Thoughts from Mark "Hat" Rackley

I remain confident of this:
    I will see the goodness of the Lord
    in the land of the living.
Wait for the Lord;
    be strong and take heart
    and wait for the Lord.

• Psalm 27:13-14

Sitting down, Jesus called the Twelve and said, “Anyone who wants to be first must be the very last, and the servant of all.”

• Mark 9:35

To explain the verses, Psalm 27:14 is the verse my wife quoted most often, but when you add Psalm 27:13 and Mark 9:35, you get the essence of the woman I married.

The last episode was like this one will be.  Some events are fixed in time and other events run parallel to other things.  I may not get everything in the right order, even though these are the more current events.

A Last Word on Her Wanderlust

I have mentioned that my brother, father, and mother died, all in 2011.  We went to each funeral, but when her next younger sibling, Peter, was dying of kidney failure, she was by his side, holding his hand in 2012.  Another Sister and their mother were there also.  She had made the trip by air since I was still working at the time, knowing it was inevitable, but not knowing how long she would be there.

Five years later, in 2017, we took a trip to Mississippi to visit our son, and to take their youngest child to see my wife’s mother.  Our son’s entire family went down.  We visited.  We went to Galveston, just to ride the ferry and feed the seagulls.  And then we went back to Mississippi.  We had rented a minivan, and those are far from cheap.  As we started to unpack the car in Mississippi, my wife got a call that her mother was taking a turn for the worst.  It seemed she had wound up all her energy to see our youngest grandchild, and now she was spent.  The next morning, my wife and I went back.  After a day or two, the daughters had the idea of singing the old Dutch songs.  It was the first bit of responsiveness from their mother, only moving her lips to the music.  The next day, we went by the rental counter to extend the rental of the minivan.  We knew it was probably already scheduled for rental back in Pennsylvania.  As we got to the house and started walking in, one of her brothers came out to say she had just breathed her last.  Texas requires seven days between passing away and cremation, so my wife and I went back to Mississippi to wait.  Besides, our son’s family wanted to attend.  One more trip to Texas for the memorial service and then a fast trip home.

The rental car company must have blacklisted us for letting them know when we extended the rental and drove a brand-new minivan over 6000 miles (still within the required first service).  We reserved two cars from them over the next two years, and somehow, they had no cars in the lot each time.  I wished they had just said that we were blacklisted.  Once might be a mistake, but twice meant it was personal.

Then, just a few months before she passed away, with our son now in Tennessee, we picked them up to attend another brother’s funeral, youngest of the brothers.  She was on kidney dialysis, and we had to schedule the sessions away from home carefully, all in Tennessee, but that limited our visit in Texas.

But after the first of the sibling deaths, I was laid off and then immediately rehired as a consultant.  I had been working a project in Tennessee, and as usual, she went with me and made a lot of friends, people at the hotel and my partner’s family, having partnered with a local safety person to direct safety on a big project.  As I was laid off, I was thanked for saving a multi-million-dollar project, but I was laid off anyway.  “Oh, you will go back to Tennessee next week…”

But after that job was finished, the parent company contracted me for a job in Palatka, Florida.  My wife had things to do in Pennsylvania.  She visited for a few weeks in the summer, but then around Labor Day, she returned to Florida again to stay until the project was over.  We found wonderful used bookstores in Jacksonville and Ocala, Florida.  We spent most days off, which were few, in St. Augustine, even going there after work for some fine dining.  By this point, my wife was taking a lot of medicines and she had moved our prescriptions to the wholesale warehouse store.  The closest one was in Jacksonville, Florida.  We learned our way around the southern half of Jacksonville.

Again, she made friends at the hotel, every cleaning lady, every desk clerk, and the breakfast crew.  Many were from Puerto Rico, but the head manager was from eastern Europe, I think.  My wife would have known the town.

While in Florida, she went to the wrong Veterans Affairs office, but she got a consultation anyway.  The VA person said from her records, she should have been medically discharged, collecting pay for the past few decades, but she would be eligible for the maximum disability.  We filed, and we were denied.  We were told that the appeal was a simple matter, since her case was very strong.  We appealed and suddenly, some non-existent record showing that her PTSD was preexisting showed up – records that were not there when we got our copies.  The old LTC had done it to her again.  Although now diagnosed with PTSD, she refused to appeal a second time, and she flunked out of therapy.  Her therapist told her to kick the PTSD, she had to put herself ahead of others, but that was not what Jesus wanted.  She could not put herself, or me, in the top ten.  The therapist told her she had flunked out of therapy if she could not try to do that one thing that no one else on earth (in his opinion) would have trouble doing.  But she always thought of other people and rarely about her own needs.  In the meantime, I got a 10% disability for the GERD that started in Germany, no appeal necessary.

I would have a short contract at a job in Cleveland, Ohio the next year, but that was it.  She only stayed with me one week, going to the Rock ‘n Roll Hall of Fame, and again a few used bookstores.  She fell in love with one of those, finding very old Dutch folk tales in my wife’s native language, a treasured find.

The Downhill Health Spiral

Where should I begin?  My wife started kidney dialysis in August of 2020.  She had open-heart surgery in August of 2018.  She started wearing prescription glasses when she was 40 years old.  And she was diagnosed with diabetes on her fortieth birthday.

But my wife would start when she was a preteen, probably about the time she was preparing to go to middle school.  At least, an old tattered keepsake with people on both sides of the pond (USA and the Netherlands) wishing her to get well, some dated about that time.

She had a sore throat and her parents told her to gargle with warm salty water and she would be fine, but she wasn’t.  My wife said she had a high threshold for pain, but I think in some cases, she could just block out excruciating pain.  In her last days, she turned to me and said that she had said she hurt, but the way it sounded when she said that was a mild headache, not life or death pain.  But it was as a preteen when she learned how to suppress the pain and not “burden her parents” by letting them know she was really badly sick.  After over a month with a “slight” sore throat, she was asked to see the school nurse.  My wife had a high fever.  She was sent to the doctor, who said the strep throat had been neglected for so long that the infection was in her stomach.  She would spend the next two months or more having her school assignments delivered to the house as doctors battled the infection.  The doctors chastised her parents, but since she did not complain much, not wanting to be a burden, her parents ignored her wincing while swallowing.  Besides, my wife was one of nine children, the second oldest.  She had babysat the last five children.  She could take care of herself.

When my wife of nearly fifty years old, I returned from India with a skin irritation that still bothers me twenty-five years later.  But after being home for a few days, my wife’s legs started to swell and they turned strange colors, purple and orange.  The doctor sent her straight to the hospital and they thought it was rheumatic arthritis.  But she never knew if she had rheumatic fever as a child.  When she told the doctor about the strep throat incident, he said that was probably when her immune system was damaged.  It probably explained her heart murmur also, but we had already known about that for a couple of years.

That was the point when my wife’s health took a huge hit, and the immune system was damaged after that point.  And after she was diagnosed with diabetes on her fortieth birthday, it took her twice as long to get over simple maladies as it had before.  She never asked for additional medication, but if the doctor said 3-5 days and she’ll be fine, we would expect ten days before she started getting a little better, far from fine.

It was about the time she had the rheumatic arthritis episode, which everyone at our church (we no longer go there) gossiped was caused by me returning from India with a sexually transmitted disease…  Don’t worry, the church no longer exists.  But when that happened is about the time she was diagnosed with COPD, one too many Christmas cantatas missed due to pneumonia or bronchitis.

Then, on her third endocrinologist, he threw up his hands.  She was not responding to the cocktail of several expensive diabetic medicines.  He insisted on bariatric surgery when she was in her mid-50s.  The surgeon did a poor job.  She bled a great deal.  She never regained any appetite. But her kidneys stopped functioning altogether.  After over a week in ICU, her kidney function had recovered to a function in the low 40% range.

A few months later, or was it a year later, she had a scheduled endarterectomy to clean out a clogged carotid artery.  She flatlined on the table.  She would have a pacemaker installed temporarily before any surgery up until the open-heart surgery after that point.  She was revived by CPR, since they had no crash cart available.  The day before she died involved CPR the second time.  She hated the chest pain afterward.  Only one week later after flatline in the surgical suite, and she had the endarterectomy that was cancelled due to her heart stopping – thought to be an anesthesia reaction.

About this time, our older son took his family to the theme park with ears in Florida.  They asked her to come with them.  On the last day, the people controlling the crowd were not controlling the crowd.  My wife was pushed from a ride.  She fell on concrete, cracking her radius and tearing her rotator cuff.  With the cracked radius, no one looked at the rotator cuff, where she complained about the most pain.  The family stayed near the medical station until my wife was sent to the hospital.  While she paid for none of the medical help, she got no real help, and the folks with ears ushered her to the gate with no thought of admitting they were at fault.  Six months later, she went back to the doctor.  The crack in the end of the radius was where a tendon stretched.  For the roughly twenty years left in her life, she would do something, and it would sound like a bullwhip cracking from the next room, the tendon stretching over the scar tissues and then snapping into the natural groove.  But the doctor, six months later, saw that her rotator cuff was barely holding on by a thread.  Suddenly it was emergency surgery.  She went through the surgery fine.  The temporary pacemaker was removed, and she went home.  But the rehab was brutal.  She took all the pain medicine the doctor would allow, when usually she hardly felt any pain.  Other people have agreed that rotator cuff recovery is the hardest to go through, but then, she could lift her arm over her head, while others can’t.

After the rotator cuff surgery, her kidney function dropped below 40%.

Then, she babysat our youngest grandchild and sipped a drink after he had touched the cup.  She developed bacterial pneumonia.  It was harder to recover from this form and her kidney function dropped to near 30%.

Somewhere in there she had two cataract surgeries.  The eye doctor knew her history of healing slowly, so he scheduled the surgeries two months apart, not like the two weeks apart that I had a few years later.  She complained to the doctor for years after that.

Then, I had my only night stay in the hospital ever when I had a kidney stone.  They finally blasted it with a laser or ultrasound.  I think it was a laser.  That is significant in that we were due to travel to Texas, one year after my wife’s mother had died.  We had to cancel due to my procedure.  But then, she had a gall bladder attack.  The ER doctor grossly misdiagnosed everything and was about to send her by helicopter somewhere else.  My wife, against doctor’s orders, left the hospital.  As luck would have it, she had a doctor appointment that day.  He sent her for imaging and told her that the bloodwork indicated a gall stone that clogged where the gall bladder, liver, and pancreas all come together.  In the few hours since the ER visit, the stone had passed.  If it had not passed, it would have been an emergency surgery.

With no hurry, she went through the checks to get ready for gall bladder surgery.  (But she never had the surgery.)  Since we had trouble with my kidney stones and we refused to go to the ER that misdiagnosed her gall stone, we decided to try all new doctors except for our primary care doctor.  The new doctors all worked out of the same hospital, so no repeated tests or unwilling doctors to talk to each other.  Her new heart doctor refused to approve her gall bladder surgery.  He could not believe that the old cardiologist thought her murmur was mild to moderate.  Within a few weeks, she had open-heart surgery, and we even had a second opinion during that timeframe.  The kidney function, related to the anesthesia, dropped to the high teens, but almost made it back consistently a little below 30%.  Below 15% means kidney dialysis.

When she came out of anesthesia, they only asked non- yes/no questions.  She had a tube down her throat and could not tell them that she saw double every time she opened her eyes.  They thought she was having a hard time coming out of anesthesia and they sent me home.  When I saw her the next day, she said she was like Hezekiah, and she had fifteen more years.  She was only off by ten years, but we celebrated anyway.

The open-heart surgery recovery was a breeze.  By this time, I had been laid off and started my Social Security early at a severe penalty.  But I was there to sit with her for one week of in-hospital rehab, and another week of in-rehabilitation center rehab.  Then with the outpatient rehab starting a couple of months later, I drove her twice a week and waited.  I would have done none of that if I kept my job.  They did not allow enough sick leave to cover my doctor visits, much less any of hers.

About a year later, one of the kidney doctors was convinced that her kidney function woes were from poor thyroid and parathyroid function.  Images were taken and then surgery was performed to remove half of both glands.  The biopsies were negative, so they did not take out the rest.  But the attempt to increase kidney function backfired.  She dropped to 19%.

That last surgery was right before my wife was to go to Tennessee and babysit again.  Little did we know that COVID would trap her in Tennessee for six months.  I travelled to Tennessee to pick her up before all the restrictions were lifted.  She was not making sense over the phone.  She admitted to only shopping at the grocery store if she rode in a cart.  And she complained about some odd pains, something she never did before.  She never complained about pain. I had to go with her to the doctor to ensure that the doctor knew what was going on.

When I got her home, the kidney function was 15% and she had temporary catheters installed and kidney dialysis started. A neurologist thought she had Alzheimer’s but on the second visit dropped that to some other form of dementia, but the early stages.  She had not been truthful.  She had been getting lost coming home from the grocery store for over a year.  But everything else was fine.

And what is next?

I had thought this was the last chapter, but I think next week, we can talk about kidney dialysis, travel issues while on dialysis, our last vacation, and her last few months.  And through all of this, except for her rotator cuff surgery rehab therapist, she rarely if ever complained.  She smiled.  And as someone once said about her with multiple health issues, “It looks like you could do cartwheels.”  When it came to hiding the pain, she was a great actress.

And to all this, I give praise and honor to God.  Only He knew that the two of us would one day marry each other, and it would truly be until death did we part.

Soli Deo Gloria.  Only to God be the Glory.