Portrait: John
My story takes place back in May of 2000 when I was 10 years old. Around 5 pm on a Friday afternoon I started having a bad headache. I told my parents about it and they handed me some Tylenol, assuming it was just my allergies. That didn’t solve the problem.
I later found out that I was experiencing a brain AVM (arteriovenous malformation) - a tangle of blood vessels that connects arteries to veins. It had started to rupture on the left side of my brain causing the pain to get worse. I told my parents I was dying.
Being rushed to hospital
They rushed me to the hospital and the pain was so bad that I blacked out. I flatlined and CPR was done to bring me back. Luckily the bleeding had stopped but it had formed a blood clot in my brain. My local hospital then airlifted me to a hospital in Louisville, Kentucky.
I was in a coma for two weeks. When I woke up I was blind and paralyzed. I remember that was not a fun thing to wake up to. The doctors explained to me and my parents what had happened and that I would probably be able to see and function again, but that I wasn’t going to be the same. The doctors were waiting for the swelling in my brain to go down to see what type of surgery I needed, as well as to find a surgeon to remove my blood clot.
After a week, I was no longer blind. The swelling had gone down in my brain but I was paralyzed on the right side of my body. Had a lot of therapy done like physical, occupational and speech therapy. After having two months of therapy, CAT scans and MRI tests, they prepared me for my surgery to remove the blood clot. After my surgery I was in the hospital for a month before being allowed back home. I still had plenty of therapy and recovery at my local hospital, but my physical health was looking almost normal.
My health journey continued
Unfortunately, my story doesn’t end here. The problem was I kept having seizures, sometimes several a week. Luckily, they weren’t huge seizures but would go into shock for a couple of minutes. Other types of seizures I experienced included having double vision or collapsing.
After dealing with that for a year, my neurologist recommended that I should go to St. Louis Children's Hospital. Their hope was to find a way to stop the seizures. So, in August of 2001, I was in St. Louis and they ran more tests. They did an EEG to see how the seizures were working. They found out that I had 3 more very small, damaged pieces of tissue from my bleed and that it was what was causing the seizures. After the 3 surgeries and two months in the hospital without a seizure, I was sent home. They tried reducing my medication but that caused another seizure. More tests were done and they concluded that since I am missing some small spots of my brain, that might be causing my brain cells to panic and force the seizures to happen. This meant that I stayed on the same medication to prevent the seizures.
How I am doing now
I have gone 10 years without having a seizure now as long as I take my medication. I actually am able to drive and as for my physical health, it’s great. The only minor physical damage left is that I have bad right peripheral vision. I struggle with my short-term memory but mostly with multitasking. Luckily most of my job is repetitive. If asked to give a hand with something I might get off track and misplace something, but the people I work with knew me and my family back when all of this started. As for one last thing I do is help out at a church camp. They always want me to tell the story of me growing up with these struggles. I joke about most of it to not make people feel sympathy for me. I find that adding humour into how hard it was with recovery but helps me look back and show my accomplishments.
The journey to recovery is filled with ups and downs. Mental health can be challenged during brain injury recovery and SameYou’s mission is to work to develop better mental health recovery treatment for survivors, raise awareness and advocate for change.