I survived an AVM (ArterioVenous Malformation), how many people can say that? Not many. It taught me something though... just SHINE!
In 1996 I was diagnosed with an AVM which was about the size of a clementine in the left parietal lobe of my brain. I was one of the few who are diagnosed pre-bleed, before anything happened (back in 1996, when I was only eleven years old), and so the doctors started talking about precautionary measures we might be able to take. I went through an embolization, or gluing, treatment almost immediately and was booked in for Stereotactic Radiosurgery in mid-April 1997.
Exactly one week before my operation date, I suffered my first brain hemorrhage. It was extremely minor though, and the doctors decided to still go ahead with the radiation the next week. After that operation, they said we just had to play the waiting game and see how my body reacted to what the laser had done.
And so, we waited… and waited… and then almost exactly one year after the operation (March Break 1998, or grade eight for me), it hit. Slowly. At first, my right foot wasn’t judging the distance off the ground properly, so I started walking funny. Then my right hand started to decline, while my leg got worse and worse. Eventually, I graduated grade eight with a huge brace on my right leg that extended from my toes up to my hip. I had lost complete use of my right hand, and even the right side of my face had been affected. To say that I was devastated would be a massive understatement.
However, I have never really been a quitter. Watching my body start to fade only fueled my determination, and I set my goals high – I was going to get better, completely. I started physiotherapy three or sometimes even four times a week. I worked so hard to try and reconnect those wires that felt like they had been yanked loose when I had that hemorrhage and stroke. I worked on it for weeks, months, but a few years later, victory was mine! The end of grade eleven rolled around, and there I was – walking around with no leg brace, high heels, big smiles! I had beaten a stroke, which I had heard was something that not too many people really did those days.
But my victory was short-lived. Mid-summer after grade eleven, I had a massive brain hemorrhage that was classified as “global” because it was so big. I fell into a coma and stayed there… for six days. There wasn’t much hope, but like I said – I have never been a quitter. Once I regained consciousness, I started fighting to climb back up the mountain of functionality and started trying to get my right hand and leg working… again. I knew though, that if I had beaten this once, I could beat it again.
I took the first semester of grade twelve off from regular school” to move into a rehabilitation centre, where I learned how to function again. I went back and completed the two required credit courses in the second semester, and still graduated the next year, two semesters and six courses later.
Despite all of the drama that happened the summer that I had that brain hemorrhage, I got my life back on track pretty well I think. I completed high school and still graduated alongside my classmates. I attended university and college (and graduated!), and had been successfully working at smaller jobs here and there when I got an internship. I now review live music in the GTA and write about it for a blog (http://www.mizrebelrecords.com ). I got married to the most wonderful man, Sean, and now my main job is doing the administrative work for his business (Heroic Health & Well-Being, http://www.heroic-health.com ). I have continued fundraising and am excited to see where this idea with the concert and SHINE! Festival goes in the end.
The SHINE Festival is run and organized by The Special AVM Research & Awareness Fund, benefitting The Hospital For Sick Children in Toronto. SHINE! is all about sharing what we have... so we will have musicians, yoga instructors, keynote speakers and all sorts of fun at Coronation Park on Saturday August 17th (3 - 10pm). Proceeds from this concert will be put towards life-saving research in the areas of vascular malformations, aneurysms and childhood stroke.
To contribute to research for AVM you can do so online at: SickKidsDonation.com