mind’s eye. I imagine the greenest grass, as I lay (in a fabulous midi-skirt and blouse) against a white picket fence. Beautiful flowers in full bloom send soft fragrance into the air that carries over me in the breeze. The sky is a perfect blue, the clouds are ideal for watching. I try to find that place. It’s usually not so loud at that place. As the intense physical pain reminds me of my weakened emotional state my breath becomes shallow. I refocus my energy on deep breaths, trying to fill my lungs without movement. The scan lasted over an hour and a half. In the grand scheme of life, it’s not much, it’s already forgotten. In the grand scheme of illness and anxiety, it felt like a day had gone by, with me missing the world turning because I was trapped in a giant tube, turning my body inside out, to see for a moment what was inside.
It was lonely inside that machine. No amount of love or support or positive thinking would change the fact that in that machine, in that moment, I was completely alone. And I felt alone. I came out to the clean and nice waiting room, filled my purse with what I consider to be “MRI reward cookies,” grabbed a Gatorade and sat waiting for my CD to be ready. While I was relieved not to be met with hollow certainties and platitudes that “it would all be OK,” the loneliness had gotten to me. I was about to let the physical and emotional struggle of the last hour conflate itself with the struggles of the past few months, when I remembered a quote from a dear friend. It’s about bamboo, about the way bamboo can bend and change without breaking, it can adapt.
I kept telling myself, adapt to this. Change with this, bend with this. Deal with this. So I decided not just to be bamboo, flexible and strong, but to be an Aspen tree. Aspen tress, you see, are connected fully to their root system, so that even when you see a solitary aspen, it is connected through a beautiful root system to all the other trees. Aspens, well, they are each unique, marked and marred by the environment but each stands tall. They are solitary trees, flexible and capable of being weathered, because they are connected, they are grounded. I thought to my “root system,” most obviously the people who love me and who I love so very much, but then I thought to the grounding I have found within myself: my ideas, my heart, the balance of self and others. In concert with all the love I am given and have the privilege to give, I can be flexible.
I wasn’t so lonely anymore.
This was all crystalized the week after the MRI, when at sunrise I hauled my tired and achy body out of bed to fulfill an obligation to 200 kids I volunteer with at a Rotary Youth Leadership Awards summer conference. Unsure of how hard I could push my body, I vacillated on whether or not my presence was really needed or beneficial on the sunrise hike. As we hiked in silence in the dark, my heart was beating fast and my balance waned. I felt alone in my fear, alone in my struggle. Then I saw fellow Rotarians keeping a careful watch on me. Then I had one of the young, ambitious leaders, a camp counselor come take my side, hold my hand and help me up. As the light increased with the pending dawn I saw more and more the people around me who I know and love dearly keeping a watchful eye on me as I sought to show up for them. Two hundred people made it up that mountain that morning, each one alone — hiking, too, is a solitary endeavor. Together, we formed a strong foundation, a root system, keeping us grounded so that we could ebb and flow with the changing tides of life. As the universe painted the sky for us that morning, I knew who I was and what I am fighting for in life.
I wasn’t so lonely anymore.
I am still waiting for my MRI results. I looked at the scans over FaceTime with my sister, a pediatric geneticist, and aside from realizing that my brain looks like a sad lion at certain angles, we came away not knowing much. I have a radiologist’s report full of convoluted language and unclear facts about my brain, so I am waiting to meet with my surgeons here and in Arizona to know what the scans showed. So am I OK? I don’t really know. Not physically anyway. What I do know is that in that solitary suffering, in that lonely MRI, I came out learning so much, allowing myself to bend with the winds of change, and still knowing firmly where I stand as a person.
New people that find out about what I have been through with my health often want to assure me that I will be OK, my body will go back to “normal” and I will come out stronger on the other side. Maybe I will, but maybe I won’t. To me, that’s not the point. I may not survive this. I will try to survive and I believe that I will, but the fact remains, we will all come up to things in life that our physical and emotional bodies cannot survive. That’s OK. What is most important to me is staying present in the journey, while I am lucky enough to be on that journey, even when it is suffering, and even more so when it is joy.