Recovery is an up-and-down process, and it's okay to show yourself compassion through the ups and the downs.
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 received good news about a month ago. The doctor was close to certain that he had successfully addressed the spinal fluid leak that was caused by the brain surgeries that saved me from my brain tumor in 2012 and 2015. The spinal fluid leak had been a worthy adversary, despite the expertise of the best surgeons in the world, sophisticated medical tests and a whole lot of effort from all parties, the spinal fluid leak and its various effects on my life were persistent, chronic and quite frankly a nuisance. I was thrilled to hear the news. The moment I was hugging my family members and loved ones after that fateful appointment and feeling a weight of years of pain start to fall away will always be one of the most poignant moments of my life.
I am now on the road to recovery, a road I had not been able to see for a very long time. With the results of my medical tests being so positive, I was surprised to find a persistent, low-level anxiety always bubbling under the surface, and a full-on panic attack just a quick trigger away. It took me a moment to understand why good news had seemingly thrown my mental health into a tizzy. I wanted, and perhaps still want, to return to the life I had lived before I had numerous surgeries. I put immense pressure on myself to feel better, despite the doctor and my support system insisting it would take time. As I watched others go back to their lives, with the burden of my care having been lifted from them, I struggled to keep pace. I put an insurmountable amount of pressure on myself to abandon any sense of being proud of my unique experiences and range of abilities and disabilities, and tried hard to erase the “sickness” from my body. I would continually insist to myself, “You have a chance to take life by the horns, you have to work hard!” I wanted to work hard. I wanted to excel. I wanted to stop thinking about surgery and pain and medicine and all of it.
The problem was, and sometimes still is, that I don’t know how. After over a decade of pain, 10 brain surgeries and the last four years of spending ample time in and out of the hospital, combined with a whole host of other good and bad life experiences, I didn’t know how to relax. My body was firmly stuck in flight or fight mode. Without adrenaline pumping through my ever-ready veins, I didn’t know how to exist. I had to retrain my body, I had to retrain my mind and that is not a quick process; it’s not a process that is over. I have to learn to exist alongside pain, not react to it. I have to learn how to be a human, not a sick person. I had to and continue to learn to highlight what makes me special in this world, outside of having had a brain tumor.
I managed to name a few things I loved about myself that make me special and were not my illness: I’m funny, I’m hard-working, I’m loyal, I’m smart, I’m thoughtful, I’m passionate, I’m caring, I’m committed, I’m strong and I don’t give up. None of those characteristics exist because of a brain tumor. None of those things stopped being true about me because of brain surgery. I had to figure out how to honor those things in myself.
I did the work to find a trauma therapist to talk me through my anxiety and I do the work to take ownership of my mental health, and it’s working. I also set out my best laid plans to exercise, to make it to physical therapy, to work hard and finish my Ph.D. I have alarms that go off with enthusiastic labels that read, “Exercise! You can do it!” and others that remind me to “Write two pages of your dissertation, you awesome scholar, you!” At first I tried to diligently stick to a schedule. Routine was my friend, I told myself for a while. Then after about two weeks of a fast-paced lifestyle, lots of medicine for pain, lots and lots of caffeine, I found myself crashing hard on the couch. The alarms would go off and after one or two times “snoozing” them, I’d simply turn them off. Soon, I didn’t even turn them back on. I took the alarms off of repeat and I slept. I slept hard. I was so mad at myself. I’d failed at a forceful, powerful return to life. I was tired. My therapist, my family, my friends and my physical therapist all reminded me to be patient with myself, to remember I had had surgery over and over again. It was okay to be tired. I was told to be compassionate with myself. I was just tired of reminding myself what I’d been through, I didn’t want to think about it. I don’t want to think about it. I am tired. So I sleep, and I sleep hard.
Generally, when I sleep hard, I wake up in pain. Having slept through all the pain signals, I wake up to the pain, sharp and stabbing. I hear my boyfriend, my partner’s voice in my mind, “Breathe, don’t panic, keep breathing.” I imagine being shrouded in the arms of love. I imagine all the support from all my friends, and as the pain pulses hard I feel a sense of calm wash over me. A sense of calm that even a few weeks ago did not, could not, exist. Last night I woke up at 3:42 am, my neck throbbing, my eyes pulsing hard against my eyelids, my head overwhelmed with stabbing pain. My hands were shaking as I reached for a bottle of pills in the dark. I couldn’t get it open, I couldn’t exert enough force. I knew I had an easy open bottle of ibuprofen in my kitchen. I wobbled out of bed, careful to hold on to the edge of the bed as I guided myself out of the room. I texted my boyfriend, almost to acknowledge that he is the voice in my head beckoning my breath and bringing me calm. I got an ice pack, I took the medicine, I waited. No relief, just quiet throbbing. I took a muscle relaxer hoping to quiet the tension in my neck and back. I waited. Relief was slow but my breath was calm. At a low volume, I played a favorite episode of a familiar show on Netflix on my iPad, hoping for distraction. I held my Theracane against my neck gently, waiting for the muscles to relax. I waited, I withstood, and finally, around dawn, I found sleep. I didn’t panic. I didn’t return to an adrenaline filled fight or flight response. I just waited, with the pain, allowed the misery to exist, alongside my frustration but also alongside my gratitude. I remembered throughout my hours of pain to acknowledge what was going right: I was breathing, my heart was beating at a reasonable rate, I was alive and I was lucky.
I think that’s progress.
I’m not sure if or when I will be totally “recovered.” Many of the remnants of my surgeries won’t go away and the deficits they caused will always impact my life. I won’t however always react to them. I once listened to a meditation that asked if, when in pain, it would better serve someone to be an old oak tree bracing against the storm, tense and cracking, or a tall grass that could ebb and flow alongside the storm, flexible and graceful. I used to want to be the tall grass in the storm moving with all that life threw at me, but now? Now I want to find my way out of the storm. I will always know that the storm is there, that it is ravaging much of the terrain I value, and I will exist alongside of it, with a sturdy umbrella and a strong will, patience, calm and deep breaths.