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.
"I’m trying to turn my season of yes into a season of consideration. A season in which I weigh what I can do, with what I’d like to do, and with a radical honesty with my community around what that means and what a low-impact, beautiful, accepting, good life looks like. I hope that season lasts for a long time."
I've been really tired this week.
Actually I've been really tired every week since I started my new job. As my health has improved, and my condition has become what doctors would term stable, I have worked diligently to re-enter the world I imagine everyone else living in.
“You are in a season of YES,” I would tell myself. This is the season in which I dive into life headfirst, I jump back in. I neglected to realize that I was doing this horrible thing to myself. I was doing this thing that dismisses and diminishes any life lived while navigating disease and illness. I was setting up a false dichotomy between “sick Samira” and “not sick Samira” and I was trying like hell to be “not sick Samira.” I was imagining us as different people. “You’re practically healthy,” I would whisper to myself even as my body’s chronic fatigue and chronic pain were quietly getting worse. And I did say yes to everything in front of me. Yes to friends. Yes to family. Yes to work. Yes to exercise. Yes to pushing myself. Yes to no boundaries. Yes to work harder. Yes to proving myself. YES. YES. YES.
And with that season of yes, came the inability to say no. It had taken me years to learn how to get comfortable saying no to people and with that comfort with saying no there had been a quiet acceptance of what I could do, what I wanted to do, and what a good life might look like for me. “No, I can’t have dinner with you on a weeknight,” I’d say, knowing in my heart that choosing to have a full time job meant that if I work all day that there was nothing left for me to give at the end of the day.
But, I was in a new job, with people who had known me from a time when I was a relentlessly hard worker. I didn’t want to disappoint anyone and everyone I respected or loved. I couldn’t say no, I had to show them I was the inspiring, hard working, committed person they all knew and loved. I put endless pressure on a season of yes. Calling it that, naming it, thinking to myself, really urging to myself, “if you say yes long enough you will get to a place where you will have proven yourself, and then, maybe, you can relax.”
Of course, I love to say yes. Of course I want to have that dinner with friends this weekend. Yes, of course, I do want to celebrate your kid’s birthday. Yes, I really do want to be at family dinner. Yes, I do, badly want to go on that run with you guys. Yes, I want to be able to cover for you. Yes, of course.
But I can’t. My body screams at me. The room is spinning and I can’t hear and my ears are ringing so loud. Of course, I want this not to be happening. But, it is.
Chronic fatigue and chronic pain are common symptoms of my disease, even after it has stabilized. The space where the tumor had been, and the functions it took from me, leave my brain compensating for bad balance and single-sided deafness. Combine this with a touch of anxiety and depression and the best way for me to manage my health is self-care. After sustaining my body in time and space all day, vertigo and dizziness become the least of my worries when I return home and my fatigue is so crippling that it pains me to stay awake. It is in these moments that the fragility of my mind and body come at me full force and I catch myself fighting and fearing sleep, as though sleep is a resignation to my disease. In fact, in my worse moments, not being a superhero — not being an inspiring vision of what it looks like to overcome an illness – feels like a resignation to my disease to. I know, it’s a lot of pressure.
After my brain surgeries, I couldn't work out the way I used to. I've been a fitness instructor, a hardcore runner, so hardcore in fact that I got most of my friends into running races with me. Then I got my brain tumor and I couldn't withstand high impact activity and I put insurmountable pressure on myself which ended up with me pushing too hard and leaving my spinal fluid on the floor of my CrossFit box. It was then that I decided I needed to learn how to love a low impact life.
I walk my dogs everyday as a form of exercise, and it is in fact a form of meditation. Every time I see my hardcore friends doing hardcore things, I momentarily sink back into that place of yes, I can and yes, I must. I nurse my quiet feelings of FOMO. I wanted to be intense the way I had been, but in the throes of fatigue and the self-reflexivity that it forced me into, I realized that my intensity comes in quiet forms now.
My intensity comes in the way I nurture my disabled dog on our walks. My intensity comes from the way I commit to things with my whole heart. My intensity comes with self-knowledge, self-care, self-acceptance. A low-impact workout doesn’t mean you don’t try. Just like a low-impact life doesn’t mean it is a no impact life. I make my impact, in quiet, intense, powerful ways every day. So, it's a quiet intensity, a low impact intensity, but even a low impact leads to a ripple effect.
I’m trying to turn my season of yes into a season of consideration. A season in which I weigh what I can do, with what I’d like to do, and with a radical honesty with my community around what that means and what a low-impact, beautiful, accepting, good life looks like. I hope that season lasts for a long time.