Sometimes the universe can be SUCH an asshole. How can it one moment be so kind and easy on me, and then turn it’s back on someone far more deserving of a warm place to land? I question the universe every day and wonder why one moment it’s being mean and grueling when the next it’s sending butterflies and rainbows. Why one moment it’s coddling me, and the next it’s flipping off my soul sister. Universe…I don’t get ya.
When I was in England I experienced one of the most stressful environments to date. And as I’m sure many IBDers can empathize, high stress environments are notorious for bringing on a flare up. (Big shout out to teachers with IBD because if you’ve never been on the verge of shitting your pants in front of 30 grade 9s, I assure you it’s horrendous). I quickly spiralled into the worst flare ups I had ever had up until that point and unfortunately I was an ocean away from my gastroenterologist. I also only had a total of 4 friends there. 4. (…. Some of who at the time were only just crossing the line between acquaintances and friends and talking about IBD was definitely TMI). So you can imagine how difficult these few but long couple of months were: sick, lonely and very far from home.
But I very distinctly remember being at now very dear friend Kelsey’s house, predrinking one Friday (likely after having some sort of deep fried food at TGIFridays, preparing to go to some club we were far too old to go to) feeling absolutely EXHAUSTED. I couldn’t keep my eyes open, my legs felt heavy, and I couldn’t catch my breath. So I decided I needed to call it in and go home to sleep. I briefly explained that I was having a flare up and I wasn’t feeling good, not expecting anyone to really understand. But Kelsey piped up and said, “Oh don’t worry I totally get it. My best friend at home has Crohn’s and sometimes she can’t go out either for the same reasons.”
I was floored. Rarely had I met someone who knew what I was talking about and be so understanding. But Kelsey went on to explain how her friend was deciding to go with a surgical route and how brave she was and how debilitating the disease could be so she’s decided to take back control. And I remember thinking, “Wow I hope my situation never gets that bad…It won’t though because I have UC and not Crohn’s.”
Fast forward 3 years and there I was, scrolling Instagram while on a medical leave after going the surgical route, looking at beautiful photos probably of Kelsey and Laura exploring all that this big beautiful world has to offer, when I come across this above mentioned friend who was back in the hospital with another flare up. And I thought, you know what, I’m going to take a chance and reach out to this girl. We can swap stories and perhaps I can be of some comfort since I did go through with the surgeries and it seemed like she was still deciding what her next best course of action could be. And if she was a friend of Kelsey’s, she must be pretty fantastic.
One Instagram message later and BAM: Instant friends. Instant soul sisters. Instant support system. I talk about it all the time but somehow IBD has brought this amazing connectivity though social media and this powerful ability to bond people who can compassionately offer a listening ear or perhaps an emoji hug. It really is incredible because just like that, I had this immediate attachment to someone I had never met. And I’m so thankful every day this happened.
Lindsay has brought so much joy to my life in the last year or so (?) that I’ve known her. She is kind, and positive and genuine. She brings a breath of fresh air to that IBD life when she sincerely wants to talk more about how someone else is doing rather than her own struggles. She gets pure delight from watching her friends and family living their best, adventurous lives while nurses poke and scope at her own. She sees this world through eyes of wonder and beauty and shares it with her inner circle so they too can feel inspired.
How often can you connect with someone over the Internet but feel comfortable enough to talk about your bowel movements? Or our energy levels, or medications dosages, or our mental health, or our sex lives, or our self-image, or our jobs, or our perceptions of the world? How often do you meet someone in person for the first time but feel like you’ve known them for years? How often do you snap chat someone from the toilet or send videos to talk because your hand is tied up in an IV and can’t text? How often do you bring snacks to the hospital only to get the stink eye from the crazy roommate and then weeks later dance the night away? Let me tell you…not often.
But maybe this is the universe paying us back. By saying I’m sorry I’ve been such an asshole to you two, but here ya go…you have each other.
I wont go into too much detail about Lindsay’s story because that’s not mine to tell. But I can tell you that she’s now fighting the fight of all fights. After she kicked Crohn’s ass along came PSC, a rare disease that damages and blocks the bile ducts around her liver. Now requiring a liver transplant we spoke about how this is just one more blip in her story but after that surgery we can conquer the world. Until that was put on hold because the big C word has invaded. The universe keeps throwing curve balls at Lindsay but because she’s been so strong and resilient, and in its determination to knock her down he’s thrown in cancer. But I can tell you that it’s not going to work. You will not break her.
Lindsay: you are an absolute inspiration. I thought my baggage was heavy, but here you come along carrying a ton of bricks, with ankle weights on. All with that brilliant smile on your face. If any readers want to know a story of resilience and kick ass determination…it’s this girls. Not mine. You are so loved by so many people and we can’t wait to see you punch the universe right in the face.
Kelsey: Thank you for introducing me to this kind, gentle soul. Thank you for inspiring both of us to be brave and honest by opening up with words and photos. Thank you for showing us what this whole world has to offer, and instilling that love for life in little humans. Thank you for being Lindsay’s best friend and allowing me to take on a small portion of your role while you’re in Spain. I will keep her safe and close in hopes of doing you justice
Cancer knows no race, no age, no religion, no gender. Cancer doesn’t care if you have your whole life a head of you, or if you’ve already enjoyed one long and meaningful. Cancer doesn’t care about your bank account or your weight or your marital status. It doesn’t care how many children you have or how many obstacles you’ve already overcome. It’s the universes ultimate trick and it’s mean. But it’s not without vice.
I’ve been witness to the power the World Wide Web has to offer and how quickly it can bring people together. I’ve asked you time and time again to rally behind me and either offer your own stories, your own words of wisdom, your own time in comfort or even your own wallet in my fundraising efforts. And now I come to you once again with the same request. Read Lindsay’s story. Look at her beautiful photos. Take a moment to find gratitude in your own lives. And reach out to her. It humbles me every time I see how compassionate readers can be in the kind words you’ve offered me in the past, and now I’m graciously asking you to extend that benevolence off to my IBD soul sister.
We got ya girl