Mama’s house is gone
Fragments remain as part of
That once vital family
I am one of those fragments
My name is Mary
I have a story to tell
Dirt road, uninsulated house, outhouse, wood stoves- one for heating, the other for cooking, water from a pump nearby.
The outdoors was my world.
6 kids. 4 had seizures. I was one of the 4. I had grand mal seizures. I can’t speak for the other 3- they are dead.
I was 8 when my sister Catherine, 13, died suddenly. That was the year my seizures started.
10 years later, I was a freshman at the University of Vermont. That year my only brother Richard died suddenly at the age of 26. 2 years later, my sister Elisabeth passed away. I had a cigarette for her outside the funeral home. I figured I was the next one to go. I increased my drinking.
Institutions….10 or 11 years either for alcohol or depression.
I met my future husband in a bar. We smoked pot together.
I found religion. That helped for a while. I felt called into the Salvation Army.
My pot smoking friend figured if we married that would bring him the religion I found.
He found his own way. We married and were in the Salvation Army for a year.
During that time, our first child Elizabeth was born. I saw her little feet first. I fell in love. The year was 1976. I think within a week, I had a seizure. My timing after this is a bit confusing. When I look back, I had what I call heart spells. I was 31 years old and felt like an old woman.
We had company one day and I had another episode. At this point, I asked my husband to bring me to the ER. They checked my vitals and said I could go home. I refused. I knew something was wrong. I was admitted under psychiatric surveillance and was on a regular medical floor.
Within 24 hours, I was experiencing something with my heart. I grabbed a nurse’s hand and the doctor on call heard about a hysterical woman.
They slapped an EKG on me and I was off the charts. I was on a gurney heading for cardiac. I knew I was dying and was glad someone else knew.
In the cardiac unit, Dr. Dennis DeSilvey was in charge. He knew immediately from the EKG reading that I had LQTS.
They had to defibrillate me a number of times.
They tried me on beta blockers. That didn’t work because of my low blood pressure. I was on Dilantin and perhaps phenobarbital for my seizure activities. No idea what DeSilvey put me on before I was sent to Burlington, Vermont to have what they called back then a left stellate ganglionectomy.
I had a couple of friends that worked in the hospital. Apparently, the surgeons were operating from a manual. There were some complications so what was supposed to be a relatively short surgery turned into 9 hours.
Somehow I gave up during that surgery and my two friends took turns holding my hand during recovery. Those gals helped saved me.
So thanks to Dr. Arthur Moss and perhaps a Dalmatian dog, the surgery was successful.
After recovery, I went home and went to Rutland hospital. I was on so much medication. DeSilvey had to find one that worked for me. Guinea pig, hooked to the wall. No portable units back then. Primidone. It shortened my QT. Miracle.
Written up in a medical journal. Home to my family. Scared. Anything happening with my heart sent me back to the cardiac unit. So many times. One trip the nurse threw the leads at me and told to hook myself up. Visits to the psych unit. I picked up drinking again but could only drink for one night. My primidone prevented that. I drank on and off for 10 more years.
Four years after my surgery, our daughter Katherine was born. The year was 1980. My brother’s daughter Laurie died suddenly of LQTS. It seemed like this thing would never go away.
I was so messed up. Finally my family was gone. I was in an institution. When I came home 5 weeks later, I was a single woman with no family. I lived here and there, trying to get my life back. It came slowly.
A job for 3 years at a turn of the century sweat shop. That job created some stability in my life. I would fly out to see my kids. I called it a weekend extravaganza. I would leave on a Friday and come back on a Sunday.
Sobriety in 1987. It lasted. Jobs here and there. Vocational rehabilitation. My own small business- The Traveling Computer Tutor. Other jobs to make up the difference. A 4 year degree 30 years in the making. Magna Cum Laude.
After the internet became available to the general public, I decided to write my own homepage based on my LQTS but showing that my life could be fairly normal.
Fast forward to the present day. I am 73 years old. What can a 73 year old do in spite of LQTS?
Play Pokemon. Take walks. Laugh with my friends. Do genealogy. Go bird watching. Drive my car. I can even do my dishes. My 87 year old neighbor likes to do my dishes, so I let her.
My LQTS doesn’t define me. My alcoholism doesn’t define me.
I am a total human being. I live in hope. I have become a positive person.