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.
Thank you for sharing… I went through most of my life not knowing that I had PNH and wondering why it was so difficult for me to raise three sons and also work part time.
My fatigue was not like any other mothers fatigue… Mine was deep and very confusing. I was constantly worrying what was wrong with me.
Doctors diagnosed anything from kidney cancer to bladder cancer yet the mystery remained.
They were days I thought I was going to die… I knew something was terribly wrong but started to imagine it was in my head.
It was not until I became a grandmother and moved to a new city that I finally got diagnosed. The diagnosis was affirmation that I was not crazy but it was also evident that I had something very serious that I was dealing with and had been struggling with it for 25 years..
And yes people always ask me what should I did before I retired. My answer should be that I raised three sons to become wonderful men while dealing with a life-threatening illness.
Instead my answer seems to always be” I was a children’s librarian”
I am now a grandmother… One that is still alive to witness the wonders of little ones again.
Hi Diane, Thank you so much for sharing a bit about yourself and your journey with PNH. I am glad that you were finally able to get the answers you needed from the docs! Yes, for me there was always a part of me that felt ashamed for not “working” in the same sense that others do. I’m happy to hear that it sounds like you are doing better and able to enjoy your grandchildren! Cheers to being ALIVE my fellow warrior! Take good care of you! Thanks again for the comment!
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