It hurts like hell
Living with chronic pain and trying very hard not to turn it into a pity party.
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I can’t not think about it. I don’t like taking a reductionist approach to my emotional turmoil. Bringing it down to basic biology. Female hormones. I have lost my uterus but with my ovaries intact I still go through my cycle. I have never been more regular. I tracked my symptoms like mood swings or painful breasts on a fertility app for years and after decades of Poly Cystic Ovarian Syndrome my cycle runs like clockwork. My PMS is through the roof though, which is a bad match with the damage done to my abdominal nerves.
When I feel like this, I always have to think of the damning words spoken about the late Princess Diana after the controversial 1995 BBC interview with Martin Bashir, and she was dubbed “slightly emotionally unstable”. I am feeling very Lady Di today.
Tell me about yourself, the nurse said while carefully maneuvering my IV bags and catheter tubes through the various openings of my nightgown. As I sat down on the little folding chair underneath the shower, I let my head hang down. Maybe it was defeat, maybe it was just my need to feel the warm water stream down my spine. Showers and morphine were the only things that would temporarily dull the pain.
The way I see it, the nurse started again, filling up my meaningful silence with a statement instead of a question. If this is the road you have to walk, and I don’t think you have a choice here, then you might as well walk it with your head held high.
I didn’t know what that meant. The same way I didn’t know what my GP had meant the last time I saw her and she said: Remember you are more than your emotions. I am what I think. I am what I feel. I am. All I thought about was how long I would be allowed to be.
18 to 23 months was the conservative estimate at the time for someone with metastasized PEComa.
I held the palm of my hand up towards the shower and let the water trickle between my fingers. My skin smelt weirdly sweet, because of the morphine. I don’t like reducing myself to a narrative. Being is not doing maths. My life is not an equation. I am not the sum of my experiences. The trouble is, I didn’t really know who I was supposed to be. I shared a few anecdotes and briefly I felt bits and pieces of the old me taking shape again in my mind. But she quickly faded as soon as the new round of pain meds and sleeping pills kicked in. I was gone.
I still go numb. Living with chronic pain means perfecting the art of not feeling. In the beginning, all I could manage was half an hour here or there. I have now trained myself to do it for extended periods, so I can do things. Things like chopping wood. Lifting storage boxes. Hiking up a hill with my pets.
When I confided in a new friend he marvelled at my upbeat outlook. Most people he knew with chronic pain were insufferable grumpy bastards (I don’t blame them). I told him how I manage myself, my body, my everything in my rhythm. It means people don’t get to see me on my bad days and they don’t know that another version of me exists. I back down and retreat when necessary and my body is boss. I don’t argue with her anymore, because that is what got me into this mess in the first place.
(Please read Gabor Mate’s “When the body says no” and “The body keeps score” by Bessel van der Kolk – they are life savers.)
But it hurts. It hurts when I pee it hurts when I poop. It hurts when the weather changes. It hurts when I forget to tighten my belly muscles when getting out of bed or up from a chair. It hurts for no reason. The pain varies from angry prickly caterpillars marching around to getting stabbed with a screwdriver. It’s exhausting. I meditate, do breathing exercises, sit in front of my infrared lamp, and massage painful spots with cannabis oil. I have my tricks, but when that is not enough I throw temper tantrums that give the average two-year-old a run for their money. Until I realize acting out my anger and frustrations is futile and I just cry.
Over a decade after sitting in that hospital shower all I have to do is close my eyes and I am right back there. Back in Bucharest burning the soles of my feet on a hot pavement while trying to get hold of my gynaecologist to receive the worst news possible, or so I thought. Back at the oncologist’s office, resting my head on his desk with my cheek in a puddle of tears when told the real bad news: That there was nothing more they could do for me.
I had more surgeries anyway. I lived. I don’t know anyone else who has survived a death sentence, beyond the miracle videos self-help gurus share on YouTube. I have accepted that it is an experience I can’t convey. I can’t describe it, I can’t explain it.
Have you ever felt guilty for being alive? A friend of mine asked me when I met him after burying his cousin. Yes, I answered without thinking. In my head, I completed my answer with: Every single day dude.
The pain is exhausting, but maybe more draining is the self-imposed belief that I have to earn to be alive. I must do or be something to show that I deserve it. Because why am I still here when others aren’t? I have to make it mean something, I have to make it count, but there are days where I can’t do much more than breathe and be.
And that’s ok.