Interview with Michelle Bartlett
Can you please tell me a bit about yourself? You may start wherever you would like.
I live on the East Coast. My brain injury happened ten days after my dad died and two days after I had open heart surgery. What happened was that my lungs stopped and then my heart stopped and we don't really know why things happened that way but they happened. I was engaged at that time and was going to be married that spring, but I was in a coma for 10-13 days. But they said I wouldn't survive, like there had been too much damage to my brain and they put me in palliative care. A few days after I was put in palliative care, my best friend was there and she was brushing my hair and I said “ouch.” People who are palliative and unconscious don't say ouch. And they quickly realized that something was happening and they sent me back for another MRI. And they said “she's coming around, we don’t know how she’s going to recover, she could be in the vegetative state she’s in now, we don't know, we'll just take this as it goes, one day at a time.” So I came out of it and I started walking and talking, but it was very slow; you don’t just snap out of a coma. And I think that's a big misconception because of TV and movies, that people snap and they're out of a coma. That's not how it goes. I wasn’t expected to survive. The research I did with the University of Toronto showed that only a fraction of the population would survive an injury like mine, so that was pretty eye-opening to me. And 17 years later I’m here talking with you. So that's kinda my story in a nutshell. And I’ve gone on to speak at brain injury events. I worked with the University of Toronto for different research projects. I do a lot of survivor support here on the east coast. You’re on the west coast, I see great differences between the east and west coast in terms of services.
How do the services offered differ between coasts?
In my opinion, brain injuries aren’t recognized as a thing. Whether it be domestic violence or a hit in the head or however, the medical community doesn’t recognize it. It stops at Toronto and [the recognition] goes west but it doesn’t go east. It's really frustrating. And for me to go to the provincial governments, they're going, “you’re just a survivor where’s everyone else” and I’m like they’re hiding in the shadows waiting for someone to come forth, but they’re so beat up by the systems.
What kind of work did you do with the University of Toronto?
It was a lot of patient advocacy work. It was a lot of “what do you think? In your experience do these research results look probable?” And I would say “Yeah, it is,” or “No. Run your stats again.” So I’ve done a few different projects with them. So the last one was about their domestic violence toolkit, and revamping it. They asked me what they should include in it, how I found the wording, do I like these images. So it's kinda getting a survivor’s perspective, so that’s kind of where my input comes in, and where my advocacy work goes with the University of Toronto.
Did you have any symptoms after your injury?
Yes. I still cannot write clearly, even to this day. My memory is not exactly the greatest. My long term is intact, but my short term, I have to have my cell phone always by my side for appointments or notes or grocery lists. That was one of the first things they told me in rehab, to always keep notes. I used to do post-it notes, then I’d forget the post-it notes. I use my phone for an alarm if I have to get up in the morning. And for my medication.
What are some of the routines that you take to cope with your symptoms?
If I’m driving someplace I will use GPS. It doesn’t matter if I’ve been there numerous times, but if I’m driving someplace I will use GPS. Just to give myself that extra level of security. I always double check my purse, making sure I have my wallet, my debit card, my credit card, my cell phone, my medicines. So I’m always going through my head my lists of things I need to make sure I have with me.
How has living during covid affected you and your injury recovery process?
Life with a brain injury is isolating anyways, but with covid, it’s more isolating. Even things like going to the hospital to get bloodwork is a challenge because you have to go to the hospital, make sure you get a mask, and they ask you the tests, the questions. You don’t have to wait though here in New Brunswick. So that is a plus here, because there’s not the waiting that there was. But on the other hand, healthcare in
New Brunswick is absolutely terrible. Especially for lower income people, as most brain injury survivors are. Because you can’t get drugs you need covered, you can’t get dental coverage, you can’t get eyewear coverage. Because you are constantly fighting the system for you to lead a basic essential life. We’ll ask for things and it’ll be refused. Refused. Refused. And you’re like “what do I do?” I am going through it again because I am on a special blood thinner because when I was sick, trying to get special authorization they said that I couldn’t take it and that I had to take another one and I said that I couldn’t because I’m allergic to the other one and that it was the thing that made me sick in the first place. And they didn’t approve it. It’s $200 a month! And I had all the paperwork backing it up saying I needed it. And now they’re telling me they won’t cover some dental work for me. And you’re constantly fighting with the provincial government. And this happens in other provinces too. When you have someone who is severely disabled, they shouldn’t have to fight with the healthcare system to get proper medical coverage. It doesn’t make sense to me. Thats a big problem in Canada.
Interviewed by Jasper Delichte