How Coping With Illness in Family Affected My Marriage
When The Marital Mystery Tour went to press, Alan and I had no way of anticipating the trial that lay ahead of us. This is the story of God’s faithfulness toward us through the fire of that ordeal.
That fire began in a hospital waiting room at 9:30 p.m. on September 4, 2009.
Alan and I were awaiting the results of our son Josh’s abdominal surgery. Accompanied by a hospital chaplain, colorectal surgeon Dr. Debora McClary entered and said, “This didn’t go anything as I expected.
Joshua is full of cancer.” Alan and I collapsed against each other and cried.
Then 31 years old, Josh was preparing to deploy for Iraq with his National Guard unit. But following a rear-end collision in his car, he experienced unrelenting abdominal pain.
He suspected that the impact of the airbag created a fistula, a tear in the fragile tissues between his intestines and his bowel. Plagued for years by ulcerative colitis, Josh had worked hard to overcome his digestive issues.
Fearful of hindering his ability to deploy, he had avoided seeing a doctor, but obviously, to Alan and me, he was ill — feverish and doubled over with pain.
We insisted that he get examined, and the Lord led us to the skilled and compassionate Dr. McClary. She recognized Josh’s serious condition and canceled a meeting to see him.
After the exam, I asked if we could pray. She said yes. I prayed and then looked up to see Dr. McClary kneeling before Josh with her hand on his knee.
The Lord knew we would need a strong Christian physician to walk with us through what was to come.
We discussed worst-case outcomes. Josh dreaded a possible colostomy, the removal of the most damaged portion of his colon and rerouting through an opening in his abdomen to allow his diseased gut and rectum to heal.
We never suspected that his colitis had already led to the insidious spread of a thin layer of cancer. It had avoided detection through ordinary medical exams, yet it had overtaken most of the digestive tissues below his belly button.
The dreaded colostomy bag became the least of Josh’s worries.
The details of Josh’s battle with cancer could fill volumes: how angry he was with us for waiting from 10:30 p.m. until 4 a.m. to tell him the diagnosis, not knowing he had heard the word “cancer” whispered in the recovery room.
How we learned together to change his colostomy bags and clean his stoma; how chemotherapy made him suicidal; how desperately he sought naturopathic treatments for his disease; how he tried to get by with as little pain medication as possible.
How pain would overwhelm him until he was scrunched up writhing on the floor; how he broke things in anger at his pain; how we cried; yet how he was still able to make me laugh until his last day on earth.
And how it ended at 2:20 a.m. on July 22, 2010, when the Lord lifted Josh’s spirit away from his tired, broken body and brought him home.
However, this article is about marriage, and we want to describe what the Lord has done in Alan and me through the challenges of that battle.
Our life was exceptionally chaotic at the time when Josh’s cancer appeared.
Three years earlier, hoping to get in on the ground level of marriage ministry in a young community, Alan and I had purchased a new house in a pristine planned development 40 miles west of where we had spent the prior 25 years.
Blinded by the stars in our eyes, we slid onto financially thin ice. We kept our former home as a rental but had trouble keeping it occupied. When tenants moved out, we had to cover two mortgages plus homeowners association fees.
Then our nonprofit organization, Walk & Talk, lost a major donor, and the seminary where Alan worked part-time eliminated his position.
Our new community’s growth shrank with the economy and our hopes for planting a church and growing a ministry there dissipated.
The longer commute in interstate freeway traffic driving to my job as an associate magazine editor took its toll on my health. Diagnosed with Multiple Sclerosis in 2004, I was becoming physically, mentally, and emotionally exhausted by work-related stress.
Alan drove an even-longer commute. To reduce expenses, we sold his car. He drove me to work and picked me up. Often I was too exhausted to fix dinner. Alan did more meal preparation and cleanup, and I felt guilty about letting him do it.
MS affected my cognitive abilities and short-term memory, making me error-prone at work. And my job was to correct errors, not make them!
Advised by Human Resources to seek disability benefits, I bid the magazine and my beloved coworker’s good-by in August 2008. We lost half my income and gained responsibility for 100 percent of our health insurance.
Alan tried to refinance the new house to no avail. In desperation, we listed it with a realtor specializing in short sales, truly a humbling experience.
We were relieved when the bank approved a buyer and started preparing for our move back into Phoenix, which we planned to do when our tenants’ lease expired in the fall. It was early August 2009.
In January, just eight months earlier, I had shot a photo of Josh leaning against his royal blue Honda Prelude, happy and confident. He had recently returned from a year as a government contractor in Iraq.
He had money in the bank and a zillion options for his future. His National Guard unit had been ordered to deploy while he was overseas. He had nine months to prepare to return to Iraq, saying that he needed to “get healthy.”
Churning beneath his macho exterior, Josh’s colon gave him little peace, and he tried one alternative treatment after another.
He was running late driving to a naturopathy session when the driver in front of him hit his brakes at a yellow light as Josh was gunning to run it. It was August 17, 2009.
Testing the knots
Isaiah 43:2-3a says:
When you pass through the waters, I will be with you;
And through the rivers, they will not overflow you.
When you walk through the fire, you will not be scorched,
Nor will the flame burn you.
For I am the LORD your God,
The Holy One of Israel, your Savior.
Through the months of coping with illness (Josh’s cancer) and since his death, every key principle Alan and I discussed in The Marital Mystery Tour has been tested, tried, and proven in our marriage.
Initially, the shock and horror of Josh’s illness threw Alan and me into each other’s arms.
We were caught in a maelstrom of emotions, tossed overboard from our financially sinking ship into the whitecaps of Josh’s crisis. We clung to each other for support, and we held each other’s head above water.
But it wasn’t long before Josh’s complex personality, medical needs, and emotional demands wedged between us. We were dealing and coping with the illness of our son who had quirks aplenty.
He came to the hospital prepared to face post-abdominal-surgery recovery with a little “light reading” to keep his mind occupied — Walter J. Boyne’s historical treatise Clash of Wings: World War II in the Air.
I read it aloud to him … at 2 a.m. as he counted the seconds until his next hit of morphine. Less woozy than I expected him to be, he corrected my pronunciation of German, French and Czechoslovakian names, adding his comments regarding the author’s accuracy.
He complained that the nurses’ station outside his door was too noisy. His room was too hot, too cold, too bright.
Over the next few days, I tried to keep Josh comfortable while Alan tried to protect me from overextending myself to the detriment of my health.
But I wanted to hear every word the doctors said, to welcome every visitor, to meet every nurse. This was our firstborn son.
We were at the hospital when I received a call from my brother. My 84-year-old mother had died. Two weeks later, our family (including Josh) flew to Pennsylvania for Mom’s Funeral (The cabin air-pressure changes alone were hellish for Josh.)
We returned from that trip to spend the following week packing our and Josh’s belongings for the move back into Phoenix. Our tenants were expecting a baby in a few weeks, so we rented a house from someone else.
Josh while coping with illness had a knack for driving a wedge between Alan and me. I think each of them wanted me to be his exclusive best friend. They were two adult males living under the same roof.
Even when healthy, Josh kept unpredictable night-owl hours, napping during the day, and visiting with friends till late at night. His illness disrupted his sleep patterns, and he would be posting on Facebook and writing emails into the wee hours.
Alan is an early bird — early to bed and early to rise. He’s at his best and brightest at the crack of dawn and loses steam as the day wanes.
My natural tendencies are more like Josh’s. These patterns alone were enough to set the stage for conflict. Often Josh and I were awake talking or drinking tea or watching quirky TV shows like “Iron Chef” long after Alan had gone to bed.
Unfortunately, our only television was in the living room, separated from the master bedroom by a paper-thin wall.
Josh insisted that he would beat cancer, but I couldn’t deny how monumental the odds were against him. I tried to make the most of every minute I had with him. Alan, however, wasn’t on the same page.
He wanted Josh to maintain household decorum, something Josh had been unwilling or unable to do since he was a toddler.
Large mounds of Josh’s belongings, which we had moved out of his apartment in boxes, crates, trunks, and trash bags, filled our garage; and parking our cars on the street was a point of contention with the local homeowners association.
Tension crackled in the air. Josh and Alan bickered. I attempted to explain them to each other. At times, Josh referred to Alan as “your husband” and told me that they’d be reconciled in heaven but not here on earth.
I knew they loved each other; they just couldn’t seem to express it without offending each other in the process.
Yet three days before Josh died, when doctors removed the respirator tube from his throat, he looked at Alan and me and rasped, “I love you, Mommy. I love you, Daddy. Hallelujah!”
So how does Comradeship figure into this turmoil? I believe that the foundation of friendship Alan and I laid early in our relationship held our marriage solid when everything else around us was crumbling and helped us in coping with the illness of our son..
Now, more than a year after Josh’s death, we are rebuilding on that friendship foundation. We’ve both been shaken to the core, but we’ve never questioned each other’s loyalty.
We’ve talked and listened and nodded and comforted. We’ve scratched each other’s backs, rubbed each other’s shoulders and feet.
One afternoon a few months ago, when I was in a particularly dark, shrinking place emotionally, Alan suggested, “Let’s go for a drive.” He insisted I get into the car and drove us to Camp Verde, about an hour north of Phoenix.
He got a Dairy Queen, and I got a Starbucks, and we both got “out of our heads” for a while. There was something incredibly therapeutic about changing our physical surroundings that also overhauled my interior space.
We’ve always enjoyed walking and talking and strolling — not hiking, not power walking — and we try to go often.
The casual rhythm of our steps lends ease to conversing (or not) and noticing the simple beauty of our surroundings. Despite what we’ve been through, we can see all around us what we still have to be grateful for.
Recently we’ve started pulling games out of our closet. At first, neither of us felt particularly competitive or sharp, and concentration was challenging. But after I beat Alan in our first round of Othello, he came back and clobbered me for the second.
Ahh, that was much more like it! Now we let the killer instinct overtake both of us as we strategize at gin rummy and “No Dice.”
A crisis brings out the best and the worst in a person’s character.
This one has stripped Alan and I bare of any pretenses we may have tried to maintain in each other’s company.
We’ve seen each other’s raw, exposed emotions, and most human frailties. We’ve let each down in myriad ways. While I tried to keep Josh’s head above water, my divided loyalties left Alan bobbing in a sea of insecurity about our relationship.
I chose my priorities, believing that Josh needed my maternal ministrations and Alan would just
have to “suck it up” for a season.
But I knew it would just be for a season. Beginning with Dr. McClary’s horrific pronouncement, no medical doctor gave us false hope about Josh’s chances of surviving his cancer.
Even his naturopath in Tucson offered a grasping-at-straws sort of treatment option involving a painful and poisonous plant substance. Josh refused to accept it. For me, that visit sealed the knowledge that he had only a short time to live.
So I put Alan’s desires on the back burner and tended to Josh’s needs. Now, I hope you are listening to this point: I did not negate my commitment to Alan, nor did I marginalize him and our relationship.
Quite to the contrary, I knew how solid and strong our marriage vows are to each other. A large framed, calligraphic copy hangs prominently on display in our home. We see them every day, and we take them seriously.
When I swore to remain by Alan’s side and commit myself to him as “one in whom his heart could safely trust,” I meant every word in the sight of God and man.
However, Alan and I disagreed on certain aspects of Josh’s care. He valued my health and wellbeing over Josh’s, while all I could see was Josh’s health disintegrating before our eyes.
Fatigue is a major symptom of my MS, and Alan saw me coping with illness, pushing the limits of my endurance, staying up late, running errands all over town to purchase expensive organic foods, supplements, goat’s milk and so on, supporting Josh in his hope that these alternative treatments were beating his cancer, while his condition deteriorated.
Josh bristled when Alan suggested he confer with his oncologist in Tucson or talk to the patient coordinator at the cancer center.
“Tell your husband such and such,” he would say, triangulating our relational structure. “I refuse to recognize that man as my father.”
He couldn’t see how much Alan ached in his inability to do something to help heal his firstborn son. But I could see it, perhaps even more than Alan himself did.
Alan’s commitment to cherish and protect me never wavered. But he was fighting this battle on many more fronts than I was, and in the process, he took a lot more hits.
I realize now how much of his health, physically, mentally, and emotionally, he sacrificed during that time.
Before Josh died, I worked with my doctor to wean myself from my anti-anxiety medication. I wanted to tune in to my emotions, to be able to cry when I felt sad, and not grope my way numbly through my grief trying to figure out how I was supposed to be feeling.
I wouldn’t recommend that course of action for everyone, but it was the right decision for me. I spent much of my life suppressing my negative emotions, steeling myself against sadness, anger, and fear.
Now I wanted to let myself feel and process all my emotions. I have never cried so much in my life.
Our church hosts a program called GriefShare that offers support to people who have lost a loved one.
Shortly after losing Josh, Alan and I began attending the weekly sessions, leaning into each other, weeping, and drawing strength and encouragement from the group and its leaders.
Over the following four months, as I processed my grief, I felt I was gaining emotional strength.
Alan, though, was heading into a dark tunnel, and neither of us saw it coming.
To handle all the responsibilities of moving twice in one year plus remodeling our home plus settling Josh’s very disorganized estate while maintaining a nonprofit counseling ministry, Alan had been over-adrenalized for a while.
Shortly after Christmas, his body said, “Enough,” and he slid into depression. Physically, mentally, emotionally spent, and spiritually depleted, he would sit in a chair in the family room, staring blankly, and not engage in conversation or pick up a book or turn on the television.
When I’d ask him what he would like to do, he would merely shrug his shoulders and look apologetic.
Through most of our marriage, I’ve had people I could call during a marital crisis, friends we can trust to hear both sides of our issues, to listen compassionately, to give wise counsel, to pray, and to maintain confidentiality.
We have also relied on professional Christian counselor Alfred Ells to help steer us in the right direction at various crisis points.
More than once over the past two years, Alan and I sat in Al’s counseling office, unknotting tangled issues. The day before Josh died, Al sat in our living room, asking the hard questions, granting me a forum to express my anger toward Alan for the way he related (or did not relate) to Josh.
It’s not that I was “right” and Alan was “wrong,” but we have always reacted to emergencies differently — I the analyzer, trying to determine what is going wrong and how best to resolve the situation; Alan the fixer, jumping to action.
Because we teach couples how to communicate with each other, some people expect Alan and me to be terrific communicators. They think we must never argue or disagree with or misread each other.
Ha! The opposite is true. Alan and I learned the communication skills we teach because we are by nature, such poor communicators. We’re naturally argumentative and prideful and protective of ourselves, like most people we know.
We often tried to discuss our issues during the months of Josh’s illness, so much tension built between us. But more often than not, we each tried to convince the other to change his or her stance.
Our communication skills worked OK; we simply disagreed with each other — over a major life-and-death issue. I could not change Alan’s viewpoint, and he could not change mine.
Fortunately for us, or more rightly, by God’s grace, Alan and I had kept short accounts with each other. Years ago, we learned the futility of revisiting the ghost towns of old arguments.
Yes, we had our days of gunslinger-type standoffs in the dusty streets of Tombstone, shooting it out over past hurts one or the other of us didn’t want to let die.
But with time and practice, we learned how to target the issue rather than the person who holds an opposing view of the issue. Neither of us any longer wants to let ourselves get sucked into arguments that escalate emotionally.
But walking through cancer with Josh propelled us into new territory. Though the terrain looked unfamiliar, a lot of the ground we covered seemed similar to places we had been before.
Do I nurse a crying baby or give some TLC to my husband at the end of his workday morphed into Do I juice kale and wheatgrass for a son who may take a sip or two of the concoction and turn up his nose at the rest, or do I give some TLC to my husband at the end of his workday?
One evening, Alan walked out the door and spent the night at a motel to avoid the frustration of my stonewalling. Neither of us wanted to budge on our stands on the issues dividing us. And truthfully, we were both “right” as far as either of us could be right or wrong.
We understood each other; we simply did not agree.
But once Josh was gone, I could see no sense in trying to defend his behaviors or explain his way of thinking to Alan. We needed to support each other emotionally in our grief.
In the year since Josh passed away, Alan and I have rehashed the issues we dealt with during that time. We’ve bathed them in forgiveness and covered them with grace.
We’ve listened to each other, held each other’s hearts, held each other’s hands. We have plenty
of time now in the silence of our loss to hear each other out.
I don’t think either of us has changed positions or would do much differently if we were to walk through it all again. But we’ve verbalized our feelings, and we’ve listened, and we’ve felt understood.
Neither Alan nor I felt romantic during the period of Josh’s illness. I’m a postmenopausal woman. Both of us were taking medications prescribed by our doctors to help us deal with anxiety.
I was careful to maintain our sexual relationship and meet Alan’s needs, but I was distracted, preoccupied. His medication affected his responses. He thought I was stimulating him differently than usual, somehow modifying how I physically engaged with him.
He longed for the release that sex usually gave him, but even what I thought was a successful conclusion did not bring him the satisfaction we had come to expect after 35 years.
It was as if we were starting all over again, trying to learn how to be lovers.
I felt completely disinterested in sex. It’s not that I actively opposed it or refused it, but I had no desire for that sort of pleasure for myself.
However, Alan (God bless him) insisted on “pleasuring” me at least once a week. I reluctantly undressed and lay on the bed as uninvolved as a baby awaiting a diaper change.
Yet he was a determined lover and drew me into a place of engagement, enjoyment, and release until I’d melt in his arms and thank him repeatedly for caring for me.
In April I celebrated my 60 th birthday. Physiologically Alan and I hardly resemble the highly toned gymnasts who undressed in front of each other on our wedding night.
But sex, though not quite as frequent as it was 36 years ago, remains a vital component of our
expression of love for each other. Need I say it’s different for him than it is for me?
I don’t know if I’ll ever understand the buildup of pressure in him that demands an outlet that he could release in other ways, but that finds its most complete and satisfying expression of fulfillment in coupling with me. And that act of marriage “re-stickyfies” the glue that holds our union together.
Over the years, our technique has changed. I can relax. I no longer fret about noises from the outside, and with no children at home, don’t have to lock our bedroom door. I’ve learned to receive from Alan, and he has learned the rhythms of my responses.
Also watch: The importance of sex in marriage.
We make a good pair of lovers, he and I. As long as we make the time.
There’s no other way to say it: Experiencing the loss of a child shakes one’s faith. It has shaken mine. It has shaken Alan’s. But shaking is not the same thing as breaking.
Our faith has been banged up, but it is not broken. God is still on the throne of the universe; neither of us ever questioned that universal Truth.
How could we go on if a Sovereign God was not still the very atmosphere in which we and our world exists?
If we didn’t have the assurance that Josh, unhampered by his broken body, exhaled his spirit and awoke changed, whole, immersed in the Eternal Life awaiting all those who trust Jesus for salvation?
I imagine the shell of his earthly body dropping away, useless, his spirit instantaneously leaping full throttle into the chorus of angels and all the saints who preceded him. And in just the blink of an eye, Alan and I will be there, too.
That is our resurrection hope, accomplished at the cross in the Messiah, the Perfect Lamb of God, whose blood eternally sweeps across the lintel of every believer’s earthly “house.”
Our faith is still recuperating from the gravitational shifts that rocked our world. I have been unable to journal during my Quiet Times. Bible study is difficult for me, though the word remains a source of deep comfort, its Truth resonating in my soul.
Alan at first continued all his ministry-related activities, leading a small group and teaching, while I, unable to make it through a church service without weeping, could barely imagine myself ever leading anything again.
Then, almost without warning, our roles reversed. Alan hit that emotional wall and sank into a depressed state. He found crowds or groups of any size intolerable. Just as I was getting back on my feet emotionally, desiring more fellowship and interaction with other people, he withdrew from them.
Now we’re regaining our spiritual balance. We’re not “home free” yet, but we’re on our way there.
While coping with illness here’s the incredible, wonderful, exciting discovery I’ve made about my husband through our walk in the woods of sorrow. He has never ceased to provide me with spiritual covering. I have felt his protective prayers for me every day.
Our prayer time together seems unremarkable, often short. Sometimes he tells me how uncreative and uninspired he feels in his spiritual walk. But the fact is he has not stopped walking.
He meets with the Lord daily, and I am safe, protected by the spiritual roof he maintains over my head.
Even when we feel out of sync with each other, our spirits remain entwined by a covenant instated 36 years ago.
With that transaction, we combined all we had and were into one organic whole that includes far more than our material goods. Even so, years elapsed, and I continued to distinguish between our individual contributions to our collective, say, “my” success, “his” accomplishment, “my” talent, “his” abilities, “my” and “his” relationship with each of our kids.
The process of coping with illness, losing and, grieving Josh torched that heap of “my” things and “his” things. The combustion consumed our previous lives as we knew them. What was left resembled a mound of ashes — colorless, dead, hardly worth sifting through.
What color is grief? What distinguishes Alan’s charred pride from mine? What difference does it
make how we expressed love to Josh before he died?
I recently watched a television special about Mount St. Helens, the Washington volcano that erupted on May 18, 1980, devastating 230 square miles of forestland. Protected as a national monument, a 110,000-acre area has been left undisturbed to recover naturally.
Amazingly, literally out of the ashes, life returns to the land. Small rodents that weathered the eruption underground have disturbed the earth with their tunnels, creating soil where seeds can lodge and sprout.
Wildflowers, birds, insects, and larger animals have returned. Spirit Lake, left shallow and swampy by the blast’s resulting avalanche, is returning to its formerly crystalline clarity, though with a newly petrified forest below its surface.
So Alan and I are finding our new “normal.”
As in 2 Corinthians 5:17, old things have passed away, and just about everything in our lives is being transformed into something the Lord has intended for us from the very beginning. We are becoming more like Him.
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