living with a brain tumour named nigel
after lisa morrissey, a visual artist, was diagnosed with a benign brain tumour in 2003, she gave it a name and found relief from chronic pain and fatigue in her art.
7 minute read
"nigel and i will live together in our weird love-hate relationship and conquer life challenges together," says artist lisa morrissey referring to her brain tumour. getty
lisa morrissey, a visual artist in kingston, ont., was diagnosed with a brain tumour in 2003. she’d come from england with her family four years earlier to live this “beautiful canadian dream” and didn’t expect her health to fail. while the tumour is benign, it couldn’t be removed, so she’s learned to cope with the chronic pain and fatigue of having this long-term resident who she calls “nigel” or the “a-hole” inside her brain. now in her early 50s, looking back she credits her survival to her “own damn stubbornness.” she wanted to show her kids and anyone else who was watching that she was going to do this — “nigel and i will live together in our weird love-hate relationship and conquer life challenges together.”
this is her story about resilience, loving her kids and healing through her art.
“i didn’t actually feel any symptoms until one day i was having lunch. this was in early 2003. i’d had some headaches, but i’m a migraine sufferer, so i was seeing my doctor to see if my migraines were changing a pattern or something. i’d had a ct scan through a doctor at the hospital. he sent me away and said, “we’ve checked, we’ve done this, we’ve done that. it’s all in your head.”
those were his words. “it’s all in your head.”
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my dad was a migraine sufferer and my dad’s sister was a migraine sufferer. i figured that maybe this was just something i’d have to deal with. then i was having lunch one day with my husband, and he looked at me with this very odd look on his face. he said, “smile at me.” and i smiled, but the left side of my face was completely paralyzed, although i couldn’t sense it myself. we immediately went to the hospital and they diagnosed me with bell’s palsy [an unexplained episode of facial muscle weakness or paralysis]. they gave me a round of antiviral drugs and high-dose steroids, and it got better. i religiously did a bunch of facial exercises and the facial tone came back pretty much 100 per cent. it took about six to eight weeks to recover. but for two to three weeks, the left side of my face was completely paralyzed to the point that i used to have to tape my eyelid shut at night because it stayed open.
then the hospital looked back at my charts and found that i’d been in before with some head pain, so they started to look at things again. they referred me to a neurologist and did a mri. they thought at 33 or 34 that i was young to have bell’s palsy out of the blue. so i thought they would call me and tell me that it’s all in my head again. but i was standing in my kitchen and got a call from the neurologist’s assistant who said, “we’ve got the results of your scan and we’ve detected a tumour in your brain.” i just about fell on the floor.
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it all started from there. i saw a neurosurgeon and we talked about removing the tumour and that it was very slow-growing. i was very young to have it, so when you consider it growing, you could have mris to keep an eye on this thing, but you can’t predict how fast it’s going to grow. even though it’s benign, it’s still a threat. what if it has a growth spurt? it’s in the bony canal between the ear and the brain, so on the hearing nerve. but when you look at the hearing nerve, it’s like looking at electrical wires all tangled up with the facial nerves, which is why they think i had bell’s palsy. so if this thing was to continue to grow, the only place it can grow is into the brainstem — at which point i’m a cabbage.
removing the tumour would mean hearing loss
the neurosurgeon told me that removing it would pretty much guarantee losing my hearing completely in my left ear, along with facial nerve damage and other issues. the brain is the powerhouse for body functioning and anything in the brain is very hard to get to. i asked about my options, and we talked about gamma knife radiosurgery which is like high-dose radiation through different parts of the head. they put a helmet over my head that is fixed to an aluminum frame that is, in turn, bolted to my skull. they had to drill into my skull.
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there were a few things i had to consider before going ahead. having that kind of radiation can cause issues down the line, for example, if it goes through any other healthy tissue, it can cause cancerous tumours in other parts of the brain. i wanted to be there for my kids, so i decided to deal with the here and now and hope to god nothing else happened. the surgery was only available in winnipeg. it took time to arrange and we got the go-ahead at the beginning of december 2004.
the surgery itself lasted about 45 minutes. i was awake through all of it, and afterward the frame was removed and then i went back to the hotel to read. two days later, i flew home to ontario. there was a lot of pain where the frame was bolted to my skull, and lots of swelling which travelled down my face over a few days.
“i really think it was creating my art that healed me. something that made me feel whole,” says artist lisa morrissey. supplied
the outcome of the radiation is killing the cells, but initially, it can put those cells into hyper-drive. so the tumour initially swelled to twice its original size in a very confined space. then after two years, i had an mri and we had the joy of seeing that it was going black, which means nigel (the tumour) was dying and his growth had been halted.
but the damage that he’d already caused meant that i have pain. i get vertigo sometimes or i feel like i’m just not quite with it cognitively. there are all kinds of weird symptoms. my hearing is also not great in that ear, which means my body has to compensate for things, including balance. a lot of it is fatigue. if i’m having a day where there’s pain and i’ve spent three hours in the morning trying to stay upright, that’s tiring. i’m just tired trying to stay upright and keeping my eyes focused.
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i get very fatigued, but it’s just nigel. it’s nigel or the a-hole in my head. i gave him a name because i figured that he wasn’t going anywhere. it’s like, ‘hey buddy, you are here for the rest of my life. you’re living rent-free in my head. you’re having wild parties up there sometimes, which you do not ask permission for. and i am the one who deals with the fallout.’
over time, i’ve tried different things for the pain. i saw my neurologist about three months ago — a new neurologist because the original one retired. seeing this him was kind of neat because he looked at me with fresh eyes and said, “oh, your facial nerve is compromised. when you blink, you blink in your left eye and the left side of your mouth, twitches.” sometimes my face twitches under the skin, the nerve is twitching and my face twitches, and i just want it to stop. other times, i feel like there’s like a burning on my scalp or a patch the size of my palm on my throat that feels it’s on fire. so i put an ice pack on it to help.
lisa morrissey does pyrography, which is burning designs into wood with a heated object. supplied
i also get a very full feeling in my ear — and then every eight to 10 minutes, it’s like somebody’s shooting a red hot, sharp needle down my ear like an electric shock-type pain. that could happen once a week, four times a week or not for a month. but not a day goes by that i don’t have pain in my head.
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maybe when i get older i might have to try something for the pain, but at this point i’d rather just tough it out and find other ways to avoid the side effects of medication. i have leaned into my art as my therapy. i do pyrography (burning designs into wood with a heated object). i get fidgety if i don’t do it every day. what inspires my art, is nature, so i look to nature and i feel enveloped by nature.
i really think it was always creating my art that healed me. something that made me feel whole. something that made me feel like i had ability and that what i made could bring somebody else joy.
i would like to tell anyone with this type of brain tumour that your fear is real. your pain is real. your rollercoaster of emotions is real. but you are here with it so take control. own it so it doesn’t own you. give it a name because it’s easier when you want to swear at it.
it’s changed your life, but it doesn’t have to be for the worst.
karen hawthorne is a toronto-based writer.
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