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.

LOVE Conquers In Times Of Uncertainty

I was watching The Today Show yesterday and Hoda Kotb said something that resonated with me. ‘Share your gift to the world right now’. ‘Whatever that might be, just put your gift out there for the world to receive.’ I believe that one of my gifts that I can put into the world is my writing, and telling my story. With the COVID-19 crisis currently in the spotlight, so many things of day to day life for us all are rapidly changing. So many of the things that the world is now facing, a chronically ill person has been dealing with WELL before the Coronavirus.

Right now you may be:

  1. Uncertain, scared, or worried about the future
  2. Feeling you have no control over what is happening (when you are used to having control)
  3. Feeling the Emotional Effects of Social Distancing/Self-Quarantine (loneliness, depression, anxiety)
  4. Experiencing Lack of Employment or Reduced Hours which could lead to financial hardship
  5. Experiencing Travel Restrictions
  6. Experiencing Changes in your Relationships due to Social Distancing
  7. Having a heightened awareness of Cleanliness/Hygiene

Honestly, many of us who are living with a chronic illness are faced with these challenges on a regular basis. There were many days during and after my treatments that I was unable to go out of the house because I wasn’t feeling well. Almost every day, I think to myself things like: How am I supposed to make enough money to move out of my mother’s house? If I don’t feel well, how can I work full time? What about my student loan debt that I can’t pay off? Will I find a partner who will love all of me? (I will write about relationships and diagnosis in a later post!)  I have many days of uncertainty!

With all of this being said, in any state of crisis we have the ability to see and do some amazing acts of KINDNESS and LOVE. When I was going through my rounds of initial treatment, I remember those who surrounded me. I felt the love when I was scared and helpless. It has kept me alive. If I did not have that, I don’t think I would be here. I hope Everyone is able to stay safe & healthy. Share your LOVE & for the Love of God Share your Toilet Paper!!!