By Marty Denzer
Catholic Key Reporter
KANSAS CITY — She was a health conscious, lifelong athlete, so it was a shock to Michelle Melland and her family last August when she was diagnosed with Amyotropic Lateral Sclerosis (ALS). More commonly called Lou Gehrig’s disease, after the New York Yankee first baseman who brought the disease to national awareness in 1939, it is a degenerative neuromuscular disease, for which there is no cure. ALS attacks nerve cells in the brain and spinal cord, neurons that control the body’s voluntary muscles. Because they no longer receive the messages they need in order to function, the muscles gradually deteriorate, leaving the mind and senses intact. About 14 cases a day are diagnosed across the country and, at any given time, about 30,000 people are living with ALS.
Michelle’s first clue was a sensation in her left foot while playing volleyball last February, a “floppy feeling” like her shoe was falling off, which she blamed on new shoes. Then she chalked it up to a new exercise routine, and when the floppy sensation was followed by twitching in her triceps and biceps, she convinced herself that was the problem. But the twitching, like jolts of electrical currents going through her muscles, worsened and was soon constant. Still, her test results “came out of left field. I was shocked, and had a lot of dark thoughts at first. It was extremely hard,” she remembered, her soft voice cracking just a bit with emotion.
Michelle had played volleyball, basketball and was a standout on the track team at Immaculata High School in Leavenworth. She graduated in 1984, holding the school records for high jump and long jump, records she still holds. She accepted an Army ROTC scholarship to Notre Dame University, earning her Bachelors Degree in Government in 1988. She then served as a transportation officer in Germany for four years before returning home and pursuing an MBA at KU, where she met Paul Melland. The couple has 9–year old twin daughters, Sydney and Hayley.
“I decided I can either be miserable or I can keep going, enjoying my time with my family and friends. I came out of it.” She glanced at Paul sitting nearby and smiled. “I’m blessed with a great support network,” she said. “Paul is wonderful! And St. Peter’s is amazing!”
As soon as word of her illness reached her fellow St. Peter’s parishioners, they reached out to offer whatever help was needed. Beginning with offering to have the girls over for sleepovers or give them a ride to practices or other events, it soon mushroomed.
The Mellands realized that as time went by, Michelle would not be able to climb the stairs of their Brookside home, and would need a wheelchair. The family started hunting for a single story house, but found nothing that they liked as much as the home they had. They didn’t want to move, but what to do? Paul was concerned about finances. They had decided when Sydney and Hayley were born that one parent should be at home with them, and as Michelle was the primary breadwinner, he chose to stay with the girls. Paul started his own home-based IT consulting business and Michelle worked full-time.
“After the initial shock of the ALS diagnosis,” Paul posted on their website, michellemelland.com, Michelle’s Journey, “my thoughts turned to fears of financial uncertainty, ‘… will we end up in the streets someday soon?’” Fortunately, in a very short time, Paul was hired to work in the IT department at the University of Kansas Medical Center. Although Michelle has gradually cut back her hours at the office, she continues in her role as Vice President, Client Services for USA 800. Her employer has committed to keep her employed for as long as she can work.
The couple had decided to remodel their house, turning the garage and kitchen into a first floor bedroom suite and new kitchen. Architects and fellow parishioners Bob Gillcrist and his wife Maria, drew up the plans and word spread of the project. Before the Mellands knew it, a group of parish folk volunteered to work. Remodelers, experts in rough in and trim carpentry, drywall and tile — just about any needed skill, someone volunteered. Tearing down the garage and the kitchen was scheduled for the end of March. A few days before, a group of moms converged on the house and swiftly packed kitchen utensils, set up a temporary kitchen in the living room, and hauled everything else to the basement. On the Saturday the tear down was to begin, about 30 volunteers arrived.
The construction limited the Mellands to a microwave, a hot plate and a crock pot for cooking meals. The parish stepped up to the plate again with the “Bring Michelle a Meal” program, coordinated by Julie Lisac.
Julie and her husband have known the Mellands since their daughter Margaret entered preschool at St. Peter’s with Sydney and Hayley.
“We were, all of us at St. Peter’s, touched by the story,” Julie said. “Anyone who hears it is touched. We all want to do whatever we can to help and show support for Michelle and Paul and the girls.”
There are a few simple rules for participating, posted on the website: “Please deliver meals (for a family of 4) by 5:30 p.m. There will be a cooler on the screen porch for meal drop-off. Due to the kitchen renovation they have a microwave, crock pot, and a hot plate burner. Dishes have to be washed in the basement, so please plan accordingly.”
The parish response has been overwhelming. “It’s a surprise almost every night; when we look in the cooler there’s always something good!” Michelle said. Paul agreed, “We’ve had lasagna, casseroles, chicken … oh all sorts of good things!”
A team of engineers, architects, contractors and both skilled and not so skilled craftsmen from the parish, Knights of Columbus and the Boy Scouts are undertaking to make the Melland’s home wheelchair compatible, a project costing about $100,000, on a $30,000 budget.
The space is being transformed. The design is to be wheelchair accessible, using Americans with Disabilities Act guidelines. Doors and hallways are wider, with an open kitchen. Suppliers offered cabinets, trim, tile and other supplies at cost, discounted or donated. A core group of volunteers work two evenings a week and all day Saturdays. Others, including the Boy Scouts of Troop 118 have contributed a little time or a lot, depending on their schedules. Some of the women have started painting the kitchen and eating area. Completion is expected by the end of August.
“The work crews are amazing,” Paul said. “Their willingness to give up evenings and weekends, their camaraderie, it’s amazing. They’re supermen and women!”
Parish and school families have offered their support in many ways: prayers said for Michelle’s health, bake sales, chili and jeans days; school children running errands, cleaning up yards and doing light housework for neighbors to raise money. St. Peter’s Parish and School dedicated its 2011 Mom’s Volleyball Tournament to Michelle, donating $500 to her. By mid June, about $13,500 to help defray remodeling costs had been raised, mostly by parish and school families, Paul said.
Chris and Lori Lewellen, owners of The Well in Waldo, offered to host a Knights of Columbus fundraiser on June 27. It was a hot summer evening, but all together about 300 people crowded into a room to enjoy appetizers, craft beers and a concert by the Gillcrist’s daughter Anna, a St. Peter’s School alumna who recently graduated from Stephen’s College in Columbia, with a musical theater degree. Accompanied by the Rock Solid Trio, parishioners James Wagner (music director), Fritz Hutchison and David Gillcrist, Anna sang many favorites, including It’s a Wonderful World.
Chris Lewellen told The Catholic Key, “Our oldest son, Dillon, is 9, the same age as Sydney and Hayley Melland. We’ve known them since Dillon started kindergarten. I’ve played in the Mom and Pop’s basketball game with Paul.
“Of course we knew about Michelle and about the reconstruction of their house. Sometimes things like that can fall through the cracks, you know everybody wants to help out at the beginning but then life goes on. I didn’t want that to happen here. I contacted Travis Curran, the Grand Knight at St. Peter’s, about the remodeling. I wanted to help ease the financial stress a little.” They hoped to raise $8,000 for the Mellands, but the final tally totaled $15,000.
“Was I happy? Yes! Was I shocked? No,” Lewellen said. “I know St. Peter’s parishioners; all that was needed was to make them aware of the need.”
St. Peter’s friends and Michelle’s co-workers participated in the July 7 Keith Worthington Chapter ALS 5K Walk, Putting the Boots to ALS as team “Michelle’s Mateys.” By noting “Run4Michelle” on the registration form, they ensured that half the$30 fee went to the Mellands. The other half went toward finding a cure for ALS. A benefit poker tournament is also planned.
The family has done some traveling to get away and spend time together. They enjoyed Disney World last October thanks to USA 800. The family also had an opportunity to visit Mt. Rushmore. Paul and Michelle hope to take some day and short trips closer to home, such as Lawrence, Kan., and Colorado. When Michelle is at home and Sydney and Hayley aren’t busy with school activities and their friends, mom and daughters enjoy knitting and crafting together. Paul posted on the website, “Our girls look up to her with such great respect and she is truly their role model.”
Michelle plans to continue to walk in the annual Avon Walk for Breast Cancer in her mother’s honor as long as she is able to. She also is part of a group that sends monthly care packages to troops overseas.
The family’s most immediate concern is completing the updates to their home. When she needs motorized equipment, transportation, therapy and full-time care, expenses will again mount up down the road. They are hopeful that an organization or individual can loan and/or donate an electric wheelchair and household devices used by people in wheelchairs.
Through it all, Michelle and Paul have relied on their strong Catholic faith, and on each other. And St. Peter’s has again shown its willingness to come through for its families and the Mellands, as well as others, can attest to that.
“We’re not going through this alone,” Paul said.
To help Michelle Melland and her family, visit www.michellemelland.com to learn how to become one of Michelle’s Mateys.