ALS Awareness Month

ALS took my Mother

May is ALS awareness month…I am quite aware.  It is also the month of Mother’s Day and my mother’s birth month.  They are all related.  I lost my mother due to complications of ALS on January 2, 1969.  I’m quite aware and have never come to grips with it..

ALS, Amyotrophic lateral sclerosis, it is commonly called Lou Gehrig’s Disease.  It is not one of the more prolific diseases, only six-thousand new cases per year, only two deaths per one hundred thousand.  There is no cure.  My mother heard it’s banshee howl in 1963 and passed during my Freshman year in college.  Five plus years…the upper end of the projected life span after diagnosis.  I find little comfort in those facts.

The disease causes the death of neurons controlling voluntary muscles.  Death of neurons causes the affected muscles to weaken and atrophy.  The heart is a muscle as is the diaphragm that allows you lungs to work.  The disease allows the brain to stay strong and aware…aware that their bodies are dying around it.

ALS is one of those diseases you get to watch your loved one waste away in slow motion.  Her symptoms began with a limp and a twitch in her foot.  She became unable to work, then unable to walk, unable to sit for more than a short period of time.  Finally, she became hospitalized…well not finally, I guess.  Finally, she died.

She spent Christmas with us that year.  She wanted to come home one more time.  An ambulance carried her home from Columbia and then returned her.  We visited on the 1st. I remember sneaking a visit to the waiting room, pausing to watch OJ Simpson take off on an eighty-yard run before his USC Trojans fell to Rex Kern’s Ohio State Buckeyes.  The odd things you remember when trying to forget your mother’s struggle to breathe.

She died just after midnight.  She was forty-eight but the ravages made her look older.

My mother, Eldora at home, Mary at work, Mom to me, was a robust red head, covered in freckles with a complexion that turned lobster red after a brief walk in the sun.  She did not tan.  A true Irish, fish-belly white redhead, she blistered.

I remember a woman who was quick to laugh but few of her pictures show her smiling. I just don’t remember what her laugh sounded like.  I don’t remember her voice.  I try to hear her voice in my aunt’s voice but I’m unsure.  I want to remember the voice that goes with my vision.  I’ll have to be satisfied remembering her smile, something she didn’t do enough.

The disease robbed me of memories.  I remember snatches of things, her teaching me how to find a breakout on a loom, and tying a weaver’s knot comes to mind and I really don’t know why.  There are other memories, some good…some bad.

Despite her laugh, I have the memory of a woman who was shy and somewhat proper…reserved?  If she was my grandmother’s child, she was reserved.   I remember her dressing in shorts around the house or on vacation, but I can never remember seeing her in pants…she dressed to the nines whenever out and about.

She was a weaver at Springs Mill and for some reason, her work seemed to dominate her life and my memories.  There was church,  the whole family sitting on the “special” pew. There was friends, trips to town, and visits to see family and friends.

Most Sundays were dominated by the church, an early morning breakfast of pancakes prepared by my dad before I polished my shoes and dressed.  After lunch a visit to either the Yarbrough’s, Wilson’s, or Sutton’s home or a visit by them to ours.  Sometimes it was family…a lot of the time it was family.

We always ate supper at home.  Regardless of the work schedule, we ate supper together.  Many nights it was a TV dinner, but we ate together.  Spaghetti on Saturday nights was a staple and Sunday’s dinner was always prepared at home after church.  There seems to have been more hours in the day back then.

I see her dressed for work, a pale-colored, cotton blouse with a rope of thread looped around her neck.  An A-line, lightweight skirt with an apron, never pants or shorts, her reed hook, and scissors in little pouches sewn into the apron.  A fashion statement?  She loved her job, a hard job but she loved it just the same.  Her job was where many friends who called her Mary were…and my father, Ernest, was there too.

The disease robbed her.  She was forced to go on disability shortly after I began my brief career working summers in the same weave room.  I had one summer with her.  It was almost as if my father, her loom fixer, was cheating on her as he fixed looms for another weaver.

I never gave my father enough credit for what he did while he was alive.  I didn’t understand how much he loved her.  He was attentive to a fault…there were fights…but he was there, by her side, doing what he needed to do.  I remember some nights when she was in the hospital he played solitare, tears in his eyes.

Playing solitare when he should have been resting for the six A. M. shift the next morning. It must have been painful watching his beautiful wife waste away.  Once she was in the hospital in far Columbia, he worked Monday thru Saturday, sometimes extra shifts before going to Columbia, every weekend, before starting over again on Monday.

She was chosen for a medical study.  I’m not sure they found out much.  Too much iron in her spinal fluid but there is still no cure.  I don’t know what we would have done had she not been accepted.  I know she wouldn’t have lived as long as she did without it.

Most weekends we traveled the seventy-seven miles to the State Hospital, first on Bull Street, later a closer new building just off I-26.  I remember the visits as painful.  I now realize how selfish I was, how I wished I could have been anywhere else, now wishing I could have a do over.

She took up painting when she became disabled, something to while away the hours.  I don’t know if she was good or not, I thought she was a Rembrandt.  The disease didn’t take that from her until the end.  Normally a disease that attacks men, ALS usually begins in the hands and arms.  Hers began in her legs and progressed upward.  Gradually it affected her breathing but never got to her hands.  Atypical…except her death.

The disease robbed her…and her children.  She never had the opportunity to see her grandchild or see her eldest son finally get “it” right.  Her youngest son got it right, to begin with.  She would be proud of the man he grew into and I’m sorry his memories are different than mine.

She would have been sixty-six when Ashley, my daughter, was born and would have loved Ashley and Linda and they would have loved her.  She would have been ninety-seven when Miller Kate was born.  Not impossible…not possible.

Yes, it is ALS Awareness Month.  It is easy to be aware when famous people are diagnosed or fall to the disease.  The famous like Lou Gehrig, Stephen Hawking, Dwight Clark, Sam Sheppard, and Jim Hunter come to mind.  They were robbed too.  Their families were robbed.  It is impossible for their families to think of them without thinking of being robbed by ALS.  I know this for a fact.

I had five years to prepare myself for her death, but I wasn’t prepared.  I refused to think about it, refused to believe it right up until I awoke just after midnight on the second of January.  I remember looking at the clock just before the phone rang.  I have successfully purged the time from my memory.

I wish I could remember my mother’s laugh.

The image is of Mary Eldora Miller at the beach in the late 1950s before the ravages of ALS…still she doesn’t smile.

 

Addendum

It turns out my Mother did smile…a picture from my brother.

Mom 2

Don Miller’s author’s page may be found at  https://www.amazon.com/Don-Miller/e/B018IT38GM?fbclid=IwAR0FpZWCw_9me-FJa090w819hiX7LbcAUATfvvwRGENNYrUw_sol75s7tj4.

Proceeds from any book purchased or downloaded during May will be matched and donated to the National ALS Association to help support their research efforts.

6 thoughts on “ALS Awareness Month

  1. Your writing always puts me right in the place where you are. What sweet memories of your mom, but with such a cruel ending. There are so many dastardly diseases with no cure! I lost my dad to pancreatic cancer when he was 54 years old. You inspire me to try writing my memories for Joshua who was a week shy of 2 when he died. Thank you.

    Liked by 2 people

  2. What a touching story! No matter how or why or at what age our parents die, we are never ready. But it is something we must all go through if we live long enough. Beautiful remembrance of your mother.

    Liked by 2 people

  3. You brought me to tears, Don. Thanks for sharing your story of those final years with your mother ❤
    Our lives are rarely smooth sailing. Even those who seem to have it all can flounder with insecurities and the need to be loved and admired by all.

    Like

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