Love, Marriage, and Disability- an Inspirational Story
Marriage and disability can pose several challenges to the married couple. But, if the cornerstone of the marriage is love, it isn’t impossible living with a disabled spouse.
Are you wondering, what happens when your spouse is disabled?
Here’s an inspiring story on marriage and disability that will help us understand the meaning of true love. This story will help you redefine the challenges of marriage, and help count your blessings.
The odd couple
Everyone was a little surprised when Josie announced she had decided to marry Paul. Josie was an attractive and vivacious young woman from a prominent and wealthy family.
Paul came from a working-class family and was a shy person. He preferred working industriously at his administrative job and spending quiet time with close friends to attending the big social functions and parties that Josie was used to.
Paul had also been involved in a severe motorbike accident when he was 17, and as a result, had lost all of his memory of his childhood.
Before the accident, he had been outgoing, but the trauma he experienced had changed his personality, making him almost withdrawn. So to some, it sure seemed that this was an unlikely match.
Diagnosis of a disability
However, Josie and Paul did marry, and shortly after, Josie became pregnant. When it came time for their baby to be born, there were complications.
Josie was having difficulty; she didn’t seem to have the strength to deliver and needed assistance. After lengthy labor, their daughter Skye finally arrived.
The doctors who had attended the birth realized things were not as they should be and tried to find out what the problem might be.
Josie explained to doctors that she had always had difficulty grasping objects like pencils and keys and had recently been experiencing falls, but had simply put this down to being a clumsy person.
In the days following Skye’s birth, Josie was diagnosed with myotonic muscular dystrophy. Muscular dystrophy is the name of several degenerative illnesses that cause the body muscles to waste away.
Some forms of muscular dystrophy are slow to progress while others progress rapidly. All forms of muscular dystrophy are hereditary; that is, they are passed along in the family through the inheritance of particular genes.
Learn more about muscular dystrophy at the MDA website. The prognosis for Josie was not good; that she would be entirely reliant on a wheelchair within ten years and would likely not live for more than 20 years.
‘Til death do us apart.
It’s hard to imagine how Josie must have felt hearing this news, a shock diagnosis when her first baby was only a few days old. She was terribly worried about her marriage and disability.
This study by the University of Iowa found that marriages are more likely to end in divorce when the wife becomes sick. The diagnosis of an illness can make either party reevaluate a marriage, and reconsider how satisfied they are in the partnership.
In some cases, a partner may not be willing to provide care to their spouse, or the financial or emotional burdens of caring become too much.
But quiet and reserved, Paul took it in his stride. He assured Josie that he would support her and Skye however he could, for as long as they needed him. And that’s just what Paul did.
From the moment the family arrived home from the hospital, Paul researched muscular dystrophy and took steps to make the home more comfortable and suitable for Josie.
Handling marriage and disability didn’t overwhelm Paul at all. Josie and Paul carried on life as a new family.
Josie was advised not to have any more children and took great joy in watching Skye grow up. By the time Skye was five, Josie couldn’t drive and needed to use a walking stick.
When Skye turned ten, Paul left his job to become a full-time carer for Josie. He cooked and cleaned and helped Josie with her personal care and toileting.
He lifted her from her recliner to the bed each night. Having helpers or carers in to do these tasks was never an option for Paul.
He had promised he would care for Josie, even as she became less mobile. Going out to the parties and social events that Josie had once so loved became more difficult.
The couple spent most of their time in their home, only leaving to take Skye to school or sport, or when Paul grabbed the weekly shopping.
The couple was able to find some new interests they could enjoy despite Josie’s declining health. They shared a love of old movies and made time to enjoy the classics together.
Paul also read to Josie, mostly history, science, and geography books. He would borrow quiz books from the library, and together they would test their general knowledge.
Paul ensured that Josie doesn’t get snowed under the pressure of handling marriage and disability.
They took drives to view local historical sites and scenes. And of course, they enjoyed time with their healthy daughter Skye, who had not inherited the gene for muscular dystrophy.
The challenge of caring
The NAC (National Alliance for Caregiving) estimates that in 2020 there are 53 million family caregivers in the United States. Nearly one in five people in America today provide unpaid care to an adult with health or functional needs.
Spouses who care for their partners contribute so much to the wellbeing of those in their care. And caring for a disabled spouse is stressful.
Carers can experience fatigue or burnout while tussling with marriage and disability of their spouses.
Working and caring for a partner at the same time can become too much, and many carers end up having to resign from their jobs. The allocation of household tasks may need to be reconsidered, and a carer may feel they have to do more than what is fair.
Carers may experience a decline in physical or mental health. Couples may lose the chance to do activities they used to enjoy together, or there may be less time or income for shared interests.
The very nature of a marriage can also change if a couple’s sex life has been impacted by illness or disability.
Help is available
Thankfully, there is increasing support available for carers, as we understand more about the valuable work they do.
Paul says having outside help wasn’t what he or Josie wanted; however, he knew that support was available if he needed it. Paul credits his long-term doctor for providing information and reminders about what services were available if Josie’s care needs to be increased.
Both partners must make decisions about what help is required, if any, to support and sustain the spouse who is in a caring role.
Caring is not a job for everybody; it is physically and emotionally draining. And, unfortunately, the divorce rate increases when a partner is diagnosed with a disability or illness.
But there are millions of Americans enduring marriage and disability of their spouses every day.
Paul cared attentively and lovingly for Josie at home, until in 2008, after a short stay in the hospital, she died.
Despite what her friends and family may have thought, Josie really did pick the perfect partner in Paul. He may not have ever been the life of the party, but he certainly made caring for Josie his life.
Paul and Josie have taught us a lot about getting through marriage and disability. Every relationship is sustainable if it is backed by love, faith, perseverance, and patience.
Want to have a happier, healthier marriage?
If you feel disconnected or frustrated about the state of your marriage but want to avoid separation and/or divorce, the marriage.com course meant for married couples is an excellent resource to help you overcome the most challenging aspects of being married.