Hey, thanks for your interest!
If your attention span is as short as mine, skip to the last video on this page for the “in a nutshell” version of my story 🙂 Or for an excellent paper-weight/ sleeping aide, the first few years were captured in my book, “Day By Day“(2014). Otherwise, here’s my story.
The Full Story
At 25 years old, heartbroken, I made the difficult decision to leave my first love and move to a different city to start over. Destination: The Danforth (outskirts of Toronto Ont).
I recalibrated with people-watching from my 20-something high balcony, playing guitar to myself, and having ridiculous fun dining on patios, playing pool and having drinks in local pubs along the Danforth. My career was not just blossoming, it was BOOMING: After only 3 years I had 2 promotions- I worked hard & earned it! AND started the process of getting my equivalency for nursing.
My confidence was growing for the first time in my life. For hours I’d explore the city- not caring if I got lost, it was FUN. One day on my travels, I came across a cute little store tucked away; that’s where I bought my pet fish, “Tickles”, (now logo). It took 3 years to re-calibrate ‘Melissa 2.0’; this was when I was at the most independent & successful time of my life! ….and then… BAM! SURPRISE!!!!! Emergency surgery to remove a brain tumour!!!!
So. much. loss. It wasn’t the just the physical brain tumour that was the trauma- it was EVERYTHING! You know- faded friendships, career loss, smashed independence and worst of all: identity. It knocked me on my… well… you know.
I wrote a book about the first few years of my brain tumour journey, ‘Day By Day‘ (2014)….
Admittedly, it makes me so uncomfortable to market it, because I didn’t write it to make money or satisfy curiosities of’. I don’t want to share ‘my story’ time and time again for people I knew ‘once upon a time’ or for stranger’s pure entertainment purposes. It’s tiring.
I wrote it for ME to cope and published it to help others who need it.
(VIDEO: Melissa’s online Brain Tumour Foundation of Canada, “Stories of Hope” 2020. Length: 14 mins, YiKeS sorry it’s long! *audio/visual grainy at times.) Diagnosis (1:35), Confused Punishment (5:16), Personal Coping (8:00), A few tips (11:00)
Fast forward to my 10 year ‘Brainaversary’ (Oct 2021)- YEY! Weeeew! I was surprised with a video compilation of everyone who’s been a big part of my BT recovery journey, ringing a bell congratulating me on 10 years. I have never blubbered so hard of such happy tears!
After opening this website in 2021, I found myself in a nasty funk...
I was feeling the silence of not being usefully active in any “STANDING BACK UP”-type events/initiatives. Like Peter Pan’s Tinkerbell, I needed energy to carry on with purpose- Sure, the pandemic didn’t help, chasing 1 sided friendships like an idiot, increasing health concerns, family death and even personal divorce. For me, I had lost the most important thing in my life: my purpose to keep living…. Who am I?
2022: As if a fateful hand reached out to pull me out of the water so I could stand back up, this happened:
The Brain Tumour Foundation of Canada announced they were offering the opportunity to help put together Digital Stories for BT survivors to tell their stories. I reached out despite still feeling in a funk. It was THIS video that gave me another breath of fresh air: a reminder of my identity.
When worked in the programs department of Long Term Care, we would document attendance for programs that were providing ample about of support for their Emotional, Social, Intellectual, Physical and Spiritual needs. Sound familiar? That’s how I’ve categorized tips!
Although proud of this new initiative, as weeks go by I feel like this may be best in the hands of bigger leaders of the BT community. I feel like asking for tips is just as fun and responsive as herding cats :S We’ll see!
If not, I’ll keep reaching out to every support group, day by day.
The hardest part of my 'BT Journey' has been the PEOPLE, not the brain tumour itself.
To make it worse- it’s mostly unintentional- its mis-education and/or assumptions that caused most of my pain- not the staples at the back of my head, not the 6 week high radiation, constant needles for bloodwork or countless hours of MRI monitoring tests where I must stay motionless in a plastic tube for 45min- 1 hour every time.
It was the deafening silence/lack of presence from those that didn’t know what to say or too uncomfortable to see me ‘like that’…. yes, from genuine friends.
It was the things said like acquaintances asking questions to satisfy THEIR curiosity, not my well being
It was the rude stares from strangers when I was in a wheelchair- Their eyeys screamed questions “why is that young person in a wheelchair?”.
These days I’m getting dirty looks from strangers as I hubble by (thinking I’m drunk)- not knowing I’ve learned how to walk again. When vent to my ‘few true’ I joke, ‘I might as well start day drinking.” *Whispering* Psst, a secret: you can do stand up comedy AND advocate at the same time! I might share some snippets of my standup experiences, if asked…
I remind myself regularly- it’s a different person making 1 assumption, with malice or not. Times that by every new encounter = my anger, burn out wasted time on my part!
NOTE: I don’t care if someone who KNOWS me doesn’t like me, but it infuriates me getting treatment like I’m doing something wrong when I’m not!
In a nutshell, here are my truths
Manage Expectations.
- Regularly for other people and/or things. If constantly disappointed, it’s time to recalibrate; its more often YOUR choice to repeat a feeling causing reaction.
- Is life happening TO you or FOR you? Perspective is everything.
Day By Day.
- Take every bad day one day at a time. It’s not wasted time if you learn from it.
- Savour every good day like a fat kid in a candy store. You’re worth it!
You are your Worst enemy and Best advocate.
- Take responsibility and charge of the things you can- it’s tough
- If you can’t, know there is strength in trying on your own and admitting you can’t.
‘Just Because’.
- Do something nice for a stranger, even when no one is watching. Even if it’s not needed.
- You’re making a moment better for someone else, which in turn releases a ‘feel good’ hormone to you. It’s science!
- We all know the words, ‘You never know what someone is going through…” so don’t judge…. or at least act on your judgement
xoxo Melissa of ITA
