My boyfriend and I first met in college through mutual friends. At the time, I was still living a normal life despite being diagnosed at five years old with an extremely rare tumor called a spinal meningioma.
I had already racked up three surgeries but other than a slightly odd walk, I looked like an average college student. A student who maybe sprained her ankle. I sometimes would joke that the scar running the length of my back was where my evil twin was removed. That was eight years ago. Click To Tweet Now as I recover from my sixth surgery, my boyfriend and I are feeling our way through a long distance relationship. That, and the total chaos of hospitals and healthcare appointments surrounding my spinal meningioma.
Within a year, I lost my independence…
I had to move back in with my parents, and defer my college course. All the while, my boyfriend seems to have lost his capable, career-driven girlfriend. More than once after a particularly nasty doctor’s appointment or damning MRI result, I gave him the option of walking away. In my mind, I was going to make his life worse. I also worried what his family would think of their son or brother was being saddled with a sick person.
Throughout all my terrible appointments and threats of wheelchairs, he maintains that he doesn’t care. He is constantly saying he would still love me. Even if I have to use the wheelchair forever, he says our future plans can still happen the way we want. Currently, we live in two different countries, grabbing weekends together when we can. We convince ourselves we will get to live together again soon. Unfortunately, sometimes he can be the target of all my frustration and stress… A bit like my own personal punching bag.
At the height of it, he claimed that I was a completely different person than the optimistic, cheery me he knew before. A bitter, angry version had replaced me. A version he didn’t like as much, a version that was making our lives miserable. Even though I knew I was in a negative place, I didn’t care. I felt like this horrible thing was happening to me and I deserved to be angry and upset. I acknowledged that my illness was hard for the people around me, but they didn’t know what I felt like.
They don’t know what it’s like having a Spinal Meningioma.
Along with this anger, I also harbored a confusing and terrible guilt. With every appointment, I felt like a failure. My body was failing to be normal like everyone else’s. I felt the pressure of knowing that my loved ones were willing me to be well and hoping for the best. I kept disappointing them with bad news, including my boyfriend. Despite much resistance, I did finally go and talk to a counselor specializing in people who are going through cancer treatment. While my tumor is noncancerous, it comes under that category because you have surgery and radiotherapy so you are under the care of oncologists. They helped me to deal with my anger and how to get it out instead of trying to bury it and eventually exploding. Of course, this doesn’t always work and I still struggle with the negativity. The anger towards others is improving, though.
On the rare occasion my boyfriend and I do manage to see each other, I feel like I have to preserve our relationship. I try to do as many things for myself as I can. I want us to remain as far away from a patient-carer relationship as possible. I hope that at some point I can get my old life back and become my old self again despite having a spinal meningioma. Either way, I hope that my boyfriend and I can continue on and make a life for ourselves. Even if it’s not what we first imagined.
About The Author:
The author of this story wishes to remain anonymous.
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