St. Stephen – Talking to Michelle Bartlett, it’s hard to believe that this brain injury survivor was at one time placed in palliative care, and her family started to make funeral arrangements.
She recently shared her incredible journey to recovery at the semi-annual Brain Injury Canada meeting, held in Saint John, and her story is inspirational.
She received the organization’s volunteer award of merit, when she spoke at the annual meeting in Toronto last year, and was again recognized in Saint John for her volunteer efforts.
Bartlett said she was excited that Brain Injury Canada chose to bring a national conference to the area, as more awareness, education and, support, is needed for those living with brain injuries.
“I had concerns that it would be a hard sell within the local community but, living with a brain injury for so many years, I wanted to be the agent for change.
“I wanted to be that one that spearheads, and speaks out, for all survivors and caregivers. To be that local person that can put a face on brain injuries within our province, and beyond. If there is a gap in services, it should be addressed, and corrected.”
She compares brain injuries to snowflakes – each one is different – and it depends on what part of the brain has been injured.
Bartlett, who grew up in the family’s 200-year-old homestead in Bartlett Mills, had a significant heart problem from when she was a child. She was planning to marry in May 2004, and knew if she wanted to have children, it would have to be corrected.
She underwent the surgery in March, at the age of 36, shortly after her father’s death in February. One valve was replaced, another repaired, and her aorta was widened to allow more blood flow. The surgery was scheduled for three hours, but took nine, due to complications.
It was a complete success, and everything was progressing normally, until the second day, when she suffered a severe anoxic brain injury, and has been told she was without any oxygen for five to seven minutes.
“They said I was brain dead, with no hope of survival. I was just being kept alive on life support. My mother had to make a decision. She didn’t want to pull the plug, even though I had said in the past I didn’t want to be kept alive on machines.”
Bartlett was in a coma for 10 to 12 days, and her family began making funeral arrangements. They were told that if she did survive, the outcome was uncertain, and she could be left in a permanent vegetative state, so the kindest course of treatment was to remove all life support.
“My family made the difficult decision to remove all life support, and moved me to palliative care in St. Stephen. They brought me home to die.”
On the third day Bartlett was in palliative care, her best friend was brushing her hair, and she said “ouch”. The decision was made to take her back to Saint John Regional Hospital, where more tests were ordered, and showed she was slowly waking up.
“It was a waking up process. You wake up slowly over a long period of time. I was not fully awake for months.”
The doctors did caution her family that, due to the severity of her brain injury, they did not know to what extent she would recover, and it was a long road.
“The recovery has been long and tedious, but my family and friends and supporters are my lighthouse, always guiding me, supporting me along the way. It still continues, even after all these years. It is really easy to get lost, when your compass has been severely damaged.”
Bartlett was transferred from the neurological ward to rehab, where she had to learn everything all over again – sitting up in bed, eating, walking, reading, writing, math, and grooming.
The first thing she had to relearn was how to swallow, and, once she had accomplished that, she was asked what she wanted to eat, and the first meal she requested was a Big Mac, and a strawberry milkshake.
After being released from hospital, she continued to work on physical therapy, occupational therapy, and speech therapy as an outpatient for more than a year, and finally got married in May 2005, but she has never been able to return to work – she had worked as a supervisor at the call centre, in Saint Andrews.
“My short term memory has been severely compromised, and I had no memory of attending my father’s funeral prior to the surgery. Mom was there when I asked why Dad hadn’t been in to see me. I do remember the tears, the crying, when she told me Dad was gone.”
Even after all these years Bartlett, now 49, said she still has problems forming and finding words on occasion, and her brain injury also affected her sense of direction so she still gets lost occasionally.
She said she couldn’t manage without her cell phone, which she uses to keep track of appointments, grocery lists, and when to take her medications.
“I have to keep everything on a very organized schedule. I have to note when I took my medications, otherwise I don’t know if I took them or not. That probably won’t ever come back.”
Bartlett does a lot of her own therapy. She knits but cannot crochet, because she does not have the dexterity in her hands, does jigsaw puzzles, and crosswords.
When her husband was working in Alberta, she flew out to join him, and discovered the Alberta Brain Injury Network, and she became involved with the organization. She met others with brain injuries, and realized she was not alone.
“As I met other people, I thought maybe this is not so bad after all. This is not a life sentence.”
With the help of her late mother, who had moved out to Alberta to join them, and acted as co-pilot, she started driving again then, as she got more comfortable, she began exploring the town where they were living by herself.
After she and her husband separated, Bartlett moved into an apartment with her dog, Molly. She said the quiet, passive, shy Michelle began to blossom, and she had gained her independence back again.
When she found out she would require heart surgery again, Bartlett decided to return to her family in New Brunswick, as she would need help with her recovery, but it turned out a change in medication was all that was needed.
Since returning to the province, she has helped start an online support and awareness group in Saint John, and works tirelessly advocating for brain injury survivors, and their families, in the city and surrounding area.
“I have improved a lot since 2004. I still have a long way to go. In 2004, I literally couldn’t interpret what my eyes were seeing when I was released from hospital. To read a book, or watch TV, was impossible.”
Bartlett said there are people out there who want to talk, and she can be contacted on her Facebook page or by phone (654-1775). She said this not only helps them, but it helps her as well.
“There is a stigma around brain injuries and strokes that you are never going to be able to take care of yourself, and never going to be a contributing member of society, but that is not the case.”