An Unimaginable Milestone
I still look at my hand and expect it to move. In moments of sleeplessness or experimental fortitude, I still harness all of my effort into trying to will my body to actuate the thoughts and motivation in my head. I still do these things 30 years after my accident – 30 years after the accident that, with neither warning nor subtlety, left me paralyzed below my neck and reliant on a ventilator to breathe. 30 years is an achingly and astonishingly long time, but it is not nearly enough time for the extremity and aberration of paralysis to seem natural. It is not nearly enough time to forget life as it had been nor to stop longing for a time in my life when things were simpler and more frivolously taken for granted.
This weekend marks the 30th anniversary of the day that serves as my life’s most salient inflection point. The demarcation between an existence of innocence and untestedness, and an existence characterized by the functional opposites. It has been 30 years since I gave someone I loved a hug. It has been 30 years since I was able to dance to my favorite songs. 30 years since I have been able to eat or bathe or dress on my own. For three decades, I haven’t had the individual liberty to storm out of the house in abject frustration, jump up on an unwitting chair in exhilaration or exasperation, lie on the cold tile floor just to feel the invulnerability of the ground below me. These are parts of life that I miss dearly. These are parts of life that go unmentioned because of their banality and because of the way they simply bleed into the fabric of each day.
Nobody really asks me about these things. I am asked many questions about my life and the granular details of it, but nobody really takes the time to think or ask about the minutiae of life that give it meaning and humaness. People don’t ask about these kinds of things because they are so fundamental to our human experience and so foundational to how we live our lives that they almost go unnoticed. Unseen. Hidden until their inconspicuousness is replaced with absence. I never would have expected that those would be the parts of life I would miss the most, nor would I ever have expected the magnitude of the cumulative sense of loss that these individual human moments create in the aggregate.
There are at least two ways by which people tend to view my life: one of untimely tragedy and, as a result, weakness, and one of strength, empowerment, and creativity in the face what some might consider tragedy. One vantage point puts a telescopic focus on the absences in my life, and the other puts a focus on what has been drawn upon to fill those absences. In reality, though, the two exist in tandem. In fact, I don’t know if the former could exist without the latter.
When I look back on pictures of me as a child, completely unaware of life that was ahead of me, I am often struck with whispers of sorrow but also deep reverence. When I look back on pictures of me as a child I am, to this day, inspired by the girl I see – not yet aware of the ways she would be tested nor strength she had within her. I am inspired by her unwavering will to fight, and to fight with every ounce of fortitude and resolve that her 11-year-old body did not even know it had within it. And this strength that has come from reserves that were invisible has been at the heart of each day of my life for the past 30 years. I can’t imagine it any other way.
In these past 30 years, I have seen and felt heartache sometimes beyond what I think anyone should have to bear. I have experienced times in which I thought the world was simply going to pass me by or bring me to my proverbial knees, and that I had no real place in it. But, living 30 years with quadriplegia is not a milestone that is often celebrated – or observed or remembered or whatever the appropriate verb might be – because so few ever reach it, which is itself a human tragedy. I know, though, that there is no way to live 30 years with quadriplegia without having a will to fight – to fight for a place in the world. To fight for the aspects of yourself that you know to be true. To acknowledge the most difficult aspects of our realities and to reduce them to the least impactful role they can play in our lives. To understand that the scars on our bodies and on our hearts – the wheelchairs, the braces, the hearing aids, the speaking devices, the therapies, the medications, the hours of learning to live and live differently – are not sources of weakness but instead immeasurable sources of strength and are the stories that our lives tell. I have learned that lesson over and over again over the course of these 30 years. It's a lesson that needs reinforcement. It's a lesson that is not intuitive or obvious in our social construction. It takes repetition – sometimes 30 years of it – but it's one that I could not understand myself fully without having learned. Just yesterday, I mentioned to a friend of mine that it is not necessarily the struggles we face, themselves, that are of consequence but how we view them as opportunities to see ourselves as and be the people we never knew we could be. Stronger. Resilient. Richer and deeper because of the experiences we have undergone. Challenge as introspection. Challenge as a mechanism of self-awareness. Challenge as a better way to understand what it means to be human. My life is full of challenge but, as a result, it is also full of its functional simile and potential reconstruction. I am so, so thankful for that.