Jennifer's stroke affected her vision, hearing, balance, ability to walk, and weakened her left side.
A little bit about Jennifer
Four years ago, I suffered a cerebellar stroke due to neck trauma from undiagnosed whiplash from an accident (dissecting both my vertebral arteries). I was only 33 at the time of my stroke. The stroke affected my vision, hearing, balance, ability to walk, and weakened my left side. Over four months of physical rehabilitation I re-learned how to walk, strengthened my left side, improved my weakened left eye, got my driver’s license reinstated and eventually eased back to work (although in hindsight probably too soon as it took a little while to recognize the effect of the stroke on my mental health).
My recovery: the rock stars and what was lacking
I received what I like to call a ‘rock star’ level of care from the excellent emergency doctors and nurses whose quick response minimized the damage to my brain. My family doctor was phenomenal, she was diligent, compassionate, and reassuring which helped overcome many issues.
But my recovery care and support focused mainly on my physical rehabilitation. Early in my recovery I was screened out of psychological counselling and put on a waiting list for a program that was ultimately cancelled due to staff shortages. Eventually I was able to get my counselling covered by my insurance.
The biggest gap in my care was the lack of information to help my partner and I understand what to expect on the recovery journey.
When we left the hospital, my husband received some pamphlets, but it really lacked relevant information on what to expect in our circumstance. This resulted in several return trips to the emergency room. When I left the outpatient care and eased back to work, we didn’t realize how ill equipped we were to manage the next steps of the recovery. There was a lack of preparation for the other side effects, such as health anxiety and neuro fatigue (i.e. diminished capacity, brain fog, irritability, chronic fatigue).
The resources and support in Newfoundland and Labrador, Canada could be improved which is why I also recently joined a local organization, Newfoundland and Labrador Brain Injury Association, to help them provide public education on brain injuries and to support people affected by brain injuries and their families.
Navigating recovery challenges with my partner
Surviving my stroke and undergoing the recovery has been one of the most difficult challenges we have ever faced. From a mental health perspective, it has taken a long time to rebuild my confidence and passion for the things I cared about in life. My husband (who became my primary caregiver) and I are still working on the emotional side effects of the trauma and the lingering (often invisible) effects of my stroke. The anxiety and PTSD we both experienced has affected our daily lives. My recovery and the subsequent effect on our relationship has brought on a lot of self-preservation and co-dependency. Long story short, it's certainly been a journey for us, and it's taken time to come to terms with the fact that life is different than before but also that there are silver linings throughout this journey. I'm beyond grateful for Geoff and the people in my life who are patient and understanding.
What would have been helpful to us?
I understand that every stroke is different, and that recovery is also an individual journey. There truly is no user manual to help you get to know your new sense of self.
When we were on our own in the recovery, what was most helpful was finding online resources and support groups (like SameYou, Canadian Heart and Stroke Foundation’s Community of Survivors group, and most recently the Newfoundland and Labrador Brain Injury Association). Reading the stories of other stroke survivors was a huge help in overcoming some of the mental health issues. Some stories were eerily similar, and others were truly humbling.
The stories we tell ourselves hold a lot of power.
Sharing stories with a community gave us a glimpse into what to expect when something like this happens and helped to lift some of the isolation. In writing this, I recognize my privilege in being able to share this journey with a partner. Since my accident, many people with traumatic brain injuries have reached out to me to tell me about their experiences. This is why I'm passionate about sharing my story with SameYou.
A quote that has been helpful during my recovery
A quote from Morgan Harper Nichols has been helpful: “Today, I am grateful because I am finally starting to see after everything I have been through, something new is stirring inside of me. There is so much more to me than who I used to be and that is a beautiful thing.” -- Morgan Harper Nichols.
Jennifer was a recent guest on the Concussion Talk podcast with host Nick Mercer. Link to her episode here.