Christine Hoene: Always a Beginner

Christine’s father was diagnosed with FSHD in his late 40s. Four years later he was reliant on a cane and, within ten years, a wheelchair. 

When Christine herself was diagnosed at age 52, years after his passing, it was contrary to the impression their family had been under – that FSHD was a maternal gene and since her father had it, Christine was in the clear. In addition, they were told that since her genetic deletions looked almost identical to her dad’s, that her FSHD progression likely would, too. 

She missed her dad in that moment – she wanted someone to talk to who would understand, and she wondered if he’d actually known. “I could never whistle very well,” she said, “and he’d always ask me ‘Whistle for me, Kippy. Try it – work on it.’ So, I wonder if he suspected.” She isn’t angry if he did and didn’t say anything. She grappled with the same do-you-don’t-you when she noticed muscular deficiency in her teenage son. 

And when it came to telling her mom about her own diagnosis, she hesitated, knowing she’d be devastated. “Telling her was hard,” Christine said. “And it made the biggest difference for me and my outlook on life.” While trying to comfort her mom, she affirmed for herself that life was good – challenges and all. 

She had a family and was a stay-at-home mom for her three boys until she grew professionally restless, at which time she started her own business teaching public CPR classes. Within a year, she had seven employees and, through a series of events, her business, LifeSafe, grew to its current 100-employee size with a national presence. 

Even so, Christine was plagued with fear and anxiety for the first year after diagnosis, finding herself white-knuckling the steering wheel and breathing through difficult moments. She was an avid athlete, having dedicated herself to learning a new sport every year, and now she wondered if she’d be able to walk in a handful of years. 

Over decades, she’s rumbled with all the big topics – do you tell your child they may have inherited the condition when fear and anxiety are the likely only outcomes? Do you begrudge your own parents for not telling you sooner than they did? When dating someone, when do you tell them so you’re being honest while not letting the disease have outsized influence on a good beginning? Is it so bad to want corrective surgery to minimize the effects of facial impairment – is that vanity or an investment in self-confidence? There are no easy answers. 

Living under the progression prediction, two things propelled her forward – her dedication to physical fitness and her determination to live life like a present she opens daily. 

She continued her sport-a-year pursuit, practicing nearly 50 different ones over the years and ranking them on fun, fear, and cool factors.* A self-proclaimed “perpetual beginner,” she came to terms with being bad at something until she was good – and to continue doing something she loved even if it never came naturally. “I’m so bad at surfing,” she said. “It’s been 20 years but if someone asks, I tell them I just started! I love it, so I keep at it.”  

She credits staying physically active with staving off decline. “They told my father, ‘Save your muscles, don’t exert yourself too much.’ I think it contributed to his decline and, to an extent, his fun in life.” 

While her progression has been relatively mild, affecting facial and scapular muscles, she is sandwiched between generations of men she loves – a parent, whose course was swift and debilitating, and a son, whose story is being written now. There are sleepless nights wondering what the future holds for him. 

“We know so much more now than we did even a decade ago,” Christine said. “The FSHD Society has been critical to bringing resources together to move things faster. I can’t find a cure on my own, so I donate to the Society to support people today and change the future for my son and others like him.” 

And in the meantime, Christine continues to embrace life with FSHD like the perpetual beginner she is: “The thing is, everyone is a beginner at the beginning,” she says “but they expect to be good immediately. Listen, learn, be open. Have no expectation of success. Find what makes you happy.”