Marissa: Welcome to the 12 Months, 12 Journeys, 12 Lessons podcast. This show features monthly a different health condition or cause. The goal of the show is to learn from and uplift our guest. My name is Marissa Christina from www.Abledis.com. Today’s podcast is featuring the fierce and fantastic Sarah Levis.
Sarah is a freelance writer, disability advocate, and the voice of the award winning Girl with the Cane blog. She uses her experiences of acquiring and living with the effects of physical disability and of her volunteer and paid work with people with intellectual disability to approach disability advocacy, education, and associated issues in new and exciting ways. Sarah is 34 and lives with her two cats with whom she’s in constant battle for control of her apartment. I’m excited to welcome to the show Sarah. Hello, Sarah!
Sarah: Hello, Marissa. Thanks for having me.
Marissa: I’m glad you’re here! I’m really eager to dive into this month’s 12-12-12 project. Sarah, before we go all in learning about your medical journey, I feel it’s important to have some context. I’d like you to take us back to before you became ill. Give us a sense of who Sarah was pre health issues.
Sarah: I didn’t really have any health issues. My family history has got a pretty checkered history of health issues, but I was pretty healthy. Just your average 22-year-old – a little bit overweight but that’s about it.
I was in university. I was taking a break for a summer from everything and I had decided not to go back and was working for a little bit. That’s when everything went off the rails, so to speak.
Marissa: So then you stumbled into this major medical event in your life. You were 22 and you had a stroke. Take me back to that day.
Sarah: I was actually in a job interview. I was rocking the interview. Even I knew that I was doing a great job. The best way to describe it was I felt something go pop in my head. Within five minutes, I had the worst headache that I ever had in my life. The next couple of minutes, I could feel the pain starting to go down into my neck and into my shoulders.
My first thought was, “Oh, my God, I have meningitis.” I had to stop the interview and get some pain medication – just some Tylenol to keep going. They could see that something was wrong, and they were so concerned that they made me promise to go to the doctor as soon as I was done. But by the end of the night, I was in a hospital and they had done a CT Scan and they were aware that I was bleeding into my head and something was very wrong.
Marissa: Wow. Let’s take it back a bit, because you mentioned headache. Had you suffered from headaches in the past?
Sarah: I had some bad headaches that summer – more headaches than usual. I would get stress headaches from time to time – the sort of ones that everybody gets. But when I got that headache in the job interview, my initial thought was that I had worked myself into a migraine and that this must be what a migraine feels like, because I had been under some stress looking for a job and everything and trying to keep up with school through correspondence work. But no real history of headaches.
Marissa: Wow. So you jump out of the interview and you ended up in the hospital, so I’m assuming you headed straight to the doctor right away. Talk about that.
Sarah: I went right to the doctor from the interview. They had never seen me in the doctor’s office before, and I didn’t have my British Columbia health insurance yet, just having moved there from Ontario, so I didn’t have a card to present to them. I just said to them, “I’m a new resident and I think I have meningitis.” That got me an appointment fairly quickly.
The doctor that saw me didn’t think it was meningitis because I didn’t have a fever and I wasn’t throwing up and I could still move my neck around. But when I got home, I did start to throw up and the pain medication wasn’t doing any good when I could keep it down. I began to think about it. I had been in contact with small children from hanging out with my friends, and I thought if this is meningitis, I want to get a move on this just in case I infected other people. That’s when I called the ambulance and went to the hospital in Nanaimo, which was about 40 minutes away.
Marissa: Wow. I’m so happy that you trusted your gut feeling on that and just ended up calling the ambulance. So you get in the ambulance and head to the hospital and they start running tests. What was the process then?
Sarah: Well, when they heard that I suspected it was meningitis and they heard the symptoms, they did a lumbar puncture, which is the test for meningitis, and they didn’t find any evidence of meningitis, but they did find blood in the fluid that they draw from the spine, which is not good.
So they came back and said there’s something going on. That’s when they sent me for a CT Scan and discovered that I had this brain bleed, or what they call a hemorrhagic stroke and the reason why my neck and shoulders were stiff was the blood was getting into the cerebral spinal fluid, and when blood gets where it shouldn’t be, it causes pain.
Marissa: Wow. Let’s see here. We have CT Scans, lumbar punctures, and was there an angiogram also?
Sarah: The next day when they transferred me to Victoria Royal Hospital in Victoria, which was another ambulance ride a couple hours away. That’s where they did the angiogram.
Marissa: So then they were able to sort of give you the diagnosis of brain arteriovenous malformation.
Sarah: Yeah. They did the angiogram in Victoria. I’m trying to think if they did any other tests there, but the angiogram would have been sufficient because that sort of imaging is going to be as specific as you can get really to make that kind of diagnosis. The neurologist who was there who has had experience with these types of things looked at the film and said, “Yeah, this looks like an arteriovenous malformation.” They said, “We’ll keep you here until you’re stable, then we’ll have to start discussing how you want to get it treated.”
Marissa: Let’s pause the story for a bit and get into a little AVM education. For the listener, what does AVM stand for and can you break down what AVM is?
Sarah: AVM stands for arteriovenous malformation. It’s a birth condition. Mine was in the brain, but it can happen anywhere. They’re most common in the brain or spine. Blood vessels and veins get kind of tangled up and they weaken and start to leak generally in the person’s 20s and it really starts to cause problems.
Because I had never had to have any sort of imaging done before, I didn’t know it was there until mine did start to cause problems.
Marissa: The rare nature of the AVM, and then you experienced this bleeding in the brain, was the main goal for them always surgery and removal?
Sarah: The main goal was to get it treated. With my AVM in particular there was a 4-7% chance each year that it was going to bleed again, so I was looking statistically at the chance of at least one more bleed if I lived to any kind of reasonable old age. I didn’t have any after-effects from this first bleed, but the next time, I might not be so lucky.
They were saying pretty much from the outset were recommending that I did have it treated. They did more tests when I flew back to Toronto where I chose to have it treated to see whether the appropriate treatment would be to radiate it, which is one of the options, or to do an embolization which is using angiography technology to make it smaller with a sort of glue or to do open brain surgery or a combination of possibly all three. It was their recommendation that eventually we do an embolization to make it smaller and then treat the rest of it with open brain surgery.
Marissa: Going to surgery, they say they’re a risk. With brain surgery, I’m assuming that the risks are pretty severe. Did they get into severities with you and start talking about possible risk?
Sarah: They said that there was a 25% chance that there would be some sort of damage that would be reversible and a 10% chance that there would be damage that would be irreversible. Because of where the AVM was, that this would be a round movement. But the way I looked at that and my family looked at that was that meant there would…
And that’s on top of the regular risks of brain surgery, infection, anesthesia risks because all surgery is risky. But the way my family looked at those risks that they quoted to me was that there was a 75% chance that nothing would happen at all and that they’d be able to resolve this problem.
Looking at it that way and viewing it as the fact that I had a ticking time bomb in my head basically that could go off at any minute, there didn’t seem to be any option but to do surgery.
Marissa: The first surgery that was performed was the embolization. Is it that they wait after and then move into the craniotomy or is it something that they just do together?
Sarah: I think they probably scheduled them together out of convenience, get it all done in one shot. They did the embolization on a Friday and then I stayed in the hospital for the weekend. Then they did the brain surgery on a Monday.
Marissa: Wow. So how many hours total would you say you were in surgery?
Sarah: I was in the embolization for four hours – this is what I’m told – and the craniotomy took either 12 or 14.
Marissa: Wow. You mentioned your family. Were your friends and family able to be even nearby when you were undergoing these surgeries?
Sarah: They stayed in the hospital. My dad and my sister stayed in Toronto for the weekend, and then a friend came up on the Monday to sit with them while I was in brain surgery. Yeah, they were there for the whole thing and stayed while I was in recovery until I was out of the recovery room and would end up staying down a whole lot longer.
Marissa: That leads me to all the focus and energy is obviously going to stop this ticking time bomb and stop the bleeding, and basically saving your life. Is the recovery process an afterthought almost? Did they even mention that as part of the introduction to the surgeries?
Sarah: They did. They assume that everything is going to go as planned. They’ve talked about approximately how long recovery would be. I didn’t think about how long I really have to stay in the hospital. I just kind of gave myself a blanket time of three weeks. I was working a summer for an agency in my hometown that worked with people with intellectual disabilities and I told them that I’d be back by the first of July. I gave myself a month, basically.
Marissa: Now you come out of surgery. What were some of the physical effects that you dealt with pretty much right away after surgery?
Sarah: I don’t remember much after the surgery. It’s pretty hazy. I was on a lot of pain killers. It really only truly starts to kick in when I had the seizure. My first clear memory is waking up in the recovery room and my father saying that they might have to go back in and did I give my consent, blink if I understood. I had a tube down my throat at the time. I didn’t really understand much of what was going on at the time. I understood enough to hear, “They might have to go back in. Do you consent?”
Later on, I found out they hadn’t gotten all of the AVM on the first shot and they were debating about whether or not they were going to go back in at that point and try and get all of it – which they decided not to do. But after all that, it’s pretty fuzzy until I had the seizure.
Marissa: After that did you have to learn how to do things again? Did it affect any of your physical or cognitive issues?
Sarah: It did. Even after the seizure I don’t remember waking up, which is what I learned later what led to the stroke. I don’t remember a point where I woke up and thought, “Wow, I can’t move my left side.” It feels like it was just a gradual awareness of waking up into the fact that something was very different. People coming in to do range of motion physical therapy stuff on my legs and testing how much I had actually lost, how much function I had actually lost.
A stroke definitely, depending on the person, can affect their cognitive and reasoning skills. One night when my head was really aching, I was convinced that I could get out of bed and go for a walk to get some air. My brain just couldn’t fathom that even though I couldn’t feel my left side that it wasn’t there for me to rely on. That’s very common with stroke survivors. They really overestimate at first what their body can do.
There were other little things. At first I found it very difficult to read, but that was more surgery trauma than it was the stroke. And just very tired all the time, but that was just a little bit of everything I think.
Marissa: I think I recall you saying that in the blog – that you had to really learn to move away from your dominate hand. Is that something also that you were dealing with was learning how to use your non-dominate hand?
Sarah: I didn’t do that initially in the hospital. I did it as much as I had to learn how to eat enough to feed myself and everything, but it was really once they had gotten my seizures under control and I was able to go to a rehabilitation hospital was when the real work of learning to use my right hand (my non-dominate hand) began. They started that right away, because nobody knew how much function in my left hand I was going to get back.
Yes, I had to learn how to write and eat, and even how to brush my teeth which is just weirder when you use your non-dominate hand – how do to all that. That involved doing strengthening exercises with my non-dominate hand because that hand is always a little bit weaker than your dominate hand is. All that on top of learning to walk and do everything again, basically.
Marissa: Sarah, how long was the rehabilitation after you went to the rehab center?
Sarah: I was in the first one from July to September, and then in the second one from September to December. It was six or seven months in total.
Marissa: What would you say is the type of mindset that you were in to get through getting up every day in a rehab center and having to do your rehab? What type of mindset?
Sarah: I think what I had to do to get me through it, especially in the initial stages, was just to get it through my head that it was either get up and do this or be totally dependent on people for the rest of my life. When I first got to Penetanguishene, the first rehabilitation center, I could still just pretty much sit up in bed and still needed assistance to get people to get me in and out of bed and get dressed and get in and out of the shower. Having that level of dependence on people is quite a jolt when you’re used to doing everything independently.
I thought if I don’t get up and learn to do these things for myself or try to get back to being independent, then this is what it’s going to be for the rest of my life. That thought got me out of bed in the morning.
Marissa: Sarah, were you offered assistive devices like a wheelchair and walker? Did they give you different options?
Sarah: Yeah. I had a wheelchair that I used at Penetanguishene and eventually we got a wheelchair for me at the house that we brought back to the rehab hospital that I used there and that we still have, that’s still at the house, but that I don’t use anymore. I had a chair, and then as I became less and less dependent on the chair, I had a four-pronged cane that I use and again don’t use anymore. Now I have a straight cane. I’ve been through a number of those. And we have all the assistive devices like the raised toilet seat and bath seats still at my dad’s house that I used when I’d come back to the house on weekends.
Marissa: I was reading one of your blog posts and I came across this statement that said, “Having a stroke at 22 has its advantages.” What did you mean by that?
Sarah: The younger you are when you have a stroke, the better your chance of coming back fully from it because when you’re young, your brain is more plastic. There are parts of it that when a part becomes damaged, there are other parts that can take over for that part. The brain can’t do that as well when it gets older. And I don’t know whether my brain did that or not. I don’t know if there were parts that took over for it.
The brain, they call it plastic. The brain is more plastic when it’s young. It’s easier to regenerate neural pathways. So if you’re going to have a stroke, the best time to do it is when you’re young. Get it over with when you’re young.
Marissa: Do you live with the fear of an AVM or stroke returning or is that even a possibility now?
Sarah: I don’t really think about it. In the literature I’ve read about AVMs, there are very odd cases where an AVM has regenerated, but that’s very, very rare. My AVM, despite the fact that they did have to leave a little bit in there, is no longer a problem because that little bit sealed itself off in the year between the surgery and the next angiogram so it’s no longer a problem. I don’t need to worry about it.
I guess maybe I should worry a little bit, because I found out later that the brain bleed that causes stroke didn’t actually come from the AVM area. It came from an area just a little bit away from it and nobody has ever really been able to tell me why, but I don’t really think about it.
Marissa: I want to jump into your blog and the fantastic work you’re doing over at www.GirlWithTheCane.com. For me, the blog oozes your passion and your advocacy. What does your blog mean to you?
Sarah: It’s a way for me to talk about my stuff and what I’ve been through a little bit, and that’s therapeutic. I like writing about it. But I think more than that even before I became physically disabled myself, working in the disabilities field has always been something that’s very important to me and I have a lot of friends with various disabilities. It’s a way for me to make a difference. I write well and it’s a way for me to use that to make a difference.
Marissa: Well said. I want to ask you this. If I could give you the opportunity for one disability related issue to be tackled, what area would you like to see tackled?
Sarah: Wow, that’s a good one. I think that we have to start with how to best generate cultures of inclusion and build cultures of inclusion in all places in society because that’s at the root of the rest of it. we’re in a spot right now where there are so many bizarre and sickening attitudes towards people with disabilities, frankly, that it’s no wonder that we’re seeing the actions towards people with disabilities that they are if those are the underlying attitudes about them. We really need to work on attitude change first and foremost. I don’t know what the best way to do that is. Cultures of inclusion – getting people with disabilities actually out there.
Marissa: Okay, Sarah, throughout the month I’ve been pulling so many lessons from your story. Is there a lesson or message that you want the listener to walk away with?
Sarah: I hope that this is something that everybody can take something from. I think one of the things that I’ve learned most from what I’ve gone through is just because your life goes a different way than you planned, it doesn’t mean that it necessarily has to be worse than you planned. I definitely haven’t pictured everything that’s happened to me since the stroke happening, but there have certainly been many, many blessings in my life that have come as a direct result of meeting the people that I have, being in the places that I have – even having to live back in my home community, which I didn’t think would ever happen. It is what you make it.
Marissa: Sarah, thank you for bringing out my fierce advocacy side this month. Also, thank you for being open to share your story.
If you want to learn more about Sarah, please check out her blog, www.GirlWithTheCane.com. If you want to learn more about AVMs, please check out the Aneurism and AVM Foundation over at www.TAAFonline.org. Thank you and much love.