Cara Brown, BMR (OT), MSc* recently studied the role of occupational therapy practitioners in enhancing the quality of life for people in work-cessation transitions. She was particularly interested in folks like me who made this transition when not of traditional retirement age. Although I am still not convinced that my working days are over, I felt compelled to introduce my own involuntary adventure into a “type” of retirement. My letter follows:
Thank you for your recent article in AJOT on Expanding the Occupational Therapy Role to Support Transitions from Work to Retirement for People with Progressive Health Conditions.** I found it useful and respectful of persons facing both situations in life. There may be another category to consider: those with sudden loss of work roles who enter into “retirement.”
I am an Occupational Therapist who worked over 30 years before entering into this latter category within one night: October 11, 2011! I continued to work part time for a short time then decreased my hours to a few home health visits per week. When it became clear that the onset of a serious illness made it a struggle to focus on the needs of my patients and direct the care of our Occupational Therapy Assistants, I had to stop working altogether. My last day of paid employment was February 2, 2012. I spent the next 2 years being my own OT by researching my condition and seeking various medical and alternative health interventions. Energy conservation and work simplification were my way of life. Returning to work was always my intention.
It is now 7 years since the onset of a biotoxin illness and numerous other medical conditions that continue to restrict my ability to function. It took me those first 2 years to realize that the daily convulsive episodes and other illness factors were not going away any time soon; just the orthopedic injuries and deconditioning made it difficult to care for my activities of daily living. Several times per week I needed to be carried to the bathroom, assisted with bathing after the worst of those episodes. I developed, by the grace of God, dozens of new coping strategies (e.g. making my breakfast the night before and putting it bedside in a lunch bag in case I couldn’t get out of bed in the morning). Still, I missed working. I started making jewelry in the middle of the night and selling them online to keep my brain stimulated and some adaptive role involvement going since I was up all night long anyways. It was the only way to avoid more seizure attacks. My life was upside down in many ways for sure.
It took me weeks not days to eventually sell my jewelry business and start to develop a professional website akin to my occupational therapy practice in home health. I designed a bathroom safety product and began to develop the concept while networking within every aspect of this new venture hoping it would be a transitional activity back into practice. In doing so, I could monitor my activity level, continue to challenge my brain, learn new computer and marketing skills, and get excited that what I had learned when off of work was not “wasted.” After about a year in this new direction, I had to stop. Things got even worse before they got better. The convulsive episodes progressed, aggressive treatment took its toll, and just caring for my basic needs was all I could do. My spirit was crushed. That was 2016. By the end of the year I was hospitalized with shingles. The stress was unbelievable and my body was breaking down further. I changed the focus of Two Step Solutions several times; my personal blog (www.justjuliewrites.com) tells the medical and emotional story. Gee, I did learn how to blog and design simple websites (and helped 2 others with theirs)!
But my personal financial resources in addition to my physical and emotional resources (of which you mention in your article) were gone. The isolation was staggering even with a plethora of online support groups and a Prayer Group I started with two other largely home-bound gals. Eventually some specialized care funded, in part by a Go Fund Me campaign and an unexpected tax refund, improved my condition enough to start some volunteer work this past year. I hoped that the volunteer work could progress to part time employment whether within or outside the field of occupational therapy but later in the Fall my health started to slide again and new medical conditions emerged that required my energies, my attention such as it remained! I needed to keep things low key despite any “goals” I continued to set every morning, 7 years later.
The underlying message to sharing my story with you is to express the extreme difficulty I had as an Occupational Therapist to go through all of this who not only loved her profession but loved OCCUPATION. Every day when I got out of bed since college, I set goals. This continued through my time of disability. The items on the list got fewer as time went on and the complications, unpredictability of complex illness continued. I never stopped trying to find solutions for either the medical conditions or functional limitations posed by them. If I needed to wear a charcoal mask in public to be able to shop at the grocery store then so be it. If I needed to sit in my vehicle to rest or in the cafe of a store pretending everything was o.k., I did so. I never felt ashamed to be online instead of in-person meeting people; genuine friendships came from meeting fellow bloggers with whom I have now met or “Skyped.”
Dear Cara, I hope that you will keep seeking to understand the role of occupation in the lives of person with not only progressive but sudden, serious medical conditions or traumatic accidents. Perhaps the cancer literature has studies to further your investigation as many cancer survivors do return to productive lives. And note as you go along that there are tens of thousands of folks like me out there just hoping for the opportunity to do the same; we just don’t know if that will be our outcome . . . yet! In the meantime, I am not giving up. If I did not have my faith in the Lord, Jesus Christ, I would have done so by now. Not even my drive for meaningful occupation can come close to keeping me going as knowing my future is secure in eternity because of my faith (regardless of the simplicity, setbacks, and sometimes messiness of my daily life). I submit to you that those facing progressive and sudden loss of primary occupations will require assurance from the Creator God to ultimately succeed in this involuntary type of retirement.
Godspeed lady in life and in your work,
Julie (MS, OTR/L)
Advanced Master Gardener
Editor and Asst Editor of 2 Publications*Instructor and PhD Candidate, Department of Occupational Therapy, College of Rehabilitation Sciences, University of Manitoba, Winnipeg, Manitoba, Canada
**American Journal of Occupational Therapy, November/December 2018, Vol 72/No 6, p 347010