Progressive Disorder: A Memoir of Loss, Response-Ability and Redemption

By Tom Holmes

In 1997, Tom Holmes was diagnosed with a neurological disorder called primary lateral sclerosis (PLS). As he struggled to adapt to that disability, he realized that he had experienced several other losses during what were then the middle years of his life, and it dawned on him that gradually he began to view those losses not only as tragedies, as "bad things that happen to good people," but also as profound opportunities to grow up in the way he relates to the world as it is, to the people in his life and to God. He uses the term response-ability for the art of using losses as opportunities for maturing in faith.

• Language: English
• Publisher: Covenant Books, Inc.
• Release date: Dec 6, 2023
• ISBN: 9798888516041

Book preview

Table of Contents

Title

Copyright

Introduction

Annie

Chapter 1: Answered Prayer

Chapter 2: My Father's Premature Death

Chapter 3: Whitewater Canoeing with Annie

Chapter 4: Phone Call on Valentine's Day

Chapter 5: Hitting Bottom, Dissing Illusions, and Necessary Losses

Chapter 6: Response-Ability and Two Masters

Chapter 7: Response-Ability and Metanoia

Chapter 8: Men's Group

Bernie

Chapter 9: Holden Village

Chapter 10: Marriage Counseling

Chapter 11: I Know How to Do This

Chapter 12: Therapy by People Who Don't Know What They Are Doing

Chapter 13: Men's Group and Personal Reorientation

Chapter 14: It's Your Decision

Chapter 15: Support in My Men's Group

Progressive Disorder, Primary Lateral Sclerosis

Chapter 16: Diagnosis

Chapter 17: The Portage

Chapter 18: My First Canoe Trip in the Boundary Waters

Chapter 19: Teepu Siddique

Chapter 20: My Cane and Obstreperosity

Chapter 21: Just One of the Boys

Chapter 22: I've Been Healed

Chapter 23: Men's Group—Mortality and Denial

Chapter 24: Mortality and Healthy Depression

Chapter 25: The Divine Art of Dying

Chapter 26: What Happens after Death?

Chapter 27: Life Closes One Door and God…

Dorothy

Chapter 28: Dorothy's Accident

Chapter 29: Funeral Planning

Chapter 30: Laurel Grove

Chapter 31: Ben's Reaction

Chapter 32: Nana's Death and Funeral

Chapter 33: Sunday at Chaco Canyon

Chapter 34: My Mother's Gift—Loneliness, Solitude, and Grace

St. Paul's

Chapter 35: Learning Response-Ability from a Cloud of Witnesses

Chapter 36: Marv and Kathe

Chapter 37: Just as I Am

Chapter 38: Joanne

Chapter 39: Arnold and Another Joanne

Chapter 40: Doctor of Ministry Program

Chapter 41: Christine

Chapter 42: St. Paul's and Anticipatory Grief

Chapter 43: Death of St. Paul's and a Church Fight

Chapter 44: The End of Christendom

Chapter 45: Redemption—St. Paul Thai Lutheran Church

Redemption

Chapter 46: Loss, Response-Ability, and Redemption

Chapter 47: Getting on Board the Love Train

Chapter 48: Progressive Disorder

Concluding Unscientific Postscript

Chapter 49: Detours

Chapter 50: Wounded Healers

Chapter 51: The Sin of Certainty

Chapter 52: Learning to Walk in the Dark

Chapter 53: Love

Chapter 54: Response-Ability

Reading List

About the Author

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Progressive Disorder

A Memoir of Loss, Response-Ability and Redemption

Tom Holmes

ISBN 979-8-88851-603-4 (Paperback)

ISBN 979-8-88851-604-1 (Digital)

Copyright © 2023 Tom Holmes

All rights reserved

First Edition

All rights reserved. No part of this publication may be reproduced, distributed, or transmitted in any form or by any means, including photocopying, recording, or other electronic or mechanical methods without the prior written permission of the publisher. For permission requests, solicit the publisher via the address below.

Covenant Books

11661 Hwy 707

Murrells Inlet, SC 29576

www.covenantbooks.com

Introduction

Iwas diagnosed in 1997 as having what they call a progressive disorder, primary lateral sclerosis.

I chose that medical term as the title of this memoir because I wanted to share with as many people as I can a testimony about how what seems like an oxymoron—progressive disorder—was reframed with the aid of a cloud of witnesses into a paradox which plumbs deep realities which reason cannot grasp. The experience of the losses in my life gradually came to feel less tragic, even though some were, and became opportunities to grow up in the ways I relate to the world as it is, to the people around me, and to God.

In the pages that follow, readers won't find a and they lived happily ever after story unless they look beyond the veil of death and believe in eternal life. No, this is a narrative of redemption only in the sense that through grace and hard work, I gradually learned the art of response-ability, a way of leaning into life which Richard Rohr called falling upward.

Neither will you find any groundbreaking new concepts that will transform your thinking about loss. What you will find, I believe, are good stories which will encourage you to keep at the work of using your losses as a doorway to maturity.

Annie

Chapter 1

Answered Prayer

And even though we ain't got money

I'm so in love with you honey

And everything will bring a chain of love

And in the mornin' when I rise

You bring a tear of joy to my eyes

And tell me everything's gonna be all right

—Kenny Loggins

I pulled the mail out of my PO box at St. Olaf and saw a letter from Annie. My heart started pounding. The student center was no place to open what might be a gift from God, a possible answer to a three-year-long prayer. I got to my room in the tower dorm, took a deep breath, and opened the envelope. She had decided to leave the convent a year and a half into a two-year novitiate. We had met three years earlier at a guitar mass. I had just finished my freshman year at St. Olaf College where I was registered as pre-seminary. A friend of mine was playing bass for the guitar mass at St. Paul's Catholic Church back home in Manitowoc and invited me to check it out. The words contemporary and ecumenical were in the spiritual air we young Catholics and Lutherans were breathing in those days.

Right away I liked her. She was everything I was not. According to the Myers-Briggs personality type indicator, I was, among other things, an introvert and a thinker. She was an extrovert and a feeler. She made friends easily and showed her feelings readily. I was shy, awkward, and in my head a lot.

What made it easy for me to get close to her was that she was preparing to be a nun, so although she was physically attractive, my superego wouldn't let me think of her romantically. My hormones didn't get in the way.

So what I did for the next three years—and I did it frequently—was to pray, "Lord, send me someone like Annie." And the letter I was holding in my hand was much more than I had ever hoped for. I didn't get someone like Annie. I got Annie herself.

Answered prayer after unanswered prayer. You see, two months after receiving the letter from Annie, my father died at the age of fifty because of a botched surgery.

The effect, the temporary effect, was that this answered prayer made me stop wrestling with why God hadn't come through regarding my dad.

Neither one of us knew how to handle our first face-to-face encounter the morning after I arrived in Manitowoc on Christmas vacation, two and a half weeks before my father's surgery. We didn't kiss. We didn't hug. We did a lot of smiling as we fumbled around awkwardly for what to say.

This was unexplored territory for both of us. She had been in the convent as an aspirant, postulant, and novice since she was thirteen. I had been on dates with maybe ten girls by the time I had reached the ripe old age of twenty-two but had only kissed three of them. I had not done a good job of being an adolescent, and never had by trial and error figured out how to resolve the tension between my raging hormones and by rigid superego. When I erred, it was almost always on the side of should rather than want.

But now I was falling in love, and my inhibitions suddenly lost control over my behavior. I did wild things like write love poems, hold hands in public, and stay up till one in the morning to watch the submarine races down by Lake Michigan. We even had police officers shine their flashlights into our car several times. Once, after being parked for two hours behind the university extension, the old Pontiac wouldn't start, so we walked the quarter mile to a tavern and called a cab. The car started right up the next morning.

We got engaged a year later. We were again parked by Lake Michigan. After a lengthy discussion about whether now was the right time, we decided the answer was yes. I didn't get on my knees, and there was no diamond. We later bought sterling silver rings engraved with the word love.

We were, after all, children of the sixties. Being real was where it was at. The conformity of the fifties was out. Authenticity was in. Making homemade wedding invitations became a family event. The rehearsal dinner menu consisted of three buckets of Kentucky Fried Chicken which we ate around a fire at Point Beach State Forest. For fun, we tried to throw frisbees into a garbage can, made s'mores with toasted marshmallows, and of course sang folk songs.

Annie couldn't see spending a lot of money on or being comfortable in a fancy bridal gown, so she bought a pink and tan bridesmaid dress instead. Her uncle from Green Bay was the photographer. Because Bud was on crutches—he had polio as a child—he couldn't always get the camera level, so half the photos were tilted. But that was okay because we were keeping it simple, and it was real.

And on top of that, it was ecumenical. In 1972, that word had recently entered our vocabularies, and most of our friends thought that having an ecumenical wedding was very cool. We really were changing the world.

We were, however, also children of the fifties and therefore wanted the approval of our parents, a challenging goal. Annie had disappointed her parents by leaving the convent, their second child to leave religious life. Only Mary, the oldest, was still a nun. And the thought of the daughter of Walter and Jane Jagodensky, who regularly prayed the rosary at home with the family, marrying a Lutheran was a stretch.

My mother didn't object so much to me marrying a Catholic. After all, she had been a Baptist her whole life until she married my father. What irritated her was just about everything over which she had little control. My father had died just died sixteen months before the wedding, and she was emotionally raw. What's more, Annie's spontaneity and her mother's lack of dependability drove my mother—who prized control over almost everything else—crazy.

I'm not sure what won them all over. Maybe it was that I was often willing to go with Annie's family to Mass and really seem to be praying while I was there. That I was not a long-haired, pot-smoking hippy helped my cause, I'm sure. And although Annie's impulsivity irritated my mother, my mom couldn't help but notice that Annie was genuinely trying to please her. The Mass would be held at St. Paul's Catholic Church which made Annie's parents feel better, and Pastor Vinger from First Lutheran would be leading worship along with Father Dion, which pleased my mother.

The wedding reception was held at my mother's house, with one case of beer and twelve bottles of cold duck and sandwiches, and a cake by a Manitowoc caterer my mother knew.

Three hours later, we were on our way to an inexpensive cottage near Algoma for the first three nights of our honeymoon and then three days of camping at Potawatomi State Park in Door County. We were both virgins in many ways. But that didn't matter because we believed deeply that we had found our soul mates and that love—God's and ours—would sustain us on this lifelong adventure. We prayed together that night before going to bed.

Answered prayer after unanswered prayer. The effect, the temporary effect, was that this answered prayer made me stop wrestling with why God hadn't come through regarding my dad.

Chapter 2

My Father's Premature Death

Fairness is not an issue. Reality is what we have to deal with.

—M. A. F.

My father was scheduled for surgery to remove a stomach ulcer a few days after I was to return to St. Olaf for the winter interim, but he didn't see any point in making me stay at home.

Everything will be fine.

Since getting back to Manitowoc from flying fifty missions in a B-26 bomber in the Korean War, his life had gone pretty well. He and my mom had built a house in what then was a new subdivision in town. He was making a decent living, was the head of the Sunday school at church, and was liked by lots of people. He and my mom were middle-class Americans, Eisenhower was president, and their son was going to have an even better life than theirs. Everything did seem to be fine.

Back at St. Olaf, I got engrossed in an independent study of the philosophy of language. When I did find myself worrying about my dad a little, I reminded myself that everything would be fine.

About five days later, I received a call from my mom on the pay phone down the hall in my dorm. Father isn't doing very well, she said. The surgery didn't go well. He's still in the hospital, and we need you to come home to help take care of him.

Is he going to die? was the question that crept into my mind, but I didn't ask it aloud. I wondered if she was thinking the same thing. Her mother, after all, had died when my