Standing In The Ashes Of Who I Used To Be

Stepping under those florescent lights had burned away this young woman I used to know. That’s the honest truth. I had now entered into a world that replaced my identity with obscure numbers and letters on a spreadsheet. PNH is a life-threatening blood disorder caused by a mutation in the PIG-A gene. As a result, the red blood cells in a body destroy themselves and create overall bone marrow failure.

 Here are some numbers about me that you may not know. When I was diagnosed with PNH my Hemoglobin was at 6.7. Hemoglobin is essentially your red blood cell count where iron is stored. The normal range for an adult female is anywhere between 12-16. If your body cannot produce enough Hemoglobin, your cells do not get sufficient oxygen. Platelets are an important function in the body because they help form clots to prevent spontaneous bleeding. A normal platelet count ranges between 150,000- 450,000. I had a platelet count of 10,000.

PNH affects 1 person per 1,000,000 (million) people in the general population. One third of those with PNH will develop Aplastic Anemia (AA) at some point in their lifespan. I have both.

My body was attacking itself, and I could do nothing.

My parents could do nothing but sit in that tiny room with me. Then the questions started shooting out in a panic. To this day, I can still hear my dad’s voice raising at the doctor and shouting “Is it something in her diet?!?!” I swear I thought the whole clinic could hear. He would continue to ask this at several appointments in the hopes that this could be solved with a minor diet tweak.

I was later moved into another little room for my first of several bone marrow biopsies. I lay on my stomach quietly as the doctor explains the procedure. The extraction of bone marrow is as about as pleasant as it sounds. I focus on my breathing while what feels like a wine bottle opener is being pierced through my back. Anesthetic NOT included.

In those moments, under those lights, I had lost myself.

My body was gearing up to fight and survive, while my mind and sense of self shut off. I was a medical record number (MRN) now, I was a collection of cells under a microscope, I was defective, and I was a lab experiment. I was not Sarah. People were talking around me now, not to me directly. I felt nothing. I was numb. I fought the acceptance of my diagnosis for so long. I wanted so badly to hang on to my former self, but I realized she wasn’t there anymore. I was chasing the girl I used to be, and denying a part of me that would change forever.

I am one in a million. After struggling to accept for so long, I now embrace.