An Involuntary Adventure into a Type of Retirement

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

Connected in Grief

Why is it that tragic news of a dear loved one has so many layers as we take it all in?

First there is the shocking disbelief that something so horrific could even happen.  But it did and it does.  The impact is not yet realized on this one for sure.

My beloved and I prayed several times as the news unfolded across the evening:  the details coming forth slowly, leaving more questions than answers tonight.

Then a little later when simply lying with my beloved for refreshment triggered my own symptoms of ongoing illness, the tears started to flow alas but not for me this time.

The words of bad news, of new loss and the crisis of loved ones unfolding hath opened  up old wounds from my own times like these in the past, when I had to travel quickly into a very painful unknown.

I cried some more.  Oh how I miss my little brother so!  I talked to him in the hospital when he was yet drunk and in the DTs of alcohol withdrawal.  Little did I know that he would become unconscious and pass away within 2 days thereafter of alcohol toxicity, multiple organ system failure.

Quickly my late Mother made travel arrangements for my brother and I, with me still shell-shocked from my former husband’s departure and death of my grandmother within 24 hours of each other, just 5 months earlier.  Travelling for another funeral out of state and into a lifestyle much different from my own was a culture shock on one level, a new loss to grieve, and a return to the drama of my childhood as well.  Oh how I wish I could have re-written it all!

My brother’s Memorial Service was bizarre:  held in the bar of a bowling alley with his people, his friends albeit fitting yet inappropriate just the same.  I wrote about it three years ago when I thought about the star that now holds the ashes of his once tender heart.  Many details are painful to recall here and to do so would be disrespectful to the memory of my now deceased Mother who was grieving in her own unusual manner at the loss of her son.  It was a painful experience for all of us to endure back then.  Some more sorrow got released tonight as it all came back to me again.

Robert, Rob, Lech, Colorado, Palmer Lake, deceased, brother
My little brother Rob. Love you and miss you Robbie!

My Intended Beloved had memories of his own to share this evening from the death of his sister, his late brother-in-law, and a distant relative too.  We don’t know how the current tragedy will fare as the night draws on into daylight for one weary family holding on, their loved one slipping further and further away from them.  Please join me in praying for each precious one.  The Lord knows who they are and what they need.  I don’t know either but one thing that I do know is this:  we do suddenly become connected to our brothers and sisters in Christ, even all in humanity when we tap into the suffering that goes on in life.  I do pray the Lord’s supernatural intervention in the situation at hand.  Only He can go beyond the layers which we now feel, we now see.

And in this we can all rest, Gentle Reader.  For the shortest verse of our Bible reminds us of His humanity too, His sharing and caring in our times of grief.  For Jesus wept too.  JJ

Jesus wept, John, 11:35, grief, Christian, suffering, crying out to the Lord, shortest verse

No Place to Go

Steve pic of A Lori stuff 7.27.18

This morning as I watched my gracious husband take pictures of the items a family member had claimed were stolen, I realized I had no other place to go.

Who would understand the betrayal after having suffered a severe health setback trying to care?

Who would understand that every level of commitment virtually every day this entire year would end with them throwing my heart against a brick wall?

Who would know the many levels of loss that continue as I seek treatment to get my body back to baseline again?

Who would understand that grieving this failure, this dead end would rekindle the sorrow from heartaches in the not-so-distant past as well?

How does that come to any kind of closure when your heart is crying, your thoughts are heavy, your body is aching, your world is smaller, and there are piles of things to do around you?

There is only one place to go:  to the One Who grieves for my pain, Who grieved tears of living blood for the sorrows of us all:  more than I will ever know.

My Savior, Jesus Christ, faced ridicule, betrayal, torture, and unjust punishment that cost Him His life so that I may be free one day of lesser losses that come with this life.

Just gotta lie at the foot of His cross for as long as it takes until the burdens are lighter, so that I may go on even better somehow.

My joy is tiny today.  My Jesus is bigger than life itself.

Jesus, take the wheel.

JJ

Some Passion for You

Passion stems from the Latin work pati, meaning “to suffer.” The stem pass comes from the word passive meaning “capable of suffering.” Pass was coined in the early 16th century to denote “the suffering of Christ on the cross.” English also acquired the word through the Old French word passion meaning “strength of feeling.” This has been transferred in our modern times to denote sexual attraction and anger.  (From this website.)

I was watching an interview of actor Jim Caviezel who portrayed Jesus Christ in Mel Gibson’s movie Passion of the Christ.  Jim has a powerful testimony of the physical trauma he endured during the making of that film.  The movie came out in 2004 when I was in the beginning stages of divorce after my former spouse left me.  I was devastated.  Also within that year my grandmother and youngest brother had died, I lost my home, I had to change churches to begin the healing process (distancing me from my support system), my mother was diagnosed with lung cancer and underwent a serious surgery out of State, I lost my job, and had to store my things in 5 places while I began the first of what would become 5 moves of residence.  One of these was after a condo fire which displaced me into a temporary apartment with only the clothes on my back for a time.  Talk about suffering!  Still this was nothing compared to what my Lord had suffered on the cross for my salvation.  But I tell you, I simply could not watch that movie during that time in my life.  I was too traumatized.  It would just be too painful on too many levels.

This week marks the 5-year anniversary of when I first started having wretched seizure attack episodes on a daily basis.  I had gotten sick with a biotoxin illness for 6 months before then when an “alternative” treatment modality triggered the onset of seizures.  (These continued today although gratefully the pattern is changing some again and this could become a good thing.)  The suffering with these often violent convulsions has been tremendous.  Never would I have imagined such a terrible, terrible illness.  (See them here.)  Even the tumultuous years around 2004 do not compare to what I have endured more recently.  Even those who agonized with me during the various aspects of the stress 13 years ago do not compare to what my beloved husband Steve has endured with me during this illness.  Suffering of this magnitude brings hell to earth for a part of every day.

There are other periods of time that I would characterize as suffering:  the incidents of abuse in my childhood.  Some were sexual, others physical beatings, and several involved satanic rituals.  All were profoundly damaging and required years of help, love, and the healing grace of our Lord, Jesus Christ to overcome.  The abuse kept my mind, body, and emotions trapped in various ways for decades affecting my ability to function as an adult woman.  Somehow I did find my way out when I found Jesus Christ as Lord and Savior; eventually the pain, the “suffering” largely went away.  Self-destructive habits and negative thought processes faded.  Forgiveness and healing took its place.  I became more whole, interestingly surging even now to a new level of peace as the seizure attacks lessen.  Suffering from abuse no longer troubles my spirit.

The Lord doesn’t waste anything in His plan for our lives.  After 2006, I got to experience a magnificent restoration from the “years the locusts had eaten.”  (Joel 2:25) For example, the insurance settlement from the condo fire (where I was renting an apartment) ended up paying for beautiful décor in a condo of my own where I could rebuild my life as a single woman.  Flash forward to more recently and I wrote here of the blessings that have come despite enduring a serious illness including meeting all of you through this blog!  And all that childhood sorrow gave me a compassion for others that has served me well caring for others for decades as an occupational therapist.  Despite my suffering, I am grateful that my Heavenly Father and Husband has allowed me to see His hand, His plan that has masterfully created goodness from the suffering He ultimately allowed for His glory.  I now believe it was all for my good too.

unyru paper, collage, art, wall, Romans 8:38, Jermiah 29:11 Christian, artist
Collage art wall mural in the hallway of my condo with a self portrait too.

And what about the more contemporary definition the word “passion?”  The connotation of emotional, physical, sexual energy?  Let’s just say there is much in my life now to be passionate about in having a wonderful husband (my “intended beloved”) who loves the Lord and me too.  Then there’s my love of growing things in the garden (from my mom) that has kept me moving forward on my worst of days in addition to my best of days.  I love digging in the dirt!  Perhaps most importantly is my passion to champion the calling of the Holy Spirit when He compels me to:  serve someone, encourage someone, love someone, share the hope found in Jesus Christ with someone.  When I hear the call of the Holy Spirit moving me in a particular direction, I move forward with a razor-sharp focus that consumes whatever energy and resources are available to me at that moment.  Whether it is in the middle of the night making my husband’s lunch for work the next day or baking cookies (despite a terrific headache) for that service dude who is having a really, really bad day.  Me and my Lord getter done!

This I have come to know:  that if the Lord calls, He empowers us to respond.  That is what passion is all about, good or bad.  And guess what?  He made the suffering, all of it, good for us on Easter morning.  How about if we keep this in mind the next time he calls?

JJ

What becomes normal

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

After TriAdventure Race
Steve and I celebrate his team win at the 2010 Maumee Tri Adventure Race