Reach beyond your limitations

“It was a winter morning. The journey to London’s specialist hospital felt eternally long. I had a subdued feeling of being ill-prepared for what lay ahead. On the hospital ward, I sensed the awkwardness of the staff bustling around us, softening the moment and distracting from the impending news. We were there to receive lab results. I felt sick, my mouth dry and my whole body tense. Similar to when the doctor had taken the muscle biopsy several weeks before. The specialist, in her early fifties and slightly aloof, dressed in clothes to match her age and disposition, engaged in a few moments of polite and gracious chat. Coldly, she announced the shocking news that my family had been dreading. “There was no dystrophin present in the muscles”. The ambush, poised in silent preparation for the strike, exploded rudely into our world. Just like that, the fatal disease established its impenetrable stronghold. The destructive muscle wasting condition, was now fortified with a relentless and unwavering determination to take a life. The life of my six-year-old son Ben.”

2019

I comforted my sobbing wife, hushed tears rolling down my cheeks as I soothed and reassured her. Ben’s diagnosis of Duchenne Muscular Dystrophy (DMD) was a hammer-blow to our hearts. The brutal enemy was upon us. The challenges Ben would face were unknown, unexpected, uninvited and unwanted. An utterly agonising and unwelcome guest.

On the way home, we visited my Mum who had been looking after our eldest son Conor. He was joyfully playing with his cousin Joe, both now joined by Ben. My Mum moved away from the boys and asked me for the outcome. As I finished the sentence, her eyes filled with sorrowful tears; she was distraught. During her physiotherapy career, she had treated many patients with DMD. She knew what to expect. I hugged her for a moment, already acclimatising to my new role of soothing others – reluctantly thrust upon me.

Overcoming the emotional trauma of a child being diagnosed with a life-limiting condition, takes a significant depth of character. My shallow life experiences up to that point revolved around trying to convince, persuade and influence people to buy goods and services. None of what I had done was particularly meaningful, but I had been using my skills and talents in a productive way. I had experienced moderate success in my career, but had languished with a lifelong struggle of binge eating and junk food.

Like most parents of a disabled child, I was resolved to confront the monster full on and deflect my sadness, launching into solution mode. I had to focus on being positive, a natural disposition that now intensified and escalated into a hard protective shell. I made contact with a charity who guided me through the current scientific research. At that time, it didn’t take very long to read the full dossier of research. It was a small list. I attended the annual conference to receive scientific study updates and meet other DMD parents on the same loathsome journey. Back home, my loved ones still reeling from shock, were coming to terms with the new reality of Ben’s diagnosis. DMD relentlessly and silently continued the slow erosion of Ben’s body and our hope.

On the surface I was thinking positively, but I was crumbling inside. I concealed my fears, frustrations and sadness under the veil of my brave coping mask. I would lie awake at night – the overwhelm gripping me. Why was this happening to Ben and my family? I longed to swap places with him. DMD was unaffected by my thoughts or emotions; it ignored my endeavours. It was winning. To soothe my suffering, I sought comfort in my reliable companions, the addictions I knew, trusted comrades in the battle. For a few moments, I would escape my mask to indulge in junk food. Nothing else existed outside of those secret binges.

DMD is brutal, unrelenting and never wanes, retreats, surrenders – it just pushes on. Its unstoppable bluntness is a cold and sobering reality. But, it also has a polarity – gently awakening people to new possibilities. Just when you feel exhausted from the struggle to cope, soothe and remain positive, a tiny glimmer of hope emerges. I got involved in a DMD led campaign to lobby for more funding into scientific research. Encouraged by the responses and the momentum the campaign had achieved, I shared the campaign with family and friends. I felt I was achieving something. I was so grateful for the support of the people who had made the effort. That was the first time I had an awareness of the depth of human kindness. There were new comrades willing to help and join in the battle. I was NOT alone.