Often, after experiencing significant life-shifting moments, we treat them as singular moments in time. A product of circumstances, and that in one lifetime, it is impossible for us to feel the heaviness of such loss, fear, and destruction. Well…that’s probably how healthy people think because they spend most of their time being able to walk around like a functioning human being. On the other hand, patients live their lives wearing Luna Lovegood glasses, seeing all the invisible moments of terror lurking around the corner. By the way, if you do not get the Luna Lovegood reference, then that means you grew up a muggle, and…well, I am so sorry. Now, back to the topic: life when it is lifing. For patients, life doing its weird lifecycle thing is not anything new. When you live with so much unpredictability, fear, and anxiety just trying to have a normal day of walking your kid to school without breaking out in a sweat, flinching from pain, or searching for the nearest bathroom, you get used to life-taking your world and sitting it on its ear. However, the change is challenging and traumatic. Sometimes, it feels like an inside joke you are not privy to and entirely at your expense. Life’s ability to dramatically change everything in your life at the drop of a hat at the most inconvenient time feels cruel.
Well, friends, life saw me enter my 39th year with such optimism, hope, and resilience; said, “Hey girl, heeeeey!” and decided to take control of my ship away from me. What should have been the fresh start I deserved after years of fighting for the life, independence, and happiness IBD stole from me ended up being what can only be described as a mess. Like a mound of matted hairy poo smeared on a white vintage Halston gown type of mess. It was a clusterf**k of a year with moments of joy and fun overshadowed by another dark cloud Charlie Brown moment. People I loved are no longer living. People I loved removed themselves from my orbit. People I loved disappeared and forfeited our shared responsibilities without explanation.
My body, I loved, developed three more conditions, one of which tried to take me out. The country I loved betrayed me by stripping me of my health insurance while trying to figure out what was wrong with me. The job I loved was not entirely fulfilled because of my health. The opportunity to complete my college education was almost taken away because of illness. Oh, and I lost two teeth…because, you know, fragile bones and stuff. I loved those teeth, too. So yea, oh my damn, but it’s been a wild wave that I rode all the way to year 40. Oh yea…I turned 40 in July. Chile… yeah…exactly. It has been WILD!
But then, also, it’s been surreal in the most beautiful ways. The girl who wasn’t supposed to make it out of the hospital at 28 turned 40. The girl whose body wouldn’t allow her to get up to make it to class, work, or the bathroom started 2023 with a 3.7 GPA, an internship on Capitol Hill in the House of Representatives, acceptance into Queen Mary University of London, Jax met Joe Biden 9 years after writing him the first of many correspondences, and much needed healing between me and my dad. Taking the sour with the sweet, I am proud of myself for accomplishing long-standing goals. Goals that seemed unachievable because of how sick and overwhelmed I’ve been over the past 20 years. Most of all, Jax and I created core memories in Santa Barbara and D.C. Now we are embarking on the biggest adventure yet, moving to London for three months while I study at Queen Mary University of London.
When I was lying in my hospital bed before they offered me surgery, I overheard a nurse, what sounded like the med student who had just come in my room and someone else, discussing the unlikelihood of me walking out of that hospital. My brain went into overdrive as I started thinking about everything I could never do as a mother or a person with dreams. I thought about all the things Jax would experience without me and the impact of losing his mother. I didn’t have enough time to teach him how to use grief as fuel to accomplish great things. I was taught this when I lost my uncle as a teenager. My child was not a teenager, and he was two. And they wouldn’t even let him visit me, so there was no opportunity for me to apologize for not being there in the future. I felt so angry, claustrophobic, sad, and resentful. That was when I decided I needed to figure out how to fight to stay alive. Once I was given surgery as an option to fight to stay alive, my next step was to create a plan to make the most of this life and my motherhood journey. Going back to school was always in that plan. Being forced to leave school was one of the hardest things I’ve ever had to do. But waiting until I had the resources and tools to manage my condition properly is one of the smartest things I’ve ever done. Choosing the majors I’ve selected to receive the information and tools I need to be a better advocate and lobbyist for patients and healthcare equity is a part of the end goal of repaying my IBD and patient community for caring for me through the most harrowing moments with such limited resources.
But while making these plans, I always go back to that day. How close I came to missing out on it all, and how quickly I got to that place. I never want to be there again…but if this year taught me one thing, it’s taught me that I have no control over that. So, it’s essential to keep moving forward, setting and reaching goals. As I type this from a cafe in London, England, I realize that I’ve been moving forward without knowing it. I turned 40 years old in July, and the autopilot switched on. I have no choice but to make it, and I will define my motherhood journey.
Life will keep living, and I will keep moving. Life will keep living, and I will see dreaming. Life will keep living, and I will keep speaking. Life will keep living, and I will keep planning. Life will keep living, and I will keep accomplishing. I’m not going to lie; this year, I thought I would break. But then I realized something. I thought I would break in 2012, 2011, 2008, 2004, 2001, and 1997. But I didn’t break; I just pivoted. This past year of tragedy, heartbreak, and trauma was just a moment before the big pivot. Now, it’s time to brace. Put all the pressure on the front of my right foot, push off with the left, rotate, and receive the blessing.
