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
Truly none of us are normal deep down inside. We all have our crazy stuff, some more than others of course (myself included!). Better for most of that stuff to stay buried you say? Maybe so. Then again, why ever lose hope for becoming more whole, getting well?
For some of us, we don’t get to choose what will be normal for us and our loved ones. This is particularly true when someone gets sick or suffers a serious accident affecting them for say, 6 months or longer. After 6 months the healthcare profession changes your status from acute to chronic. By then the “normal” way of life has broken down and often looks a lot different than before the event. Expectations can change for the future; often people look at you or treat you differently as well affecting many, many relationships.
When living with a serious, ongoing illness or disability, new norms for life get set in motion and become habit. At some point we have to adapt to the changes in routines, levels of functioning, finances, symptoms, emotions, social dynamics, recreation, work, and more. If we don’t adapt then we would spend incredible amounts of energy and resources repeatedly trying to figure out how to cope with the changes. Instead, new daily activities get strung together as new habits, eventually become routines and may even become a new identity as they combine into roles such as “patient,” or “caregiver.” The phrase, “new normal” comes to mind when such profound changes affect both our lives and the persons around us every day.
We don’t necessarily like where we have landed when it is undesirable. Sometimes we can’t change things for awhile; other times the changes become permanent. We do have to make a choice about how we cope with all of it emotionally and in our thought processes including our self-talk. Will we be angry or find peace perhaps in the promises of our Lord, Jesus Christ? Will we give up or keep seeking for answers to aid our recovery? Who will we blame for our lot in life at any given moment? Acceptance may come or it may never arrive on our doorstep. However, some semblance of acceptance is key for moving forward.
The process for me in finding a new normal has occurred slowly over 5 years of battling a serious illness. If I were to summarize the 3 tests noted above of adaptation, emotional adjustment, and thought processes I would admit that I do not like most of the current outcomes. I don’t like the myriad of mold and chemical-avoidance strategies that everyone in our home must complete every day to minimize triggering a seizure attack episode for me. But we do them anyways. I used to cry just about every day and now it’s much less, mostly when discouraged by roadblocks in my care. But I keep searching anyways for answers. Lastly, I don’t and have never doubted that these daily wretched episodes have a biological (NOT psychological) cause that can be treated. So I use the tools I have to help myself get well. I don’t know when or how or why the episodes will stop. I do believe that one day they will stop completely.
And when the seizures stop I will embrace a new normal. Things won’t be the same as they were 5 years ago when I was working as an occupational therapist in home health care. My physical frame is weaker and injured from all of the physical trauma and I’m not sure how much I can get back. I will try, however! I can no longer attend our church, contributing to the loss of many relationships that were just getting started when I got sick. Travelling is restricted to camping in the Tin Can Ranch (on wheels!) for the foreseeable future. On the flipside, a few positive outcomes include having tremendously increased my computer skills, renewed my interest in entrepreneurship, and desire to support my husband’s growing paddling dealership. Being his helpmate has given me purpose on my sickest days when making his lunch when I am awake in the middle of the night was all I could do for my Stevers.
What becomes unpleasantly “normal” may not have to stay that way forever (and usually doesn’t). Those of us who learn to trust in the plan that the Lord has for our lives may find it easier to accept the changes when they come. We let the Holy Spirit guide us, comfort us along the way. We keep our eyes fixed on Christ and our hearts and minds soaking up His Word. We are then better able to let go of wanting things to be as they were and are better ready to grow into the possibilities of a more meaningful, maybe even more fun, tomorrow. I never thought I would be the Assistant Editor of a national canoe and kayaking magazine nor blog or help an artist friend complete her website. I just did what I could with what I had, where I was (as Theodore Roosevelt once said) and have landed in a better place in many ways. Better yet, I trusted in knowing:
Jeremiah 29:11 (NIV)
11 For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future.
You will be the first to know about those plans for sure, Gentle Reader. We have come a long way together, you and me. I thank you for sharing my journey. Feel free to share your thoughts about the “normal.” We are going to be alright no matter which side of the spectrum we are on, eh? JJ
It’s not that I don’t like a little excitement now and then. Mixing it up keeps me alert and gives me job security as the protector of the home. I know I’m making a difference when I do my rounds and find something I can bark at. When I find a little activity out of the ordinary by some neighbor and can let you know about it, I feel alive.
To bark, eat, crap, pee, sleep, and walk around in circles, well, this is my destiny. Don’t get me wrong; I do enjoy racing through the backyard at breakneck speeds retrieving that tennis ball you chuck into my elimination zone in the “back 40.” Having you scratch my hips is da bomb next to licking my own paws (etc.) and your rubbing behind my ears or belly. I just melt into your hands when you hold my beak and tell me that I am a “good dog.” It’s easy to turn on my big brown puppy dog eyes at times like these. It’s clear that if I do, the scratches will last longer and I do know how to work it too, you know. I am a smart dog.
But what’s up with the hotel room? Life was great with the lady alpha home because she spent so much time talking sweet nothings to me. I don’t know why she suddenly was home so much after March of last year but I liked it. Then that long red-haired gal came in and out of the kitchen and said a sweet “hey” to me inbetween naps. My workouts with the tall guy were amazing as I leaped into the air rescuing that wretched green fuzzy ball from space and wrestling around in every contortion I could never imagine. Plenty of naps filled my day, table scraps highlighted the menu, and I even got a little pudgy. Life was good.
Now the square footage of my domain includes navy blue carpeting that shows off my shedding hair nicely and some kind of a big doggie bed on which two of the alpha’s take their own nap all night long. I do like the two flights of stairs up to my new abode but not the soggy dog zone out back visited by who knows what kind of canine trash. Where’s my pond? Where’s my field? Where’s my life as I knew it?
I guess this is the life of this dog for now. At least that gal with the brown hair is more energetic and has started taking me out on walks in the parking lot of some concrete jungle behind this sea of giant dog houses. And the tall guy ran me around a sand pit last night that was soft on my joints and a perfect spot to dump my stuff. He is sooooo fun!
Better get back to work. There’s someone dragging a case of something up the sidewalk and I must see if they intend to come too close to my reinforced territory. Ah, to be needed. Ah, to be loved. Woof. Woof.
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