Learning to Live Again After Being Stuck in Survival Mode With Chronic Illness

I resonate so much with the concept of living over surviving that I have it tattooed on my body. It’s a hard concept for people to grasp when they haven’t had their only goal for the day to be to survive it.

I spent the better part of 10 years basically living in and out the hospital. One admission to the next was my life, not exactly the ideal teen and young adult years, but it was my life. I came to terms with it pretty quickly if I do say so myself. I realized that I was deteriorating faster than the professionals could figure any of it out, and the more interventions we tried the riskier life became, quite literally. After my first septic shock it became evident that I could die and there was nothing I could do to stop it. I could do everything right and still end up in that ICU bed wondering if I will ever leave that room again. So I made my peace with it, I wrote a million letters to the people I cared about to be opened on major events in their lives that I would miss: graduations, weddings, birth of children, you name it I had written a letter for it.

Most 18 year olds are not contending with the reality of their own mortality, but that’s exactly what I was doing. Not only contending with it but planning for it just like my peers were planning for college. Surviving was the only thing I had to do, nobody expected or needed anything from me and the fact that I was still breathing was good enough. Then one day a freak accident resulted in me getting better. Did I have a seizure in just the right place to reset my nervous system? Get concussed in just the perfect place? Nobody knows for sure, I tend to try and not question it. Many people call it a miracle, which I absolutely hate. I don’t believe in miracles or the religious connotations that come along with believing in them.

All of that aside, that day would change the trajectory of my entire life. Slowly at first, but also quite obviously to anyone who knew me well. I was now faced with this life I never planned to have, a life I came to terms with never seeing and experiencing. A life that was staring me in the face waiting for me to make a move. For a while I stayed in survival mode, always thinking the other shoe would drop and it would all go back to the way it was. I still feel like that sometimes but that’s trauma for you, it doesn’t just go away overnight. I slowly began to allow myself to hope ever so slightly for the future. I pushed back on taking the GED exam because I missed so much of high school and what if it all falls apart again? What’s the point? My mother simply replied “take the damn test already” and I did, and I passed the first try.

I also started college, got a job, loved and lost, became an aunt, traveled to Hawaii, which was something I never thought I would get to do. I tend to have to be very conscious of my mentality of I need to do this now or buy this now or go here now or I may never get the chance, because it creeps up on me still quite often. Every day I wake up and decide to not just survive but actually live, and yes it is a conscious choice.

The trauma will forever be a part of me, there will always be a part of me who is afraid of losing everything again, all that I’ve built and done, but I would rather risk losing it all than never having experienced it at all. When it’s hard and feels impossible, when it feels like you will forever be haunted by your past and you choose to continue to actively participate in life, you choose to live over survive: thats when life begins again.