“If I Only Had a Brain...”
Disembryoplastic Neuroepithelial Brain Tumour (DNT)
I was dealing with memory issues... or at least that was the most obvious problem. And as an actor, a big part of it was memorizing lines, and somehow I’d struggled through my acting degree at UBC with line challenges. After graduation and marriage, there were times that I could smell a soup or a stew that wasn’t there, and then I’d get lightheaded, dizzy... I’d fade out - then come back... The doctor’s would say, “It’s stress”, “a new job”, “a new baby”, and finally one of them said, “You need an MRI!”
That’s when they discovered I had a disembryoplastic neuroepithelial brain tumour. A DNT for short - and I was hoping not for long! But the tumour was inoperable - “nothing we can do” - words you never want to hear from your doctor, especially a brain surgeon. A year later, they looked again. The tumour was worse, but they were better, and told me that surgery was now possible! And it would take another year to schedule that surgery...
On March 14th they performed a left frontal parietal craniotomy with electrocorticography and selective excision of lesion and epileptogenic tissue. And with a name like that, you know it took a long time. Over eight hours...
Six years later, after a divorce and a difficult return to work, regular testing determined that a second surgery was necessary. Still not wanting to let go of theatre, I was performing in a show at the time, and the surgery was actually postponed until after closing night. After all, the show must go on! And so, on May 25th we did it again - the surgery so nice, I’ve had it twice! Another 2 years on long term disability status before they put me into ‘rehab’ to determine if I would be able to return to work. The final judgement came down as a “No”, and I was put on ‘permanent disability” status.
No job, no marriage, kids only 27 hours a week, and a ‘disabled’ status that was hard to shake - or disprove... I was going to brain injury support group meetings, discovering people who also thought thy were the only ones with brain tumours. All this because of Tina, a brain injury survivor herself, who had created this support group because they didn’t exist when she started ‘surviving’ her brain injury. One night each month, she would find activities for survivors : art, hiking, reading, and then one night it was VASS - Vancouver Adaptive Snow Sports, there to talk about skiing! Well, I hadn’t skied in 25 years, and the thought of it both terrified and invigorated me! What if I couldn’t do it again? But then again, What if I could!?
Now, winter was always the worst part of the year - all that cold, wet, and grey - it was just a depressing time to be around, but with skiing, it became the best time of the year! After one lesson, my instructors were trying to keep up with me! I was invited back the following year - as an instructor, I joined the race team - athlete of the year, I learned to snowboard - competed with Paralympic try-outs, coached for the Special Olympics Vancouver team - saw our racers go all the way to the Internationals. Skiing became a focal point in my life, and now I could leave acting behind - that was then, skiing is NOW!
As for recovery, well, I think that’s kind of happened for me. There are day by day challenges, details - the who what when where why’s of daily life - and I can take care of most of that with the schedules, alarms and organizers on my iPhone, but the first thing I see on most days are my skis, my bike, the trails of the day - something that gets me out there. And I’m very lucky that most of that is possible right now - pandemic or not! I’m very lucky at this point. I have an income, so work’s not an issue, I can go for groceries in the quieter hours of the day, and I can stay pretty cosy in my own little bubble. Once this is all over though, It’ll be nice to get back to the people. All the people that make recovery worth it.