An Affair Worth Remembering With Huntington’s Disease: Incurable Love & Intimacy During an Incurable Illness

By Debbie Pausig

Huntington's Disease is a progressive, life stripping, hereditary disease with no cure. This ebook illustrates how a marriage and a family can live,survive and thrive with an incurable illness. Humor, frustration, and sadness are experienced by the reader. True Love prevails as this disease bruises and batters a family's spirit. This book is written for those affected by Huntington's Disease or any chronic, progressive or terminal illness;for those who find strength through faith in the most trying moments;for therapists and their educators who train & treat individuals, couples and families affected by illness;to increase awareness for medical professionals and researchers who treat the person with HD, their families, are working to find a cure and to understand the devastation HD has on a family;and,for caregivers or other family members that are enduring the trials and tribulations of a chronic, progressive or terminal illness whether short or long lived.

• Language: English
• Publisher: Lulu Publishing Services
• Release date: Jan 22, 2016
• ISBN: 9781483443973

Book preview

years.

An AffaiЯ

Worth Remembering

With Huntington’s Disease

Incurable Love & Intimacy During an Incurable Illness

Debbie Pausig

Copyright © 2016 Debbie Pausig.

All rights reserved. No part of this book may be reproduced, stored, or transmitted by any means—whether auditory, graphic, mechanical, or electronic—without written permission of both publisher and author, except in the case of brief excerpts used in critical articles and reviews. Unauthorized reproduction of any part of this work is illegal and is punishable by law.

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debbiepausigmft.com

ISBN: 978-1-4834-4397-3 (e)

Because of the dynamic nature of the Internet, any web addresses or links contained in this book may have changed since publication and may no longer be valid. The views expressed in this work are solely those of the author and do not necessarily reflect the views of the publisher, and the publisher hereby disclaims any responsibility for them.

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Lulu Publishing Services rev. date: 1/21/2016

Contents

Introduction

Dedications

Notes:

Answering the Questions: Why, Who and What?

1. That Someone

He Was That Someone

2. The Third Party

The Wedge

Meeting HD

3. He, We and HD

He + Me = We

We + HD

What About the Big V at Age 20?

Plan B For Baby

4. The Success in Failure

A Second AffaiR

The Next Door Opens

Trusting The Process And Our Faith

Testing Our Faith In The Process

8,730 Miles To Home

Joy To Our World!

Traveling Memories

The Calm Before The Storm

5. The Long-Rocky Road

Driving Me Crazee

Guardians In Blue, Watch Over Thee

2001 Accidental Fallout

MY Perspective: Good Times Turned BUGLY

A Time When Security Was Already Shaken

Action Mode For Me

Was I Hearing Things?

In-Home Help Hurts And Hurdles

Where & How To Find An In-Home Caregiver

When Help Has To Leave

When Hired Help Doesn’t Arrive

When The SH*T Hits The Fan

When Your Children Step Up To The Plate

2003 Anniversary Party

When The Caregiver Crashes & Burns

Caregiver, Patient or Both?

Goodbye PD, Hello ….

2005 Team Hope Walk

Tipping Out Of Balance

6. Voiceless, not Choice Less

A Dad Without A Voice Is Still Present

7. What About Sex?

This is NOT Fifty Shades of Gray

Intimacy At A Level Never Imagined

8. Grieving Alongside HD

Caregiver Tunnel Vision

9. Grieving During The Illness

So Many Unexpected Losses

Lonely and Displaced

10. The Power of Prayer

Malnourished

Soul Food

11. Running Out Of Time

2007, The Year Of Lasts

Fifty Was Nifty

A Last Hoorah!

Screaming, I’m Not Dreaming

Time To Prepare

Heartfelt Pain Like No Other

Forever The Captain Of His Vessel

A Son’s Birthday Forever Changed

Goodbye My Love

A Spiritual Transition

A Special Place In The Sky Called Heaven

12. I’ve Learned

Things I’ve learned during my HD journey and beyond…

13. Life After HD

Grieving Now In A Different Way

PTHDCSD

New Day Training and Bereavement Group

Another Calling

The Anniversary Ritual

Back To School

Support Is Available

It Still Hurts Nearly 8 Years Later

14. The Blame Game

Because of HD…….

15. H.D.S.A Revisited

Renewed Involvement With The HD Community

UCONN, HD & Me: Then & Now

2014 HDSA Connecticut Affiliate Education Conference

Dr. Carolyn Drazinic: Changes 15-20 Years Before…..

Jimmy Pollard: HD Disguise

Systemic Constellations, HD & Me

16. The Perfect Place to Close An Imperfect Story

Louisville, KY 2014.

What Was My IT In The Its Possible?

LOVE Beyond Words.

The Last Dance

Appendix

I. Fast Facts on Huntington’s Disease (HD)

II. The 6 Essentials to Pack for the HD Caregiver’s Journey:

Resources used for this book

About the Author

The Title

An affair: I picture a black tie event where Sean Connery, as James Bond, exits his Aston Martin wearing one of his delicious tuxedos. Not so today, the media and society have us programmed to think and picture otherwise. The simple word affair brings to mind connotations and the sensationalism of illicit sex. And then come the questions, so many questions. Who is the affair with? Is it the other woman, the other man, the job? Who is involved? What is involved?

An affair drives a wedge into a relationship creating a triangle. When was the last time you heard of an illness driving a wedge between a couple or family members? Ali McGraw’s illness in the fictional 1970 movie, Love Story, with Ryan O’Neal comes to mind. Two young, married, mid twenty somethings, deeply in love, whose lives are interrupted by a wedge named cancer. Trying to protect her, he attempted to keep her impending death a secret. She, of course, knew better. Their affair with cancer was brief. Their love however was not.

An illness, especially a progressive terminal illness, affects life, love and intimacy. An illness can take a family BEYOND normal chaos and dysfunction. The knowledge of an illness, its lack of knowledge, the illness as a family secret, the unknown history of an illness, the timing of first symptoms in one’s life cycle and a long debilitating progression, are factors that feed the fire of chaos and dysfunction. What trumps all is LOVE. I’m describing the type of love that evolves from young, feel good, sometimes hedonistic, lust and fascination, to a deep caring that spans decades. Deep caring love transcends the mind, body and soul. It is that kind of love for a person in times of turmoil and heartache that life with the illness is worth remembering. It is the kind of love that can endure experiencing the pain of change. It is the kind of love that learns to accept and include an affair with a disease and grow in the midst of it. It is the kind of love that remains after the illness has taken the life of the love, not the memory. It is the kind of love that leaves an imprint in the heart of the survivor where it is stored forever.

The affair I speak of here is an illness. This illness is Huntington’s Disease. The word AffairЯ in the title is deliberately spelled with a capital and reverse facing Я. R is for remembering. When I remember, I look back to the past, not remain in it. I am remembering that my AffairЯ with Huntington’s Disease is worth Remembering. This is a story that involves incurable love and intimacy during an incurable illness. Powerful; Yes. Was it worth the risk of heartache and monumental hard work to maintain and survive; Absolutely! There was no cure for Huntington’s Disease for us and there still is no cure. Scientific research is working on this life stripping, progressive, inherited, degenerative brain disorder. There was and is no cure for the kind of love that inspires this author and graces the pages of this book. That kind of love, my dear readers, is best left incurable.

Cover Story

You have picked up this book and more than likely have noticed the title which I have already explained. Let’s talk about the meaning behind the cover design. You probably think it is just a couple of random shapes connected in a rather sloppy manner. No my friends, it has a far deeper meaning than that. You see, LOVE is represented by the Hearts and the WEDGE is represented by the triangles. Are you following me? The illness, HD (Huntington’s Disease), is the WEDGE. The 4 Hearts represent my husband, our two children and me. The 3 triangles bearing the letters "HD" represent my husband’s 3 generational roles affected by HD: a son and brother in his family, a husband, and a father. And the shaky, loopy, uncontrollable and unpredictable string represents the journey that connected us with HD because it was all of that. As you read on you will find much more.

If HD was a soup, some of its ingredients or symptoms would include those similar to ALS (Lou Gehrig’s Disease), Alzheimer’s, Parkinson’s Disease and Schizophrenia. Oh my!

Introduction

Dedications

Perry

To my late husband Perry Pausig who was a kind, loving, gentle and selfless man. He was a husband and father; son and brother; uncle, nephew, friend and so much more. He lived life to its fullest as long as he could. He was a man who found the zest to