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A life of limits buoyed by uncommon faith: Facing a rare disease, Jim Mathews chooses to focus on the things he can still do

Image: Jim Mathews holding tennis racquetby Tom Rademacher| Photography by Eric Tank

Jim Mathews never questioned whether life would be difficult. After all, you don’t marry and raise six children, and then celebrate the procession of 30 grandchildren, without experiencing hurdles along with the hurrahs.

But what he never saw coming was a rare and obscure disease called inclusion-body myositis. “In the end,” he says softly, “my body will have deserted me.”
 
Just several years ago, Jim was arguably a poster child for active 60-somethings. He didn’t smoke, hardly ever drank, and played tennis with the talent and verve of someone 20 or even 30 years his junior.
 
These days, as he turns 70, he and wife Kathy are contemplating a future that will be marked by adaptive measures to handle what myositis robs its victims of a little at a time – mainly the ability to control one’s arms and legs.
 
Myositis is a chronic, degenerative muscle disease in which inflammatory cells invade muscle tissue, causing progressive weakness and waste. Considered rare, Jim’s particular type of myositis afflicts fewer than 10,000 Americans, most of them 50 and older. There is no known cure, and virtually all end up relying on a wheelchair.
 
But against the backdrop of that sobering diagnosis and prognosis, Jim has never asked, “Why me?” Instead, he relies on Catholic faith that came to him in circuitous fashion, and now buoys him as he takes what will become more and more wobbly steps into the unknown.
 
A Grand Rapids native, Jim graduated from Union High School in 1965, and laughingly refers to himself as “a wannabe athlete who probably holds the record for most athletic letters earned during freshman and sophomore year.” The reason wasn’t tied to prowess so much as it was “trying out for every sport to find that one I might be good at.”
 
He discovered it during his junior year when he finally tried his hand at tennis, excelling on the court to such a degree that he played competitively through high school and at Ferris State University.
 
That’s where he went to earn a degree in pharmacy, which he later supplemented with a master’s degree from Central Michigan University in science and administration, with a focus on health.
 
His first job was with Meijer, culled from an internship he had landed while at Ferris. After a year with Meijer, he entered the family drugstore business founded by his grandfather. At one time, they had stores with pharmacies at three West Side locations – in Edison Plaza, at Bridge Street and Valley Avenue, and at
Bridge Street and Scribner Avenue.
 
After five years with the family, he struck out on his own to work in the pharmacy at North Ottawa Community Hospital in Grand Haven. Though he worked for other concerns after his stint at the hospital, they settled on Grand Haven as their permanent home, with Jim explaining, “I’d always thought Grand Haven would be a nice place to raise a family.”
 
Image: Jim and Kathy MathewsAnd what a family he and the former Kathy O’Brien raised.
 
In traditional Catholic fashion – and taking a page from Kathy’s own family (she was the oldest of 11 children born to dentist Robert F. O’Brien and his late wife Virginia) – Jim and Kathy had six kids.
 
Especially now, the couple enjoy the fact that their entire clan is close by. Two of their children and their families live in Grand Rapids, while the other four groups literally live within shouting distance, with one set just three doors away, another around the corner, a third five blocks off and the fourth within seven blocks.
 
They also feel blessed to have three grandchildren who entered religious life as members of the Community of St. John, a Catholic religious congregation founded in 1975 and present in some two dozen countries on six continents.
 
Having family close these days is a godsend for Jim and Kathy, especially in light of how Jim will need
more and more specialized care in the coming years, and be unable to attend to household duties that were once his exclusively. “Being close to family is the main reason we’re not moving,” says Kathy.
 
Jim didn’t learn about myositis overnight; indeed, it took the better part of five years to discover he had it. Tests way back in 2005 revealed mildly elevated liver enzymes. More clues surfaced slowly over the years, including his growing difficulty in playing the guitar. For decades, he’d cultivated a voice and music that was a hit at everything from campfires to family gatherings to church services.
 
Six years ago, he had trouble with the fingering to a song he performed for one of their daughter’s wedding: “My fingers just didn’t go where I wanted them to go,” he says of his left hand, the pinky finger especially.
 
Along with playing the guitar, Jim’s tennis game also started to fade. At first, he chalked it up to age, but muscle tests revealed excessively high levels of creatine; just under two years ago, a biopsy confirmed myositis.
 
In his own word, he “freaked,” calling Kathy from his car to implore that she contact a Realtor, since he’d soon be rendered unable to walk or climb stairs, and they needed to find a different place to live – now.
 
He leaned on his ability to digest and interpret scientific data, however, and came to realize he had more
time than he initially thought. Only in the last few months have they been making changes to their home,
mostly to accommodate him in their master bathroom on the second floor. When he can no longer climb
stairs, they’ll consider an electric chair that ascends and descends along the stairway.
 
Since his diagnosis, Jim has immersed himself in learning more and more about myositis, to such a degree
that he now serves on the board of The Myositis Association (myositis.org), a Virginia-based nonprofit that
functions to create awareness and encourage research around the disease.
 
Jim firmly believes in the power of prayer as well, especially since converting to the Catholic faith after
marrying.
 
He’d been baptized and confirmed at a Protestant church as a youth, but “it was a very nominal religious
experience for me,” he says, and he first became attracted to the Catholic faith as a young teen, “because all my friends went to West Catholic.”
 
At one point, he went so far as to forgo meat on Fridays, and found solace in a friend’s mother, who agreed to provide him a fish dinner each Friday.
 
He grew more serious about Catholicism about eight years into his marriage, after he and Kathy completed a Marriage Encounter session. Jim was a regular runner at the time, and still remembers the exact spot at which he was jogging when he whispered a prayer to God, promising that he’d turn Catholic “if you can send a priest my way that I can relate to.”
 
In the prayer, he named the two priests he’d come to know closely, one of them Father John A. Nadjowski, whom Jim had befriended years earlier while he was a student at Ferris. Not long after that moment of supplication back in 1977, Nadjowski was transferred to St. Patrick’s Parish in Grand Haven, where the Mathews family attended. Nadjowski served there until 1984; he died in 2000.
 
“I know when somebody is beating me on the head with a 2-by-4,” Jim says of that moment some 30 years ago. “So I took instruction at St. Pat’s, and while I probably terrorized the poor nun with all of my questions, the seed was planted.”
 
That seed has grown to embrace a God who is all-knowing and all-loving. And Jim and Kathy do not
mince words in conveying how they trust in him with all their heart.
 
In fact, he and Kathy were instrumental in helping to establish perpetual adoration at St. Pat’s, to which
they refer as “our staple … and the ticket for our relationship.”
 
Though Jim and Kathy are now parishioners at St. Isidore in Grand Rapids, and think nothing of making the trek there each Sunday from their Grand Haven home, they both enjoy hours spent in adoration at St. Pat’s.
 
Daily, they pray that God’s will be done. “I’d be more than happy to accept a cure,” says Jim, “but I simply pray for my health, and it’s more of the grace to accept my health than to pray for a cure.”
 
Adds Kathy, “I think that anything you’re chosen for, you have to think of it as an offering – for the Church, for the world. It’s a way to transform your heart, and we feel this is the way we’re supposed to interpret the Holy Spirit. You just give yourself into it.”
 
Jim’s optimism shines through even as he continues to battle: “I choose to celebrate the things I still can do, rather than dread the things I might not be able to do down the road.”
 
Kathy nods her assent: “That fosters a dependence on God. There’s nothing else you can do.”
 
As for that elusive cure, the “unfortunate reality,” says Kathy, is that not a lot of funds for research are earmarked for something like myositis, partly because of low awareness, which they’re trying to change, of course.
 
As for tennis, Jim has lost a lot of what he used to be able to bring to the game. All, that is, except his exceptional sense of humor.
 
He grins. “My favorite word to my doubles partner?
“Yours!”