A piece originally written for an essay contest dealing with the true meaning of love. Today seemed like the right day to release it to the world.....or at least the tiny portion that might run across my blog.
TIRED STILL, YET TIRED NOT FROM LOVING YOU…..
The morning of October 30th, 1998 saw the venerable Holy Name of Jesus church filled to standing room capacity. I hadn’t seen that happen in my entire twenty-three years. As the gathering left the church, the line of cars stretched nearly a mile and a half, slowly crawling to his final resting place. I struggled mightily to maintain my composure and remain strong for my family while I witnessed my hero and my best friend being laid to rest. I watched awestruck as the scores of people paid their respects on their way out of the chapel, and I quickly became aware of the massive impact his life had made on the world.
Four nights prior, however, his life made an even bigger impact on me – he allowed me to discover what it truly means to love.
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My younger brother Stephen was born with a fatal genetic disease called Cystic Fibrosis, or CF for short. At the time of his birth in 1978, little was known about treatment for CF, and even the luckiest of children didn’t generally make it further than five or six years before the disease ravaged their lungs to the point of ending their lives. In Stephen’s case, we were actually unaware of his disease until he nearly passed away at only six months old. In hindsight though, we were lucky for the timing of his arrival; great strides were about to be made in research toward new treatments for the disorder, giving us hope as he grew that perhaps Stephen could beat the odds.
Indeed, he made a life out of beating the odds. Stephen refused to be limited by his disease, no matter what it might cost him. Despite repeated pleas by our parents and his doctors for moderation, he insisted on living his life to the fullest extent possible. He played competitive sports, including hockey and basketball, and was always among the most intense and hardest working participants. Auto repair was such a talent for him that it was a rare weekend that didn’t find someone begging for his assistance and expertise. But his real passion was the drums. Although was entirely self-taught and spent most of his time banging on secondhand equipment, he easily ranked as one of the finest and most creative rock drummers in our area and formed the backbone of an outstanding band.
His will to not simply live, but to live on HIS terms, was both inspiring and humbling. He refused to use his disease as a crutch, and wouldn’t even consider allowing someone else to decide he wasn’t capable of something he wanted to accomplish.
Far more important, however, was the way he touched lives. Even on Stephen’s weakest days he’d take time out to comfort someone in need. During his many hospital stays, visitors would usually have to search the hallways to determine which friend’s room he was in, because invariably he was busy putting aside his own problems to make someone else’s day better. Stephen never turned away a friend or family member in need of a good listener, and he was literally my hero more times than I could ever repay. He fixed my cars with me, gave me advice when I had problems and assisted me out of more difficult situations than I’d actually care to recall. As we grew older, he took the stereotypical “big brother” role far more often than I did, helping me battle through some of my worst decisions and most troublesome experiences.
Stephen’s passing crushed me – I felt a powerful emptiness without him. But his final evening in our midst had awakened me with that same kind of power.
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My phone rang fairly early on the morning of October 26th. It was my mother.
“You need to be at the hospital tonight. Stevie wants us all there for a small party before his surgery tomorrow.”
Stephen was having surgery in the afternoon on the 27th. His last several weeks had been very difficult, and this operation was a necessary step for him to have any chance to survive – his functions had deteriorated too far for medication to help anymore. And although nobody wanted to admit it, his chances weren’t very good either way; it was a risky procedure, and his body wasn’t very strong at this point.
But that wasn’t the topic on the lips of Stephen’s friends and family on October 26th. He wouldn’t allow it.
A “small party” turned into every close family member and friend who could get to the hospital that evening – over 25 people cramming into his hospital room and spilling into the hallway.
Stephen demanded a Polaroid camera for the evening; he wanted pictures taken with everybody that night. Memorable photos of him with his brothers, his best friends, our parents – everyone in attendance sat or stood next to him for at least a few photos; some serious, some more light-hearted and some downright silly.
The nurses and doctors who’d cared for him for so long and many CF patients who’d shared his journey joined us in the revelry as the entire seventh floor of the Children’s Hospital of Buffalo became one big celebration. We discussed music, favorite foods and our hometown sports teams…..laughed, hugged and joked…..and for one magical, special evening forgot about the worry and terror we’d all been feeling since the surgery had been scheduled.
Even on the night before he was scheduled for the riskiest medical procedure of his too-short life, Stephen possessed such a strong love for all of us that he provided us with one final night to enjoy his presence in our lives without thinking about the possibilities that lie ahead the next day. He knew quite well what his chances were, and I’m certain he was just as fearful as any of us - and yet he put all of it aside in one final act of pure selflessness.
And in the process he taught me the power of true love.
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Stephen didn’t even make it into the surgery – by the time the doctors had prepared him, his once-impressive strength had faded too much. He never regained consciousness. We spent the day and evening of October 27th at his bedside, praying for a miracle that wouldn’t come. He passed on shortly after midnight.
Over the next few days, my mother distributed the many photos from the party throughout the friends and family – as Stephen had requested her to do if he didn’t make it through the surgery.
I didn’t get the opportunity to thank him for the lesson he taught me, but it gives me some comfort to assume that he had a fairly good idea how his act would affect me. Stephen’s final gift to me was the ultimate “big brother” moment – he gave me the understanding I would need to carry on after he was gone.
