One thing that is not working for me is “not working,” I was addicted to work. Work was my identity and my reason to get up in the morning.
One of the biggest losses for me and others facing early onset Parkinson’s Disease is the loss of employment that frequently accompanies this devastating disease. In my case, it was the loss of my position as coordinator of hospital volunteers (see PD Went to Work in my blog) nearly a year ago.
This was not supposed to happen.
I traveled to California for brain surgery and allowed a neurosurgeon to drill two dime-size holes in my head while awake so that I could keep working.
I reduced my work schedule to 36 hours per week so that I could keep my job. Although my work hours and pay were decreased, my job responsibilities were not.
I saw my neurologist frequently, took 13 pills a day, my medication was adjusted, my neurostimulator was programmed, acupuncture needles were stuck into my body and it was therapeutically massaged – all so that I could keep working. I even played the accordion to keep my mind sharp and spirits up.
I consulted with my young-onset PD friends, all who have already left their employment because of PD. Joel, a writer and journalism teacher, urged me to follow my bliss and believed that when one door closed, a window often opened. Pam, an urban planner, insisted that I would know the right time to leave, when the quality of my work began to suffer or when I physically or mentally couldn’t do the work. Valerie, an attorney, found it excruciating to make the decision to leave her position, having worked all her life outside the home, and stressed the need to develop a different but meaningful life.
But I was not a quitter. I prided myself on never missing a day of work because of illness or bad weather. The worse my health or the weather, the more motivated I became.
I finally found my niche as coordinator of hospital volunteers. I loved this hospital and its small town atmosphere with “good mornings” and ready smiles from staff, volunteers and patients. I was thrilled by the sounds of the flight for life helicopters overhead with patients arriving from neighboring states, the excitement of being a part of something important, an environment that preserved health and saved lives. I enjoyed the contact with the patients, many who were usually sicker than me, yet grateful to be alive.
The volunteers touched me with their quick wit and their sense of adventure, traveling every continent of the globe. They were the widows and widowers, the survivors of concentration camps and revolutions, the marines, the Red Hat Ladies and the preppy premed college kids, who were high achievers and willing to share their troubles as well as listen to my big sisterly advice. And I got paid to talk to them. What a privilege and an honor!
I pushed to implement the dog therapy program in the hospital. I was fascinated how therapy dogs worked with patients, helping some learn to walk after strokes and assisting others in recovering lost cognitive abilities.
I loved it all—the work, the people, the dogs.
I am still struggling with how to make “not working” work. Although I have found some satisfying activities to fill my day, it’s not the same. I am grateful that is I’m still an active participant in life and that retirement from work didn’t translate into retirement from life.
Comments
You can follow this conversation by subscribing to the comment feed for this post.