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How do you adequately summarize not only a year in review but find the words to perfectly wrap up an entire decade?  A decade of such immense growth, heartbreak, gut wrenching, loving adventures that you couldn’t imagine ten years ago? A decade that collected more pieces and moments of baggage that you couldn’t possibly carry alone, while finding the right and willing people to help carry it? You can’t. 

But I will try for the sake of the 5 people that still read this little scatter brain of mine, in some attempt to offer profound candour in the reflection from the same decade we all just lived, worldly different. 

If you look back through the pages of this small online diary of mine, you’ll find four “Year in Review” posts leading up to the finale of this year, this decade. From 2010-2015 you won’t find my words publicly written because I was putting them into essays and resumes chipping away at what I thought would be success in my university and professional endeavors. Meanwhile my tearful attempts to get ahead in a game I was only just entering, my immune system was slowly eating away at my insides. 

I’ve told the story a hundred times but by 2015 I was rocked to my core when the stress of being mid-twenties knocked me off my feet and rerouted what I thought I had in store for this life. But how does anyone ever know what they have in store? Haven’t we all been rocked and haven’t we all been pleasantly surprised when the universe shows us a new way, through trials and adversity? Is my story actually that unique at all for a mid-twenty something to be knocked down? Probably not. Which is what the next five years taught me. 

I wont summarize my love for New Years or my reviews on the past 365 days, with theories about how the past 12 months have now set up the next 12 because I’m usually wrong. But I love being told I’m wrong by the universe. If you remember my one and only goal for 2019 was to try to enjoy.  Find the fun and joy in a year ahead that would be busy and structured with work and school while keeping in touch with my gut so it wouldn’t sabotage me (literally) while I do it. And I killed it. I nailed 2019 on the head. I did exactly that. Checked all my boxes, lived that productivity cycle and found the most joy in so many corners of this world, including my little apartment on the 10^thfloor or the comfort of Newmarket. 

While I sat in more airports than I ever have in a mere year, I felt the most excitement and gratitude for the chance to see this big beautiful world in celebration of individuals who could not. From the bluest seas of the Caribbean to the reddest skies of Madrid, my insides exploded with an overwhelm that I’m not sure has a name.

I’m not sure I can articulate sitting in the middle of the ocean, cheersing my family members to a New Year and adventure, together on our first family vacation while missing our matriarch and patriarch. Sipping champagne and Harvey Wallbangers toasting to the two heads of our family who would have adored the simplicity of just the family being together laughing. I don’t think anyone could articulate watching the sunsets over St. Maarten knowing the people have just faced destruction and their own true anguish from hurricane season, leaving behind a country full of devastation yet breathtaking compassion for one another in true kindness. But that’s what I mean. It wasn’t just my world that was rocked by this decade. It wasn’t just my bubble. 

How do you describe sitting at Pearson International, alone but surrounded by hundreds of people, waiting to board a flight for a trip of a lifetime across the Atlantic to see some of the best humans, while missing a key one. One that should have been there beside me but wasn’t? Weeping in Gate C35 waiting to catch a red eye while everywhere around me was consumed by the same big airport emotions that no one notices. But it was perfect because the moment was mine… and hers. You can’t describe those moments, no. But you can share them on the drunken sands of Cadiz or streets of Lisbon savouring the adventure and heartbreak of closing in on 365 days of grief. Holding hands of just anyone else who gets it. And again, it wasn’t my world that was just rocked this decade. It wasn’t just my world that IBD turned upside down. And it wasn’t just my world that felt that despair. 

I’m also not sure if I can explain the sadness of not just losing all my grandparents within three years but also watching my own parents cope with the biggest loss of their own. When suddenly my rock solid foundation of strength faces their own sorrow and their world views shift between heartache and comfort in knowing the years of leaving a good life at peace. We found sentiment in photos, home videos, jewelry and old stories of leaving Vancouver and finding family in Ontario. We found consolation in knowing a hard work ethic on a farm lead to a big family that can look past differences for some solace around holidays. And again I am reminded that it wasn’t just my little short decade that was rocked, but rather lifetimes and generations reviewed and remembered. 

If I reflect on the first half of this decade I am reminded that Kraft Dinner and vodka cranberries three days a week was no way to treat those sick insides of mine but do I regret the messy and beautiful aspects of university (especially second year)? Absolutely not because I opted to stay there for six years. And although it looked like I was drinking my way through a teenage heartbreak and “finding myself” at the bar and library, I was actually living some of the most profound days baking cookies, making forts and watching movies with my person. My all time favourite soul sister who stood beside me while we both stepped into the confidence of womanhood, batting down some of the destructive behaviours of university boys and also ourselves. Some of those most meaningful moments of those six years were learning to navigate how to stand up for ourselves, take control and prioritize ourselves over the damaging way university can have on someone. The moments spent on Sunday evenings, talking through our drama and the weight of the world, planning our next move knowing it would be beside each other, just now with the right men there too. 

However in the past year more than ever I have learned that Kraft dinner and vodka cranberries are still okay and deserved to be enjoyed, but in much more moderation. While now I treat my body with so so much more kindness than ever before I have found true respect for my gut. And more so than ever I have pride and kindness for those battle scars and insides that have carried me through the last decade and own the accomplishments of what it is capable of. I spend most of my structured routine nourishing it with a regiment I have down to an artform but now in 2020 I’m going to learn to ease up on that routine a little bit. It’s okay if I have a smoothie at 5pm instead of 5am. I wont implode (That’s as flexible as I’ll get).

And if you’ve wondered where my faith in the universe has been the past 365 days, I can assure you there have been some serious mind tricks it’s played on me. I’m certain Jack Willins has something to do with the stars aligning and then not, but in my attempts to make sense of strawberry farms and Whitevale golf course I have lost sight of the sheer fact that I don’t need to make sense of it. That’s the point. The universe has some twisted plan that is not in my control and in my neurotic spiritual crises of trying to understand, perhaps I lost that faith or what was right in front of me. This paragraph probably doesn’t make sense to most readers, but I can’t give away the ending to my blockbuster Rom-Com just yet because I’m not sure how it pans out. However I will say that my love for the ease/ complexity of the universe is still very true and changing while it’s challenged and restored.

2010-2019 has also shown me the elegance of showing up for other humans. I’m not sure I have mastered this artform myself, but I am sure there are some incredible humans in my life that have. Being bedside in a hospital for someone in their mid-twenties is something that not many people have had the chance to do, but I assure you that those who did were not unrecognized. And if you continued to show up, past the hospital barriers, whether that be at a Gutsy walk, funeral, Hamilton or even a text through a screen, you have been a testament of true support, friendship, grace, or baggage carrier and it is still noticed. 

I wasn’t sure if I should even bother writing this review, uncertain that my words are even relevant any more to an online community that centred around Inflammatory Bowel Disease. I wasn’t sure that a story of health and success was worth typing out or even sharing. But I was humbled on Christmas Day, closing out this decade with the all too familiar sight of a toilet full of blood, more than I have ever seen with a J-Pouch, reminded that I am not the epitome of victory. I am not the poster child of IBD success. I still carry baggage that I need my mom and dad to wipe tears from and help carry. And as much as I try to steer away from my “sick person” narrative, we’re all still being knocked around a little bit. 

What I am certain of is my love for New Years and airports. And what better way to celebrate 30 years on this planet Earth than finding myself in baggage claim again this upcoming year. I am certain still that illness and heartbreak don’t show mercy to everyone, yet I am privileged to have experienced both in the past ten years. And I am still certain that my vulnerability and humility have navigated me through these years, and will continue to do so. I’m still certain that compassion and kindness are what guide humanity and if we open our ears and hearts to others we can guide each other. I am still certain that my love for words will find a way to the right people, those who may need them or return them my way. And I am still certain that everyone comes with a little bit of extra baggage. 

I’m still here. I’m still bopping around navigating this life after illness, piecing back together what fell apart 4 years ago (WOW) and writing a new narrative that does not involve the sick protagonist. I’m here.

And for those few readers that may still be interested, I thought I would update on the past happenings of the last few months which involved a whole lot of gratitude, a whole lot of self-reflection and a continued pain in my ass.

Mental Health : When it came time to launch my 2019 Gutsy Walk fundraising it felt like my knees were collapsing underneath me in the darkness of winter and loneliness of writing an individual profile rather than my team and suddenly my anxiety and sadness creeped right back up. It was a blur of unrecognizable days only pulled through with the help of my select few people reminding me I am not alone this year.

The debilitation of my mental state did lead me to seek help, help that I had promised myself 4 years ago but put on a back burner. Although I’m not convinced therapy (or at least this particular therapist) is for me, it was relieving to hear I am not crazy for mourning the years of my life lost because of illness. I am not crazy for fearing getting sick again. I am not crazy for living in my bubble and avoiding dating.  I am not crazy for being triggered by grief and loss.  Words like “adjustment disorder” and “trauma” were thrown around that at least validated these emotions and when I was told to check [these] boxes I could confidently say, “I already do.” So maybe this brief stint of professionalism is what I needed ….at least until summer arrived.

Gutsy Walk: And did it arrive with a kick off. When I say those select few individuals reminded me that I was not alone, they did one hell of a job. My personal fundraising in past years was most successful around $3000. However the generosity and support poured in in overwhelming buckets this years and tipped my goal to $5150. Can you believe that?

I had a speech honouring Lindsay nailed down pat in my memory but as soon as I started speaking, my throat tightened and my eyes welled that the only thing I could do was read. Just read the words on the page. Just read what I wrote. Just read enough to get through. Was it delivered in a way that met my expectations? No. But did I read it with a little bit of composure? Sure.

The day itself was an absolute blur and I am quite certain I did not thank everyone who showed up in a way that was sufficient enough. There weren’t enough words or hugs that I could offer that actually showed my gratitude. I knew if I slowed down enough to soak it all in, there would have been a break down. If I slowed down enough to think about the day and what it meant, I would have fallen to my knees. If I was present enough to realize that I was walking alone, yet with dozens of people, I would not have stopped crying. If I remembered the joy that was 2018, I would have been overcome with sadness that was 2019. I knew that I was on the brink of an entirely different state so I stayed on autopilot. Autopilot of smiles and thank yous, that really didn’t have enough meaning.

So here are the words that I could not say. To an aunt who flew up from Florida. To my person who held my hand. To my Mom who reminded me over and over I wasn’t alone. To my Dad who pushed to get those donations and was my biggest fan. To my agent who shared my story with pride to bring in more money. To my sister who saw the dark days. To anyone who drove in from Guelph, Kitchener, Whitby, or Barrie. To my girl gang who brought their devoted husbands and babies, finding time in their busy weekend schedules. To new friends and old friends there to capture moments in beautiful photos. To every single text sent that morning saying they are proud. To anyone who donated, from close to home or around the world. To a foundation who was supportive and trusting of me. To a grieving family who let me speak on your behalf.  I see you. I see every single one of you with overwhelming gratitude and love. I see you with admiration and crippling appreciation. I see you with tearful eyes and a bursting heart. Thank you for being you.  I certainly was not alone.

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Physical Health: On that note it was time to check on that little relentless immune system of mine wreaking havoc on my last little piece of rectum. And sure enough the inflammation is still there. Still bothered and painful and bleeding. BUT the good news is there are no funny looking cells this time so all I’m dealing with is chronic pain. My GI is going to consult some expert in Chicago to see how to target that but in the mean time I’ll keep drinking my anti-inflammatory smoothies and green powder. (Does all that even help? Good question)

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Celebration: It’s officially #2019part2 !!  Happy Canada Day.

Linds and I made a plan to celebrate good health. And although she won’t be joining me, I am going for both of us. With a handful of girls who can read my mind and take the words right out of my mouth…I’m coming for you. I’m coming to share in the joy of this big beautiful world and to celebrate the most special soul who brought us together. It’s been 4 years since my world was turned upside down and now I’m ready to see the other side. Colitis does not have to be forever and I’m just going to pack up my bags and take that pain in the ass with me.

We all come with a little extra baggage. And I’m bringing mine to Spain.

Every year I have a theory about summarizing the past 365 days, and how it will impact the New Year. I’m sure I’ve written about it before but it started in 2014 when I reflected on how that year didn’t’ stand a chance to be good for anyone because 2013 was so devastating to several people in my life/community. 2014 was this year of letting the dust settle, and recovering from tragedy that it couldn’t possibly be exceptional for anyone. But 2015 was IT. 2015 was going to be MY year….

And then my world was turned upside down. By March I was hospitalized and I distinctly remember Bella saying, “It’s okay Stace, you still have the second half of the year….#2015part2.” But by September I had become so ill and hospitalized so many times that the final quarter of the year was recovering from a colectomy and now learning how to manage an ostomy. And my reflection on 2015 was SO SO different from what I predicted.

So 2016 HAD to be better. I wasn’t fighting a flare up, my hair was growing back, I was off prednisone. But my theory stood true in the sense that 2015 was so tumultuous that 2016 didn’t stand a chance because although I was physically better, mentally and emotionally I was not. I learned that anxiety and depression are the real deal and like a tidal wave, those emotions hit AFTER the trauma. It was confusing and lonely and there I was fighting a new battle with my brain, while my gut healed.

By 2017 I had my final surgery, and I was ready to start living again. And things started to happen. All the amazing things I had been waiting for fell into place. I moved out, started in a new city, started a new job, bought a new car, recovered from that last hospital admission, went to Amsterdam and realized I was back on tract. However things still weren’t clicking in my mind and I couldn’t quite figure out why I wasn’t feeling better emotionally. Why I wasn’t BASKING in the joy that was 2017.

A year ago when I reflected on 2017, what I realized that although externally everything was going well, internally my heart was still hurting. If I could summarize 2 things that happened in terms of my mental well being it would be this: The previous 2 years absolutely killed my confidence and self concept. It was as if I had been bullied by the universe and told over and over you’re not strong and let me remind you how. In a very vain way, I also hated looking in the mirror and I had not regained that self worth and conviction in my looks. The second thing is this innate fear that developed of getting sick again. Don’t get too comfortable in this new life because it could be ripped away any second. I couldn’t enjoy all these accomplishments without the worry of it all being taken away, at the split second of a bad flare.
At the beginning of 2018 I did a lot of journaling and self reflection and I realized this was silly. I have the ability to live life in the greatest way, and I am not taking advantage. I realized that things could change at any moment, and that was out of my control. The past few years so many things were out of my control.  In the middle of a panic attack your mind spirals so fast that you can’t even control your own breathing and this was not okay by me. And in the middle of a flare up, your body shuts down so fast you literally can’t control your bowel movements which was also REALLY not okay by me.

But I COULD control a lot of things. I could control how much I exercise, I could control what I eat, I could control what and how often I’m reading and writing, I could control how much I drink, and how much I spend. I could control how I speak about people and my approach to each new day. I asked myself, if I wasn’t feeling confident, what can I do about it? And the answer was to take care. Spend the time taking care of my self and all the good things will fall into place. I developed this faith in the universe that if I did my part, it would repay me.

I added an element of spirituality in my life that was the missing piece I didn’t have in 2017. I’ve always believed in the universe and good energy but I put that more into practice this year. That shift in my thoughts daily and in my journaling would bring back positive energy my way and I developed a devoted faith (which I’m still working on) to trust something bigger than me. That was tested to the brinks come July when I prayed my heart out for Linds and believed in miracles and had unwavering trust that she would get better. And when she didn’t I was so so mad at the universe. In a time where prayer was new to me, I felt like it failed. And I struggled to figure out why. Did I not do it right? Did I not pray hard enough or loud enough? HELLO?!

But then I thought about my prayers. I asked the universe to ease the pain. I asked for her to not suffer. I asked for her to come home. I asked for her family to find peace….And that is what happened. In a weird way, they were heard.

So that missing piece in my life remains, and I continue to develop a relationship with the universe that will bring continued healing to my life. As the last few months of this year brought on a new flare up, I think I’ve found the right team of people working in my favour to provide medical but also natural treatments to my little bit of inflammation. And my shift in mind will transmit that positive energy right down to the bottom of my bottom.

Nothing really phenomenal happened per se in 2018 for me. I didn’t travel or get promoted or meet the love of my life (I don’t think). But as documented by the growth of my hair, I can assuredly say this was the year of the most personal growth. With a best friend and sister who sat beside me while I came out from under some very dark clouds, I allowed them to help carry some baggage that was still too heavy to carry alone. I have so much more learning and growing to do, but I’m ready because I worked hard this year and it’s paying off.

So here’s my resolution for 2019: To ENJOY. I’ve built the foundation to take care of myself and now it’s time to enjoy it. To have more fun, practice more gratitude, smile and to stress less. 2019 will be busy but I’m hoping to just take pride in myself and not over complicate life. It’s really simple that we live, and we die and what we do in between should be filled with the good stuff.

Thank you to anyone who still actually reads the words my little scatter brain has to say. Thank you for skimming my FOURTH year in review. YOU are the good stuff and I hope 2019 brings only health, peace and FUN.

My approach to my health has now moved from focusing solely on my gut and digestive issues to a holistic attitude encompassing my mental, emotional, physical and spiritual self. And in this shift in perspective, I’ve had to take a step back and forgive this body of mine that has betrayed me and learn to slowly love it again. I’ve written about a complex relationship I have developed with food, and in that the complicated image of self and identity formation as my physical body has gone through rapid changes and adjustments. I’ve been let down by this body of mine time and time again it’s hard to maintain a positive sentiment towards it….But it’s the only one I’ve got and I love it more than ever now.

Continue reading “How to Love Your Body After It’s Betrayed You” →

They say you can’t pour from an empty cup. I’ve known all a long that stress is a trigger to my IBD and that my immune system will go into full on attack mode when my mind is not chilled out. At the beginning of this year I got into this really fantastic place of coping with stress and mental wellness by approaching my health holistically: eating well, exercising, reading, praying, resting, meditating, writing. And it’s been awesome. I’ve never felt better.

But then as the second part of that year tested that to the very brinks of danger with an extremely busy work schedule, more wedding and baby celebrations than I can name, friendships that have proven to be not reciprocal, and a friendship that has been lost to illness.

Throughout the past month without one moment to spare, I kept piling it on, telling myself I can handle it, convincing myself that I’m not only strong enough to carry my baggage, but I can carry that of others. I prepared all year for this busy month, financially and logistically, fitting in my utmost support for everyone else around me, giving my absolute heart and soul to my people. I could navigate my grief by keeping busy and expressing utmost kindness and compassion to everyone else.

I’m healthy now, I can handle it….and we all come with a little baggage right?

That is until I saw an all too familiar sight of a toilet full of blood. And heard the all too familiar words from my GI, “There’s sever inflammation.”

Hello you crazy lady: you have a chronic illness.

It’s a scary reality how true and physical the effects of stress are on the human body, particularly to someone with IBD. Suddenly I’m back in the catch-22 world of “stress = inflammation; inflammation = stress.” And it’s time to slow down. I did not go through the past 3 years just to be thrown back into a flare up because of stress. Hell no.

Thank God for the select few individuals who remember to ask, “but what about YOU? How are YOU?” because they’re a very necessary reminder to check in with myself and recognize the dangerous game I’m playing having my brain and gut compete (because my gut is winning). They are my saviours.

With the start of a new month (and last year of my twenties) this is a very gentle reminder to everyone that stress will kill you. And apologies in advance for how selfish I’m about to be the next few weeks as I prioritize myself, and step back.

And a reminder to myself: you never know when tomorrow could be the best day of MY life.

When I went through my year of hell I thought that there couldn’t possibly be anyone who could fully understand what an emotional roller coaster this disease causes. I’ve written time and time again about the anxiety, confusion, waiting, changes, decisions, more waiting, bad news, fight and uncertainty. But then I met my match when I connected with Lindsay who would tell me things as if she was reading my mind. Our long conversations included phrases like, “TOTALLY!” or “I know exactly what you mean!” or “You took the words right out of my mouth!” ….and then suddenly her C-Word (Crohn’s) turned into another C-Word (Cancer) and I found myself struggling to find those right words.

Luckily for me, Lindsay was beautifully open and honest and allowed me into her world of now fighting for her life. And one of the things that she told me was that (up until a certain point,) Crohn’s disease had been far more debilitating than cancer and she (at times) felt way worse from a flare up, than she had been during chemo and radiation. She reminded me of the times of crawling on the floor to try and make it to the toilet, or the incredible blood loss, or the pains of the stomach cramping. So once again, we were connected.

Months ago (as if we were just on the same wave length) we decided we were going to team up for this year’s Gutsy Walk. I don’t even remember actually discussing it, but we just knew we HAD to do it together. We had to take on this fight together and tackle fundraising in a dual effort for a foundation that was so dear to both of us. And so was born, “Team C-Word.” Our goal was $5000 and to my most humbling disbelief, we raised $6025.

Leading up to the walk, I knew Lindsay’s health was deteriorating and I asked over and over again, “Are you sure you want to do the walk?” “Do you think you’ll be able to come?” “Do you want to arrange a wheel chair I can push you in?” …Her responses were, “I wouldn’t miss this for the world,” and “I’m doing better than usual and I’m confident I’ll be just fine!” I can honestly say I held my breath the entire walk, waiting for her to say she needed a break or couldn’t do the whole thing. But my god! She raved about the weather, how kind my people were, what a beautiful location our walk was. She took the time to get to know my best friend, my sister and really soak in what a wonderful time with her mom. We took photos, we laughed, we held hands and hugged each other tight. It was the MOST special day.

The Gutsy Walk was the last day I ever saw Lindsay.

We lost her on July 19^th and I will never forget getting that gut wrenching news. My world just became a lot darker, and my baggage just became a lot heavier. Other than remembering my second family being by my side, and a fast drive home from my sister and a long tearful phone call from my best friend, the day was a blur.

The next few days were a slew of condolences and love sent my way because people knew what a loss this was. My best friend said to me, “At first I wouldn’t have understood the significance of your grief if I hadn’t met her myself. But I spent only a couple of hours with her, and I’M completely devastated,”…and so she understood the impact this beautiful soul had on the world, and I had my shoulder to cry on.

The following days included a visitation where I could barely keep my knees from collapsing, and a heartbreaking service where her mother gave the most eloquent speech, filled with laughter and happy memories perfectly encompassing Lindsay’s life. Her bother who was poised, strong and wise, along with an entire chapel filled with people who were touched by Lindsay’s bravery and positivity showed me how much joy she brought to this world.

And then I saw an individual that I recognized. I met her once at a Jays game when she was there with Linds and I remembered that they had only met that day, but connected in a “bile cancer” support group. I don’t know the extent of their connection but here was this girl who only just met Lindsay, sitting at her funeral grieving. I was also reminded of the outpour on social media from individuals all over the WORLD reaching out to me leading up to her passing, asking me for updates and sending prayers. They saw me tagged in recent photos with her (from our Gutsy Walk) and needed to know how she was doing, and needed me to pass along those well wishes and prayers. Once again I was blown away (but not at all surprised) of the inspiration and magic she brought to the world.

Suddenly my world had light again.

The last few weeks have been nothing short of excruciating. Returning to work, to reality, the grind, the day to day, the normal…when all is not normal. I find myself keeping busy is the hustle which has helped absolutely, but then I’ll be driving and I feel that pit in my stomach, or a certain song comes on the radio and I have tears welling up, or I go to send a Snapchat and have to pass over her name. At the same time, that light has shown me rainbows, sunrises, puppy ice cream, sunflowers, and laughter. And I’m slowly realizing that it’s okay to be happy again. It’s okay to grieve, and miss her and be sad, but at the same time it’s okay to smile, to dance, to kiss and to breath. It. Is. Okay.

The last few weeks I also have gained a new love and utmost gratitude for our dear friend that connected us. Kelsey, not only did you share your best friend with me, and graciously allow us to develop a portion of a friendship you already have with her, but you recognized the pain you feel, is in me as well. You have been a ray of sunshine that has reminded me of what a blessing it was to have known the BEST person. You left me with a little Moroccan trinket, I will always attribute to the piece of my heart that is lost, but the beauty this big world has to offer. She is proud you are out exploring it, and next time, it’s my turn to cross the Atlantic. You brought her into my life just when I needed it, and although I’m still navigating the whys and hows of the past month, I know she was somebody I was supposed to meet. So thank you.

I will leave you with this message from Lindsay, posted on the day of her second chemo treatment in an effort to inspire, offer courage, and share that love:

“Trying to maintain a positive mindset when your body’s organs keep failing on you time after time has never really been easy, although I’m doing it well. I’ve definitely realized that being positive isn’t about expecting the best to happen every time, rather its about accepting whatever happens is the best at the moment. Think of it this way: every cell in your body is eavesdropping on your thoughts. If you’re thinking negatively and critically, it’s affecting your whole body. Which is why I choose positive. Positive life, positive choices, positive people.” ❤

In light of one of my favourite holidays, Canada Day, during times of glaring contrast with our southern neightbour, it’s so easy to see where Canada outshines other countries in the world, specifically in terms of our health care. Not once did I worry about a bill or affordability in terms of seeking immediate medical care, and with the amount of care I actually needed, without a doubt my parents would have gone bankrupt if we lived elsewhere. We live in a country that allows access to doctors, nurses and medicine without having to sacrifice somewhere else in our life because of the financial strain. And for that I am grateful.

But this does not come without gaps. Severe gaps in our system that not only IBD patients face but anyone who has gone through a medical trauma or catastrophic injury. Our practitioners can hook up an IV, demonstrate how to maneuver an ostomy, preform hours of surgery, rehabilitate your muscles, plaster on a cast, staple a gaping wound, administer antibiotics, or empty drains. But what happens when you’re physically “better?” ….You’re sent on your way, out of the hospital with a treatment plan and a course of action to keep you healthy, left to navigate the real world on your own. Yet no one tells you your life has drastically been thrown off track and your SOUL has been turned upside down.

Some days I don’t give a second thought to having a J-Pouch or colitis or any sort of inflammation. But I can confirm that not a day goes by that I don’t actively practice mindfulness and consciously put my anxiety and ego in check by vigorously taking care of my mental and holistic wellness. And do you know how hard it is to learn how to take care of my emotional wellbeing without the help from a single professional? HARD.

During a time with organizations like CAMH and BellLetsTalk taking an effective approach to dialogue and stigmatization of mental illness, why aren’t our hospitals and doctors being more proactive to patients of the system? How is it that I spent 14 days at Mount Sinai going though the worst experience of my life without ONCE being asked how I’m feeling emotionally? Without ONCE being offered counselling? Without ONCE being tossed an Ativan?

Why is it that we have to be diagnosed with an illness, or identified has having a mental disturbance before we are offered help? In fact why are we left to seek that help on our own before professionals offer it? I consider myself an extremely reflective and self-intuitive individual but I have yet to check off “find therapist” from my TO DO list which has been on there for the past 3 years. And what about the people who are sent back home and are not as self-aware? Who genuinely just believe there is nothing worth looking forward to or their life sucks and no one to help them recognize that there is positivity after trauma?

Come on Canada, we can do better.

I went to a session about IBD and mental health in March and there were some absolutely wonderful individuals on the panel sharing their stories emphasizing the importance of advocating for yourself and seeking support because of the mental toll the disease can take. However they also discussed the resources and social workers available at hospitals for crisis patients during their time there, before being sent home. And I actually left feeling deflated since those options were never once presented to me. Perhaps I wasn’t “crisis” enough? (Sitting in isolation with C-Diff and an obstruction….on my birthday).

And what about the caregivers? Where is the support for family members who watch their loved ones wither away or who cry endlessly yet are not able to help? For the people who’s own lives have been thrown off course, careers put on hold, and own emotional health taken a beating? We preach about being there for each other but not once has a medical professional offered help for my family.

In the face of a new political climate I urge you to continue this conversation and take part in an advocacy for anyone who is sent home from our health care system without being quipped to handle the distress our minds have gone through. Sure we can fundraise and send a #bellletstalk tweet. We can participate in our walks and rides and post inspirational quotes, but how often do we show up at someone’s front door unannounced to show that we care? And we can be there for one another physically in person.  And how often do we hold those in power to a higher accountability (and rather responsibility) to make those who are ignorant to the resource, more aware?

I haven’t written for my own blog in a while because I’ve become disconnected with the content behind struggling with IBD. It’s so much easer to find something to write about when you’re experiencing new aspects of the disease every day. People who are out living their best life rarely want to sit down and write about the pain. But what I haven’t become disconnected to is that urge to reach out to others; To have those authentic, vulnerable conversations about chaos, pain, and darkness, because within that exposure is clam, strength, light and humanity.

So many times I’ve thought about shutting this blog down. To end this journey and bring it to a conclusion by thanking the readers and moving on. To delete it, deactivate the account, and be left with only the memories of the positivity it brought.

Except I’ve decided to make a shift: Although theoretically the content was supposed to be about the ostomy and IBD, in reality there is SO much more to Baggage Claim. And I believe we have a lot more work to do….

I think every single person has a story to share, and I want to help you share it. There is so much power in the human capacity to show compassion by simply listening. I’ve shared my story. You’ve heard it. Now please, let me help share yours. Use this little platform I’ve built to highlight the gaps in our system in an effort to simply make them better. Use this outlet as a means of support that our health care structure lacks. Use this channel as an influence for inspiration, encouragement and connectivity.

Use me to help you with your carry on bags:

Stacey.willins@gmail.com

1. What form of IBD do you have?
   The form of IBD that I have is Ulcerative Colitis which means my disease affects my digestive tract, specifically in my colon. When I was first diagnosed it was only the last couple of CM and was considered fairly mild, however about 5 years later the disease progressed throughout the entire large intestine and I was unable to achieve remission which is when I had my colon removed. I know some rhetoric around having a colectomy gives the impression that you can’t have a colitis if you don’t have a colon however after having mine removed, I would never say I am “cured”.

   I have a J-Pouch now, which is an internal reservoir using my small intestine and by no means would I say my digestion is “normal,” as well as all the secondary side effects like canker sores, inflammation of the joints, (especially in my hands) and chronic fatigue ….so I definitely still say I have IBD

   

   
2. Why is IBD advocacy important?
   I try to advocate for people with IBD by simply sharing my story. I  listen to other people’s stories, and connect to them or reach out to them. I think it’s easy to be embarrassed by this disease and want to hide, but I find it’s SO powerful to share our authentic selves and bare our souls to one another.

   When I first started writing about IBD and having an ostomy, I decided  my tag line would be “everybody comes with a little extra baggage,” because everyone  is going through some shit. I honestly believe that if we just stopped and listened to people’s stories about not just hardship and struggle but rather resilience and bravery, we would live in a world with so much more compassion and empathy. So my little bit of work in the IBD community has very simply been by just sharing my story of all the guts and glory and trust that people will be kind and open minded, and in turn share theirs.

   

   

   

3. Name a Socially awkward moment?
   There are SO many stories I could share. When I was very ill there were multiple times I had accidents in very public places like in grocery stores, restaurants or in my car. This is the same with having an ostomy, I can relate to panicked moments of having leaks or needing to change my appliance in a gas station.

   But there is one moment that really comes to mind. Because I work in child care, I’m considered part of ratio and can never leave the children on their own. One of the worst parts of having IBD for me was the urgency and incontinence, so not having immediate access to a washroom was really problematic for me. Thankfully I had an amazing Director who was incredibly understanding. One afternoon I was with a group of kids and needed the washroom so I called her on the walkie talkie to come relieve me, and then sprinted to the washroom where I spent probably 10-15 minutes. I felt awful because I knew how much work she had to do and it wasn’t her job to be in program with the kids but here I was taking up her time. By the time I walked back to my kids, I had to go to the washroom again, and just told her, “sorry you can’t leave yet,” as I just turned around and went back.

   This moment was particularly hard because it was when I realized I was in no condition to be working. I couldn’t run a successful program if I couldn’t even get out of the washroom, and I really just was too sick to be there so this was the moment that I knew I had to ask for my first leave of absence.

4. A common stigma you have run in to:
   I know so many people want to help and offer advice but one of the most common stigmas I run into is that by changing your diet you can cure your flare up. This is really not true. It’s an autoimmune disease, it’s systemic and by going vegan, gluten free, dairy free, vegetarian, it will not cure you. Neither will essential oils, yoga, exercise, or natural supplements.

   Do not get me wrong, I strongly, strongly believe in natural, organic remedies, a clean and healthy diet with proper nutrition and hydration, and that a holistic approach to your well being is so benefical to your health, and very likely will help your IBD. But in reality there is no known cause or proven cure and I personally was very resistant to people trying to cure my flare up by telling me to just mediate more. It’s hard not to be insulted because as a patient you bet your ass I was doing EVERYTHING I could to save that little organ of mine

5. What do you want other people to know about IBD
   I think people forget that there is a massive mental and emotional piece that comes with IBD so it’s just as important to take care of your thoughts and heart and holistic well being. For me personally the mental toll really came after I had my colon removed, and there really isn’t a lot of support in the medical community for your emotional wellness, so it’s really important to be proactive and advocate for yourself when you notice something else is “off” inside of you. I could honestly talk for hours about the mental impact IBD causes for patients but I just want other people to know that although people may look okay, physically IBD is really hidden and that rings true even if they’re in remission too, so again reaching out to one another is so so important and being kind and connecting to other people is really powerful.

   That being said it’s also so important to continuing fundraising and raising awareness, so there is a MASSIVE amount of gratitude I feel for anyone who donated to this year’s Gutsy Walk. We raised over $6000 for Crohn’s and Colitis Canada and I cannot express how appreciative that support is. Even just simply showing up to walk beside us means the WORLD and I’ll never accurately be able to explain my humble thanks.

   Keep talking. Keep sharing. Keep helping to carry others’baggage.

About a year and a half ago I posted an article written my best friend, Sara to shed some light on her baggage dealing with Eosinophilic Esophagitis. Although we don’t have similar symptoms, we both face an autoimmune disease attacking our digestive tract, and we both know the anxiety of facing the real world when people are unaware. SO here is a follow up to her first post about real life challenges (and in my opinion real life resilience, perseverance, and bravery). Sara has been nothing but supportive for me and is the epitome of compassion and grace. Please, read her story with an open mind and show empathy for anyone who is struggling.

” In honour of the upcoming National Eosinophil Awareness Week, I thought I would once again share a few personal stories regarding my rare autoimmune disease. I had written a blog post in the past where I outlined the definition and basics of my diagnosis and disease, Eosinophilic Esophagitis, or EoE. This time around, I thought I would discuss some of my day-to-day life and struggles with EoE. 

To start off, I want to acknowledge how blessed I am to have been diagnosed with EoE over 12 years ago by an understanding and educated gastroenterologist. I am well aware how lucky I am that I have never needed invasive surgery, or a feeding tube which many sufferers of EoE have had to resort to. I am also very lucky that I did not have awful EoE when I was an infant or a child. My heart goes out to all the babies, children, and parents of kids with EoE. 

That being said, EoE still affects my life on a daily, if not hourly, basis. I have tried to explain to others my mindset about eating a family meal together, sharing a meal at a restaurant, or simply having to eat a meal in front of coworkers, my students, family or friends. Throughout the years I have had plenty of embarrassing experiences. I learned that when I go out to eat, I should situate myself close to the bathroom. Prior to sitting down for a meal, I visually or verbally check to notice where the nearest washroom is and plan my exit strategy. I often look for exit doors and try to notice if the washroom only allows one person at a time. I have had to go outside to vomit countless times, and often find it less embarrassing than others hearing me vomit in a public bathroom. I also learned to carry items like sanitizer, wet wipes and tissues with me in case I am not close to a washroom.

Here are just a few of my unpleasant experiences caused by EoE:

1.) High School: I got home from school and was eating an early dinner before heading to my part-time job at the mall. I ate a bowl of pasta, stood up, and with no rhyme or reason, vomited my entire meal up on the table directly beside my parents who were also eating. My meal looked almost the exact same as it did before I ate it, except it was covered in a thick mucous slime. My mom offered support and held it together like a champ. My dad, who has a weaker stomach, began gagging and had to run to the washroom. 

2.) Meet the Parents: The first time meeting my husband’s parents (my boyfriend at the time), we went for dinner on their boat and ate on the dock. His dad cooked BBQ chicken, which I didn’t know at the time was a trigger food of mine. About three bites into my dinner, I felt my food get stuck and I knew I was going to vomit. With no bathroom near me, and nowhere to hide, I ducked beside a car and began shoving my finger down my throat to release the impacted food. While doing this, I often burp loudly as air has been trapped in my esophagus and needs to be released before I can vomit. I was absolutely mortified. 

3.) Restaurant: I was eating sushi with a friend when I felt rice become impacted in my esophagus. I made my way to the bathroom, locked the stall, and took off excess layers of clothing. I began sticking my finger down my throat to release the food stuck, and began vomiting loudly. I flushed the toilet and went to wash my hands with teary, swollen eyes, when I realized two other girls were in the bathroom as well. They walked into their stalls and continued talking while I assume they thought I had left. They said something along the lines of “Whether you have the flu or an eating disorder, why would you be at a restaurant vomiting? That’s disgusting.” I wish they hadn’t, but those words have stuck with me.  

4.) My First Panic Attack: I was at my sister-in-laws house for Christmas Eve this past December. There were around 20 people gathered around a table with extra chairs to fit everyone. I had been situated about 5 chairs into the room, and for some reason I hadn’t thought through any exit strategy. I began eating my dinner and felt food get stuck in the first few bites. I stood up and had to ask four people to move their chairs in to let me out. This process took longer than normal and I felt panic immediately beginning to set in. I visualized myself having projectile vomit in the middle of Christmas dinner, which wouldn’t be the first time. I looked down at my hands and they began to tremble as my eyes filled with tears. The washroom door was closed and locked and I started crying uncontrollably. I made my way down the hall and found an empty bathroom with vomit in my hands and mouth. I continued vomiting while beating myself up about why I hadn’t sat in a chair on the end, I wasn’t closest to the washroom, I wasn’t aware if the washroom was full and I didn’t plan my exit. It was the first time that I was entirely incapable of calming myself down and I couldn’t catch my breath. My husband and his family were completely supportive and accommodating. However, I was mortified that I was so close to aggressively projectile vomiting in the middle of Christmas dinner. 

While none of these are my finest moments, they all contribute to how I deal with my EoE on a daily basis. Over the years, I have become more anxious about having to excuse myself during meals. I worry before, during and after almost every meal that I eat when I’m not alone. Although I have a strategy, it doesn’t always work, and I’m still fine tuning it. 

If you take anything away from reading this I hope that it is simply that everyone has a struggle they are battling. It would be so kind if we all kept our judgement to ourselves, and perhaps opened up a conversation about each other’s struggles, no matter what they may be.”

When I first started blogging I thought I would have a whole section about food and my diet as someone with IBD and an ostomy. And that is probably one of the most commonly asked questions I receive from readers or generally anyone. But in the 3 years since I first got really ill I haven’t once been able to specifically write about it, because there is no simple answer. My relationship with food is so complex and overwhelming that I haven’t quite been able to articulate, let alone practice what a healthy diet looks like. Until now.

I thought I would first explain why someone with IBD or an ostomy (at least in my own personal experience) has such a difficult relationship with food and why it’s so difficult to explain:
Continue reading “My Relationship with Food” →