Tuesday March 8th I spoke to a class of NYU students via Zoom to discuss brain injuries and mental health. The invitation came from neuroscientist and professor Dr. Voelbel of New York University who has been a guest on the Bleeding Brain podcast which is a part of Brain Talk Media.
Dr. Voelbel asked me to share my experience of going through an AVM brain bleed and what the rehabilitation and therapy process was like. I jumped at this opportunity because this is a topic I am very passionate about and something I have been working to reshape for all of those who are recovering from a traumatic brain injury, acquired brain injury, stroke or concussion.
I began my speech by sharing my story about the day I had my bleed over 20 years ago and the life-altering aftermath that ensued. The prime focus of my talk was emphasizing the importance of the word therapy in relation to occupational therapy, speech therapy and physical therapy. I elaborated that therapists in these areas of work need to be conscious of who their patient is and who they were prior to their brain injury, and their current state of mental health following a brain injury.
The common symptoms following a Brain injury are paralysis, double vision, memory loss, fatigue, depression and anxiety. I told this class of college students you must account for the mental anguish a brain injury survivor may be experiencing after having their lives flipped upside down.
I added, when someone is speaking with or treating a brain injury survivor it is important to take into account the brain injury survivor’s mental health and state of mind due to them having their past self and old life eviscerated. And if that sounds dramatic, that is why it is often called a traumatic brain injury, it’s traumatic.
The mental health aspect for therapy is often forgotten with those who treat PT or OT like it is a job rather than a therapy. I gave personal examples to the students, telling them I was never told what occupational therapy is and why I needed to do it.
No one said to me, you had damage to your brain in the area that controls the left side of your body and the purpose of this therapy is to help teach you the skills to do everyday tasks in life despite not having full feeling of your left side.
I told the class, during occupational therapy I remembered sitting at a table with an older lady sitting across from me asking me to pick up blocks and move them from one side of the table to the other. I also remember throwing a ball with my left hand and putting on a buttoned shirt. I was 15 years old at the time, not a common age to wear a button down dress shirt.
It would have been more valuable if the occupational therapist taught me how to tie my shoes or helped me practice spreading butter or cream cheese on a piece of toast. These two things are still challenging for me to do, even twenty one years after my bleed.
Almost everyone has known someone with a brain injury
Towards the end of my guest speech, I asked the class of students to share any personal stories they may have about knowing someone who has had a brain injury and I was overwhelmed with the response.
It can be nerve-racking under the spotlight asking a question to a group of strangers not knowing if a single person will respond or if you will be left in dead silence but in this situation many students spoke up and shared stories about their friends, family members and neighbors who have experienced a brain injury.
There was even an acquired brain injury survivor (ABI) in the group!
If you told me when I created BrainTalk over 2 years ago that I would be speaking to a class of college students from a prestigious university, I would say you are nuts. But I would also say my path in life will never be normal and my brain injury has taught me that. It has also taught me that what I went through doesn’t make me a miracle, even though many say I am one but, it makes me someone who can use their life-altering experience to help and influence others going through the same thing and have a true impact on their lives.
The rehabilitation process for brain injuries needs a tweak and I am excited to light a fire under the brain injury world so fellow survivors can learn from my recovery failures and kick their recovery into gear and live a more fulfilling life.