GREY MATTER LIFE

I volunteer my time as a Patient and Family Advisor for Emory Healthcare as a part of their Patient and Family Centered Care initiative. Working in partnership with administrators, physicians and nurses, I participate in the planning, delivery, and evaluation of healthcare at Emory.  Simply put, it’s about including patients and their families as integral members of their own healthcare team.   

So, this is how I found myself unexpectedly standing behind a podium in the Glen Auditorium at Emory University Hospital Midtown, staring down a room full of nurses unsure that I had anything meaningful to say. I had no idea I was going be asked to speak, so I had nothing prepared and was totally mentally and emotionally unprepared.     

The foundation of what I had been asked to share was a broad theme about communication.  With little time to prepare, feeling like the machine between my ears was processing nothing and more than slightly panic-stricken, I wished I could just hide behind a keyboard. 

I proceeded to share with unexpected difficulty, unwelcome tears and honesty, the first thing that came to mind. I shared what gave me unexpected strength and encouragement on my day of surgery and how it had not come from my husband, family or friends. Here it is:

When Paul and I arrived at the hospital at the crack of dawn the morning of my surgery, we headed to Radiology for my pre-surgical Stealth MRI.  Since I was going to be sedated for it, I had to sign all the waivers and do all the pre-op paperwork while I was still coherent and sober. Surely shocking, but yes, my anxiety was pretty high and I felt like I was waiting to be executed. 

I never feared death or that things would go wrong. I guess the pragmatist in me realized that if I died, it would happen while I was sleeping and if something went wrong, well, that was just plain out of my control.  I simply planned on it all going smoothly, end of story.  Yet, even with my smooth plan, that didn’t mean it was easy to comprehend. 

That morning I struggled processing that I really did have a brain tumor and that no, it was not a bad dream. I was actually going to sign on the dotted line to have a craniotomy. The “show” was no longer two months, weeks or a day away. It was hours away. I was going to pull my big girl panties on and consent to have a portion on my head shaved, my head cut open, brain mapped, a piece of my brain removed, my skull put back together and with all that said, it was just going to be another day at the office for my surgeon.  

It was fucking nuts… it still is.  I had to keep telling myself to breath and not go to that place where you start the uncontrollable psychotic crying fit.  When exactly was I going to get sedated? 

Stephanie, my surgeons PA, arrived with all the paperwork and consent forms in Radiology. She found Paul and I awkwardly sitting in a corner in the empty waiting room trying to make conversation and act cool.  What she said and our interaction, speaks volumes about my experience and what transitioned Day 1 of this journey from a borderline mental breakdown to acceptance, composure and strength. 

Sitting on the arm of a chair next to me, my chart cradled in her arms, Stephanie took a breath and break from all the consent forms and said simply that she had no idea how we feel.  She acknowledged that she couldn’t imagine what our night had been like. She couldn’t imagine how difficult it must have been to wake up that morning knowing what was going to happen, how scared I was and that she respected the courage it takes to go through this. I never expected anyone to acknowledge the personal and emotional toll the experience had already had and was having on us. Her honest outreach was immensely calming and her words validated that I was not crazy. 

With my John Hancock all over a pile of papers, Day 1 began. IV’s were started, 1 inch square spots were shaved off the top and base of my head for foam surface markers that accompanied the ones on my forehead for my Stealth MRI,  and between the tears, it was all more palatable because of Stephanie. Paul even got a smile out of me for a photo. 

Tagged and Ready for Pre-Surgery Stealth MRI: Day 1

When it was finally THAT time, Costas appeared at the end of my bed. He smiled and asked if I was ready to get the show on the road. 

I smiled. 

I laughed. 

I said it was about time. Hell yeah, let’s get this show on the road.   

I didn’t need any formalities and really didn’t want a detailed medical summary about what was about to go down. I needed and got a smile and a laugh. I’m not lucky. In fact I have what I call shit luck, but I can pick a good team.  

I said ‘see ya later’ to Paul, told him to be good and made the journey into the operating room.

Stephanie and Costas helped me find composure when I least expected it and for this patient, what they said and who they are was exactly what I needed and I can’t imagine the day having been any different.

I knew in that moment that regardless of what the pathology ‘the piece of shit growing in my head’ turned out to be, I knew I was in good hands.  I was right. 

Day 3 - Heading Home