Jillian Best
Jillian Best shares her inspiring journey from liver transplant recipient to becoming a world record holding swimmer and the first transplant recipient to swim across Lake Ontario.
More Than Our Story
Michelle de Claire
Michelle juggles many roles proudly: hockey mom, wife, volunteer, maintaining a busy career at an advertising agency; yet she maintains a humble resilience as a daily reminder of the dangers of COVID-19. As the pandemic relinquishes the deadly hold its had over the world for the past two plus years, we are left with a reminder that the fight against it still remains for many of those diagnosed with long COVID, or post-COVID symptoms. A fight that doctors are still battling to this day, and medical and insurance institutions are still grappling with, and in some cases, failing they very people they’re charged with protecting.
A passionate and empathetic volunteer, Michelle leads her life as an example to others. From her charitable work for Alzheimer’s, to her participation with Habit For Humanity, her devotion and esteem extends beyond her friends and family, touching those she has never met.
No stranger to adversity, she believes in living without regret, never backing down, and being grateful for all the little things. In her own words, “You can either have hope, or not have hope. Why would you not want to have hope?”.
Q&A With Michelle de Clair
Tell me something about yourself.
I’ve always held my family in high regard… that has always been very important to me even as a young kid. I have been very, very lucky. First time around in marriage maybe not quite so lucky, but the second time I hit the jackpot. I cannot imagine going through life, and going through what I’ve been through without having my husband by my side. We also have two really, really lovely kids… They’re funny, they’re kind, they’re smart. As I said, I’ve been lucky!
If you could retire tomorrow and money was not a concern, how would you devote your life?
I would look to re-engage in volunteering… Before COVID, I was volunteering at the kids’ school, running events, chairing parent meetings… I volunteered with the Alzheimer’s Society, which is an organization close to my heart because that’s what my mother suffered from for eight years. For five years, we had a team at the Alzheimer’s Walk in her honour and we all wore red t-shirts as that was her favourite colour. She was able to join us for the first four… Each time the number of people that came and joined our team increased. In the last year, the one without her, there were over 70 people on our team. I think in anything, and probably what you’re going through as well, there can be so much suffering that you go through, regardless of what your challenges are; when people acknowledge, when people see you, you feel that much less lonely. And so having those 70 people around me, knowing that you’ve got the support of your community, your friends and family, is incredibly powerful and comforting. It is something I’ll always cherish and be so grateful for.
And my other volunteer work that I used to do… that I’d love to get back into… I did two builds with Habitat for Humanity. One year, I went to Haiti and built houses for all the people that had been affected by the crisis. The other build was in Trinidad. One of the things that I would love to do, is to be able to include my kids in something like that. I’m always looking for volunteer opportunities with them, just to show them… this is what you do… you give back. I want them to have a sense of commitment to your community, or to a cause. I think it’s a really important lesson for your children to learn, as they’re growing up.
I’m always looking for volunteer opportunities with them, just to show them… this is what you do… you give back... I think it’s a really important lesson for your children to learn, as they’re growing up.
How your life has changed since your diagnosis? How has long COVID impacted your life?
Immeasurably. I’ve had some health challenges before. I’m narcoleptic, and I’ve been on medication for 25 years to help manage. I eventually figured out a way to cope with it. But having something that nobody knows about, it’s a little unnerving at times. I’ve gone to a lot of doctors, and I’ve seen a lot of specialists – I tried everything under the sun, I’m open to anything. It’s been a roller coaster, I cannot operate my life the same way that I used to. So there’s a bit of grieving for that, but I’ve also never lost hope… You can either have hope or not have hope. Why would you not want to have hope? I always try to focus on having hope, being grateful for things… I feel that knowledge is power, so I’ve been trying to do things to help myself, whether that be researching [or] talking to other long COVID patients… There are positive things that have come out of long COVID as well. So it’s not all just doom and gloom. Ironically, my health has changed [for the better]… I’m eating the healthiest that I ever have – no gluten, no sugar, no dairy, no alcohol. Drinking a lot of water and just being more mindful of [my] food choices, and understanding the brain-gut connection.
The other thing is that because long COVID isn’t allowing me to have the same energy levels, I can’t do as much. Something positive [about that] is that I’m actually slowing down a bit… I’ve been able to spend a lot more time with my family, which is something that’s really important to me.
I’ve also learned to appreciate [the] smaller moments… there are so many moments around us that we have to be grateful for… Long COVID has really opened my eyes to that.
I cannot operate my life the same way that I used to. So there's a bit of grieving for that, but I've also never lost hope... I've learned to appreciate [the] smaller moments... Long COVID has really opened my eyes to that.
If I can go back to something you mentioned… coping mechanisms and strategies. I’ve had to bring a bunch of those into play myself, so I can relate. Can you share with me what one or two of those coping strategies are?
It’s interesting. I was reading something the other day and it said, “don’t be mad at your symptoms, because your symptoms are your body’s way of telling you a message”. They’re trying to tell you something so listen to them, and try to figure out what it is and if there’s anything else that you can do. With long COVID alone, there are over 200 different symptoms that people have experienced. Personally, there are many different symptoms that I have. My top ones are tachycardia (I’m on two beta blockers a day to try and control that), chest pain, shortness of breath, brain fog, extreme fatigue and post exertional malaise. I thought I was tired before with narcolepsy – narcolepsy is a cakewalk compared to this! I have digestive issues including food allergies. If I do too much physically, I have to remind myself… try and pace yourself. Pacing is a big strategy. I look at the week ahead and figure out where I can schedule naps, and how I can balance work responsibilities.
I thought I was tired before with narcolepsy - narcolepsy is a cakewalk compared to this!
That’s interesting. Friends and family, [they’re] one thing. But the general population, as you alluded to earlier, they’re still trying to figure out what long COVID is. What do you wish more people knew about COVID, and long COVID in particular?
I would like more people to know that 10-30% of people that get COVID, are now diagnosed with long COVID; and that you need to get vaccinated and continue wearing masks. It blows my mind that people can be so cavalier.
At this point, it shouldn’t be a personal question of “am I going to live or die?” when you get COVID… It should be more a question of “will I get long COVID?”. If you were told that for the rest of your life, you might be bed-bound or unable to walk or live your life the way you want, I’m pretty sure that you’d probably do everything in your power to avoid being like that. I wish more people knew what the consequences could be and that the prospect of getting long COVID would have everyone acting more responsible.
I’m at about 70% of how I used to feel, there were months upon months I wasn’t well enough to get out of bed every day. It can be hard too, because people only see me when I’m out of bed and I don’t really look sick (thank you make up1) so they’re like, “she’s doing well”.
I might seem really great for the 3 hours that you’re seeing me, but you won’t see the next 5 hours after that, where I have to go to bed and do all these things to ensure that my heart rate comes down and my system doesn’t crash on me and leave me bed-bound for days.
I might seem really great for the 3 hours that you're seeing me, but you won't see the next 5 hours after that, where I have to go to bed and do all these things to ensure that my heart rate comes down and my system doesn't crash on me and leave me bed-bound for days.
How would you say the provincial and federal governments handled their response to the COVID-19 pandemic?
Shitty. There’s part of me that wants to be empathetic, in terms of, no one really knew what was going on, but now we’re two years into it, and they know how many people across Canada have long COVID – there is not enough done. There are people that are losing their homes because they can’t work, and are trying to get disability – they’re getting shut down. Insurance companies don’t even recognize long COVID as a condition that could be covered by policies. A lot of people, myself included, are trying to find answers, and trying to feel better. This means going through non-conventional methods that aren’t covered by OHIP. I’m paying out of pocket for different treatments, different physiotherapy clinics, and different tests. I’m fortunate, I acknowledge my privilege… I think about all these people that don’t have access to this, don’t have access to the tests, or have access because they just don’t have the financial funds. One of the online support groups that I belong to, this woman posed a question. She said, “I’ve only got this much money until payday, and I my doctor agrees that I should have some more tests done. Which one do you guys think is the best one, because I can’t afford all of them.”
When I first started on this whole journey, my doctor made me feel like there was something psychologically wrong with me. I was so severely gaslighted, it was ridiculous. I remember this conversation where she said to me before they even really knew about long COVID, or as much as they do now… “Michelle, anybody can put symptoms into Google and it will spit out different conditions”. Here I was researching and trying to figure out what was wrong with me and she wouldn’t event listen to me! And then my next appointment, she told me “maybe this was just depression, ” I said look, you’re the doctor, but the last time I checked, having a resting heart rate of 170 beats per minute is not caused by depression.
Some of the best moments that I can have are when I forget I am sick. I love when that happens. I feel such gratitude now for even having the privilege of being able to move my body, because for months on end, I couldn’t.
I feel such gratitude now for even having the privilege of being able to move my body, because for months on end, I couldn't.
Hopefully, nobody forgets about the COVID pandemic. How would you say the world has changed for the better?
I think having employers embrace the possibilities of having hybrid approaches to work. Not everything has to be in the office. I really enjoy working from home although I do miss my team and I miss seeing people. But do I miss the hour commute each way to work? No!! I think one good thing that has come out of this is that we can look at employment, and the way in which people work, a lot differently.
What would you say has stuck with you throughout the years? Something that resonates now more than ever?
Never give up. My mother taught me that, and I’ve taught my kids that too. I wore a back brace for scoliosis for four years, from when I was 12 to 16. I still continued to play sports. It was tricky at times… I had to wear it for 23 hours a day. I could take it off for one hour a day to have a shower and to do my physiotherapy. And as you know, I was diagnosed with narcolepsy at 25. I don’t think there’s anything wrong with facing adversity, and learning and trusting you can get through it, because that builds resilience… I got COVID when I went to Iceland for my 50th birthday, and people ask if I regret going to Iceland? No. I had the best time! We had such a great trip. Unfortunately, I was just in the right place at the wrong time. I wouldn’t trade any of those experiences… If I hadn’t gone through all the things that I’ve gone through, I wouldn’t be the person who I am today. So no regrets.
If I hadn't gone through all the things that I've gone through, I wouldn't be the person who I am today... So no regrets.
What would you consider your greatest accomplishment?
My children. 100% without a doubt.
Let’s flip the script a little bit. Do you have any questions for me?
I wasn’t ready for that one… What you mentioned, you know, that you wake up in the morning and you forget for a minute, and then you realize, but you turn it around, what do you do to turn it around?
Dan:
Well, I don’t think that I was ever concerned for myself. I don’t think I was ever scared, or worried that I was going to die. I was speaking with a friend who asked if I wished things would have turned out differently. I said no. I would not take this thing back, even if I could, because it’s given me two things: Knowledge – it’s given me the gift of knowledge to know my life is maybe more finite than most – so I will absolutely make the most out of it. And second, purpose – which would be this, talking to people, and sharing their stories with others. I think on these two points, and I move past the moment.
Michelle:
You also have the biggest cheerleader beside you.
Dan:
Absolutely…
Michelle, I can’t thank you enough for taking the time out of your day and chatting with me, it’s been amazing. Your spirit is unbroken.
Michelle:
It breaks sometimes, or maybe it’s started to crack a few times, but I’m very lucky that I have my husband, and the support of my family and close friends. And, as I said, I have hope.
Daniel
Daniel is an extremely curious person, a wealth of random knowledge and facts. Extremely passionate about a vast array of interests ranging from health to history, science to athletics, everything culinary and the list goes on. Trust us, you would want to be on his team for Trivial Pursuit.
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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