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.

Samira Rajabi

It’s hard not to want to shut out the bad to hope for the good, but what if we learned to live with both and were all the more present in our lives because of it?

Between the lumps and bumps that everybody inevitably develops and the aches and pains that are both markers of the trickle of advancing age and decades of chronic pain, it can be hard to sense what’s what in a time of global catastrophe. Are my day-to-day feelings in my body marks of a returning disease or diagnosis or am I just a person living in a body that is imperfect?

I read the COVID-19 symptom checker on Google the other night, as the advancing omicron variant has me terrified to layer COVID-19 on top of brain tumor survivor with possible spinal fluid leak.

I woke up on my 36th birthday with a sore back, a dry and scratchy throat and fear in my mind. When I went to the symptom checker and read symptoms like body ache, soreness and dizziness and thought about the massive amounts of pain and imbalance I’ve learned to live with, I wondered glibly to myself, “How would I ever know if I’m sick?”

My husband is in recovery from a major spinal surgery. My mom is a cancer survivor. I have family members in chronic pain, others who are immune compromised. My family, like many families, manages sickness as a (routine?) part of day-to-day health.

Perhaps not routine to many but the privilege of impeccable health is not lost on us, so we’re careful. We don’t have the privilege to skirt caution to live as we did a few years ago or before pain gripped us physically or emotionally. We don’t needlessly gather due to COVID-19, saving our measured risk for precious family celebrations, hiding our smiles beneath whichever masks we’ve been advised to gather and wear at a certain time.

I used to live my life on that strange teeter totter of sick and well. You are either one or the other — that was my understanding from growing up in a world of socially constructed understandings of what good bodies do and look like.

When my body stepped out of this frame of normal, I was relegated to the sick side of things. But as we enter a third year of uncertainty at work and school with the pandemic, I realize that the uncertainty has been there for me and many people I love for a long time.

I also have come to recognize that this uncertainty doesn’t have to unmoor us in the ways it most certainly can. Though I must tread carefully through my physical world, mentally, emotionally and spiritually, I try to see the uncertainty as possibility.



I once had a pain meditation that didn’t falsely promise me that I would get better — instead it told me that we did not know how long this pain would last. It taught me to release my desire for a known outcome, for control.

Just like the common refrain from my father that “the only constant is change” and the words of a dear friend that “this won’t be this way forever,” the uncertainty reminds us that while perhaps disaster is looming, perhaps possibility is looming too.

I won’t ever not have the symptoms of my tumor, even as it appears to have become a shell of its former self in a corner of my brain. I will have fatigue, I will be dizzy, I will not hear well (or at all), I will contend with a pain that becomes more uneven the further I get from my days of surgical intervention.

I don’t know if that makes me sick, and I don’t know how to answer old friends who lovingly ask if I’ve recovered, gotten better, or if I’m well. The answer is always a yes and a no and a shrug and a moment of gratitude for my life and their care. I am well, but I am also tired and achy and maybe a bit busy.

I think we need a more capacious way of looking at our bodies than just sick or well. People are more complex than this duality we trap ourselves in. It’s a new year and I hear a lot of admonitions of the last year and a cautiously hopeful welcoming of a new year. I see people wanting to let the light in and forget the dark. I’m finding this too traps us in a similar duality. If we shut out the days, weeks, months or years of darkness we also shut out all the moments of joy, laughter and possibility that come in between those moments.

I was diagnosed with a brain tumor in 2012. At the end of that year, I wanted to release the events of that year to focus on a new and better one. But the fact is, I did more in 2012 than get a brain tumor. I loved my family, I learned how to be my own best support in my first year of grad school, I loved, I lost.

I spent the next five years in and out of the hospital and heard the same common refrain at the end of every year — that the new year would be better. I came to terms with the fact that so much of my life might need to be lived between doctor’s appointments and surgeries, so I decided to stop yearning to let years go and embraced what they were — even when they were punctuated with grief and loss.

I’m not advocating a toxic positivity, rather, a recognition that life can be relentlessly hard but that doesn’t mean we throw it away. And I know that most people aren’t truly tossing out their memories of the past year in favor of a new one, but if we spend our lives chasing a moment that is easier, calmer and less uncertain, it may get here but it may not.

After years of my own illness and watching family contend with pain, illness and loss, I’m not pining for a year with no pain — though it would be most welcome — instead, I’m trying to grab whatever joy is in this life, because it is the only one I have now.

For more news on cancer updates, research and education, don’t forget to 

Articles

A brain tumor survivor explains how she chooses to approach life with acceptance of the hard times rather than trying to throw them away.

Living With Uncertainty as a Brain Tumor Survivor in a Changing World

Recently, the symptoms of my brain tumor have been a lot worse. My vertigo is more noticeable. My ear on the side where my tumor was throbs at night and sometimes, weirdly enough, I drool.

I’m pretty sure it’s nothing, because the type of tumor I had leaves a host of symptoms behind. Plus, aside from these symptoms, I’ve been healthier than I’d been in a long time. I’ve cultivated a habitual workout routine, I’m eating well, and I’m working full time.

Given how much progress my body had made, I figured it couldn’t hurt to reach out to my good ole neurosurgeon for some reassurance to not worry that my progress would be undone. I sat down to write him an email, downplaying any fear in a playful and light tone. I got a message back quickly; my doctor is great like that. In the past, I’d grown used to doctors telling me I make things too big in my head, so I expected a jovial tone back. Instead, I was met with steady concern and confusion at my symptoms and a gentle “why don’t we go ahead and get that MRI since you’re five months out since the last one.”

As someone who had recently graduated to a yearly MRI, my heart sank at this. The funny thing is, I’ve spent years begging doctors to take my symptoms seriously. Years ago when I diagnosed my own CSF (cerebrospinal fluid) leak, every doctor and resident I saw at the time spent our first encounter trying to convince me that it wasn’t a CSF leak, only to discover that what I was feeling was happening was happening. So, I’ve always wanted to be taken seriously, but when this wonderful and caring surgeon and his team took me so seriously so quickly, it caught me completely off guard. As I told my husband recently with exasperation, “I want to be taken seriously, just not this seriously.” I was looking for reassurance not diagnosis; I should’ve called my mom.

The truth of the matter is, I am grateful that I will be getting an MRI, so I don’t have to spend vertigo-ridden mornings wondering if this is a normal symptom or if something is getting worse. In fact, I am very grateful to my doctor for taking me seriously the first time — for meeting me with concern and legitimizing what I’m feeling — rather than convincing me it’s all in my head. The reality is, with a brain tumor, it’s already all in your head! I think the thing that threw me was how quickly that familiar, yet forgotten, pit that I’d felt for so many years returned to my stomach. I felt the knots deep in my belly grab on and twist.

When I first got the doctors response, I rapidly started to text my husband that the doctor wants me to get an MRI and I spewed out a stream of consciousness message that, “I really don’t want to do it and I’m not going to get more surgery anyway so what is the point.” I had been a fitness instructor and fairly athletic before my 10 brain surgeries and it’s taken me years to get back to a place where I feel strong again; I didn’t want to go back to a place where I felt I had to rebuild and relearn my body. With a bark bigger than my bite, I kept declaring in those rapid-fire texts what I would and would not do if the MRI showed growth. But he knew and I knew that I’d likely do whatever the doctors advise me.

I sat in that fear for a while the other day. Eventually though, I got a work email with things I had to handle, and I fell deep into the distraction of a challenging job. In that space of distraction, I realized that the MRI is just the MRI. The MRI is not the tumor. The MRI is not a ticket to surgery. The MRI is not an indication of tumor growth. The MRI is just the MRI. Frankly, at this point, the only thing the MRI truly stands for is that the doctor took me seriously the first time, and that demonstrates power on both sides. So, I’m not going to let the MRI be everything that my years of dealing with a brain tumor have been, and I’m just going to let the MRI be the MRI. And with that, I’m going to try hard not to get stuck in that space of fear.

There’s still a pit in my stomach and I’m going to let it stay there for the time being. It’s not the kind of knotted up feeling that you can massage your way through or breathe deeply for anyway. It’s a deep ache that reminds you of a suffering that was unique to you and your family but that also reminds you of your resilience. I will not focus on that pit in my stomach, I will not indulge that pit. I will just note that it is there, that it can do me no harm and I will continue forward, present in this moment of my life, building strength in this body that carries me, because it is me.

For more news on cancer updates, research and education, don’t forget to

A brain tumor survivor’s recent onslaught of symptoms caused her to reach out to her neurosurgeon for reassurance that nothing was wrong. An immediate response to bring her in for an MRI caused her heart to sink.

The MRI Problem: Worsening Symptoms in Survivors Can Lead to an Unnerving Feeling

I was recently lucky enough to talk to my mentor about my future.



 future. I’m not great at talking about what might happen or what could happen because I never really assumed I’d have a future.

My brain tumor was pretty straightforward, no one actually thought it would kill me, but all the complications it dropped into my lap and my 10 subsequent craniotomies meant I was a woman in my late 20’s facing down the loss of my unknown future. And at that stage of life, while I was immersed in that season of illness, I was comfortable with that. I wasn’t happy about it, not at all. I hated it, but at my most precarious health moment I called a friend and said, “I don’t want to leave this world and I’m not ready, but if I did, I know that my people knew I loved them. I know that I tried my hardest in everything I did, and that I did what I could do to be in my life.” Luckily, that didn’t come to pass. I got to live more; I get to live more. I am so grateful for that. 

I was OK not knowing the future at that point. My fragility was all I could devote my energy to anyway. But, as soon as I was told I was well enough to return to work, to life, to activity — to return to the world of healthy bodies that seemed to universally feel guaranteed a future, I froze.

Now, years later as I settle into the comfort of adulthood, I am facing a precipice. I need to decide things about my family and if it should grow, I need to decide on career directions and options, to decide on what to save and how much. All these decisions are pointing so clearly toward a future.

My chronic illness and the traumatic ruptures of a decade punctuated by brain surgeries did very little to train me for this moment. Being so ferociously sucked into a space where all I had to do was survive made it more challenging for me to embrace mundane yet important decisions. Recently, I spent weeks roiling over simple yet important decisions and options because I could not fathom these many options being available to me. I couldn’t imagine the possibility of a future.

It seems illness, once it’s settled into your life, makes wellness a challenge to understand and confront. It seems that the longer you live precariously, the harder it is to recognize safety. I have had three stable scans in three years and yet, as each scan approaches, I feel a drop in my gut. I feel trapped somewhere between that woman who, upon facing her ultimate vulnerability, decided to find contentment in her life and the woman who exists now who, while wise, cannot see the forest for the trees. I am simultaneously the person content with the life I’ve lived because of the love I give and the person who feels massively confronted by basic decisions that could in some way jeopardize my future. The future I wasn’t promised, the future that feels like such a gift, I am too wary in diving in, for fear I might squander it.

I suppose finally having been given the option to live has made me absolutely terrified to screw it up. I guess the answer lies less in living perfectly but finding the middle between the competing poles of my mind. To be content with the life I live but to know that it’s OK to plan for a future. It is OK to dream and yearn and want and even, dare I say, advocate for the future I want. None of our futures were ever promised to us, it’s just that now I know that deep in my bones. So I’ll be planning my retirement, and mapping my career, and trying to grow my family - and if the universe has other plans for me, well then, plans change.

I got to talk about my future yesterday and it was really scary. I felt the fear in my gut and in my shaky hands but in being willing to even have that conversation, I acknowledged that part of being here now, part of surviving my diagnosis this long, means straddling the past and the future and trying like hell to remain fiercely present. So here we go, onward my friends.



Podcasts

A major diagnosis often forces us to shift the way we approach our lives, even once we’ve survived. So, what does it look like to chart a future having suffered in the past? And, how might we look forward?

A Brain Tumor Survivor’s Diagnosis Dilemma

I’ve got a unique perspective, I think, into the pandemic that has gripped our world.

I was, once, a patient with a brain tumor, who spent the majority of her time in and out of the hospital for several years. My condition, while chronic in terms of pain and symptoms, is now stable. I may have some barriers in terms of immunity but given that the latest test for my spinal fluid leak came back with the equivalent of a shrugging emoji, I don’t know how at risk I am anymore.

Now, I am not just a patient, or former patient, or survivor or whatever language you might use. I am, instead, first and foremost the family member of a couple people with cancer. These people matter a lot to me. These people are older than me, and thus more at risk in a pandemic that strikes people of a certain age more frequently, and they are by all accounts, wonderful, full of life and charming people. They are also, in their own ways, stubborn, sassy and strong people too. I miss them terribly.

I have, as of late, found myself paralyzed by the fear of bringing the COVID-19 virus into their home. I work(ed) on a large college campus. I spent my days pontificating with students about the nature of the media, health, illness and trauma. I spent time in close proximity with young people in a small office. I could have been exposed. We all could have been exposed.

I don’t want my parents to get this disease.

I desperately don’t want my mother, who is thriving in so many ways despite her metastatic breast cancer, to get this disease. Her cancer is gone, held at bay by monthly infusions and injections every third week. Already every small sense of unevenness in her health is enough to send me and my siblings down Dr. Google-internet-research rabbit holes. This, in combination with the deep depression I see so many of my family members, colleagues, friends and community members trying to keep at bay feels deeply overwhelming.

Being “home” for people who are or who have been sick is not such an easy thing to stomach. We spent time at home, convalescing, healing, being sick. Home is both a sanctuary but to be relegated to it can feel like a re-inscription of our illness on our precariously held up bodies. Home is both a gift and a place we long to escape as we long to inhabit normalcy like we used to before we were diagnosed.

I don’t feel like my mom loves staying at home. So, I beg her to every day. And she does, using the same means for escape as others, except she emerges only to go to the hospital, now all alone because of new social distancing rules. She sits patiently while receiving infusions, sending funny video clips to her sisters across the world. We all do our best to stay stoic in the face of our fear, our anxiety and our collective suffering.

And, I get the suffering thing too, because I’ve been researching trauma for a really long time as part of my job. So, I understand the dual longing to have everyone stay home while wanting desperately to go out, to be out, to get out of this situation.

I have a unique perspective into this pandemic but as it turns out, that does not mean I have any answers. So, I try to temper my worry for my family, for my mom, for myself and all those in the world with laughter, with joy, with writing, and yes with crying.

And each day when I inevitably laugh and cry, I try to send the energy of those feelings out into the world and hope they urge our communities to not just say they care about people like me and my family, whose world was already fragile enough but to demonstrate it by staying home, showing respect when they must leave to go to the grocery store or give care to people in need and to believe us when we say, there is a way through trauma. It’s just going to take time.

At the best of times, cancer is a difficult burden to bear, but in the midst of a pandemic, it's especially worse. But patients with cancer know the way out is by going through. 

Samira Rajabi

Living With Uncertainty as a Brain Tumor Survivor in a Changing World

The MRI Problem: Worsening Symptoms in Survivors Can Lead to an Unnerving Feeling

A Brain Tumor Survivor’s Diagnosis Dilemma

Cancer Sucks, Especially During A Pandemic

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