Multiple Sclerosis, an Enigma

By Terry Crawford Palardy

The true story of a middle-aged woman being unexpectedly diagnosed with a young person's disease: multiple sclerosis. The journey to diagnosis and the reality of the treatment brought a premature end to her career as a public school teacher. Life in "the sandwich generation" of adults caring for both their elder parents and their children, while balancing full time employment, is discussed with gentle empathy. The difficult economics and the changes in family responsibilities are also a part of this story. The consistent, caring support of family and friends and a mutual respect between patient and doctors is essential in living with a chronic condition such as Multiple Sclerosis.

• Language: English
• Publisher: Terry Crawford Palardy
• Release date: Apr 16, 2012
• ISBN: 9781476494913

Terry Crawford Palardy

Retired public school teacher, 30 years, Andover MAPast Columnist, Phi Kappa Phi Forum 2000 - 2006Current Sole Proprietor, Terry's Thoughts and Threads, Quilters' Quarters

Book preview

Multiple Sclerosis,

an Enigma

Terry Crawford Palardy

Smashwords Edition

Copyright © 2012 Terry Crawford Palardy

All rights reserved.

ISBN: 1466461446

ISBN: 13: 978-1466461444

DEDICATION

To the patients who have patience,

and their caretakers who support them through

the difficult diagnostic procedures,

and the doctors and therapists

who understand and work

with compassion

CONTENTS

Acknowledgments

Prologue

Chapter 1 Back in the Day

Chapter 2 City Mouse Country Mouse

Chapter 3 Happy Healthy Together

Chapter 4 Role Reversals

Chapter 5 A Different Focus

Chapter 6 Life Resumed

Chapter 7 Diagnosis Begins

Chapter 8 Good News and Bad

Chapter 9 Hospital, Round One

Chapter 10 Hospital, Round Two

Chapter 11 It Is What It Is

Chapter 12 Injections 101: The Basics

Chapter 13 Working Without a Net

Chapter 14 Finding Myself

Chapter 15 Helpers?

Chapter 16 Still Searching

Chapter 17 Two New Doctors

Chapter 18 Realizations

Chapter 19 Endings and New Discoveries

Chapter 20 Going Natural

Author’s Page

Biography

End Notes

Staying in Touch

ACKNOWLEDGMENTS

My husband, Rick, provided essential physical, emotional and financial support, first to his dad, and later to his mother and to my own parents, all of whom had catastrophic illnesses requiring our help with their health care, their home maintenance, their medical appointments and companionship.

When they had all gone to their rest,

he continued his caretaking, with me.

I could not have come this far,

nor written this book,

without his love and support.

For better, for worse,

for richer, for poorer,

In sickness and in health…

With love forever…

Prologue

I shall be telling this with a sigh

Somewhere ages and ages hence:

Two roads diverged in a wood, and I…

~Robert Frost

I had to pull over; I had to stop driving until I could stop shaking and stop crying. I was driving alongside an old wrought iron fence, and when I came to an opening and a paved drive I pulled in and found I'd entered a cemetery. I pulled over to the side of the drive and found myself in front of a family tombstone, labeled with a familiar name, a coincidence, but a reassuring one. I let the tears flow freely then, knowing I had been gently led to a safe spot, a name that I trusted, that I would always expect to be trusted by, the name of an honest man whom I had worked with, and I stayed there until I was calm. I said a quiet prayer of thanks to the Blessed Mother for leading me to this place. The shaking gradually lessened and eventually stopped. My breathing evened out, and I wiped my wet cheeks with my sleeve. I don't know how long I sat there, but I knew where I was, I knew what had been said, and I knew what I had to choose.

I put the truck in gear and pulled back out onto the roadway. It was dark, and rainy, and I drove slowly on the winding wet pavement. I sorted out what I had heard, what I had felt, and how I would explain it to Rick when I got home. He'll be surprised by what I'd decided while sitting there, as it was not what I had told him earlier that day. But he would agree, as he always did. He, too, would always trust me to make the right choices. I felt a huge weight settle onto my shoulders, and I let out a big sigh. When I pulled into our driveway half an hour later, the lights automatically came on, and Rick came out to meet me, as he always did. He opened his arms and hugged me, and I began to cry again. He walked me into the house, led me to the couch, turned off the television, and bent down in front of me.

Tell me when you are ready. It's okay. It will be alright. I'll get you a glass of water, he said slowly, calmly as he handed me some tissues. Another big sigh escaped, and with it the tremors returned, and his arm came around my shoulders, his strength steadied me. I told him I would tell him later, after I had taken a warm shower. He said that would be fine. I went upstairs and heard him turn the television back on.

Upstairs, I turned on the tap, letting the hot water climb to the second floor bath while I pulled out towels, soap and shampoo before changing into a terry cloth robe and slippers. Adjusting the water temperature carefully to warm but not too warm, I stepped into the shower and let the water beat into my upper back… and felt the tension begin to lessen. My worry and sadness slowly began to turn to anger and resentment. I struggled to shampoo my long hair with arms that ached when lifted over my head. In the building steam of the shower my legs began to wobble and I knew I would have to rinse and step out of the shower and go into the cooler bedroom to towel off. I stumbled slightly as my vision blurred, not from tears now but from the heat of the shower. Once such a comfort, now such a challenge; I counted off another small loss in my life.

Chapter 1

Back in the Day

Olly Olly in free! Olly Olly in free!

I crouched lower in my hiding space, tucked behind the loose gutter pipe on a neighbor's house. They were going to have to find me, or give up and go inside without me. Then I would slip out and keep my hiding space a secret from them. I was small enough to fit there, and no one had found me yet this week.

Game over. Street lights are on. Everybody, come on, Olly Olly in free… They continued calling out as they ran up and down the street, each heading to their own home. Someone scuffled past my space but they didn't stop to look. When the street was quiet I pushed the pipe away and snuck out from behind it. It creaked a bit, and I snagged my hand on a bent piece of the tin. Just a little blood… I wiped it off on my dungarees where it wouldn't show, and ran up the street.

Racing to the back door, I snuck into the hallway quietly, and then carefully opened the kitchen door. My brother saw me and started to tell my mother that I was home. She turned from the stove and said About time. Go wash your hands and face – you are a sight. And I was. My sweaty hands collected every bit of sooty dirt that covered the pipes and walls of the city houses. And the sweat on my forehead and neck was often darkened by my dirty hands as I tried to brush it away.

I went into the small bathroom, picked up a damp facecloth from the curved side of the claw foot tub, and sat on the toilet seat and began to wipe the grime from my face and hands. I put the damp and now blackened facecloth back on the side of the tub and reached for the towel beside the sink, wiping even more vigorously to get as much of the dirt off as I could. I went back out to the kitchen.

I didn't hear any water running, my mother said without turning around, and I huffed and went back into the bathroom. Turning the sink faucet on, cooling my hands under the water, I looked at the scrape on my palm. And I don't want to find a dirty face cloth in there… rinse it out clean after you use it. Giving in, I took the facecloth off the rim of the tub, soaked it, grabbed the bar of soap, and began to wash the cloth. The soap stung my hand, and the tears came quickly to my eyes. Finding a clean spot on the towel, I held it over the scrape.

Hurry up, supper is ready, I heard through the closed door. I opened it, and slid into my seat on the red vinyl couch at the side of the table. With five kids, two toddlers, and two babies, seats were always assigned and only changed when company came. My parents and the three oldest had the chairs, sturdy straight-backed maple and heavy to lift into and away from the table; my brother and I and our two younger sisters shared the couch, sometimes sitting and sometimes kneeling on the edge, and the babies had high chairs or sat on someone's lap. It was a large kitchen, with a gray Formica table and steel bar legs that curled under the top. A butler's drawer slid out of each side, and the table ware was stored there, often accompanied by stray vegetables or breadcrumbs that found their way in while we ate.

There was a Melmac cup at each plate setting, green, orange, yellow or brown, but the milk was not poured until the vegetables and meat were eaten. And at most meals, there were cookies or puddings or special left over sweets from my mother's club ladies' tea… Whoever was bringing treats that week had brought a lot of extras, and so the vegetables and meat went down quickly.

My brother saw the remnants of tears streaking my still dirty face, and asked, Why are you crying now? You are always crying! and my mother looked in our direction. He stopped asking, and I stopped sniffling, and we both continued eating. I chewed and chewed and chewed on the piece of meat, but it wouldn't go down, and I coughed to sneak it into my hand and then tucked it under the rim of my yellow Melmac plate. I did that twice more, and finally was able to get the fourth piece down, swallowing hard. My mother was a good cook, but she always overcooked meat, being ahead of her time in that way.

Mum raised nine kids, in a crowded first floor apartment with one small bathroom, a wringer washing machine, a huge white enamel kitchen sink that had a deep laundry tub on one side to bathe babies and toddlers and at other times hold a full load of rinse water to be pumped back into the machine for the next load's wash water. She had a gas stove, a metal cabinet beside the sink for pots, two wooden cabinets over the sink for every day dishes, and two more wooden cabinets on the other side of the kitchen for the good dishes and glassware. The linoleum was worn thin in front of the sink and the black tar paper liner showed through. She spent much of her day there, doing the laundry, and then taking it outside on a good day to hang it to dry in the back yard, or on a rainy day hanging it on the strings that ran across the large kitchen. On those winter days the heat of the kerosene water heater that stood next to the stove would help the towels to dry, but they would be rough and hard until washed again and hung outside in the breeze. There was no fabric softener then, just Tide detergent for most of the laundry, and Ivory Flakes or Ivory Snow for the babies' diapers. Spic and Span was used for the floors, and glass wax, vinegar and newspaper for the windows. She was a good housekeeper, despite the size of her family, and she delegated chores every weekend.

Dad always helped Mum in solving discipline issues or taking us all out of her hair for a morning at Nantasket Beach in Hull, or loading us all into the family car for mystery rides. His schedule as a firefighter gave him odd days off, and in the summer it was always an adventure when he