Dr. Caesar Lim
Dr. Caesar Lim talks about his podcast The Capable Dads, where he and his co-hosts discuss topics related to fatherhood in an open and honest way.
More Than Our Story
Tracey Kerr
Tracey Kerr shares her remarkable journey of nearly losing her life in a severe car accident, during which her self-advocacy, determination, and refusal to give up led to her eventual diagnosis, recovery, and return to the sport she loves. She shares her story to offer inspiration and hope to others who feel invisible or lost in the medical system.
Highlights
Prior to 2005, I had been a graduate student in kinesiology at Simon Fraser University. I was in the third year of my PhD, writing up my thesis, and had lots of publications with other coauthors. I was also teaching at Simon Fraser University.
I started triathlon in 1992 at McMaster University during my undergrad. When I moved to Vancouver, my friends and I started the Pacific Spirit Triathlon Club, which is one of the largest triathlon clubs in Canada and is still going to this day.
I've competed in both the Duathlon World Championships and the Ironman World Championships in Hawaii.
Life was going really well. I had gotten married and had a daughter. She was four years old by that time. We went out for a drive, and unfortunately, a car hit us. They ran a light and hit us head-on. I developed a very serious traumatic brain injury, as well as a neck injury and some other problems that, over the course of four years, almost killed me.
I had torn my brain in multiple places, and I was no longer able to read or remember words at all. I couldn't even read my daughter's baby book at that time. I had gone from publishing journal articles and reading at a graduate level to not being able to read at all. I couldn't remember the definitions of any words, and I had trouble speaking.
Whatever I was thinking was not what was coming out of my mouth. I had torn apart in my brain known as Broca's area, which caused expressive Broca's aphasia as well.
Another area of my brain that I had torn caused something called ataxia, and I had severe ataxia, so I couldn't stand up without falling to the ground. I was unable to walk and had to use a walker for two years.
I went from being one of the fittest people in Canada to being one of the sickest, and I continued to get sicker over the next four years.
I would have to go to the hospital 2 to 3 times a week to have a lot of saline, potassium, and magnesium put back into my body, and nobody knew what was happening to me.
I had a serious neck injury, and ended up having a three-level artificial titanium disc replacement in my neck, which is not a common procedure… I had to wait until it came to Canada to do that. So I lived with extreme, severe pain for numerous years.
What kept me going through all of it was the fact that I had a four-year-old daughter, and I had to still be a mom to her.
There were some really hard parts where she didn't know what was going on. When I went to speak, things like "Oh, honey, how's your day?" It would come out, “Yellow, purple, Christmas tree,” and so she would burst out laughing. At first, it really hurt my heart because I had worked my whole life to get to a certain level academically and in sports, and I had that erased in one day.
It really came down to I got lost in the medical system.
I went to the E.R., and they were like, "Oh, you likely have a concussion. Go home. If it gets worse, come back." I continued to progressively get quite bad that following week. Even the neurologist I saw didn't believe that I had aphasia or ataxia. She was given to me by the emergency room, not by a referral. So she wasn't a specialist in brain rehab medicine, so she missed it as well.
Luckily, I had a lot of contacts in the medical community who were also Ironman triathletes, who were able to get me in for MRIs and prove that I had these problems.
It was really me, self-advocating for myself, and fighting for my life that whole time to try and be heard, be seen, and then again, finding out myself how to get treatment.
I had to do speech-language therapy for a couple of years to learn how to speak again and how to read again. And then, with the ataxia, I had to do balance retraining with physiotherapy for a long time.
When (my daughter) was about six years old, I was still using the walker, and we were teaching her how to ride a bike. Having been a cyclist… I just watched this, and I was like, “I just want to ride a bike with my daughter so bad.” So I had my triathlon bike set up in my bedroom on a wind trainer that was permanent, so I couldn't fall off of it. So I would crawl up on there, and I was able to pedal and ride.
My first degree was in neuroscience at McMaster University, and I had done some brain research there, so I really understood the brain.
It was very, very hard on my family to see me like that, and especially my ex-husband, because he was used to a woman who… had paced him at Western States and Angeles Crest and crewed for him. To have someone at an elite level of fitness, now to be at less than my daughter's level of fitness as a four-year-old.
It was just a lot of fighting for my life. I didn't have a moment to feel sorry for myself because I was so set on I was going to do everything humanly possible to get better.
With central diabetes insipidus, I got progressively worse over the next four years. I had seen multiple specialists, nephrology and endocrinology. I knew enough about the brain that I figured out that I must have injured my pituitary gland and hypothalamus, and that's why I was losing my water… my fluids and electrolytes. I went to a specialist, and I said, "I think I have this condition called central diabetes insipidus," and he looked at me and said, "That's impossible because it only happens to people in a coma. It doesn't happen to people who are walking around."
By that point, I had gone from 115 pounds of solid muscle (to) about 89 pounds. I was having to use a wheelchair because I couldn't breathe, and was so weak from severe dehydration and electrolyte loss. We went and saw this (endocrinologist), and I explained my situation, and I said, “You know, I think I have central diabetes insipidus; here's all my labs.” She just said, "Excuse me for a minute." She left the room, and she came back in and said, “I don't know what you have. Maybe it's something I've never seen before or something incredibly rare, but I suggest that you go and plan your funeral because you're not going to live more than a month.” At that point, I was horrified.
I was just like, "What are you talking about? I'm telling you I was a brain scientist. I am an academic. I know that you haven't seen this, but I'm telling you, this is what it is.” And she said, "Sorry, I can't help you." It was pretty bad. So, I went home, and I did plan my funeral, and we did our last wish trip.
By 2009, I had overcome my Broca's aphasia... I could read again, and I could do research… I thought there must be somebody in the world who's seen this before.
I looked for a central diabetes insipidus researcher, and there happened to be a specialist in Montreal named Doctor Daniel Bichet. So I called him, and I said, “This is what's happening to me.” And he said, “Send over all your labs.” I sent everything over…and he said, "I do believe that you have this, and I happen to be coming to Vancouver this weekend for the National Endocrine Conference, and I'm going to present your case, and I'm going to make them treat you."
I ended up having the test two weeks later, and it came back positive that I had central diabetes insipidus.
It really is just a bottle of nose spray. You spray it up one nostril, and you hold it there, and it goes into your brain, and it replaces the vasopressin in your brain that my pituitary gland wasn't making… I put it up my nose and sprayed it, and within 30 seconds, it felt like I had a dried-up sea sponge in my brain… My brain just filled up with fluid. I had an ice pick headache… from the day of the accident for four years, and it went away instantly once I had one dose of that medication.
It took about three years for me to gain back my weight and my strength and stabilize my electrolytes.
It's been an incredible journey.
What I found out later was most people get this disease or disorder because they have a brain tumor or they've had brain surgery that damaged their pituitary, and they're usually in comas or unconscious. So they get something called hyponatremia, which is high sodium levels in their blood. But because I could walk around, and I felt like I was dying of thirst all the time, I was drinking water. It caused very low blood sodium. So it was the opposite. They hadn't seen somebody with as serious a head injury not being in a coma. So it was a new case, and a landmark case where you can actually have opposite blood work to what you expect.
There are only between 50 and 250 people in Canada who have permanent central diabetes insipidus. Usually, the people in comas in the hospital recover, and their brain starts making its own vasopressin again, and they don't need lifelong treatment. I'm one of the people that needs lifelong treatment.
If I hadn't been a researcher for years and knew about the brain… I would not have been able to figure this out, and I likely would have died.
I'd always been determined to return to sport. It was just a matter of getting well enough to do that.
Once I was able to stabilize my health, I also needed a fair amount of surgeries from the injuries I sustained in the accident. I had 14 surgeries by this point, on different points of the body because of injuries.
It was really in 2016, after a jaw procedure that I had because I damaged my TMJ joints in the accident, that the pain had gotten down low enough that I started walk-running. And so I just started building up very slowly.
I started run-walking with my dog, and I was able to build up to a 5-kilometer distance. I was able to start hiking with a friend of mine.
I was very grateful and lucky that I have a core group of triathlon friends that I've had for 30 years, and they all stayed with me through all of this, and they wanted to start helping me train again.
In 2016, I worked on running. There was this really cool race called Mount Marathon in Alaska. It's the oldest running race in Alaska and in America, and it's more like a big hike… I ended up flying to Alaska for a weekend and participating in Mount Marathon.
A girl I had met at Mount Marathon. She was doing a hundred-mile running race in the fall, in September that year, and she lived in Utah. She said, "Why don't you come out to Utah and help me, crew for my race a little bit, and pace me?" So I went and paced 10 kilometers of her race for her. Then I went to the Grand Canyon and did a 22-mile crossing.
Lingering long-term impacts from the accident:
I have chronic fatigue. I still have dystonia. So I'm on lifelong… Botox injections for the dystonia. I still have problems with the central diabetes insipidus… sometimes I still get low electrolytes and need to go into the hospital and deal with those.
My brain has never gotten back to that strong academic level or my energy levels that I had before. I get a very tired brain from thinking too much or trying to do too much in a day. I have to rest a lot more than I used to. I find that very hard and frustrating, but I accept it. It's better than the alternative.
I do a lot of volunteering in the triathlon and sport community and the running community here in Vancouver, and I just love helping athletes achieve their goals.
I'm writing a journal article for an online Open AI called Cureus. It's my story as a case study, so that I can share it with the world, so that people who've been in car accidents and have brain injuries, and patients and doctors can look at this, they can just Google their symptoms and my case study will come up, and hopefully it will help people get quicker treatment so they don't have to go through what happened to me.
What her accident taught her:
I can accomplish anything I set my mind to. Even though I had the brain injury, I still have the knowledge in there and the skills that I acquired through 14 years of university to be able to find the way. I have the confidence to believe in myself strongly, that I have enough knowledge and skills to be able to figure it out, and to stand up to the entire medical profession. A lot of people would be afraid to do that, but I wasn't.
Rare Disease Day (February 26) is run and organized by the National Organization for Rare Diseases. They list on their site all of the rare diseases in the world, and I'm very grateful that they did a story on me explaining all of (mine).
NORD spreads awareness around the world and in communities to help people learn about these rare diseases, because a lot of people are thought of as invisible because they're home and they're sick, and they don't become a part of society when they're chronic, seriously ill with a rare medical complication. Some people, you can see their rare diseases, but (for) people like me, it's an invisible illness.
To people going through challenging times:
Persevere. Don't quit. Don't give up. Empower yourself with as much knowledge as possible about every symptom you have and why you have it. Try and find answers and solutions, and ways to cope mentally as well. A lot of that is positive self-talk or acceptance. I had the hardest time with acceptance, that I was forever going to be less than the person I'd worked my life to become, and now it's about going to do the best I can today with what I'm able to do today.
Articles About Tracey Kerr
NORD was founded after the passage of the Orphan Drug Act of 1983 (ODA) to formalize the coalition of patient advocacy groups that were instrumental in passing that landmark law. Since then, NORD has been a national steward and a steadfast partner helping those who battle and care for rare disease feel seen, heard, supported, and connected. We’re a full-service, mission-driven, and independent nonprofit reimagining a future where every person with a rare disease and their families live their best lives.
As patients, family members, clinicians and researchers, we are united by a single purpose — solve the greatest challenges and unmet needs in rare disease patient care, treatment and research.
Rare Resilience: Tracey's Story in Honor of Rare Disease Day
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Vancouver’s largest triathlon club, supporting all levels of athletes, from newbie to seasoned competitor.
Tracey Kerr was one of the founders and the inaugural president.
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Daniel is also years into his battle with brain cancer. He experienced a seizure while on a Zoom call at work in late 2020 and quite literally, his life changed within minutes. After his operation he started to talk about his story but had always known it was more than just him. From then, More Than Our Story became a PROJECT that has evolved into the starting point it is today.
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