(Before we jump in, a disclaimer: This piece follows the author’s personal thoughts through the experience of getting a brain MRI with contrast. It is one person’s subjective experience of symptoms, testing, and results and isn’t meant to diagnose or provide medical advice.)
I’ve been thinking for a while now whether I wanted to share this post… it was written from within a tender, vulnerable space of fear and uncertainty. In many ways, I am still in that space. I have a diagnosis and some prescriptions to manage symptoms, but the root cause of my diagnosis (occipital neuralgia) is unknown, and some of my symptoms (mainly the twitching) aren’t fully explained by this. While I am taking a pause from pushing for more tests (it’s exhausting), there is a nagging fear that something else lurks beneath the surface.
This is rooted primarily in knowing that the experience of being inside my body now is radically different than it was just over a month ago. It stems from being uncertain how much of what I track and note as different is truly a change versus what comes simply from a heightened awareness of my body now that it has, in some ways, failed me.
Ultimately, I’ve decided to be vulnerable because I think these stories are worth telling. I share this story because I don’t want anyone to feel alone through this experience. I share it in gratitude that, whatever may be happening, so far it seems that it is something manageable, something that might even heal entirely with time. With the knowledge that for others who’ve gone through similar experiences, the end results were not the same.
Wednesday, August 7th
I write to you from a space of uncertainty, a space of not knowing whether I will hit “publish.” I write from a deep, vulnerable place within myself that I am only just learning to inhabit.
This year, I’ve become no stranger to doctor’s visits. I have truly learned to be grateful for my full time job and the truly amazing health insurance that comes with it. Within my privilege, I sit couched small and scared inside a body that I don’t fully recognize anymore.
Perhaps (okay, almost definitely) I’m being a tiny bit dramatic. I’ve said it before and I’ll say it again: I do not make a graceful, brave, inspiring sick person.
But of course, I don’t know that I’m truly sick. Or at least, not that kind of sick. Not yet.
2019 has given me so much pause. I spent months in physical therapy for ride-sided pain along my shoulder, back, and hip. Throughout that process, I was frequently impatient, irritable, terrified. But it was a comfort to know that physical therapy helped. It felt like a promise that nothing deeper was wrong.
I didn’t expect that to change. I still don’t yet know if it it has.
July was a whirlwind. With the help of my boyfriend and roommate, I packed up my belongings and moved out of our shared 2-bedroom apartment on July 28th, five days before my new lease began. The weekend of the first move into the storage unit, there was a heat advisory. So, when I developed a dull aching headache that didn’t go away for days, I wasn’t initially surprised or concerned. Dehydration, I thought. Heat exhaustion, I thought.
Then the shocking throbs at the base of my neck began, and so did my panic. Before this year, my body and I’s main difference of opinion has always been a disagreement about what size is appropriate.
Suddenly, I was monitoring every breath, every moment — what made the shocks worse, what made them stop? What was wrong with me? Were my thoughts still clear, ordered? Could I type okay? Walk?
I scheduled an appointment with my new Primary Care Physician, who I’d seen just a week prior for what turned out to be Runner’s Knee. I was scared she’d label me an anxiety-ridden hypochondriac, but I couldn’t help the timing my body had chosen.
As I waited for my appointment, I did Yoga with Adriene’s Headache Relief sequence, the only thing that seemed to momentarily pause the shocking throbs.
After a series of familiar tests like those I’d undergone with my back and shoulder pain, we determined that my muscles were fine, my mind still communicating with them effectively. I got a diagnosis of occipital neuralgia, a fancy term for “weird nerve headache that we don’t fully understand,” and a prescription.
This medication, my doctor told me, was primarily used to treat seizures in Epileptics.
My mind seized up and I forgot to ask any of the other questions I had. I was transported instantly back to a small bathroom in a one-bedroom apartment in Evansville, Indiana.
So clearly, I saw the massive pill bottle and smaller ones alongside, propped up behind the toilet. They stared me in the face often back in those days, reminding me that my college boyfriend could have a seizure at any time. Reminding me that he had to take other pills to counteract the terrible things his seizure medication was doing to the rest of his body while it kept the Epilepsy at bay.
I never read the label on those pills, and they were likely not the medication I was prescribed. But the connection forged itself instantly and irrational fear took immediate root. These were the same pills he took. These were the pills that had killed him. (I do not, in fact, know his cause of death — but anxiety makes its own reality sometimes).
Nevertheless, the pain of the shocks was unbearable and I was determined to return to my daily life. I took the pills as directed, though I woke up in the middle of the night in a sharp, sudden panic, mind racing. I became convinced that the pills would somehow work in reverse, that the slight facial twitch I developed by day three was a warning sign for a seizure that was sure to come.
The little orange bottle warned to contact your doctor if you experienced “increased fear,” and I wondered how to parse that out from my own anxiety. Is this increased fear medically induced, or is it because of the connections my mind has forged? I’ve lived with my own anxiety for as long as I can remember, and felt I understood its rhythms — this was different, and I was scared.
The slight facial twitches weren’t altogether that concerning, considering an eye twitch is a common stress symptom for me. Between the move and the Gaba, I’d become a tangled up ball of nerves. Still, my doctor recommended I stop the medication.
Within the next few days, I began to notice other strange things happening in my body. A muscle in my right leg started having weird bouts of twitching — I sat in traffic and watched it twitch and bounce. The right side of my face felt numb, distant. I smiled and flexed in the mirror, trying to discern any outward change, but there wasn’t one.
My doctor had no explanation for the right-sided facial numbness, though I saw in her After-Visit summary that she noted my “extreme anxiety about [my] condition” as a possible contributing factor. The twitching she believed to be fatigue. “But I’ve been sleeping,” I told her. “I’m not waking up in the middle of the night anymore.”
She referred me to a neurologist to see if I needed further testing. Apparently, getting in to see a neurologist is quite the task. I called twice, once to a specific office and then to the centralized appointments line provided by my insurance company. Both times, they told me I couldn’t be seen until late October. It took everything in me to push, to insist that I had to be seen in the next two weeks like my doctor recommended. Finally, I got a call — there was a cancellation and if I drove an hour in traffic, I could be seen.
So, I drove. Time in the car has become difficult, too much time to sit and focus on my body, feel all the ways it doesn’t feel like it should. Throughout the stress of moving and medical concerns, the pain in my back and hip had returned. The whole right side of my body an orchestra of pain and/or numbness, feeling like a wax figure slightly melted on the right side.
The same old tests — focus on me, touch your nose, then touch my finger, kick your leg out, pull your leg in, and so on. The neurologist threw some new things into the mix and determined that everything seemed normal from the outside.
And then he said what I knew I needed to hear, but had so hoped not to — “I’m going to order an MRI. What am I looking for? Multiple sclerosis. Brain tumors.”
I try to cling to what he says after this, “which I think is unlikely given your age and history.” But my brain tosses the words around and around anyway, whenever I have a quiet moment alone. I force myself to listen to my therapist and avoid WebMD. It doesn’t matter yet that I know very little about MS except to be scared, except that it could change my life. “I don’t need to know until I need to know” is my mantra. “Unlikely given your age and history” is my mantra.
I have seen friends go through medical scares, through testing, through diagnoses that changed their lives. Watched them go from healthy to chronically ill, sometimes so quickly I could barely believe the change. I have always held those experiences at a distance, admittedly somewhat cold, unable to comprehend the gravity of what I’d never been through myself.
Now I understand how hard it is to go about the daily when half of your brain is on a never-ending journey down the “what if” spiral. The unknown is a minefield for anyone, I’m sure — I can’t speak for what it’s like when you don’t have anxiety, but I can’t imagine it’s easy for anyone. I do yoga, I meditate, I practice my four-part-breath with mantras. But even so, fearing the worst creeps in — that the MRI will show something I’m scared I’m not ready to deal with. A brain tumor? MS? Something else?
The doctor phrased it like ruling things out more than a great deal of concern, and yet… and yet the odds never really matter when it’s happening to you, do they?
Thursday morning at 6:45am, I will get the first MRI of my life. I will do it alone and I will try to be brave, try to remember there’s nothing to fear from the test itself. Try to hope the test will tell us that whatever is wrong isn’t the Big Bad I’m so afraid of. Try to hope that I can learn to be a brave, strong, sick person if it is.
Of all my mantras, “I can do this” is the one I’m relying on the most right now. I don’t know what “this” is yet, but I have to believe I’m able to meet it when I do. They say the Universe, God, whatever power you believe in, never gives you more than you can handle. If I get a Big Bad diagnosis, it’s going to be hard to believe that. As much as I cry and moan about a bum knee or some back pain, I can’t imagine who I will be if so much of what I love gets taken from me — if I can’t run, if I can’t hike, if I can’t be the way I’m used to.
Thursday, August 8th
At slightly before 6:45am this morning, I had my MRI. The night before, I took better care of myself that I would have imagined possible. Prone to wallowing, I’ve struggled to force self care instead of crumbling under the weight of the process. I took a long walk in Frick Park, with intermittent jogging, just trying to inhabit my body and appreciate what it could still do.
When I got home, I called a friend, and we spent well over an hour catching up and commiserating over the process of medical testing and trying to parse physical and psychological symptoms. Strangely, talking about the Scary Thing with someone who was also going through a similar Scary Thing helped — rather than amp up my anxiety, it normalized the experience. Being the only young person in a room full of Olds getting tested is normal. It happens. I am not alone.
I woke up at 4:30am to get dressed and head to the hospital. Because I’ve never been there and because I didn’t know what to expect, I left too early, per usual. What kind of person arrives 15 minutes early to a 6:15am appointment? Me.
Inside the hospital, I followed my printed instructions for where to go. I was the first person in the radiology waiting room and got to quickly fill out my paperwork and go back to change into the hospital gown. Before she led me back, the nurse printed a medical bracelet and slipped it around my wrist.
At this point, things began to feel a bit Too Real. I haven’t worn a bracelet in a hospital since I was a kid with broken bones, and sitting there in my hospital gown waiting for an IV to be placed felt entirely new and foreign. I was alone and I felt like a patient, suddenly, before I felt like a person.
Luckily, I didn’t have to wait long because, again, I got there 15 minutes before the 30 minutes early I was supposed to. As soon as I changed into my gown (and snapped a selfie because why not), another nurse called me back. She asked a number of questions to make sure there was no metal lurking on or near my body, and then she placed my IV.
While I’m not squeamish about needles at all, having someone insert an IV that’s just supposed to stay there for a while felt weird and unfamiliar. I walked stiffly, keeping my arm at my side. In the (empty) waiting room, a few tears leaked out. I was alone, in a hospital gown, with a medical bracelet on one wrist and an IV port in the other. I felt like a sick person, and I couldn’t help but imagine how often I’d be sitting here if the scans showed the cancer or MS I feared. This would become my new normal.
I went through all of this rapidly because, in less than a minute, the MRI tech appeared and whisked me away towards the machines.
The tech asked me if I had been diagnosed with MS, which was jarring. “No yet,” I said. As he got the machine set up, he asked about my symptoms, seeming increasingly surprised I was getting this test. This calmed me. “My doctor just wants to rule it out,” I said, as I popped in my earbuds and lay down on the bed.
I could tell already that, in spite of my Wednesday night worries I was about to learn I was claustrophobic, I would remain calm. The room wasn’t as scary as I pictured, more plastic coated than scary metal gleaming. The ceiling above was painted with a realistic mural of tree and sky, inviting me to imagine I was lying somewhere lovely as I tried very hard not to move.
People advised me it would be loud and my head might be strapped down. So, the noise didn’t seem that bad and the fact that I was in a sort of fancy helmet with headrests on the left and right wasn’t too bad. I lay there and let a few more tears fall out, willing the machine to take photos of my beautiful, healthy brain.
I briefly pretended to be an astronaut as folks suggested, but since I got very sick in a space simulator at Disney world, this wasn’t particularly comforting. I regret that only after the procedure did I think to pretend I was being hooked up to Cerebro on an important mission for the X-Men (feel free to steal this idea, fellow nerds). Instead, I just thought about walking through Frick Park like I’d done the night before, thought about how interesting the procedure was, and stayed pretty calm.
The worst was the waiting. As soon as I left the hospital, I felt the tension of wondering when I’d get the call. I took myself to a coffee shop for a muffin and a coffee to celebrate getting through the test, but I couldn’t feel fully celebratory yet. I didn’t know how to relax until the results, sitting out there in the world, were communicated to me.
Would it be today? During our Mental Health First Aid Training? Should I tell the instructors I might need to step out? Or would it be tomorrow? Would I find out during a session at my weekend yoga retreat?
Thankfully, the phone rang (or rather, my Fitbit buzzed silently) just before we broke for lunch. I ran out into the hall probably more dramatically than necessary, only to have my phone immediately drop the call due to being in the basement. The suspense flooded my body with nerves and I felt like I was going to fall over as I rushed up the stairs to call them back. Thankfully, they called me after a few minutes of my listening to menu options trying to figure out how to get in contact with the person who’d called.
The words were muffled (bad cell service) so I had her repeat twice to be sure: Your MRI results are normal.
My beautifully anxious, frequently depressed, but infinitely me brain is not housing a tumor or MS diagnosis.
Relief flooded my body with such sudden change that for a moment I thought I might fall down. Even if I didn’t have an answer, I had what I desperately needed — the knowledge that I did not have the diagnoses I feared.
I’m so grateful for my health, for the fact that my symptoms are well managed on my new medication/with good stretching and staying calm. While more appointments may be in my future as we try to figure out what is going on, I feel so freed by finally having the tests I needed to alleviate some of my worst fears.
I know this is not the experience everyone has, that some people get that other call, and their lives shift dramatically to encompass a new reality. I’m grateful to know that right now, this time, that isn’t me, and I am also grateful for the new insight and empathy this experience has given me. Before, I couldn’t understand how it felt to undergo test after test without answers, to fear the worst and wait to find out if it’s come to be.
Maybe it’s cliche to look for the lessons in life, but it’s how I prefer to move through the world. This has given me more empathy, more compassion, a greater lens on life. Probably it’s given me the seeds for an essay or two in my future, as well (writer brain).
So I write to you now from a place of slightly less uncertainty and more knowledge. A place of greater understanding and a stronger repertoire of coping mechanisms. Thank you for listening, and I hope that it helps if you ever find yourself in the in-between.