Matt Bogue powers through the ups and downs of MS
When I arrive to meet with him, Matt Bogue is gazing out the French doors of his apartment in Breckenridge at the birds flitting to and from his feeders and the chipmunks hastily gathering pumpkin seeds from a flower box.He displays quiet introspection which he explains was rarely seen in him a few years earlier in his life. His spontaneous laughter and teasing humor mask the suffering.Still a young man of 38 years, Matt speaks longingly of his ski bum days, tearing down mountain slopes and couloirs, craving as much steepness and deep powder as any peak could present.Matt was diagnosed with multiple sclerosis (MS) eight years ago when he was 30. Now, he is bound to a wheelchair and unable to lift himself or stand.He describes his denial of refusing to believe that an illness could bring him down. He had traveled the world and hiked and skied every slope he could find, often without the aid of a chairlift.His vision was impaired as a result of his illness, but his body could still handle the turns and bumps and jumps required for backcountry skiing at least for a few years.Then, with relentless progression, MS began to weaken his muscles, tearing him away from the sport he loved so much and crushing his heart.
Matt spends his days mostly in his apartment, cared for by his girlfriend, Krisann, who works as a home health aide for Bristlecone Health Services.Krisann is able to stay home and care for Matt, who needs constant assistance, as her only assigned patient.If Krisann was forced to work at a job outside the home, the type of care required by Matt during her work hours would be impossible to afford.Without Bristlecone I would be in a hospital or nursing home right now, Matt said.And he knows only too well what that would mean, having spent a few days in a respite care facility while Krisann visited her family last year.Lacking the constant attention and vigilance in an understaffed facility, Matt developed skin ulcerations and ate very little for those few days. It was a nightmare he fears repeating.But, he reminds himself in my presence, as he often does in the midst of his terror: This is just how it is this is what life is providing.These Zen-like moments of wisdom and acceptance have come to Matt at a high price: Genuine suffering.While some patients can experience years of remission from multiple sclerosis, it is a particularly harsh disease when it runs to its progressive phase. Patients barely have time to adjust to one devastating loss in function when something else is lost and the grief and acceptance process must begin anew.
A ray of hope entered Matts life a few months ago.A new drug for MS called Tysabri was released this spring and he was able to try it. He felt rapid improvement on the medication, regaining enough strength in his arms to help lift himself and transfer out of his wheelchair.While this degree of change might seem small, to Matt it was a miracle. Increased mobility enabled him to do more self-care and be less reliant on others. But, one month after release, the medication was taken off the market due to the death of one of its test subjects. Matt says he declined quickly and once again experienced loss and grief.And then in the middle of our conversation, the roller coaster, which is how life with MS progresses, takes a sudden shift to the positive. Matt excitedly describes how he managed to ski 17 days this winter on an adaptive skiing device he calls the coffin. A volunteer from the Breckenridge Outdoor Education Center, sharing Matts wild and free spirit, took him down the steepest slope he could find, as fast as they could possibly fly.With a look of pure joy on his face, Matt tells of the exhilaration of catching air, even in a device known as the coffin. But, just as suddenly, a tear emerges from beneath Matts sunglasses. The roller coaster plummets again.I cannot, in the wildest reaches of my imagination, even fathom the news that I hear next: Matts friend from BOEC, Will Whalen, who brought Matt, the mad skier back to life, was killed recently by a drunk driver.How can this be? How is it that one person who is already struggling to cope with massive loss in his life has even more taken from him?I cannot bear the weight of this sorrow my heart is crushed. I sit in silence for a moment because there are no comforting words I can say.This is just how it is this is what life is providing, Matt breaks the silence with words that comfort me.Then, Krisann, whom I have not yet met, arrives home after running an errand. As she walks into the room I can tell instantly that she is a very special person, an angel perhaps, if you believe in that sort of thing. The entire apartment fills with the light of her loving and kind spirit. This, too, is what life is providing. She is carrying an armload of puppy paraphernalia for the new dog she and Matt are going to pick up to fill the void left by another of Matts losses, his 14-year-old dog, Miracle.
Krisann sums it up perfectly for me. The services offered by Bristlecone enable Matt to remain in his own home, in his beloved mountains, rather than in a nursing home in Denver; and make it possible for him to ski again with BOEC, where he meets incredible, caring friends; and allow him to have a dog as his very special living companion.Life, too, provides help for patients like Matt through organizations such as Bristlecone and through the resources of the MS Society of Colorado.And it is the generosity of supporters for organizations like these that enable them to survive year after year, being there whenever needed for patients like Matt, giving care and support as it is required.Participating in the MS Society Walk for MS on May 21 or contributing to a team of walkers is one way to help.We hope the story of Matt, a special Bristlecone patient, will inspire your generosity.Dr. Karen M. Wyatt is president of the board of directors for BristleconeHealth Services Inc.
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