Beyond The 9 to 5

For those of you who don’t already know, before I was diagnosed with PNH and AA I had gone to school to be a mental health therapist. I thought that this was the right career path for me at the time. All I really knew was that I wanted to help people. As it turns out at my last job as a therapist I was fired. Not for falling behind on some case notes, but for being on medical leave for too long. I know… can we say ILLEGAL?? I had taken the LOA because my body needed time to adjust to new infusion medication (Ultomiris). I got the big axe just before the pandemic had hit, and on top of my health this was another blow I was not prepared to take. Feeling completely adrift with nothing but time and empty space to fill.

My God… was earning my Master’s degree a complete waste of my time and money? The answer is no. It is my personal belief that education in any form is never wasted. Many of us in the United States culture associate our identities with our careers. It becomes imbedded within us to succeed at all costs within the work environment.

I had been given the task of finding my identity without a career, because for many years I was barely able to get up out of bed. It was back to basics for this girl. Saying goodbye to my first career choice was painful at the time, but now I see it as a blessing. It wasn’t meant for me so I gently let it go, like releasing a single balloon into the sky.

A couple of weeks back, I was prepping for an interview. Sitting in my living room glancing through my notes and my two-page resume. There it was… a list of my accomplishments in black and white, that filled the white space so effortlessly. Those things that I had once held in such high regard had lost its sense of pride and importance. I thought to myself looking at the pages ‘Does it really matter that I have earned a Master’s degree?’ All of the bullet points seemed smaller somehow than before. My list of accomplishments are much different now.

My achievements go much further than working a 10-hour work day, or getting that year end bonus. While others may be working late, my body works 24 hours a day to keep those blood counts from plummeting. Some may be focused on getting that next big promotion, while I worry if my body can handle the rigors of the standard 8 hour work day. My point to this is when did what we do for a living become who we are? I know that when I die, I don’t want my plaque to read “She was really devoted to her company, and always completed projects ahead of schedule.”

We are so much more than what we do. Life is so much more than a list that we compile on our resumes. So, am I working? Yes. But, not in the 9-5 way that you might think.  Do I have things to be proud of? Yes. But, these things won’t be found on my resume. The Work I continue to do learning to cope with my diagnosis and the progress forward each day is what I am most proud of. And whether you can see it or not, I can feel it with every fiber of who I am.

“Ironic that in order to do my life’s work, I had to quit my day job.” -Michael J. Fox.

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.