Sitting in my chair, my palms are sweaty and I can feel my heart beating out of my chest. You would imagine that with symptoms like these, I’m about to walk out on stage or maybe sit an exam that I haven’t prepared for. But I’m in my doctor’s office, waiting for my name to be called. To explain why this is such an ordeal, I should start at the beginning.
When I turned five years old, I started to experience pain in my back and my right leg. In my attempt to describe it to my parents, I said it was like someone was stabbing me in the back. After a battery of tests and a rather dubious diagnosis of it being ‘all in my head’, an MRI finally revealed that the problem was a tumor on my spine: a spinal meningioma to be exact. Meningiomas are one of the most common tumors, however getting them at five years old is not. This was the beginning of a string of seemingly unending appointments where doctors would always tell me how ‘complex’ my case was.
After three surgeries and one round of radiotherapy, my parents and I were still operating under the false impression that maybe this whole ordeal was all just a blip and that, at the age of sixteen, normal life would resume. This theory was quickly put to bed when, at twenty-two, I underwent a further two surgeries and more radiotherapy. With each appointment, the stakes seemed to be raised and future horrors, like wheelchairs, were brought up again and again. The tumor’s grade was upped too: from grade one, which is slow growing to grade two or ‘atypical’, the more aggressive form.
Even though I was being told that the condition could result in loss of function below my bellybutton, I always hoped I would be the lucky one; like a volcano, my tumor would just end up eventually becoming dormant. That I would get away with just a slow gait and a slight limp. With each new specialist, I saw another aspect of my life, which I had not yet considered, being affected. The ability to have children of my own and carrying them myself was now being called into question. I then learned that there was a fifty-fifty chance of my passing along the faulty gene responsible for these endless appointments.
Fast forward a bit, and after living in relative peace for four or five years I started getting an odd numb sensation in my feet. When walking, one of my feet would suddenly feel ‘dead’, like when you stand up quickly only to find that your leg is asleep. At first, the doctors weren’t sure whether this latest development was just ‘wear and tear’: the result of all the damage done by the tumors and surgeries over the years. Initially, my theory was that it was the result of my having to lie in an uncomfortable position for a particularly nasty MRI. Once the numbness spread to both feet and all the strength seemed to drain from my legs, however, the medical team was in agreement. The tumor, the issue never far from my mind, was growing once again. Even more upsetting, this occurred just as I had returned to University.
When I went to consult my new neurosurgeon, he nicely, but matter-of-factly, told me that another attempt to remove the tumor could paralyze or kill me, and most frustratingly, that there was no guarantee of removing any of it. So I continued on, trying fruitlessly to keep attending University and gain some strength through physiotherapy. What should have been a time of gaining independence and freedom was instead a time of unimaginable stress. It was bad enough that I had a good ten years on most of my classmates, seeing as I was now twenty-seven years old, without also having my body start to shut down. It also didn’t help that I had chosen a career in the medical sector where having a functioning body is seen as a must.
One crutch became two and eventually I would have to give up University altogether. After struggling through my first year, I decided to defer second year, but when the time came to go back, I was in an even worse condition than when I’d left. I had to give up the lease on my flat and move back in with my parents. I went from being in University full time to spending most of my time with my parents, doctors, and physiotherapists. Matters weren’t helped by the fact that I seemed to be at constant loggerheads with my parents. I felt like I had gone back in time and become a frustrated teenager again. I spent most nights unable to sleep due to the pain running down my legs. During the day, I would lie on my couch and constantly have the urge to stand up and walk around outside. With each activity I was unable to complete the frustration would grow. As time went on, I did manage to find ways around the tough jobs; a kind of self-defense mechanism to deal with what was happening. Still though, each doctor’s appointment was the same; telling them all that had happened and having them say that they didn’t feel like anything could be done about it.
So I sit in my chair—my wheelchair that is—and wait for yet another appointment to be told once again that mine is a very complex and difficult case. This appointment goes differently though. This doctor thinks that we have no option but to try something. Exactly what I have been screaming in my head for the last year. I would be having another surgery and then a week of intensive and brand-spanking-new radiotherapy. Suddenly, there was hope again; hope that I could get back to my life and former self.
Of course, things didn’t go quite as smoothly as that, as seems to always be the case with this horrific condition. The latest surgery was unsuccessful which reduced the potential benefits of the radiotherapy. On the bright side, however, I am now off all my pain medication. With no small amount of trepidation, I went to rehabilitation to try and get back up on my feet. After a few weeks, I was able to walk with a walking frame. While I was there, I also started to see things differently. The outcome I had feared most and worried about for so long, being in a wheelchair, had finally happened. In a way, it is a relief that I no longer have this threat hanging over me. Now I just have to try and get on as best I can. With this in mind, I decided to apply to colleges again to become a counselor. My hope is to be able to provide help to people suffering with similar conditions to mine.
It’s hard to have any sort of hope that I won’t have to undergo more weird and wonderful treatments in the future, because this hope has betrayed me so many times before. The hammering heart before doctor appointments hasn’t gone away. I don’t think it ever truly will—my brain knows that there have been too many bad ones to ever relax before them. During a recent check-up, I found myself analyzing every move they were making. Did they avoid eye contact because they have seen the scan? Did they put me into a different consultation room than last time because they need more privacy to give the results? Of course, neither of those things were the case. This time, my results were perfectly average; not spectacular but the best I can hope for at this stage. Still another threat of future treatment, this time it will be surgery to insert stabilizing rods along my spinal vertebrae. So on it goes. Every six months I will suffer through this cycle, but hopefully, even just for a little while in between them, I can now have a bit of stability.