Glennon Doyle, one of my favourite authors, suggests writing from your scars and not your wounds. Simply put, she suggests that writing from a place of pain is too much for others to handle and leads to readers ‘feeling sorry for you’, whereas writing from your scars helps others as you have moved through your pain and are able to write from a place of reflection.
I hate to detour from great advice, but I’ve decided to write in the midst of pain. Why? Because I am not the only one struggling right now. We are experiencing a global pandemic and living with pain has become a shared experience. The stress contagion is high in our community and I know few people who are not dealing with heavy emotions in one way or another. I write publicly because I know I am not alone, and perhaps my feelings and emotions will relate to yours. Or perhaps a time will come when these words will help you move through a difficult space. Regardless, I write as an outlet of comfort, and a reminder to myself that brighter days are ahead.
So.. what pain am I referring to? An all too familiar pain. The pain of watching a family member suffer. The pain of missing life as we know it. Four years ago, our oldest son Jaden became quite ill. After a month of unexplained symptoms, we ended up in emergency at BC Children’s hoping for answers. To be honest, we were hoping for a prescription that would fix him so we could return to our regular routines. I remember feeling irritated by the seven hour wait, thinking that would be the longest part of our journey. I truly wasn’t prepared for the nurse to tell us our son had a disease without a cure.
2017 was the beginning of our battle with Crohn’s disease. As parents it was heartbreaking to watch our child suffer knowing there was little we could do to help him get through. Instead, we had to put our faith in the medical system and hope his team of doctors could help him heal and work towards remission. Night after night my husband and I would say ‘I wish it was me instead of him.’ We began ‘Team Jaden’ and focussed our efforts on fundraising to help find a cure. Our friends and family rallied with us and as Jaden’s health started to improve, so did our fundraising efforts. Since 2017 Team Jaden has helped raise over $10 000 for Crohn’s research (thank you friends and family!).
Luckily, with outstanding care from BC Children’s Hospital, Jaden is doing well. Every seven weeks he receives a day long infusion of a biologic drug that lowers inflammation in his body and allows him to thrive. Besides this minor inconvenience, Jaden has few side effects and lives a happy, healthy, life. As a family, we thought we had worked through our hardest days. When we had wished it was us instead of him, we had no idea that wish would come true.
On December 20, 2020 my husband Shawn went to emergency with stomach pain. It was 7:30 AM on a Sunday morning and our kids were asleep. He figured if he could get in early, he would be prescribed the right type of pain killer and get home in time for a mid-morning hike with our dogs. He suspected the pain was merely the result of a pulled muscle from working out. For those of you that don’t know Shawn, there is nothing he loves more than being active. After recovering from two spinal surgeries Shawn was back in great health and working out daily with long term goals of completing an Iron Man and the 5 Peaks running series. He was excited to begin a new assignment within the RCMP working with youth as a school liaison officer. Life was on track minus a sudden onset of stomach pain. Like we had with Jaden, we expected the doctor to hand Shawn a prescription so we could get on with our busy lives.
A few hours later the plan of hiking with the dogs faded away and Shawn was admitted to the hospital. By Christmas he had undergone a series of tests and procedures and received the same diagnosis as our son: Crohn’s Disease. Like Jaden, Shawn’s disease was labelled as ‘severe’.
We are now eight weeks into this journey and we do not have a happy ending yet. We are in the thick of it. Biopsies are inconclusive and there is too much inflammation and scar tissue for clear imaging. Surgery is likely but that is on hold until drugs take effect and swelling is reduced. There is a 30% chance his body will not respond to the drugs he is on, though it will take months before we know if there is progress. Shawn lives in chronic pain, is unable to sleep, unable to work, unable to exercise and unable to function for more than a few hours a day. The road to recovery is still long. It is heartbreaking to see someone you love suffer.
Despite this we have hope. We have watched our son fight this disease with strength and courage. We have witnessed the amazing transformation that can happen once the right drugs are found. We are grateful to live in Canada with an amazing medical system that covers incredibly expensive treatment. For now, we live with the pain, and we find ways to manage.
Self-care has moved from an indulgence to a necessity and we make effort to get outside, to walk, to rest and to practice gratitude. Our lives have slowed down (though with a pandemic we are not missing much). We turn to yoga, meditation, journaling and support of friends and family to move through the pain and manage mental wellness. (Other moments are less graceful. I cry, Shawn gets quiet and I order a surplus of things we don’t need from Amazon.)
As a dad, Shawn now looks up to Jaden as his hero – his role model who endured this pain ahead of him and navigated treatment with strength and grace. As a family we continue to learn about this disease, and we will continue to fundraise to find a cure. Team Jaden is now Team Blakeway as we have just registered for our 5th year of the Gutsy Walk. We will dream of the day when a cure is found for this lifelong disease. https://crohnsandcolitiscanada.akaraisin.com/ui/GutsyWalk2021/p/e4f76406ae034c698c76980304492491 Donations and/or participation are gratefully appreciated.
For now, we acknowledge that it’s ok to not be ok. These days are long, but they are not forever. In the words of the great Maya Angelou, every storm runs out of rain.
