It isn't a beautiful wedding ceremony that makes a marriage work. Far more important to success in marriage is preparation and planning. When either the bride or groom taking those vows has a neuromuscular disease, the couple's hearts should be filled with commitment and love, and their minds with realistic expectations.

WE ARE GATHERED HERE IN THE SIGHT OF GOD AND THIS COMPANY ...

It's not that unusual for friends and family members to express doubts about an impending marriage. This may be especially true when one or both partners are disabled.

Jeffrey Johnson of Columbia, S.C., is planning a May wedding. When Johnson, 36, who has limb-girdle muscular dystrophy, and his fiancee, Teresa Hinton, who is able-bodied, announced their engagement, "We got everything from, 'Congratulations. We're happy for you,' to, 'Are you sure that's what you want to do?' She certainly faced a greater myriad of reactions than I did. She's had some folks that genuinely questioned her thoughtfulness."

Talking frankly between themselves about the realities of living with a neuromuscular disease before they got engaged helped the couple handle these reactions from others.

"I realize that in this decision to be married, there is a degree of sacrifice for her," Johnson says. "Because we've talked about that and we have been honest about it, I don't have to deal with getting my feelings hurt when someone says, 'Have you thought about this?"

Like Roger Millerd of Phelps, N.Y., some people with neuromuscular disease have grown up being told they'd never marry or that no one would fall in love with them. Millerd was using a power wheelchair because of spinal muscular atrophy in 1976 when he married Judith, who has no disability.

"I don't think a lot of people thought this was going to last, including my relatives who thought it was kind of a fluke. But surprise, 20 years later, here we are," Roger says.

Judith and Roger Millerd

In another case, the parents of an able-bodied young man objected to his marriage to a woman with muscular dystrophy right up until the wedding. The wife was deeply hurt by their attitude.

"That was maybe the second time I really felt like someone didn't like me or I couldn't measure up because I have muscular dystrophy," she recalls. "It wasn't a big deal that I couldn't walk; I knew that. But for someone not to want me for their child, even though we were in love, was hard to handle."

Several years after the marriage, a chill continues in the couple's relationship with the parents. "They say things like, 'You can't bring your electric wheelchair into our house because it will make rules in the carpet," the wife says. But she and her husband have come to understand that it's the narrow-minded parents who have a problem, and they don't let it interfere with their marriage.

... TO JOIN IN HOLY MATRIMONY THIS MAN AND THIS WOMAN.

The paramount reason two people get married is that they've decided to spend their lives together. Successful couples recognize that love and maturity are necessary to make a relationship work for many years.

Millerd says, "We care very much about each other. Every couple needs to do that whether healthy or infirm." Mutual goals and shared interests are also important. He and Judith both enjoy antiques, collectibles, craft shows and amateur radio.

"Sharing and caring," Millerd emphasizes. "Nobody gets too selfish; nobody gets too self-centered."

Cato Givan of Arvada, Colo., looks back on 25 years with her husband, John. "One of the big factors has been that we really care a great deal about each other. I think that has been the glue that makes you willing to do all of these extra things for another person."

Tim and Amy Haney

But love alone doesn't conquer all. Honest, realistic examination of how neuromuscular disease will affect their life helps a couple discover whether both partners are up to it.

Amy Dunaway Haney of Dayton, Ohio, says that, before their marriage four years ago, her husband, Tim, "was made very well aware of all the possibilities. We talked about the expense, and what it would be like as the disease progresses. We talked about what it would be like if I did die younger than what your normal life expectancy would be. We talked about what it would be like if I was completely immobilized or if we didn't have children."

Her father also talked turkey with Tim about Amy's limb-girdle muscular dystrophy. Amy stressed that she had no choice about living with the disease but that Tim did.

Haney, 27, took as much convincing as her prospective husband did. She was concerned about whether marriage would be fair to Tim. Now she knows, "It's more than fair, believe me. He has his little idiosyncrasies also, though they might not be quite as obvious as mine."

Johnson also had to be convinced his fiancee could handle their life together. "Knowing how much I hate getting in the wheelchair, I tried to impose those same feelings on her and say, 'Obviously if I dislike it this much, then she must also.' That's not really fair; she doesn't know me any other way than this."

Having his fiancee meet with his physician and ask questions about his disease helped Johnson realize Hinton was being realistic. In traveling with him in his job as a coordinator of evangelistic crusades, she's witnessed him facing accessibility problems, such as having his wheelchair lost on a flight or being unable to get through a bathroom door. Johnson considers these "the most difficult times. They're sometimes even humiliating." Having her present gave him more confidence and trust in Teresa.

Mary and Steve Hammett

In her 20s, Mary Hammett, 45, of Twin Falls, Idaho, wouldn't have considered marrying someone with a disability "because I was trying real hard to prove that I was anything but disabled and trying to meet up to everybody else's expectations." But about 10 years ago, when Mary, who has Friedreich's ataxia, met Steve, who has cerebral palsy, "We had both gotten over that point, and we were attracted to each other for who we were."

Sheryl Ferro of Orlando, Fla., says of her 10-year marriage to Jerry, who has spinal muscular atrophy, "I think our problems are probably pretty much the same, and the good things are pretty much the same, as in any other relationship." She says the hardest thing the disability imposes is a lack of spontaneity; whether it's taking a trip, going to friends' homes or having a romantic interlude, preparation is required.

I PROMISE TO HAVE AND TO HOLD ...

With realistic expectations firmly in mind, a couple can focus on the good things they share and on strengthening their bond. Doing this requires open communication.

Says Ferro, "Everybody gives a lot of lip service to good communication, but you really have to be committed to it. That means communicating not just the good things but the bad ones, and not just the bad ones but the good ones. When you pitch in together, it's important that you acknowledge and appreciate the other person's contribution."

Jerry and Sheryl Ferro

Givan, who is affected by both systemic lupus and Charcot-Marie-Tooth disease, acknowledges that handling the health crises that arise with a progressive disease "takes a tremendous amount of strength between two people. It's terribly stressful. You have to know when to lighten up; you have to know when you have to have others come in to help. All of those things have to be carefully balanced."

Achieving this balance takes effort, as does any crisis that might occur in a family. "We have met a lot of different changes and had our rough times and our ups and downs like any other married couple does," Givan says. "The issues may be different. But it's more how you deal with them than anything else."

One of the Givens' techniques is to seek and accept advice, by doing research and talking with professionals and other couples with similar challenges.

... FOR BETTER OR FOR WORSE ...

No one knows what life is going to bring, or what events are going to challenge a marriage. But knowing that one spouse has a progressive neuromuscular disease means a couple is likely to face increasing disability as time goes by.

Roger and Judith Millerd take those changes as they come. "What else can you do?," he says. "Basically you just go on with life. Whatever boulder falls in front of you, climb up or go around it or go over it."

Living with a progressive disability is "not a static process at all. It takes a lot of energy, it takes a lot of time, it takes a lot of blind faith," Givan, 46, points outs. "The thing that never fails to astonish me is that every time something else happens, it's just as big a challenge as the last one."

Progressive disability raises the question of personal assistance with daily living activities. In some households, the able-bodied spouse performs most or all of those duties. Other couples prefer to hire someone to assist with bathing, dressing and other tasks. It's a decision that needs to be worked out in the best interest of both partners.

When both spouses are disabled, outside help becomes necessary.

About two years ago, Hammett's disability reached the point where she and her husband decided "my legs were not dependable enough and we needed to get some home help." Her husband also uses a wheelchair.

"I have somebody come in here and help me shower and dress every day and do my range of motion with me," says Mary, a former teacher. "Other than that, we're pretty independent. We take turns cooking and making a mess of the kitchen."

They also have housekeeping help once or twice a month. Steve works part-time as director of a group home.

"It's a team effort," Mary says of managing their household. "We work together. He does what he has time for and I do what I can."

Johnson is independent now but his rapid loss of upper body strength makes him aware that he'll require help in the future. Accepting help has taken a psychological adjustment, but Teresa has assured him she's willing and able to assist him.

"Our relationship is such that she would be the one I would turn to and I have total freedom in doing that," he says. "The few times that I've had to allow her to do those things for me, that gives her a lot of joy."

During a medical crisis caused by her CMT last year, Givan's husband performed a caregiving role. As She's improved, They've made a conscious effort to return to a more romantic, marital relationship, both by hiring an assistant and by taking a new view of "caregiving."

We've tried a bit broader approach and that is, "It's for your benefit as well as my benefit," she explains. For example, John's assistance in stretching her legs and feet has "turned into a ceremony and a ritual. It's a real pleasurable, physical exchange of closeness. It's a massage and It's real relaxing and real comfortable. In a way It's caretaking, but It's got different, real positive connotations to it."

On the bright side, no matter how much stress the "worse" things may put on a marriage, they don't prevent lots of "better" things from happening.

"I've been really blessed in life," Givan says. "Having a loving relationship with someone is a tremendous source of strength and faith, and makes a huge difference in terms of your personal quality of life, the meaning of life for you."

For Millerd, 48, marriage has meant greater independence and a fuller life. With Judith, "I've done so much more than I ever would have done. I'd probably still be living on the farm with my parents. Or dead. I told my wife a long time ago, I don't think I'd have lived this long if I gotten married."

... FOR RICHER, FOR POORER ...

Two people getting married need to have realistic financial expectations. Among other issues, they should talk about what income they'll have, whether both spouses will work, and how much managing a neuromuscular disease may cost.

Givan was director of pharmacy at a hospital when her CMT began to take its toll. She took a less demanding job, then stopped work altogether in 1990. She's now an artist working at home.

Adjusting to the loss of her income, along with growing medical costs, has placed the financial burden on her husband, who works as a pharmacist and in computer science.

"It has meant a lot in terms of his career," she says. "He has literally given up opportunities in order to be sure that he would always be able to be there if something exceptional came up. He's had the ability to go into another position and has not done it because it would entail travel and he won't do that. He's very reluctant to make the type of moves that a lot of men would elect to do."

The costs involved with Haney's dystrophy motivate her to work at several jobs. A teacher and intervention specialist at a high school, she also teaches Spanish at the university level and is studying for a Ph.D. in clinical counseling at the University of Dayton.

"I wasn't sure how long I would be physically able to teach, so I did that so I'd have something to fall back on if that ever becomes necessary. I figured I would always be able to talk," she explains.

The costs of wheelchair maintenance, a $50,000 van and $10,000 in modifications to their home "kind of makes an extra strain on the relationship," she says. "It's a wonderful thing that technology invented all these great things, but my goodness they cost an awful lot of money."

Haney adds, "I feel like I have to contribute, because this isn't really fair. He doesn't have all this extra expense."

With a similar motivation, Millerd has built a successful business as a tax accountant. "I got to thinking, if I'm married now, I've got to contribute," he recalls. Owning a home also pushes him to work, as does the encouragement of Judith, who's retired after 31 years of teaching.

When Jerry and Sheryl Ferro met, she had a high-paying, demanding government job. He wanted to start a private practice as a psychotherapist, and she decided to quit her job and work with him. Both are 45.

Although she was ready for a career change, she also realized that her long hours and unplanned overtime would not work in their marriage, because Jerry relies on her for transportation and other assistance. They reduced expenses for Jerry's personal care by hiring only a morning shift instead of three shifts daily. She helps him during the rest of the day, and they're careful to maintain a separation between caregiving and caring.

Even when our finances were strained to the absolute limit, Jerry has been adamant about wanting to have somebody do a lot of his personal hygiene things," Sheryl notes. "He doesn't want me to be his caretaker. He wants me to be his wife."

Of course, the "richness" of life involves more than finances. Couples find gratification in building the kind of life they want. This works when they agree on goals, including whether to have children.

Hammett has helped raise her two stepchildren and takes pride in their accomplishments. Johnson has a daughter from a previous marriage, and his fiancee has four children. Both the Millerds and the Givans chose not to have children. The Ferros are considering adoption because of her infertility, and the Haneys haven't yet decided.

Ferro is writing a book about successful couples in which one has a physical disability. Despite the demands that SMA creates in their lives, she says, "When Jerry and I see what we have, we're not complaining. We're two of the lucky people. There's some real beauty in the thing that we share together.

... IN SICKNESS AND IN HEALTH ...

Either spouse can get sick, and neuromuscular disease often brings its share of health crises.

Regarding the impact of illness on a marriage, Givan observes, "The fundamental issue that's involved is not neuromuscular disease but rather marriage itself and the nature of the marriage. "It's like any other crisis; weak marriages go down in crisis situations, and a lot of marriages just go down because people don't know what they've gotten into."

Johnson was divorced after 17 years of marriage. In a new relationship, he wanted to find someone who could be honest about his disability while seeing beyond it. It was also important that she "not be condescending or be a placator or want to sit around and cry over me all day long."

When he met Hinton, she was undergoing cancer treatment, and he provided emotional support for her ordeal. "I sat with her while she had her treatments and was there for all the checkups," he says. "Now she has been cancer free for over two years."

Their respective health problems tested the couple's ability to weather a crisis. "These are the types of things that tend to draw people closer together. Because we've faced that adversity we have a lot of things that pull us together. We both see the need for being there for the other person, so it is harder to pull us apart," he says.

Supporting Teresa during her illness also helped Johnson realize he was needed. "It helped a lot to know that I could be there for her," he says. "That probably helped me deal a little more with the feelings of not being able to provide for her or be to her what she needed. I did understand that supporting her and loving her didn't require a peripatetic motion; that just wasn't necessary."

Because she helps provide Jerry's personal care, as well as all the driving and much of the household work, Sheryl Ferro feels her good health is vital. "If anything happens to my health, that really scares me," she notes. "My health is so important, as far as my stamina and my ability to be mobile, because Jerry, although he's very healthy, relies on me so much where mobility is concerned."

... TO LOVE, HONOR AND CHERISH ...

Couples express their love for each other through their actions every day. Honoring and cherishing one's spouse means placing a high priority on the marriage itself. Besides providing emotional support and encouragement, honoring also means sharing responsibilities and focusing on what each partner can do, not what they can't.

When one partner isn't able to do as much physical work as the other, he or she can often take responsibility for money management and arranging for repairs or other services.

Amy Haney loves a clean house, and she and Tim share housework and cooking. He does the heavier chores in the house. "It's really equal, it really is. I probably do more outside of the home and he does a little bit more in the home."

Millerd's wife helps him with bathing and getting in and out of bed, and does the cooking and errands. In turn, he helps with chores such as clearing the table, and manages finances and home maintenance.

"I do everything I can for her. And she does everything she can for me,"he explains. "It's a good working mutual relationship. We sort of complement each other. It's not like a caregiver situation."

Givan notes, "Able-bodied or not, you can always help each other on a thousand different levels."

She adds, "We have found ways that make it possible for me to assume as many responsibilities as I can." She directs her part-time personal aide to handle laundry, dry-cleaning and meals. Another key is, "I try to be less demanding on myself and less demanding of him. I don't worry about everything in the house being perfect."

Mary Hammett notes that "What you have to offer each other emotionally is so much more important than the other things we get caught up in. I get real frustrated with myself when I can't do things, and Steve just gently supports me and encourages me and says, "Who you are is not what you can do; it's who you are."

... FORSAKING ALL OTHERS ...

When two people marry, they make a commitment to emotional and sexual fidelity. They establish an intimacy that they don't share with anyone else. (A later Quest article will explore sexuality and neuromuscular disease.)

Of course, there's no guarantee of success. In 1994, there were more than half as many divorces as there were new marriages in the United States.

In both Steve Hammett's and Jeff Johnson's first marriages, the disability was a factor in their divorces.

The Hammetts find their disabilities to be a common ground. "He doesn't have to prove himself and I don't have to prove myself," Mary says. "We don't need to explain our lack of energy at the end of the day. We don't have to feel like we have to meet up to somebody else's expectations."

A woman with SMA said her first husband accepted her disability, but couldn't cope when their second child was born with a severe disability.

What determines whether a marriage will survive isn't the absence of problems. It's the commitment and character of the partners and their ability to deal with problems.

In his 20s, Roger Millerd never expected to get married; he thought it was too much to ask. When Judith brought the subject up, "I said, "Come on, lady. Are you crazy?" She said, "Well, maybe."

Now he says, "You have to find a special person. That's what it takes. I was lucky. She's something special."

... TILL DEATH DO US PART.

Those couples who have a strong marriage take great joy and pride in what They've achieved.

Looking at marriages where no disability is involved, Sheryl Ferro says, "For some of them life seems very easy. But I don't think I'd ever trade places with them. It's not something I long for because I know that, more important than anything else in our marriage, is the way we feel about each other and the respect we have for each other."