Suszanne has advocated for more support to be available during brain injury recovery and is now fighting for better care of other patients.
A little bit about Suszanne
I am from B.C. Canada and I am a one-year survivor of an aneurysmal subarachnoid hemorrhage. I had to wait 11 hours before I was transported to Vancouver for brain surgery and was then in hospital for 11 days. I remember the paramedics coming into the house, but I don't have any recollection of going to my hospital, waiting for the medivac, the medivac ride over to Vancouver, or anything for 6 days after my rupture. On the last day, a physiotherapist told me I would have to climb up and down stairs to go home. That was the first time I saw her. I managed to do that, so I got to go home.
The struggle for support
I had a follow up with the neurosurgeon a month later and he told me I should get speech therapy. I could not get speech therapy in my city because I wasn't in that hospital. Frustrated by the system, I started to advocate for myself. I found a speech therapist in the neighboring city and a gym trainer who works with people recovering from brain injuries.
Finding myself overwhelmed by the sudden turn that my life took, I also started going to a counsellor which has been beneficial in helping me function better.
Advocating for myself
All the support that I have managed to access has essentially been set up by me 10 - 11 months following my rupture. My goal now is to fight for rehabilitation programs and plans to be put into place before leaving the hospital. This program should consist of a physiotherapist, occupational therapist, speech therapist, counsellor, and if possible, a neuropsychologist. It shouldn't matter what hospital you are in or where you live. I believe the sooner you start rehab the better off you will be.
I feel my speech could have come back sooner and that I would not have limb apraxia had I had the opportunity to start with rehabilitation much earlier in recovery. I am recovering slowly. I do thank my neurosurgeon for saving my life but there has got to be more done to promote post healing and I feel that especially since I was in a neurology teaching hospital. The resources to support survivors should have been in place.
Now I am fighting to get my yearly scan. The only thing I can do is to keep fighting for better post and future care of patients.
A quote I live by
I am a survivor, and I will keep on fighting for me!