By Mark E. Smith
Facebook and disability – they’re both masters of illusion, where publicly you never see the whole picture of a person, just the best parts possible. But, what happens when you remove that curtain, where life isn’t glamorous postings or a guy in a power wheelchair, wearing a suit and tie, whizzing by you at work?
We really do live in a kaleidoscope culture, where people only want to see and present the pretty parts of life. The real and gritty parts are scary and painful – and yet all so real. None of our lives are pretty and perfect all of the time. In fact, they can often be messy and miserable. And, what I’ve learned is that the pretty and perfect parts don’t unite us; it’s the messy and the miserable that do – because they’re heartwrenchingly real. We can only relate to the pretty and the perfect to a limited degree. However, the messy and the miserable is often where life lands us – and we all can relate to that. In this way, there’s a reason in all of our lives to shatter the illusion and get real, where we have the courage to expose the messy and the miserable, and that’s when we truly connect with others.
My own Facebook and disability form an illusion. No, not intentionally, but by the nature of it all. My colleagues see me poised and polished in my career – perfect hair, whizzing by in a power wheelchair – and my Facebook shows an amazing life. So, if that’s the pretty and the perfect, where’s the messy and the miserable come in?
All over the place! I attended a gala recently and, if I say so myself, I looked GQ-hot rolling in. But, what no one saw was what it took me to get to that point. I’m no GQ model. Rather, I’m a guy with severe cerebral palsy whose life can be messy and miserable. Like many with complex disabilities, I had to build in my “bathroom regimen” in the process of getting ready, which takes time and is physically taxing. Then, the reason why I was polished and on time at the event was because my daughter and fiancee helped me get dressed. I can do it on my own, but it takes hours, so the more practical of the two options was accepting the gracious help of my daughter and fiancee to get me ready.
But, we never have these conversations, right? It’s not like someone says to me at a gala, “Mark, you look so handsome tonight.”
And, I reply, “Thanks. I struggled through a bathroom regimen this afternoon, then my fiancee buttoned my pants, tied my shoes and styled my hair….”
Yet, that’s the reality, and when I think about that gala, I know that many people there had messy, miserable aspects to their lives, too. After all, life isn’t easy for any of us. Maybe there were couples who argued like mad on the way, but walked in with smiles. Maybe they were couples who drove there in a car with the gas light on because they’re broke, but walked in like a million bucks. Maybe someone recently lost a family member and it took all of his or her strength to get dressed up and attend such a chipper gala. And, how many individuals there had disabilities or conditions unseen, from depression to epilepsy? I know that the beautiful lady on my arm – my fiancee, the one who helped me face my challenges to get to the gala – had her own challenges that eve, ones that no one knew, as she continues recovering from a recent cancer-related surgery.
The fact is, everyone’s life can look pretty and perfect on the outside. But, how many of our lives truly are? Life is often messy and miserable – and, as a result, absolutely beautiful. See, when we let down our facades, and with grace and dignity discuss the messy and the miserable in our lives, it makes those around us let down their guards, and that’s when we truly connect with others. And, when we connect, we’re not alone in the messy and miserable, and it makes all in our life – the messy and the miserable – dramatically easier to cope with.
And, so at that gala, I made my own silent toast to the messy and the miserable hidden beneath the facade of the pretty and the perfect – because we’re all in the trials of life together.
PowerchairDiaries 
Ah, Mark…once more you hit the nail squarely on the head. Here’s to the ‘ being messy and miserable’ days and the struggles we go through to appear flawless and ecstatic. .