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

Stuck in the middle with you

My beloved is most gracious, loving, and kind to me

For these I am grateful.

My ventures out into community work were wrought with struggle then success

For some good results I am humbled.

My convulsive episodes have lessened then spiked on occasion, giving more clues than questions of late

For this I am, alas, perplexed.

My  labs raise questions about new things that need attention more than providing answers about a cause, per se, oh my

For the discouragement I will turn a cheek and trust my Lord, the Yahweh.

My distant family faces tragedy so we love on those who have come nearer for a time

For them we will simply give our love, again and again.

My life sprints and spurts in a race against time, energy, resources, wisdom, and fatigue

For the long naps this past week I shall be grateful.

My most prized moments are those stuck in the middle of all with you my dearest love

For your tender arms bring Jesus with skin on:  tis a really good thing, being here with you, even now.

My life would matter less if not witnessed, not shared by one who cares for me so and me for him

For such a time as this, you are the most incredible gift.  I love you Steve.  Thank you.

JJ

 

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

Winning through losing

Winning through losing is the title of an article by Pastor Sandy Adams in the Summer 2017 issue of Calvary Chapel Magazine that touched my heart and lightened my burden this day.  Pastor Adams told the story of the Apostle Paul of the Bible who, after coming to faith in Christ, never had a “thorn in his flesh” removed despite praying three times.  He describes it as follows with a passage from 2nd Corinthians, Chapter 12:

Paul learned to view his thorn as God’s gift.  He rejoiced in the weakness it caused; for it became God’s opportunity to demonstrate His supernatural strength.  Paul rejoices in verse 10, “Therefore I take pleasure in infirmities, in reproaches, in needs, in persecutions, in distresses, for Christ’s sake.  for when I am weak, then I am strong.”  He took pleasure in circumstances where he was no longer in control.  A weak Paul empowered by God’s grace was more effective than a strong Paul at peak performance.  Paul was confident that God’s grace was sufficient. (p. 52)

Pastor Adams goes on to encourage us that the Lord’s greatest work is in our times of defeat:  a work that He intends to do all along.  “Rest in this:  When we are at our weakest, God makes us strongest.” (p. 52)

It is my hope that my writings here will exemplify this teaching.  I have struggled greatly these past few weeks with episodes of physical and spiritual darkness too ugly to describe publically.  To think that I may never be free from daily convulsive episodes is a burden to great for me to bear in the midst of these setbacks.  At the same time, I continue to have a sense that perhaps soon they will stop.  Should I not hope that they stop?  I think not.  My calling is to remain faithful to the moments in which I find myself:  doing that which the Lord wants me to do, discerning the leading of the Holy Spirit, dwelling in the presence of my King often.  If that means being obedient to the Lord’s call to get off the couch to take a rescue remedy while my head is banging, my legs aren’t working right, and pressured vocalizations are emanating from deep within my loins then I will trust that my Heavenly Father will keep me safe while I do so.  It’s amazing how supernatural power overcomes my own inability to move my body correctly.  His power is real!

I recently completed a course of antibiotics to treat a gut infection that may have a connection to my brain symptoms.  The medication hurt me with damaging side effects.  After 10 days I called my Doctor and transitioned to the first of two herbal protocols that would follow next.  Tomorrow morning I will start the second of these two plans including dosing at an elevated level of an antimicrobial that I have largely tolerated in the past.  I am hopeful that recovery is possible with this new plan.  After reading Pastor Adam’s article today I will remain mindful that there is purpose and power in every moment of this journey no matter the outcome will be.  The power of Christ has indeed rested upon me in my weakest, most breathless states.  I have trusted Him completely albeit not perfectly.  He has ordained these days for me revealed in other levels of healing that I cannot disclose right now:  the longest held desires of my heart have been addressed, have been comforted.  Through seizures!

In time, the Apostle Paul saw his thorns as a gift.  “Imagine, a thorn gift” suggests Pastor Adams.  “When Paul accepted his thorn as a gift, God gave him strength.”  As I have come to my own level of peace with this serious illness, I have received many gifts as well.  Another great blessing has come from my beloved husband, Steve’s, unfailing love, presence in the darkest of times, prayers, and gifts of the spirit.  He is often my Jesus with skin-on, so to speak.  This morning he anointed me with oil as he prayed for me in the aftermath of incredible difficulties.  Oh Lord, please bless this man, this instrument of your peace!  Help me to love and serve him as you would have me do so with your strength, with words from You to encourage his heart.

You know I never really thrived when posed with a competitive situation at home, with my peers, at work, at school, or in most places in life even though I know that it is o.k. to strive for excellence in all of these settings.  I usually fell short before reaching the prize.  Perhaps my focus was on the wrong place?  Winning through losing brings us to the eternal finish line, the one that matters most, in second place behind the Lord, Jesus Christ who will share in the victory that He hath created all along the proverbial races of life.  These are the ones that truly matter.  The ones where we let Him carry us or infuse us with His grace, His power as we cross over into eternal glory.

Now that’s a medal I do want to take “home.”  Lord, in your mercy, help me to finish well!  JJ

2 Cor, 2 Corinthians, 2:9, weakness, grace, sufficient, Christ, power, overcoming trials, Bible verse, encouraging

 

 

Slow but sure

Whenever my Dad’s mom was facing a setback in her health she had one phrase regarding her progress, “I am getting there, slow but sure.”  She might be in the hospital with an exceedingly painful case of shingles but her response was just the same.  Surely this attitude endeared many of the medical staff to care for her just a little more.  I sure appreciated her more when she reassured me with these words over the phone 300 miles away.

slow but sure, slowly but surely, senior crossing, traffic sign, grandma, grandmother, sign

I have decided to borrow this attitude for myself.  Perhaps it will help with another temporary setback as I recover from a recent biopsy of my thyroid.  My neck hurts!  The procedures and resulting discomfort have triggered more noxious symptoms including those related to hormone fluctuations:  temperature dysregulation, blood sugar swings, occasional tearfulness, etc.  But it had to be done:  my third round of biopsies over the years at least this time was performed under conscious sedation.  Gratefully I did not have to be awake when they pushed that very long needle into my neck.  Eeeeek!

My recovery is coming along, slow but sure.  Today I was able to be upright more hours than yesterday and hopefully I will be able to leave the house tomorrow for an appointment before my infusion of antibiotics in the afternoon.  The latter continue 3x per week as they will very likely for the total of a year of IV ceftriaxone.  We are trusting the Lord to provide for all of this; we have had to pay thousands per month ourselves for most of this year.  With treatment by a naturopath and genetic coach, compounded medications and supplements, and every kind of co-pay there is, we should qualify for a medical tax deduction for the year without any problem!

At least now I am not failing unto death any more.  What good would I be to anyone to allow my health to decline without a fight?  I believe the Lord gave me a brain, five years, and an unusual provision of resources to get this job done so getter done I shall with my beloved Stevers leading the way.  Slowly but surely this train will reach the proverbial “Station*” just in time someday with a little less baggage for having fought the good fight.  And it looks like things may be looking up soon (provided the biopsy results indicate that the thyroid nodules are benign!).  Regardless:  God is good.  All the time.  God is good.

I hope that you know that to be true too, Gentle Reader.  Feel free to tell me about it below . . .

*https://justjuliewrites.com/2013/03/24/the-station-by-robert-j-hastings/