Just Breathe

The stress is crushing

Into my chest, my frame in flare

Old issues still wanting to be a friend

Screaming with the new ones, a symphony of suffering.

The stuff of life

Crowds every moment and then

The smart phone dies and hours are sucked up

In this Verizon store, that kiosk, then hours with online tech support.

My checkbook sighs

From neglect then a balancing act

Or nightmare as the expenses of preparation

Smell poorly like the “unscented” shampoo at the dog groomer!

Alas I confess

I have been here before:

A medical trip on the horizon

Brings hope but making it so: invites a nightmare.

For how does one prepare

With a brain on fire and infections too

Each vying for attention in the hours that remain

Before departing to the fabulous Mayo Clinic very soon?

Just breathe little one

The one inside that is afraid

Come to my rest my Jesus calls to my heart

Lay here your worries, your burdens; the time remaining is mine.

How fitting after Valentine’s

When I barely got to see my amazing love

That the Author of love would also come to my rescue

And all I have had to do is let go: let Him add the increase for the rest.

The rest. Hear that!

For the opening of this door

Was ordained for this season in life

The last medical records will arrive today. Go take a nap already JJ.

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

This but that, but this!

The plan began with a desire to see my husband’s family for an upcoming holiday.  But gathering in Texas would require 2 very long days of driving for us, pulling a travel trailer.  One family member suggested we meet in Arkansas instead which would be closer to the university where a younger family member is studying.  Cut off one full day of driving for us?  Yes, let’s go to Hot Springs, Arkansas instead.

This plan continued with the hope that we could camp at the RV Park inside Hot Springs Village.  My Mother-in-Law has a house in the Village and we would be closer together.  But the campground will be under construction for the months of November and December to have sewer hook-up lines installed.  It’s going to be closed!  Yes, let’s go to an RV Park about 30 minutes away on top of a picturesque mountain top instead.

The plan originally included having Steve’s daughter travel with us then the idea popped up to have both of Steve’s daughters stay with us in our travel trailer.  Oh what a blast that would be!  We now have the room to accommodate them but I simply cannot do so at this time.  I was devastatingly sick for 4 days this past week when some new fragrances triggered my worst symptoms of Chronic Inflammatory Response Syndrome.  Geez, we don’t even know how we will have family over during the Christmas holiday let alone have them visit overnight when both are back in town.  (Our attempt in September failed.)  But to stay in closer quarters of a travel trailer while away from home in a less-controlled environment?  Yes, we want to be together but no, let’s at least travel and stay separately this time.  Again really.

This plan got even more complicated when planning our trip scheduled for departure not long after that horrific flare up last week.  I saw my newer Functional Medicine Doctor who spoke frankly and clearly:  I don’t think you should travel now.  What?  She said it would set me back even further, even if she could find a replacement for a treatment that contributed to the flare-up last week.  So her recommendation posed a dilemma for my saint of a husband who wants to see his elderly parents-n-family AND be with me.  Did I mention that our wedding anniversary is coming up?  But I really don’t want to be alone on a holiday much less our anniversary!  Yes, we want it all and may need to split up the holiday into a shorter trip, a shorter anniversary celebration.  We are used to compromises.

The planning behind the scenes for this month involved a recall notice for our new-to-us travel trailer.  We bought it after the original owner had it for about 3 months so we never got the national recall notice; it was for a safety feature that could pose a grave threat if not corrected.  We found out about the recall in a Facebook group!  Nineteen phone calls over the past 15 days resulted in a plan to have the recall work done at a local RV repair shop.  But it got too close to our potential departure date to get the trailer to the shop-and-back:  2 trips of 3-hours of travel each time.  Yes, we are no longer travelling with the travel trailer so we have more time now to get it fixed!

This trip required me to get the oil change and tire rotation for my truck that was coming due.  We just figured out that we were not travelling cross-country but I decided to get the maintenance done anyways.  On the way to dropping off my truck at the shop last night I HIT A DEER!  The impact trashed the right-front quarter panel and headlamp of my Nissan Frontier.  The turn signal stopped functioning correctly.  There is no way we could travel cross-country (which always includes nighttime travel for us) with a damaged headlamp.  Yes, you can see now that the door to travelling this holiday is now fully closed.

Nissan Frontier, deer, impact, hit, accident, crossed the road, Coldwater Rd., Fort Wayne, Indiana, white, truck

The plan may change to include my hubby travelling alone for a shorter time while I rest up; we are holding our breath for now.  But what if it snows?  He needs new tires on his car before the next time it snows, according to the professionals.  Yes, we will find $800 for tires if we need to . . . That’s about how much a longer trip would have cost anyways, if we helped with housing for Steve’s daughters.  Which we would offer, of course.

This but that, but this!  Such is life in this fallen world in which we find ourselves.  Many times I have said that when the trials have come, seemingly often of late, that I am holding out for the hope of heaven.  Heaven indeed.  The late Pastor Billy Graham wrote:

Paul wrote, “If only for this life we have hope in Christ, we are to be pitied more than all men” (1 Corinthians 15:19). But our hope isn’t only for this life! In the midst of life’s storms, our hope in God’s promise of heaven is “an anchor for the soul, firm and secure” (Hebrews 6:19).

He said that if we are ever going to live for Christ, then do it now.  I was reflecting on these themes when I was emptying the trash the other day.  I hit my head leaning over to remove the top of the can as the can was positioned between the toilet and the bathroom sink cabinet.  The top slid back behind the toilet, my head brushed against the toilet paper dispenser, and something fell back there too.  I wondered if in heaven things like emptying the trash would always go smoothly?  Then I realized that there is no trash in heaven!  We know this from Revelation 21:4 that tells us:

He will wipe every tear from their eyes. There will be no more death’ or mourning or crying or pain, for the old order of things has passed away.”

I imagine that there will be no long days of driving with cracked headlamps, recall notices, endless phone calls to make things right, separation from loved ones, suffering, cramped bathrooms or travel trailers, worn tires from roads traveled, nor heartache in the dwelling place of our Lord, Jesus Christ.  This is a plan upon which we can depend for those of us who believe.  Now that’s a trip I’m already on.  How about you Gentle Reader?  JJ

A Well Worn Path

If you travel the same way and expect different results they say it is the definition of insanity.  I get that so I resist the same.

If your baseline shifts and you take the same precautions against a disastrous outcome, you might say you are taking a chance that you might get different results.  I usually control the factors I can and go with the new direction . . . when amnesia sets in from the last failed effort and something new looks promising.

If you smash into a devastating blow anyways and have to retreat to combat the devastation, you might say that you were more rolling the dice than making a reasonable plan for success.

If you add too many factors in any plan, precaution, retreat and come up against a surprise attack from an unforeseen foe then you won’t know what hit either one of you until the smoke clears along with your heads.  Me:  hours of violent convulsive episodes and the aftermath.  Him:  heartache, exhaustion, and no peace.

And if you are me in the latter years of battling a complex illness, you live in shock from the blows of what hit you in the last 24 hours when it is after 6 days of relatively few symptoms.  The new treatments did look promising.  They did not hold off the onslaught, however.  And you paid one of the highest prices once again this side of heaven.

And if you are the beloved husband trying to navigate these landmines, help fight the war while carrying on with the normal and fun activities of life . . . you will have to watch the horror of your beloved get tortured on the battlefield.  You try.  Success is elusive or temporary.  You fail.  Again you grieve and so does she.

And if this well-worn path brings despair then so be it.  Tomorrow is still another day.  As for me, I’m still here and so is my beloved.  Most importantly, I know that my Lord sees my waterfall of tears lain at His throne of grace.  Life will go on somehow as it always does; I have more responsibilities now.  The despair will give way to some sort of hope in due time; the Lord will add His grace and strength to see me and my beloved through once again.

For today, I am like a beaten puppy on this well worn path of life.  It is tough stuff indeed.

Dang!  JJ

I long for you

My intended beloved, oh man of my longing

How is it that these things come between you and me?

I lie next to your warmth, oh so ready to imbibe

Til the horror of illness keeps me far, far away once more.

Albeit evil it must be:  a test for my weary, so weary heart

You know my lord and my Lord that I do shake with grief so!

Perhaps just for a time, please wait for me love

I shall return soon when illness has gone one day, I promise, I do.

Until then know that you are the one for whom that my heart sings

The one who loves me so, beyond that which I can even wanton,

My knight in shining aluminum, we jest, but you are indeed more

And know me well, I love you too . . . this is all I need to know to live.

Our Jesus is out in front of us two leading us on

When darkness comes, oh here it is again, we shall not be moved;

Hold me as you are able or as my frame lets you in

Forever in my heart you know you will for always be with  me.

Solomon, 3:4, Christian, marriage, trials, chronic illness, sickness, intimacy, sexuality, wife, husband, Lyme, seizures