In the Shadow of the Mustard Tree

I found this journal entry I wrote in the early 2000's as I sat on the hill outside the church I had grown up in, my father pastored and where I raised my children.  

Milestones in life, whether they be a new year, a special event, or the arrival of a new season, inspire reflection.  It’s as though one is standing on the brink of the present and overlooking a panoramic vista of life; a vista in which memories of the past merge with the hope for the future to create an intricately interwoven scene. 

In the landscape of my mind’s eye, I see a church standing on the hillside – my church.  The light shining from its windows warms me.  I strain to hear the echoes of the music and choir singing within.  Faces begin parading across the scenery.  Those I’ve known from childhood mix with the new faces, until a sweet, gentle face from the past superimposes itself.  The wrinkled visage of her countenance is aglow with the smile I remember so well- the face of Minerva “Irene” Lybarger.

May 4, 1904, nearly one hundred years ago, Irene began her journey through life.  Her voyage was to be one of hardship.  Early in childhood she faced the death of her mother followed by years of being put out to work.  During those times, it was common for parents who couldn’t afford to care for their children to send them to work on nearby farms where they slept in the barn lofts, often crying themselves to sleep – alone with no family nearby to comfort them in times of sorrow or sickness.  Such was the case for Irene.

Marriage brought no magical end to hardship.  A short-lived time of prosperity ended with The Great Depression.  In one day’s time, the young couple saw their promising store’s doors close for the last time.  Next came a short prison term that her husband, Freeman Wilbur Lybarger, served for bootlegging during the prohibition - in a desperate attempt to provide for his family.  World War II again took her husband away for a time, forcing her to care for her children on her own and moving her from Missouri to Pennsylvania. Then, alcoholism and a domineering personality stole the joy from her marriage when her husband finally returned from war.

The smile that lingers before me does not match the life’s story of Irene.  Her joyful character did not stem from this world.  The year was 1930 when things began to change for this young lady.  She went to a Pentecostal tent revival in Missouri (Brother Ben Pemberton was ministering) where she received the gift of the Holy Ghost and was baptized in the name of Jesus.  How well I remember the story she told so many times.  I recall the glow that seemed to surround her every time she recounted her conversion, and the shout that would spontaneously erupt every time she talked about Jesus.  Time did not steal her enthusiastic love for her newfound Friend.  Nor did life’s hardships steal the joy she had discovered.  Even though life became no gentler, Irene found the Comforter that Jesus had promised to send his disciples in the book of Acts.

For more than 30 years Irene told the story of Jesus to her children and grandchildren.  For more than thirty years she planted seeds of faith in their hearts.  During the year of 1965, Irene began to see the seeds she had planted spring forth.  Two daughters found their way to a little Pentecostal church and were filled with the Holy Ghost they had heard about so many times.  Thus began a season of reaping for Irene that included grandchildren being saved and preaching the Gospel, and great-grandchildren being saved [at the posting of this piece there are 5 generations of Pentecostals and preachers]. She reaped a final reward months before her death when she witnessed the salvation of her 76-year-old husband.

Matthew 13:31 says “The kingdom of heaven is like to a grain of mustard seed, which a man took and sowed in his field: Which is indeed the least of all seeds: but when it is grown it is the greatest among herbs, and becometh a tree, so that the birds of the air come and lodge in the branches thereof.”

Irene’s joyful face slowly begins to fade, and I see again the warmly lit church, which was founded by her grandson.  I envision the thriving congregation and feel its vibrant atmosphere surrounding me.  The doors burst open and I see and hear a group of children laughing and playing.  Among those bathed in the glow from the door left ajar behind them are my own two children.  My heart swells and a tear escapes my eye as I look toward the sky hoping for one last glimpse of my great-grandmother’s face.  I see only the stars, but can’t stifle the urge to whisper, “Grandma, I’m sitting in the shadow of a mustard tree. Thank you!”

Good News for Alpha's

 A lot of people will see the headlines and think it's a great thing that another treatment has been found, and perhaps speculate on the pharmaceutical financial motivations for creating another drug. But for anyone with Alpha 1 Antitrypsin Deficiency, this is BIG news!  I, and others like me, have suffered greatly from the effects of a mutated gene.  For me it meant lung function decline, cirrhosis, kidney failure, heart failure and encephalopathy.  I was one of the lucky ones.  I got a new liver.  Although the process was long, grueling and filled with hurdles, I made it to the other side. Many don't.  AATD steals years from mothers, fathers, grandparents, siblings. To us, this news is HUGE!

Saint Louis University and Industry Partners Discover Treatment for Rare, Genetic Liver Disease

I'm looking forward to the day when no one has to go through what I've gone through the past 15 years of my life.  I was sick throughout my late 30's and my 40's.  This year I celebrated 50 and am feeling better than I imagined I could ever feel again. I'm beyond grateful!  But... I hope none of my children or grandchildren have to experience what I have, so yeah! for a treatment/cure.

 

2020

2022

Almost two years post-transplant and thankful for every new day!

Heart Talk

This morning I was reading the first Chapter of Ecclesiastes and verse 16 caught my attention.

16. I communed with my own heart, saying Lo, I am come to great estate and have gotten more wisdom than all they that have been before me in Jerusalem: yea, my heart had great experience of wisdom and knowledge.

 Do you ever have "heart talks?"  I have these moments of reflection when I can reach way down inside of me and discover truths that had previously lain buried and undiscovered - to me, anyway.  Maybe it is insight into my own emotions, a sudden understanding of an event, or perhaps clarity about an objective.  What I've noticed is that these moments of revelation and clarity seem to happen more profoundly after an internal struggle of sorts.   

I remember as a young girl praying for wisdom.  Solomon was one of my Bible heroes.  I studied the Proverbs regularly and sought to make wise decisions in life.  In my naivety, I believed that if I all made all of the right choices and did all of the right things I would save myself from the pain fools experience.  In one of my "heart talks" after a series of major heartbreaks in my 30's, I extracted from my inner most being the realization that you can make all of the right choices, do all of the right things and have your life come tumbling down because of someone else's bad decisions and foolishness.  The truth is that life is painful; there is no escape from pain - no matter how wise you are.

Another "heart talk" in my 40's (a decade later) brought me to the liberating discovery that other people's mistreatment of me really had nothing to do with me.  I suddenly understood that their anger or hurtful actions toward me were only symptoms of their internal struggle and not a reflective reaction toward me at all.  This moment of revelation gave me the freedom to see past my own emotions and really see the perpetrator of my pain.  While, yes, it freed me from assuming the responsibility of their rejection and aggression, it saddened me to realize how much of human suffering stems from other human suffering.

I don't want to mislead you into thinking that all of my "heart talks" are negative, but the older and "wiser" I get, the I better understand why the wise man went on to say in verse 18:

For in much wisdom is much grief; and he that increaseth knowledge increaseth sorrow.

The more I learn about life and the world around me, the more I see the underlying impact that sin brought into this world:  suffering, pain and death. 

 

Almost Home

 After I recovered from sepsis, I did not want to return to the rehab facility.  I felt traumatized by what had transpired there.     All I wanted was my family.  I had been alone through the worst time of my life, and I couldn't deal with being alone anymore.  It didn't occur to me how much work it would be for them, or that it would disrupt their lives for more than a month.  I just needed my family.

I was finally discharged into my parents' care, but we had to stay in a nearby hotel in case I needed immediate hospital care.  I did have a three day re-admission, but nothing serious.  My crisis days were over.  Thank God!

During that time, I needed to go to a nearby lab in the mornings for bloodwork.  It was still very difficult for me to stand or walk.  One day I hurried to get out of the car at the lab and into a wheel chair.  When I got off balance I fell onto the driveway.  Neither I nor my mother could get me up.  The lab called an ambulance.  They used a sheet under my arms and picked me up.  Once up, I was okay.  I learned that I couldn't afford to hurry or get off balance.  At that time, I was still quite heavy and swollen.  My parents weren't able to pick me up if I fell. I had to be more careful.

My days were filled with visits from nurses and physical therapists and small tasks.  Even the smallest task was a huge triumph.  We take for granted the ease with which we do the simplest things (like showering or walking).  When you're healthy, you don't notice the energy you exert to do these things.  I was taxed to my limit to accomplish the simplest things, but grateful for every triumph.

I struggled to eat, and my parents did everything they could to find food that was appealing to me.  I'm a little embarassed when I look back at how fussy of an eater I was during that time.  But most of what I did eat came back up.  My father was so patient, and would simply clean it up.  He really surprised me with his nursing skills.  I knew Mom could be a wonderful nurse, but I had never seen that side of Dad.  He changed my bandages, kept my medications straight, and cleaned up after me.  Mom fussed at me to do my physical therapy, cooked and took me for labs.  I was so blessed to have such a wonderful care team.

On the weekends, my parents took a break and went home.  My husband came and stayed with me.  I looked forward to our weekends together.  I really missed him.  He liked to take me out exploring.  The haircut he got while we were there is legendary!  We've laughed about it since.  We went to Lake Erie one Saturday.  I think that was a turning point for me.  I started feeling like I was living again.

My hubby refused a close up photo 

because of the out-of-town haircut! lol

Rehab Attempt 1

 My recovery was much slower than the Transplant manual I received when I qualified for transplant indicated it would be.  When they first mentioned my going to a nursing home or rehab facility to complete my recovery, I freaked out a little bit.  There had been no mention of that in the manual.  I finally accepted that I would need more help recovering than my family could give me, so I needed to go.

I had several setbacks that prolonged my move to the rehab facility for weeks.  However, I finally made it!  I was excited to be on the road to recovery and willing to work hard.  But then, things began to go awry once more.  I had the second negative experience with a nurse, and I began to get ill again.

I don't know why the bed alarm kept going off.  It was meant to alarm the nurses if I attempted to get out of bed alone, but every time I rolled over it went off.  I understand the nurse's frustration, because she was busy and had to keep checking on me.  But one day I was talking to my Mom on the phone and left it on when the nurse came in.  Not knowing Mom could hear her, she began to say unkind things to me, asking if I was going to have a pity party for myself today.  I don't know why she would say that, because I was excited to be working toward recovery.  She threatened to do something to make sure I didn't get out of bed on my own.  I got very upset and insisted to Mom I was leaving and would be outside waiting for her to pick me up.  When Mom told me I needed to stay, I tried to get ahold of my husband, but he was working.  Finally, Mom contacted the transplant coorinator and she came and settled me down and investigated the nurses behavior.  My Mom told her what she overheard.

What I didn't realize, was that I was slipping into delirium again.  That night I hallucinated that I had driven home, visited my husband and son, went to church and came back before the nurses knew I was gone.  As I lay there, I realized the hallucinated car I drove was in the parking lot, and I had left the lights on.  To this day I cannot figure out how I got out of the bed on my own to go turn the lights off.  I had my walker and entered the hall, where I saw a nurse coming.  I tried to hurry back to the bed to avoid being caught and fell.  I hit my head on the door and my tailbone on the floor.  I laid there and began to cry in both pain and frustration.

I still didn't know I had slipped into delerium.  I remember overhearing a doctor chewing my nurse out.  He told her she needed to have some compassion, I wasn't in my right mind and not thinking clearly.  I thought how kind he was for defending me, but wondered why in the world he would say I wasn't my right mind.  I don't remember the ambulance ride to the hospital.  It was days later that I became aware of my surroundings again.  They told me I was in the ICU for sepsis.  I had gone through surgery to remove a large blood clot around my liver, my medicine port had been removed, and it looked like the sepsis was beginning to resolve.  

I recently was reviewing some paperwork and saw that I had an MRI on my brain, CT scans, and an ultra sound on my neck because they found a growth on my thyroid and discovered I have Hashimoto's (Graves) disease.  I remember none of it. But once again, I survived and was back on the road to recovery.

Mary, Mary

I had several roommates during my hospital stays that made an impact on me.  I've remained friends with a few.  Mary was unforgetable.  I don't know what her illness was, but she had a catheter bag that always seemed to be in my line of vision, and filled constantly with blood.  I'd lay there while I was fighting my own demons and watch the bag fill with blood.  Sometimes it got too full and the clip couldn't hold it.  When it fell I'd call the nurses.  It seemed the blood they kept giving her was going into her arm and out into the catheter bag.  

Mary's story broke my heart.  She'd been in the hospital for months waiting for surgery.  She was constantly on the alternate list for cancellations in the operating room.  One day she said, "They keep me on the call waiting list, but when do I get to be the patient instead of a number.  When do I become a priority instead of an overload?"  One day, I called the nurse because I thought she was in trouble.  They did a lot of stuff and a lot of nurses and doctors came.  In the end, they rolled her out and told me she was going to surgery.  I secretly suspected she died.

Later that evening, they brought a gurney with someone on it.  I didn't have my glasses on, but it appeared to be the general size, shape, and the same gray hair as Mary.  I called out, "Mary is that you?"  "Yes," she replied. They hurried her into the room and pulled the curtain to settle her in.

I was unbelievably relieved!  I really thought she died.  Our conversation through the curtain went like this:

Me:  Mary, I'm so happy to see you here.

Mary:  You are?

Me:  Yes! I was so worried about you!  I prayed for you!

Mary:  Why?

Me:  You weren't doing very well when they took you to surgery!  I'm so glad you made it ok!

Mary:  I already had surgery?

Me:  (Thinking the drugs were making her fuzzy) Yes, Mary.  They just brought you back.

Mary:  How long have I been here?  I thought I just got here!

Me:  No, Mary.  You told me you've been here for months waiting for surgery!

Mary:  (Starting to panic) Oh, my God!  I've got to call my husband.  I had no idea!  I thought I just came in on the ambulance.  I've been here for months and don't remember it?  Oh, my God!  I knew I was sick, but not this sick.

Me:  You're Mary, right?

Mary:  Yes, I'm Mary.

Me:  You're Mary XXXX (last name inserted)

Mary:  NO!  I'm Mary YYYY (last name inserted)

Me:  Suddenly horrified that I'd just scared the wrong Mary to death and questioned her sanity, when I was the one messed up!

What are the odds  the new Mary was so very similar in size and age to the first Mary - even her voice? We did become friends.  She didn't hold our initial meeting against me.  However, the nurses looked at me a little too intently for a while.  I think they suspected I was starting another bout with delirium.  

Rocky Road to Recovery

 After my transplant was fnally complete, I could hardly recognize myself.  I was unbelievably swollen.  My abdomen was huge.  It was like someone had put a huge tortoise shell on top of me.  My legs felt like they belonged to someone else.  But the thing that stood out most to me was my arms and shoulders.  They hurt horribly... worse than the incision from transplant.  My bones felt like they were burned.  The fingers on my right hand buzzed. (In transplant they insert IV's into very deep veins and can damage nerves in the process.) I begged for heating pads for my shoulders.  The wonderful nurses scoured the nearby wards for them for me.  

I want to shout out to the nurses.  Over the years, I've dealt with many.  Out of the hundreds of nurses I met over the years, I only had two bad experiences.  I've come in contact with a lot of great nurses, but those in the ICU units at Cleveland amazed me.  They were extremely knowledgable and skilled, but they were also compassionate and gracious.  They cleaned me, fed me, cheered me up... did everything I was unable to do during those first weeks.  I was very grateful for their assistance and care in my helpless state.

I was in the ICU nearly three weeks.  Most liver transplant patients are heading home at three weeks, so I had a pretty rocky start.  My goal was to get to the regular floor.  In order to do that, I had to be able to have my NG tube removed.  My nurse warned me not to push it.  "You'll really wish you hadn't if your stomach isn't ready."  I got it out soon after, and headed to the regular floor.

I was so happy to be on the regular floor!  It meant I was improving and thinking about heading home.  Little did I know, home was not in my immediate future.  My stomach began to fulfill the nurses dire warning.  An NG tube had to be reinserted.  I struggled with a bout of supraventricular tachycardia (rapid heart rate that required cardioversion - medically stopping and restarting the heart).  Once again I developed a pneumothorax and had to have a chest tube for more than a weak.  

My incision would bleed profusely.  At one point I was sitting up and looked down.  There was a four foot diameter pool of blood that was running from my chair to under my bed.  I freaked out, thinking I was bleeding to death.  The nurse called for help when she saw it.  It turned out to be blood laced water, which appeared more severe than it was.  

In the ICU, I had one-on-one care.  On the regular floor, I had great care, but lonliness began to set in as the nurses visited less and less often.  Additionally, the massive amounts of medication made me feel numb - like my personality was on mute.  The combination of the unresolved mental trauma from the shooting event in August and the crisis where my respiratory system shut down left me feeling vulnerable and unsafe.  As I struggled with bouts of dilerium, I hallucinated people trying to harm me and my son.  I became very withdrawn and started shutting people out.

I remember one day the surgeon came into my room like a whirlwind.  He opened the blinds and demanded to know why I was sitting in the dark.  Where was the Angela he knew?  This withdrawn, unsmiling person in the bed was unrecognizable!  He demanded to know what was wrong! I really didn't know what was wrong.

The next day, the hospital chaplain paid me a visit.  He was a really great guy, and I appreciated his concern.  We talked.  I enjoyed the visit.  Then they sent an art therapist.  I didn't know hospitals had such a thing.  But she sat my bed into a chair position and set me up to paint.  I finally did talk to her while I was painting and realized why I was feeling so down.  My mental health began to improve and I fought hard to recover.

My art therapy paintings...