In 2013, I had my first intracerebral brain hemorrhage in my left thalamus due to a cavernous angioma or cavernous malformation (CVM). The neurosurgeon was hesitant to operate–as he put it, the CVM was in a “high real estate” area of the brain. Although my brain hemorrhage stopped on its own, I continued to have bleeds. In 2016, I had my second, major hemorrhage and my neurosurgeon and I decided it was time to go in. In January of 2017, I had a craniotomy with a resection of the CVM.
Countless professionals have helped me get to where I am today: physiotherapists, occupational therapists, speech and language therapists, counsellors, neurosurgeon, neuropsychiatrist, neurophysiologist, friends and family. I feel fortunate that I already had a background and training in Mindfulness-Based Stress Reduction (MBSR). The ability to find calm and meditate during the long hospital stays was very valuable.
If I could go back and tell myself one thing when I first acquired my brain injury, it would be to not feel guilty for resting. Of course, there were many times that rest was all I could do; however, when I did have some energy, I’d often over-do it. As a mother, teacher, coach, and athlete, I often felt that I wasn’t pulling my weight or maximizing the hours in my day. This mindset led to a lot of setbacks.
As someone with an invisible disability, I feel I am not always taken seriously about my deficits. It is also terribly hard to explain fluctuations in my abilities–one day I may sound articulate, and the next day I am searching for words and having a difficult time conversing. One day, I may be able to do a 5km hike, and the next day I’ll have a migraine and be in bed. Don’t stop inviting out a brain injured friend or family member. They may say “no” 100 times for every “yes”, but knowing you think of them is so important!
Finally, if a brain injured person has the opportunity to go through grief counselling, I would highly recommend it. I am no longer a teacher, coach, and athlete–going through the grief cycle helped me deal with this tremendous shift in my life. Developing a new identity, so-to-speak, is equally challenging, but less somber (in my opinion).
Love and Light to All!
