a sacred journey of FA.

Dr. Z and me

It's not often that you hear someone say they miss being in the hospital but I kinda do. Well, probably not being IN the hospital but rather the things I thought about the ten days I spent at Tampa General Hospital.

Like passing dark hospital rooms that were filled with people whose life had stopped. The sounds of machines cascading down the hallways. The strange noise became a familiar one and even welcomed as it notified the nursing staff of an upcoming seizure a patient was about to experience. Conversations with family members on the elevator about how their 28 year old son was hit on a bike.  They had been there three weeks already. And no mention of discharge. They were just happy he was alive.  Connecting with a mom of a 21 year old son who had a heart transplant just two weeks before. It was the first time she felt fresh air since the surgery. She asked me all about Barkley. She wants her son to live for a dog like him.  It grew into a sacred time of laughter and tears reflecting on the journey we are all on. Sacred. That's it. Being in the hospital was a sacred time for me. Somehow I feel as if I attempt to describe it, the words will seem empty. I fear that my stories will rob the experience of the joy I felt. I had joy in the suffering. A peace that made it worth it. So that's what I miss about being in hospital...I was on holy ground. And I don't want to forget that gift.

My research nurse, Tara

It was a gift. In so many ways. From the flexibility of a place of work that supports me going; a friend by my side that sacrificed the demands of her life for ten days; my service dog that was phenomenal and a nursing staff that was delightful; new friends that gave in so many ways; the beautiful view we took in everyday by the water; gorgeous weather that warmed our cold bones; the constant breeze that refreshed us in the healing sun; a doctor whom I love that makes me feel like her only patient; my nurse for the research that became someone I want to hang out with outside of the study; texts from people in my corner, reminding me of their prayers; a balloon bouquet from back home that brightened the room and a Unit Tech that brought a smile to my face. But I can't forget to mention the biggest present of all, the hope of finding a cure for FA! It's all so overwhelming. This gift of FA. It's sacred. And I don't want to miss any of the lessons I am learning on this journey. This sacred adventure called life.

So yea, I miss you 9A at TGH. You'll always be a part of me. And hopefully sooner than later, my time there will help lead us to that cure. A cure for FA!

some of 9A at TGH