I just finished rereading Between Two Kingdoms – A Memoir of a Life Interrupted by Suleika Jaouad.

I first read this incredible book in 2021, it’s a permanent book on my Kindle. And then when I saw the paperback in my very big bookstore, I had to buy it. Even though I have it on my Kindle.

For some reason, I needed to hold this book. To see the cover with Suleika, Oscar, and Sunshine sitting ready for the next big thing.

This book is not an easy read. It’s at times horrifying. Suleika brings you with her inside the many hospital rooms, ICUs, and chemotherapy appointments. It is an honest account of her experiences as a young person on the cusp of adulthood and suddenly dealing with death every single day.

When I first read her book, I knew a little about Suleika thanks to her NY Times column. I was drawn to her because of illness. While I have not had a cancer diagnosis, I do know what life is like with a chronic and at time debilitating illness.

I felt in 2021 that Suleika would understand me, and I her. We shared a common language and at some levels experience. What Suleika so clearly communicates is the life people like her, me, and anyone who has come out of the other side has to live through – the stillness and uncertainty between sickness and relative health.

This space is for me, the two kingdoms.

Rereading this book over the last few weeks has been a comfort. It reminds me of the importance of not losing perspective and the gift of making it through.

We are in some strange times right now – wherever you live in the world. Chaos, darkness, and not-great-humanity are everywhere. This book reminds you of how lucky your are and that there is indeed still goodness.

Definitely read this book. It’s not easy. But nothing valuable is easy. It might just help you shift your perspective. And remind you on those days when you need it, that you are indeed a fortunate person.

Suleika has a new book coming out very soon. Yes, I’ve preordered it… The Book of Alchemy – A Creative Practice for An Inspired Life. And if you haven’t watched it, watch American Symphony on Netflix.

Thank you Suleika for being so honest and open. We need more of this. And thank you for saying what is so hard for so many of us to articulate.

If you’re looking for the book, here’s the cover:

It’s not often I cry in my car while listening to my favourite song. I should have expected this to happen. After all, I had felt my heart pounding in my chest from the minute I woke up.

I told myself it was just “swimming” and there was no reason to be anxious or worked up. But sometimes I’m stubborn and refuse to listen to common sense.

So when My Body by Young The Giant started playing, it hit me in all the spots and I started crying. And like magic, once the song was over, I was a-okay.

One small panic attack in the car. Not bad. I take that as a win. Why all the tears and stress? I was on my way to the Nepean Sportsplex for the Nepean Masters Swim Club Red vs. Blue Swim Meet. (And I have a tendency to get a bit anxious and stressed before sporting events.)

This is a fun and very welcoming swim meet. No medals. No podiums. No prizes. Just bragging rights for the team that wins. Blue won – I was on team blue…

But this meet isn’t about winning.

It’s about all the other stuff that makes sport so special: camaraderie, inspiration, empowerment, fun, accomplishment, and motivation.

It was pretty cool to see and hear people cheering each other on and to listen to the conversations people were having. As I sat in the stands between my events I heard a lot of “great job – you looked smooth” or “you really have improved your technique” or “well done – what’s your next event?”.

The cool thing about a swim meet is you pay one fee and can sign up for as many races as you want. (Okay, at least this is how it’s been at the two meets I’ve done. I think there is a maximum number of events – but this is just a small detail. The point being – it’s like a swimmer’s buffet – swim as much as you can or want to.)

I swam in the 100 meter and 50 meter events for freestyle, backstroke, and breaststroke and I swam the 50 meter backstroke leg of the IM medley relay.

This was a lot. I didn’t have much rest between events. But this also made it a lot of fun. There was never any time to get bored or to dwell on one swim result.

I had zero expectations for the breaststroke and backstroke events – I didn’t even know my predicted times. So there was zero pressure. I just got in the water and swam as hard as I could.

I did have one major goal – don’t get disqualified for messing up the start or the turns. And success – I made it – goal accomplished – no disqualifications.

I took a look at my results this morning. Yep, I’m happy with them. The freestyle times were slower than I would have liked. But oh well. Three weeks ago my back was so sore I could barely walk. So I’m just happy to have been able to swim.

But here’s the thing, the times don’t even really matter. The best part about this meet was how it made me feel.

I felt proud. I’m proud of myself for doing it. It’s not an easy thing to do. And I could have so easily talked myself out of doing it. But I didn’t. I did it. It was everything I needed.

I needed to see and feel the empowering vibes of that swim meet. I needed to see people going for it. It really is so special to experience sport this way – everyone is welcome, regardless of age, experience, or ability. Just come out, put on your suit and goggles, get in the water, swim back and forth.

I can’t wait for the Winterlude meet in February. I’m already thinking about what events I want to do.

This is a video of me swimming the 100 meter breaststroke. I’m the person who didn’t dive off the blocks – I started in the water. One day I’ll be diving off the blocks.

There I said it.

I’m sitting here the day before my ileoscopy. It’s a beautiful day. The sun is shining. I can hear the birds signing. I’m listening to The 1975. And I’m scared. Really scared.

This is something I’ve never really spilled my guts about before. But the thing about living with chronic illness is the fear.

The fear of pain. The fear of the pain coming back. The fear of the pain never going away. The fear of never regaining control again. The fear of how this impacts others. The fear of what if this time I can’t overcome it.

I’ve had a really good run with my health. Apart from three nasty bouts with COVID, I’ve been really lucky. So lucky I forgot that I’m a sick person. It’s easy for this to happen when I don’t look sick. I look freaking great – something I said to one of my doctors on Tuesday. It’s hard to believe that I am sick.

Ulcerative colitis doesn’t go away. An ileostomy is not a cure. The chaos that resulted in ulcerative colitis is still there pulsating in my cells. I just don’t have the normal symptoms anymore. Instead I have the kind of pain that doesn’t show up on scans or in blood work.

Pain that makes it hard to drink a glass of water. Pain that has me doubled over in kitchen hoping Marc can’t hear me wincing. Pain that makes me never want to eat food again. Pain that just never really goes away.

Somedays I think it must all be in my head, because it doesn’t make sense. I wonder if maybe I’m a bit of a softie and that this pain is not real pain but rather an annoyance. The thing is – I know me. I know what I can tolerate.

So tomorrow I’m going for an ileoscopy. It sounds as awful as you think. A camera is inserted into my small intestine so my doctor can see what is going on. The joke about all this is, even if our suspicions are confirmed and I’ve developed adhesions in my solo intestine – there is nothing to be done.

Adhesions are a side effect of some surgeries. The only way to get rid of adhesions is surgery. Adhesions are a side effect of surgery…

Last week a friend asked me how I was feeling about my scope on Monday. I brushed off the question – “yeah, no big deal. Just a scope. I’ve had it before.” Tough talk. That’s what this was.

Deep down I’m afraid there are adhesions. Deep down I’m afraid there aren’t adhesions. What if they can’t see what is causing the pain? Is it all in my head? Am I being overly sensitive and reactive? At least if there are adhesions, I’ll know and we can figure this out.

Sometimes I’m really scared. There I said it.

On Sunday I raced the first race in the Eastern Ontario Cyclocross Series.

And today (Monday), I’m very tired.

And I’m smiling and feeling very satisfied. This is what cyclocross does for me – and it’s something I didn’t realize I was missing until Sunday.

I think it was around 5:30 on Sunday evening when after interrupting Marc for the 10th time during his post-race bike cleaning, he said to me “The fact that you keep talking about your race and trying to figure out how you could have done better proves you had a lot of fun.”

I had more than fun – I thoroughly enjoyed it. I had forgotten what it feels like to race cyclocross. I missed that feeling of going super deep and not thinking I could do another lap and then somehow making it through. Don’t get me wrong, when Jodi lapped me, I was extremely relieved…

But aside from the racing, it’s the people and the local cyclocross community that make this sport so special.

It’s like a reunion of sorts – people who may not see each other all summer are back together to ride our bikes hard, cheer each other on, and to offer a helping hand or advice when needed. Everyone is so positive and happy to see others out racing.

I’m already looking forward to the next race on Sunday. It’s a new course for me and it will be fun to race the Madison. The little known secret is that the Madison is actually the hardest race of the season – a one lap all-out effort, rest while your partner does the same, and then go again – repeat for 60 minutes.

If you’re at the race on Sunday or any of the other races, I’m always happy to chat. You’ll see me riding around on my red bike and wearing the Ottawa Women’s Cycling Club colours.

Here’s an old time photo of me racing World Cup in Kalmthout, Belgium in 2009:

Time flies when you’re lucky in life!

And today, August 8 is a giant reminder of how lucky I am.

8 years ago, I had my colon removed.
8 years ago, I got a second chance at life.
8 years ago, I hit the reset button and started living again.
8 years ago, I got really lucky.

It’s weird really to realize that 8 years have gone by since my life-changing surgery. I know for a lot of people having their colon removed and living with a permanent ileostomy does not sound like a lucky experience.

But, I guess this is where I’m fortunate. Since my diagnosis with ulcerative colitis in 2009 to finally having surgery in 2016, I lived a very up and down life.

So much time spent waiting in doctor’s offices. So many drugs that were supposed to be the answer but ultimately failed me. So many bike races and life accomplishments. So many days when I wanted to quit. So many rewarding experiences.

Many people who met me during this time likely didn’t know I was super sick and struggled to simply leave the house. Close friends and family really had no idea how hard it was to get out the door for a bike ride and to find the nerve to line up at a bike race.

Some days I wonder how I managed to do it. And this is when I remember one of the first things Marc said to me after my diagnosis “This is our new normal. We’ll figure this out.”

And that’s what we did. We made ulcerative colitis normal. It is part of me. Like the color of my eyes – I can’t change it. So we learned how to live life with it and to never let it take over and win.

There were (and are) days when I wish I didn’t have a chronic illness or disability. But I do. And there is nothing I can do about this. So my only option is to get on with living and doing as much as I can with this one chance.

It’s called perspective.

I see it and feel it daily. I have a permanent reminder of what I’m able to overcome. I have a daily reminder to always be striving and doing.

I owe this to myself, to Marc, to the brilliant doctors and nurses who gave me a second chance at life, to my family and friends, and to you.

Steve Prefontaine is a famous runner who was tragically killed in a car accident years ago. One of his quotes stands out for me:

“To give anything less than your best is to sacrifice the gift.”

And this is what August 8 is all about.