Wednesday, October 4, 2017

Unexpected Prognosis

I am no stranger to death. My biological father passed away prior to my birth. The man I thought was my dad until I was old enough to understand the situation died just before I turned 5-years old. And after losing grandparents, uncles and other loved ones, the hurt is oh so familiar.

The hallow emptiness of loss does not get easier. The feeling always resonates with the emotions of the little girl on her aunt's swing set finding out that daddy was gone, and as she frantically pumped her legs, she could never swing high enough to bring him back. The only difference is that now, with maturity, I have learned how to appropriately grieve.

On Thursday I was at the hospital visiting another patient with Mast Cell Activation Syndrome. She is only ten years old, but has bravely endured the each obstacle presented by her illness. During the visit I received a text informing me that my dear friend, Taylor, had went to Heaven that morning.

My first instinct was to have a crying, blubbering meltdown. As said in my Instagram post:
Most would not have exemplified the faith, strength, and courage that Taylor did throughout her many battles. Taylor and I were in the “same place at the same time” when it came to life. We are exactly the same age and both had to defer our spot at our dream colleges after becoming severely afflicted with MCAS. Sharing in that struggle was the beginning of our friendship.  She never failed to use her circumstances for good. 
Reminiscing transports me back to September 2015. In that month, I was hardly able to sit up due to severe reactions. I had not yet begun the CDI treatment. Taylor texted me almost 24/7 then, ensuring I was not lonely living between doses of medication. Later, I started presenting with scary new symptoms. An EpiPen was in my near future, but I was petrified to use it for the first time! One evening the knot in my throat grew increasingly bothersome. I was on the couch texting T. All night and into the next morning she eased my nerves by walking me through the step-by-step process of using the Epi. She reassured me that it helps so much and recounted her experiences so that I would be less scared.   
Even in the times we were too ill to talk, Taylor was always there. Our connections are strong enough not to require words. I will miss our group skype chats and our laughs and inside jokes.  
While my sad eyes exuded tears, I quickly had to regain composure. I was not alone. I was in the presence of a very young MCAS patient that I did not wish to scare. How was I supposed to explain what had occurred? We are told that our form of the disease is not deadly. Yet, the condition we all share had taken a life. In fact, it has taken many lives this month.

I was tempted to offer reassurance, but I stopped myself. I thought of the numerous rapid response calls, the surgeries gone wrong, sepsis, almost starving. It would be empty justification because it could easily be any of us.

Losing a friend is inevitably difficult. Losing a friend with a shared diagnosis is a completely different experience. It makes it increasingly more real. Why them? Why not me?

The God-given prognosis is not always that of medical doctors. Taylor's legacy is not over. We vow to keep it going. As I prepare for my feeding tube replacement procedure this morning, I know there is a new angel shielding me in this fight.







The Lord gave, and the Lord has taken away; Blessed be the name of the Lord. - Job 1:21