Janice, L

Photo of Janice, L

I am … a Survivor.

My stroke had no face, no warning. It was silent. I was 47, I had put in a long day at the desk job. By the time I got home from work, routine stuff, dinner, clean up and the relax watching TV. At some point I left to go into another room, I picked up something and when I went to straighten up, I felt weak. That’s it just weak. I called for my husband to help me back to the couch to relax. He thought it very strange I would ask him to help me. Made my way back to couch. I attributed the weakness to a pinched nerve or something because of my long day. But I noticed I wasn’t getting stronger sitting. Husband suggested he take me to local ER just in case. I said no, I wanted to see a program on tv…i waited another 20 mins. I felt a bit weaker, so I gave in to go to ER. I walked to car, got in and he drove to ER which was about 15mins away. He parks at ER. I was able to say to him. “Get everyone, I can’t move.” The next several hours were a blur because to me only seconds went by. I remember local doctor saying they had to transport me to the city because they could not help me. She looked sad. I was transported by ambulance to MassGen. By the time I arrived, I was in full blown stroke mode. Bad speech, could not move, sight, sound bothered me. Doctors arrived and so did the tests and procedures; blood labs, lumbar punctures, CT, morphine… they kept asking me what happened; and the more I tried to talk, the worse I’d get. The team of neuro docts and neuro surgeons all trying to figure out best course of action; surgery or not… They said, I may not survive the night, they suspected stroke but wanted to redo scans; it also could have been a brain tumor. Either way, it was bad. Then the prognosis; aneurysm at the brain stem. Doctors told me pressure on my optic nerve will cause me to go blind. I could not communicate well. Everything was surreal. Priest and nun came and went. Got a crucifix but I wouldn’t accept anything else. I was fading away. I knew it. They put me in an weird angle to continue leg circulation. Anyway, a cerebral angiogram was done. Spent a week plus in hospital I think. I never did lose my sight. During my stay, I recall seeing some things in the neurology ward I don’t want to remember. That’s when all the impairments took over. Constant horrible headaches from back of head. No short term memory, vertigo, spacial disorientation. I even had some long-term memory challenges; brain stem has different impacts… Light & sound were amplified. I could not speak well, could not write anything, mobility limited. I had months of rehab. I was a mess and an angry patient. One day at rehab, I was sitting for my various appointments when I saw a young woman pushing the wheelchair of a young man. He appeared to be totally paralyzed from neck down. He clearly had a brain injury, but he seemed happy to be alive. His caregiver was fully dedicated to him. I looked at him, and then looked at myself and thought, what the heck is wrong with you?? Get off the pity party and concentrate on getting better. Seeing him changed everything. It took years to recover to where I am today. I still have impairments, but I cheat. I use my phone to jot down reminders, dates, lists, etc… I see photos and movies like it’s been the first time I’m seeing them. I still get headaches and don’t like to drive at night. I still have spacial disorientation. But I deal, and yes because of months of rehab, I can walk, write and talk again, though I think I have a speech lisp. So my stroke wasn’t a text book stroke. No pre-warning, no initial headache just weakness running throughout my body. But when it hit, it was a tsunami. To fellow survivors, you all are rock stars.