My Relationship with Pain & Learning Lessons in Resilience
I have gone through a few different cycles of dealing with persistent pain and the heartbreak it often brings. The first year or two of this were the hardest; I was really angry, and I felt like what was happening in my body was unfair. I felt that I deserved better and that it was all bullshit. My anger at the situation I had been put in completely took over.
My second crainiotomy was a year and a half ago (March 2016), and last summer I had my first ever “good” MRI - no mass was present. When fall came, I had to keep reminding myself of that; “the MRI was clear. It’s not what you think Nora. The MRI was clear”. But there was no denying that the pain was back. It had crept in, and though I ached to be wrong, I knew what was happening. I spent months silently praying for the pain I was in to disappear, for it to be a fluke, maybe some residual swelling from the operation? I tried to entertain these possibilities but I don’t think I ever truly believed them. So, slowly but surely I started to get used to the idea that maybe I had a mass in my brain, for the third time in four years.
Even though quite a bit of time has passed since the pain resurfaced last fall, a huge part of me is still afraid to accept this as my new normal and to be honest with the people in my life. I spent months in my own head, but eventually I was able to confide in a few people. I was tired of lying, I am tired of lying, which is why I'm writing this. It seems that not a day goes by that someone doesn’t ask me about my health. I am so lucky to have people who care about me like this, but it has been a challenge for me to keep avoiding these conversations. My mom said that she knew, that she could see it in my eyes for months and was too afraid to ask. One of the worst things in the world is hurting the people you love, and my mother has had to take care of me far more than I am proud of. I am thankful for this, but I don’t want my pain to be anyone’s burden, it is humiliating and uncomfortable.
I used to say “my stupid brain" - an excuse not to drink or go out or surf or whatever. It hurts me now that the phrase became such a huge part of my vocabulary. When I was young my dad would always stress that we are so incredibly lucky to have our health and we need not be petty about the small-scale problems we would face. He always told me and my sister that we were lucky to be born with good brains. So who am I to now say that my brain is stupid? Just because there is a boogie monster in it?
My brain is beautiful.
My brain has been intruded on for years, cut into twice, and has been poked and prodded at.
My brain has been resilient and has given me the opportunity to feel like my strongest self.
I used to think my brain was really all I had, and so each time I thought I had lost it, I was devastated. I was always looking for the next painkiller, the new type of therapy, or a god damn craniotomy to ‘fix’ my pain. But now, my philosophy and outlook on my health is different than it’s ever been. I stopped thinking “what can I do?” about my pain, and I started to say “how can I do it?”. Now this sounds so simple, but it took me years to get there.
What I have learned is that my confidence in modern medicine might not be what I thought it was. My GPs in both Victoria and Tofino are two of the most compassionate and caring women I know. Don’t even get me started on my neurosurgeon; a day hasn’t gone by that I haven’t taken time to thank him for his patience with me and his phenomenal care. These people are incredible doctors, but they’re still human, and humans can’t just fix everything, and I am not the exception.
I know that cancer, or tumours, or cysts, are not smart. People say “cancer is smart”- but that’s not true. Cells are dividing because they are programmed to, because that is survival. My body isn’t trying to break me. My body wants me to be healthy, and it’s my job to help it do that - but figuring out how I can do that has been a challenge.
“Is your pain better than it was before?”
“How are you able to hike still?”
“How did you finish your term at school?”
I can tell you with complete honestly that my pain is no better than it was a year, or two, or three years ago. There are still days that I call “the worst day”.
What has changed is not the pain that I feel, but the power I give it.
I’m writing about something that I never thought I would believe as true.
The sensation in my head is painful, but I don’t need to give it the power it's asking for.
If I think about each part of my body, I am not in complete pain. My toes are not in pain, nor are my legs, hips, arms, neck. There is a sensation in my head, and when I draw my attention there, it hurts me a lot. Most days, I can focus my attention elsewhere. I can focus on breathing and I use pain management based meditation every day. I can remind myself to relax the muscle tension in my forehead, and by doing that the localized pain can release.
I am still bummed. I am bummed that there are times that I am out of breath when I walk a flight of stairs. I am bummed that some days I need to take painkillers to start my day, and those days have lasted for weeks. I am bummed that my health has impacted the most important things I have going on in my life.
Having a brain tumour/cyst (I use this interchangeably - both fluid and solid sections) had been a part of my identity for years. It weighed on what I felt I could/couldn’t do, and it seemed to become a part of every story or experience I shared. If I continue to give my pain this much power in my life, it will take it. There have been times when every day had been shaped around the mass in my brain, rather than allowing the pain only a fraction of that day. The more I can separate myself from the pain, the less chance the pain will be all consuming.
Am I saying mind over matter? No. MRIs are not the only way to detect pain. A lot of the time we know when there is something going on, and this was the case for me. Am I saying I am stronger than the pain? No. If you are in pain then you are in pain. There will be days ahead when I read this and think of myself as a phoney, because there will be days where everything will revolve around the pain. I just don’t think that has to be every day. The majority of you reading this are probably in some sort of pain. That pain may not be tangible and absolute, but regardless I hope that you find relief.
I got a brain scan a few months ago, and the result floored me. I went into my 11th MRI expecting to uncover another mass the size of a walnut clinging onto my pineal gland, but in reality the cystic wall was a mere 6mm wide. What?!
Who knew that this news would leave me feeling possibly more defeated. Can I feel 6mm, in comparison to the 25mm (2.5cm) mass that was there before surgery?
If I can’t trust what my body is telling me, what can I trust?
This news has really opened my heart to pay attention to pain that isn’t as absolute. I might not have something tangible to identify as causing the pain I am feeling, and that is really confusing. I feel the same sense of being lost that I felt in those four months before I was ever diagnosed. At that time I felt like I had lost my mind, and I wanted someone to tell me that my pain was validated and that the way I was feeling was ok. I didn’t know what was happening then, and I don’t know what is happening now. What I do know, is that I can be in a lot of pain when my headaches take over. I thought my tumour had grown back, but it hasn’t to the extent that I have become so familiar with.
I can’t say where my pain is coming from, and neither can my doctors.
It doesn’t make sense. Our bodies (and in my experience especially our brains) work in mysterious ways. We won’t always understand them, but I am learning to accept that. Pain is not always absolute. Or, perhaps in this case, the problem does physically exist and we just can’t see it yet. I don’t know if my pain is ‘real’. I don’t know if science can, or will ever, back me up on this one. I do know that I am constantly learning about my body. I will never underestimate the power that our physical being has on our entire self. I am still in pain, and I can’t tell you why for certain, but I don’t want to feel ashamed of that anymore.
The thing is, pain in not the only thing that is happening in our life right now, and when we realize this the intensity of the pain starts to change.
Pain has consumed me for years, but I don’t really have any more years to give it. Living with persistent pain sucks, but I get to life a pretty fucking fantastic life apart from the pain. I really love that part, and I love you for reading this.