The Mystery Behind Keeping the Home Fires Burning

Rick Jobus avatar

by Rick Jobus |

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“You shoot me glances and they’re so hard to read,

I misconstrue what you mean. …

Are you just playing, making passes?

Well, my heart could use some glasses. …

Do I read you correctly, I need you directly,

Help me with this part,

Do I love you? Do I hate you?

I got a dyslexic heart.”

Nearly every couple I know well experiences at one time or another the relationship fuzziness that Paul Westerberg describes in the song “Dyslexic Heart.” That many pairings survive such traumatic interludes intact — and in some cases become stronger — is laudable. 

Last week, I watched season one of Modern Love. Derived from a long-running weekly column of the same name in The New York Times, “Modern Love” depicts relationships, warts and all. Battered feelings, misguided overtures, imprudent decisions, feared betrayals, and revelations are on full display. Each episode of the series contains a subplot handicapping the eventuality of an enduring, blissful connection from the outset.

As the first season drew to a close, I found myself curiously unsatisfied. Although it was well crafted and thought-provoking, not a single episode fully spoke to me. None of the stories had a challenge comparable to a union in which one of the partners has ALS.

The seismic upheaval that ALS brings to bear can rock a relationship to its core. Foundational elements such as commitment, passion, trust, intimacy, romance, tolerance, desire, and fidelity are put to the test.

Should any of those building blocks buckle, others may follow like dominoes. Forestalling complete collapse demands a blend of grit, determination, passivity, compromise, stubbornness, bluntness, tact, ambition, resignation, minor celebration, major grief, divine intervention, and copious amounts of blood, sweat, and tears. 

The ALS Association notes that, “The physical and financial changes brought about by ALS impacts the familiar roles that families and couples have come to know. For family members, expanding the scope of responsibilities may yield frustration, and spouses whose shared dreams require adjustment may become resentful. The individual receiving the diagnosis might experience all the above emotions and be angry that they are faced with challenges associated with a progressive loss of motor control.”

I think they are sugarcoating reality. Fragility is pervasive in relationships. Whatever inherent brittleness nominally exists, ALS only serves to exacerbate it mightily. The wonder is not that our partnerships fracture here and there. Rather, under the specter of ALS, the surprise is that they don’t crumble into tiny shards altogether. Amid frequent ALS-induced flash flooding, fortifying the relationship “bridge over troubled waters” is imperative.

The patient-led community I Am ALS points out the drastic, necessity-driven change in roles ALS forces upon couples. In response to this ever-changing dynamic, the group stresses the importance of fostering the joyful aspects of a relationship. I Am ALS also suggests focusing on kinship, safety, and comfort as elements of obvious mutual benefit and satisfaction.

ALS News Today’s Kristin Neva and Dagmar Munn periodically share — from a caregiver and care recipient perspective, respectively — how their marriages have successfully evolved in the face of entropic change. One common denominator is adaptation. In response to the daunting challenges that ALS imposes — much like a great white shark — relationships must move, or they will perish.

Unfortunately, for my wife and me, many of the nuanced “ties that bind” have evaporated. The nocturnal comfort of a spontaneous touch, caress, or hug long ago ceased to be a possibility. The onerous labor involved in transferring me makes most shared, simple pleasures an endangered species. Given the erosion of my verbal skills, silly banter, interactive problem-solving, and reciprocated terms of endearment are a thing of the past.

Our reaction to the incessant intrusion of ALS has often been inglorious. For different reasons, we are both prone to bitter and resentful outbursts about the constant presence of ALS. Rueful anger about a gutted future can erupt with little provocation. We have hurled hateful comments toward each other. Thankfully, we’ve adapted. 

Fundamentally, we’ve come to realize that to be harmonious together means being apart more. My wife needs an escape from ALS, and I need refuge from the anguish over the burden the disease is foisting upon her. She independently pursues outside interests, which I can choose to vicariously experience. 

Consciously, we’ve reduced our area of intersection. However, in so doing, we lopped off the most acrimonious chunk. It’s taken an accumulation of scars and calluses, but now the hope that she will find something as fulfilling as me outweighs the fear that she will.

Some would credit love for our survival. I attribute it to a more mysterious force. In the absence of exact science, early chemical theory hypothesized that the origin of fire involved the liberation of a substance dubbed phlogiston. Obviously, they had that wrong. Everyone knows phlogiston keeps the embers of a threatened relationship aglow.

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Note: ALS News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of ALS News Today or its parent company, BioNews, and are intended to spark discussion about issues pertaining to ALS.

Comments

Jan avatar

Jan

Thank you for sharing this very personal story. I am the patient, my husband of 40 years the caregiver. I have fear that as I deteriorate, we will experience the resentment and frustration that you describe.

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Rick Jobus avatar

Rick Jobus

Jan, if you do, know there is a way to move past those toxic emotions. My wife and I have.

Kristin Neva avatar

Kristin Neva

Beautiful article--and it makes me sad. We've also lost the comfort of spontaneous touch but it is hard to know that the loss of the silly banter is likely ahead. One of the joys we still have for now.

Reply
Bob Ives avatar

Bob Ives

Rick, Wonderful post! Most folks in the ALS community are painfully aware of the physical toll the disease extracts, And those acutely involved know of the emotional aspects and of the physical and emotional burdens it places on the immediate family. Your post clearly focuses on the more salient aspects of pALS and their relationships with their spouse. The difficulty or lack of "the spontaneous touch, caress or hug" and "the erosion of my verbal skills, silly banter, interactive problem-solving, and reciprocated terms of endearment" have created a major void in our 36 year marriage. We are dealing with it as effectively as possible., but it is an aspect of this dreadful disease that few outsiders recognize. Probably a good thing! Again, terrific post ... keep 'em coming!

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Rick Jobus avatar

Rick Jobus

Thank you Bob.I pray for that void to be, at least, half full.

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