I first met Ian after seeing him on Facebook. He graciously accepted my friend request, and we have become fast acquaintances ever since. Ian is a humble, 30-something year-old man, living modestly with his parents in a small village tucked in the rolling green hills of South Wales, United Kingdom. He is a gifted storyteller, digital artist, and inspiring poet. He loves rugby, European football, and Pepsi Max. He is skillful with computers, gaming consoles, and the online community. Though somewhat bashful, he is passionate, thoughtful, and determined. What makes Ian unique, however, is that he is a trailblazer who doesn’t sit still, so to speak, as he lives bravely within the clutches of Duchenne Muscular Dystrophy.
Ian courageously published his life story in a book he wrote, titled DMD Life, Art & Me (Grosvenor House Publishing Limited, 2010). When I learned of Ian’s book, I immediately ordered a copy on Amazon and then listened for the mail delivery truck every day. I wanted to know what Duchenne had in store for my son, Alex, who also lives with DMD. I wanted to learn more than what the doctors or various Duchenne organizations could tell me. I wanted to read a personal account from the perspective of someone fighting the battle. Needless to say, when the book arrived after its journey across the pond, I dove right in.
Ian organizes his story in chronological progression of his life, and begins with his birth in 1984. He quickly moves to his Duchenne diagnosis at age eighteen months, and then describes each year of his life with Duchenne up to age 25, his age when he completed the book (note: Ian is currently writing an update to account for the last six or so years). What’s amazing is that Ian wrote his story while in his mid-twenties, experiencing the full force of Duchenne.
For perspective, Ian’s body is stationary save some facial expressions and slight finger movement. He lives with near constant ventilation and frequent suctioning of secretions from his lungs. He has difficulty speaking clearly because his tongue is a muscle, too. His hands rest tightened, clenched, and locked. Despite all this, Ian writes honestly about the physical and emotional toll of Duchenne, with no holds barred. It's a deeply personal account of his life with Duchenne and everything human in between.
When the book arrived, I naturally jumped ahead to chapters detailing ages sixteen and seventeen, to gauge Alex’s journey with Duchenne. I wanted to learn what Ian experienced at these ages to prepare myself for the battles ahead, as if battles so far have not been challenging enough (spoiler alert: it's only just begun). Thankfully, Ian prepares the reader by entitling that chapter of his life as The Ugly Monster Rears its Head. The Monster, in this case, is Duchenne. It’s stealthy and relentless, and Ian’s descriptions are true to form. I sat deep in my reading chair with eyes wide open as I read how Ian experienced at age seventeen exactly what Alex’s pulmonary doctor warned us about just a couple months ago - pneumonia and its devastating effect on a boy with Duchenne. The timing could not have been more appropriate, nor worrisome as Alex turns seventeen in April.
After reading about Ian’s multiple hospitalizations for pneumonia and difficult recoveries, which lasted nearly a year, I circled back to the beginning of his book hoping for a reprieve from the life-threatening rollercoaster. In hindsight, perhaps I should have started at Page One from the outset as Ian’s story begins graciously and eases the reader into life with Duchenne, as experienced.
Throughout the book, I recognized various milestones within Ian’s transition from standing to sitting. I recognized his frustrations of not keeping up with his friends. I recognized his new life in a power wheelchair. I recognized his home modifications including a ramp, hoist, and elevator. I understood the time-consuming challenges of getting dressed, out of bed, into his power wheelchair, out the door, and into an accessible van for a simple trip to town. I understood when I read of the obstacles his family faced in public education, transportation, and general understanding of a kid with Duchenne. The challenges are many, and Ian describes them openly.
Ian writes of the happy times, too. I smiled reading about his family’s trip to Disney in Orlando, Florida, which reminded me of our recent Dudes Trip 2k15. I admired how Ian met the Prime Minister at 10 Downing Street, took part in his sister’s wedding, and delighted in the birth of his nephew – stories that help you forget about Duchenne for a while.
Nonetheless, the darker side of Duchenne is ever-present and unavoidable, and Ian holds nothing back from his descriptions. I nodded with understanding when Ian described the decreasing circles of his world, including frustrations of immobility, declining number of friends, and growing isolation. I cringed when reading about how doctors cut his hip flexors, hamstrings, and ankle tendons to prevent contractures, and his lengthy recovery in bed. I held my breath when he described his inability to cough productively, having suction tubes forced down his throat to clear mucus from his lungs, and fighting to survive his multiple battles with pneumonia. I took note of his lifesaving tracheotomy to help what is now a routine lung clearing procedure that his mother performs every day. I worried when I read about his exhausting heart palpitations that induced incredible episodes of panic and trips to the emergency room for fear of heart failure (note: Ian reports his heart is doing much better these days).
Ian also details the emotional side of Duchenne, the side you seldom see. He describes his challenging search for love, the heartbreaks, and periods of self-doubt. He writes of struggles he and his parents faced with his daily care, including toileting, feeding, and grooming. He writes of being unable to leave his second-story bedroom for eight weeks while waiting on parts to fix his broken elevator. He writes about watching others move on with their lives, while he grew weaker and more isolated.
My heart was heaviest when I read how the weight of Duchenne hangs over Ian every day. He doesn’t know when his time will come; none of us do. But, with Duchenne, the threat is constant and unshakable. Ian writes that he experiences days when he feels life would certainly end soon, but then doesn’t. Other days, he is certain to feel well, only to suffer a painful reminder of Duchenne’s cruel presence. Although the feeling is something he has learned to live with, Ian describes how worry and acute concern for life is a heavy weight to shoulder. He writes of the expectation of positivity and the burden it carries as he lives with Duchenne.
Yet, what struck me most about Ian was his ability to persevere while in the grip of Duchenne. Despite Duchenne’s hardships, Ian published his story, one keystroke at a time, determined to provide a road map for others following his path. He has created videos and participated in documentaries about life with Duchenne. He has written a blog on his website since 2012, and updates it often for the world to see. He has created art on his computer for over a decade and sells it online with earnings benefiting Duchenne children and their families. And beautifully, despite his challenges, Ian doesn’t give up his fight. Today, Ian is still writing and painting, and does with help of eye movement technology (i.e., a blink for a key stroke).
Think about that for a moment, when you feel the need to complain about life’s difficulties.
If you are seeking to read of a unique perspective of life, I highly recommend you consider Ian’s story. It magnifies endearing qualities of the human spirit, like love, kindness, and perseverance in the face of pain and heartbreak. It reads of devotion and determination. It reads of hope. Ian displays these qualities, and more, as he refuses to let this monster of a disease stop him from enjoying life to the fullest.
His story IS Duchenne. It's not always pretty, but he shows that it can be beautiful.
So, thank you, Ian of South Wales, for your determination, perseverance, and gift of the human spirit! You are an inspiration to many in this world.
Including me, your new friend David of Cincinnati, Ohio.
For more information about:
Ian’s personal story, visit http://amzn.com/1907652337
Ian’s blog, visit http://inspiredlifebook.blogspot.co.uk
Ian’s artwork, visit http://www.redbubble.com/people/thebigg2005