by Tara Wood

Jan and Wayne Johnson Photos by Stuart Zolotorow

A marriage is like a building. The structure can be weakened by lack of maintenance, or improved with attention and work.

Add a serious health problem, and the building must weather a heavy storm. If the foundation isnt strong, the underlying imperfections might grow and spread from the force of the storm, ultimately rendering the structure so fragile it falls apart. Or, the partners can use resources like love, support and determination as the cement to hold the structure together, and maybe even to build a better building.

Here are stories of how five men and women served by MDA handled the marital issues and challenges that arose when one partner was found to have a neuromuscular disease after being married. Two people agreed to share their stories on the condition that they could remain anonymous, and theyve been given pseudonyms.

While each relationship is unique, these spouses have learned lessons that can translate into valuable advice for any couple. For another perspective, see “From Where I Sit: For Better or Worse.”

'We Had to Reinvent Our Life'

For Jan Johnson, receiving a diagnosis of myasthenia gravis in 1998 marked a major turning point in a frustrating, multiyear odyssey of perplexing and debilitating health problems, medical tests, treatments and misdiagnoses.

But while the definitive diagnosis answered many questions about symptoms shed experienced since the 1970s, it wasnt the magic bullet shed been praying for.

The bubbly 52-year-old from Churchton, Md., hasnt been able to bounce back fully to an active life filled with volunteering, a career and a marriage to husband Wayne.

Johnson, Marylands MDA Personal Achievement Award recipient for 2002, said the ultimate diagnosis came about a year and a half after "the Lord put a wonderful man in my life" and she remarried in 1996.

It was the second marriage for both: Wayne had been divorced for 16 years, and Jans first husband had died suddenly in 1992. But during a time that should have been filled with newlywed bliss, Johnson was plagued by extreme fatigue, droopy eyelids and slurred speech, and was so weak at one point she couldnt even brush her hair.

"My life as I knew it wasnt there," she said, and her frustrations were compounded by guilt that she was dragging Wayne through difficulties he didnt deserve.

"This was supposed to be a happy time for him," she said. "When I was so sick I would tell him, I dont want you to feel trapped. If you want out, please go. I didnt want him to have a miserable life."

Wayne chose instead to remember his marriage vows. "When you get married, it says for better or for worse. You just have to deal with it, and it gets hard at times," he said.

Johnson has dramatically cut back on her volunteer work for children and families affected by cancer, including hospital visits and running a family camp retreat. She was also forced to discontinue performing as Sunrise the Clown, give up a job that she loved doing security for Raytheon Missile Systems, and take disability income.

"The only thing that really helps me is rest, and I cant be around people who are sick" because her immune system is compromised by the drugs she takes for MG, she said. Johnson also underwent a thymectomy to treat her disease.

Wayne, a central office technician for Verizon, sometimes has to do more than an equal share of housework when Jan isnt feeling well. He also took a cut in pay when he transferred to a Verizon office closer to their home.

"Its caused a lot of stress in our marriage because my husband has to be the chief bottle washer and cook and everything," she said. Wayne says Jan "does what she can" when shes able to.

An ongoing challenge is not being able to plan things, such as trips or outings, because of the unpredictability of Jans disease.

"Well plan to do something, so hell take off of work. Then that morning comes and I cant even get out of bed," she said.

LESSONS LEARNED

The eternally positive Johnson strives to focus on what she still can do. When her health allows, her volunteer efforts now include extensive activity with MDA (she was designated Marylands 2002 MDA Adult Goodwill Ambassador) and creating awareness about myasthenia gravis. She hosts educational sessions about the disease for paramedics and other health care workers.

The couple relies on their love and open communication to get through times in which they sometimes verbally take their frustrations out on each other, Wayne said.

"We get upset at each other about things, but we talk it out and get it straightened out," he said.

Jan still grapples with not "overdoing it" when she feels well and, as she puts it, with having the disease, not letting the disease have her. She also gathers strength from her religious faith, benefits from monthly counseling sessions, and spending time with her two stepdaughters and four grandsons.

Having myasthenia gravis "has changed my life greatly, but we just have to reinvent the life," she said.

'He Literally Ran for His Life'

When "Tracie" started experiencing some startling physical symptoms about two years ago, they were eerily familiar.

Her racing heart, shortness of breath, enlarged calves and extreme muscle weakness reminded her of problems that her brother, uncle and two cousins had experienced before each died of Duchenne muscular dystrophy (DMD).

Tracie had long understood the genetic implications of having DMD in her family, and as a result she underwent sterilization at 19 so she wouldnt get pregnant. In her 40s, mounting health problems eventually led to the discovery that shes a "manifesting carrier" of the disease: a female who can pass on the gene mutation and also has symptoms of DMD herself.

Grappling with this knowledge was the beginning of a new world of surprises and struggles that Tracie now occupies. Six months after her diagnosis, her husband of 24 years "literally abandoned" her and their adopted teen-age son.

In hindsight, she realizes that the escalation of her health challenges magnified underlying issues in the marriage, Tracie said.

"We just had one thing after another wallop us, and it all had to do with my health," she said, referring to the DMD, her long history of arthritis and many related surgeries.

In addition to financial strain and a social life that became limited to doctors visits, Tracie found that her husband no longer viewed her "as a person."

Intimacy and sex became a divisive issue (and still is now that shes dating). She experienced "mortifying" problems during and after sex: chest pain and severe shortness of breath during intercourse, and intense muscle pain that would sometimes last for days afterwards.

"He stopped having sex with me because it was causing me pain. He said, I dont want to touch you anymore because it hurts you," Tracie said.

Household duties also shifted, with her husband picking up many extra tasks. That change was complicated by her own stubbornness, she admitted.

"Im very obstinate and wanted to do things myself. That used to make him so mad," Tracie said. "It would take me five times as long to finish a job. Id be in pain and agony, but I did it myself."

At one point, Tracie said, her husband appeared to be suffering from depression, and she suggested they try counseling, but he refused.

"He said no, hed get over it himself. Hed work it out. And then he found a girlfriend," she said. One day he was gone, leaving behind a note, many of his clothes and all the furniture.

"He just literally ran for his life," she said.

Now Tracies trying to rebuild a life very different from what shed envisioned.

"I think the hardest thing is gaining acceptance of who you are. I had just pictured my 40s being entirely different," with hiking and canoeing in the Canadian backwaters.

Tracie is able to walk well for short distances, sometimes uses a cane, and occasionally uses a power wheelchair, especially at her job as a logistics manager in a factory warehouse. She reluctantly traded in her SUV for a wheelchair van.

"Im single I should be driving a sports car," she jokes.

Her employer has made some accommodations that allow her to continue to work, but shes mired in financial difficulties and is declaring personal bankruptcy.

Above all, she struggles with loneliness and the sense of not belonging either to the disabled population or the nondisabled world.

"You feel so alone," she said. "I feel like I dont belong to any group. I guess every human needs that."

LESSONS LEARNED

Tracie wishes shed pursued counseling more extensively for herself.

She also wonders what would have happened had she asked for help sooner. She now receives household help for 11 hours a week from a state rehabilitation program, and greatly appreciates it.

"I wish I would have not been so stubborn and asked for help," with things like grocery shopping or laundry, she said. "Maybe if some of that pressure had been off of us I dont know."

'Were Going to Deal With This'

Art Laramie says he and his wife, Pat, must be from the "old school" because theyve chosen to hold true to their marriage vows for 25 years.

As simple as that may sound, things werent so cut and dried for the Madison Heights, Mich., couple when Art received a diagnosis of myotonic muscular dystrophy in 1990.

Pat and Art Laramie

Laramie was recovering from spinal surgery for an injury sustained during his job as a machine builder when his doctor suspected Laramie had MMD. After a second opinion, plus muscle and nerve biopsies, the diagnosis was confirmed, and pieces of a lifelong puzzle came together.

"I realized a lot of stuff I had had problems with through my life were muscular dystrophy-related," said Laramie, 65.

Almost from the moment they learned of the diagnosis, he and Pat have stuck together.

"I think that, because shes never really voiced a problem with it, it was an instant decision on her part," Art Laramie said. "She put some thought into it and she said, Were going to deal with this."

The Laramies quickly set to figuring out what the diagnosis would mean to their lives. "After Pat and I recovered from the shock, we sat down and we began to ask as many questions as we could," he said.

Following his surgery, doctors recommended that Laramie stop working because of his back injury.

"It caused us to lose two-thirds of our income overnight. That was a big adjustment," he said, plus "the sadness of knowing youll never go back to work again."

The couple has been frustrated by disbelief from some family members whom theyve tried to educate about the genetic implications of myotonic dystrophy. In fact, a child in the family died during a routine surgery from an anesthesia complication that Art believes had to do with the disease.

Art, who wears leg braces and uses a cane or walker and sometimes a motorized scooter, emphasizes that he deeply appreciates Pats staying with him through their ordeal.

Pat just refers to her wedding vows, and doesnt dwell on their no longer being able to enjoy luxuries like ski trips and owning a large sailboat.

"When it says in sickness and in health, thats what I meant. We had the good years and now we have the lean years so we just make adjustments," she said. "You learn to find other things that you can do together."

LESSONS LEARNED

Art Laramie now spends much of his time volunteering. He helps build computers for people with disabilities, and serves on the executive committee of his local MDA chapter. Hes involved with many aspects of the "MDA family," he said, such as working to provide others affected by neuromuscular diseases with assistive technology.

The Laramies also attend two MDA support groups, which include people with many different diagnoses.

"We like the people and you get different information out of each," Pat Laramie said. "You get to talk out your problems."

Laramie encourages others facing similar challenges to seek the satisfaction that comes from helping others, especially those who are worse off than yourself.

When all else fails, Art Laramie said he and Pat remember the words they said to each other 25 years ago. "If you listen to those vows, they say thick or thin. Thats important."

'The Rock Started to Crumble'

Being strong and in good shape has always been a central part of life for "Steve," a 32-year-old from the Midwest.

Not only does he work in a field in which physical conditioning is crucial to his job success, he also gained much of his self-image and worth from his physical strength.

So, a few years ago, when he began to experience a myriad of odd symptoms that included weakness and fatigue, Steve went into a downturn that ultimately cost him his eight-year marriage.

After undergoing "every test known to man," Steve received a diagnosis of facioscapulohumeral muscular dystrophy (FSH) in December 2001.

He says the problems in his marriage began when he started to prepare his wife for the worst, but at the same time, he wasnt able to come to grips with his own vulnerability.

"The image of a man being strong, being proud and taking care of your family, working hard I was doing all those things," he said. "Thinking of not being able to do all those things really sent me into a tailspin."

Matters became further complicated as Steve learned he could pass the disease to his children. He already had one daughter.

"I had a vasectomy as soon as I found out, and my wife decided after the fact that she wanted more children," he said. "I did talk to her before I had it done, but I think she didnt feel like she had a choice."

Then, Steve said, the couples sex life took a nose-dive that was caused by both his wifes desire to get pregnant and his own insecurity about his changing physique.

"I didnt feel as good about my looks. I think that kind of affected our love life," he said. He wondered whether, in lovemaking, she could feel his muscles getting soft or his bones beginning to stick out.

It didnt help, either, that he tried to give his wife a frantic crash course in how to take over his duties in case he was no longer around, he said.

"I think I was scaring her to death, trying to show her how to do the taxes and how to start the snow blower," he said. "I think I almost scared her away."

In hindsight, Steve realizes that his image of himself as the rock of the family something hed taken great pride in contributed to the marriages downfall.

"I was paying the bills, running the household, and my wife was going along with it, but probably never really felt needed in the relationship," he said. "I think that was a big reason we broke down the rock was starting to crumble."

LESSONS LEARNED

Relationships need balance so that when something bad happens, theres just a shift, not a collapse, Steve now understands.

He also advises men who learn they have a neuromuscular disease not to "be afraid to show your emotions. Break down, give your wife a hug or cry, whatever you need to do."

Although he sought counseling through an employee assistance program (his wife declined to join him), he continues to search for a feeling of security.

"Im still kind of in a tailspin. Im trying to get a good grasp of what the future holds health-wise, and what can I expect."

Worried about how long hell be able to work in his current field, hes renewed studies toward a bachelors degree and a new career. Hes gaining perspective about his disease, realizing that he has a pretty mild form, and changing his priorities, too.

"I spent so much time focusing on working hard and saving for retirement and college for my daughter. I never took the time to stop and smell the roses and go for a romantic walk with my wife," he said.

'Leaning Toward Each Other'

Larry Nation taught high school students for years, and coached kids in football and baseball. But in 1998 he was hit by what felt like a top-speed tackle by one of his biggest linebackers: Charcot-Marie-Tooth disease, a disorder that runs in his family.

Suddenly the strong, healthy coach wasnt able to hold a book for very long, use the clutch in his truck or, at times, even walk across a room. Complications from the disease forced the Blanchard, Okla., man to leave his beloved career, but not without a fight, he said.

His doctor advised him to quit his job early in the ordeal, but Nation, 54, didnt agree until 1999. "Humbling" episodes of falling and losing his grip on a bat let him know it was time. He took medical leave and eventually early retirement.

Larry and Merry Nation

Merry Nation hasnt so much as blinked about supporting her husband through the challenges that CMT has brought, Larry said, and the couple credits their incredible love for each other and faith in God.

Merry said there have been times when shes felt overwhelmed by the changes the disease has brought to their lives. But "when you love each other as much as we do, theres just no question. Leaning toward each other and leaning on each other" has just come naturally, she said.

The Nations faith has been tested on more than one occasion. In 1999 a devastating tornado ripped through their neighborhood. "We had extensive damage on the house just as we were dealing with all this [the CMT]," Larry said.

Merry took a job in 2000, and then late in 2002 the company closed. Shes still looking for work.

But with the tests have come "miracles." For instance, Larry got a chance to be a stay-at-home grandpa to one of his young granddaughters, and the two have developed a special bond.

The Nations are sometimes troubled by events that mark the gradual progression of his disease, and by having to plan their lives around his daily medications which often make him groggy.

Larry also is self-conscious about his lack of strength despite his strapping frame.

"In my family, the muscles atrophied but we all were big and remained big," he said. "People look at me and they think at least in my mind they think theres nothing wrong with him, hes a big, strong guy."

For example, at the grocery store, "theyll grab the heavy things like the milk and the orange juice and all the heavy bags and theyll automatically hand them to Larry," Merry said. "Or one time someone from the church called to ask if Larry would go change a tire for someone. Thats something that we just dont do any longer."

Although money is tight and their life together isnt the travel- and adventure-filled retirement theyd dreamed about, dont expect the Nations to complain.

"We had one lifestyle that we had planned on and that didnt happen. On one hand you sit around and say, woe is me. On the other hand, for having a disease like this, we have it so easy, and God has provided in every area," Merry Nation said.

LESSONS LEARNED

Frank communication during challenging times has been extremely important in keeping their marriage strong, the Nations said.

"I tell him whenever Im dealing with something or having a down day or if Im pretty selfish about something. Then we can talk about it and that usually helps," Merry said, adding that her husband does the same.

The two have also learned to treasure their newfound time together something that was scarce when he often spent 18 hours a day teaching and coaching.

And theyve maintained a strong friendship thats become the foundation for a relationship that even the toughest tornado couldnt budge.

"Were best friends and thats made all the difference," Larry said.