(From TEDx Furman University, “Shatter” – March 21, 2015)

On March 29, 2005, I survived a serious car accident. After a long night of dedicated alcoholic consumption, I trusted someone who said he was “totally cool to drive”. He wasn’t. And less than 48 hours later, I woke up in an intensive care unit.

I am fortunate in that I have no memory of the car accident. My first memory is of a male voice speaking to me out of the darkness somewhere near my feet. The voice told me to stop chewing on my breathing tubes, and I heard the sound of a ventilator, forcing me to take calculated gasps.

My mouth was so dry. I tried to say the word “water,” but the sound that came from me was completely inaudible. I tried to wave my arms or kick my legs, but nothing happened. I thought I was tied down. I couldn’t speak. I couldn’t scream. I couldn’t move. I was trapped, and I was terrified.

Over the next few days, I learned that I had broken my neck, and that the reason I couldn’t move was that I was paralyzed from the neck down. Among other serious injuries like broken ribs and having my scalp peeled back from my skull, my neck was shattered in two places. I am technically a quadriplegic, with varying degrees of paralysis from the chest down.

I have a spinal cord injury at the level of my fourth and fifth cervical vertebrae. After a spinal cord injury, messages below the level of injury are unable to get past the damage in the spinal cord. This means that sensory messages, like hot, cold, touch, pain, and pressure; and motor messages, which tell my body when and how to move, are lost below the level of the injury.

My type of injury is referred to as “incomplete”. Clinically, this incompleteness means that there is the possibility for recovery of both movement and sensation. And it has happened for me, at first in leaps and bounds, and then in baby steps, bordered by plateaus.

I’ve been horribly and relentlessly insubordinate in my role as a disabled person. Through ten years of seriously hard work with a great team of doctors and therapists, I have regained much of my body’s lost ability to function. I learned to roll over again, sit up again, feed myself again, bathe myself again, dress myself again, stand again, and ultimately, take a few steps again.

I live a completely independent life. I will always need a power wheelchair to travel longer distances, but I can walk with a cane. It’s a slow, deliberate walk that falls far short of anything that might be called graceful, but it’s mine.

I also only have the use of my left hand. Of course, I’m naturally right-hand dominant, so I’ve had to learn to write with my left hand. I can put on makeup and zip up a coat. I can even put on a standard behind-the-back clasp bra with one hand. That’s expert level. The first time I put on a sock after my injury, it took me 30 minutes. It was so frustrating, but I was determined, and I learned from it. Now it doesn’t take me any longer to put on a sock than it does you.

When I broke my neck, my whole world shattered. I shattered. But I picked up the pieces and tried to build something beautiful from the chaos – not the whole I once was, but a new puzzle to put together over time. I had to rethink the rest of my life. I had to confront my own misinformed and discriminatory views of disability. I had to challenge the long-term prognosis I was given. And, every day, I have to shape and reshape the opinions of strangers.

There are so many wonderful people in the world who don’t lose their minds when they see a wheelchair. These are usually people who have a friend or family member who is disabled.

In general, though, I encounter two different types of people. First, there are those who go out of their way to evade and ignore me in public. These are the people who lead their children away from me, and tell them, “Don’t stare”. Meanwhile, the parents stare, unabashedly or in quick glances, when they think I’m not looking – at my legs, my hand, my wheelchair, my cane – as they try to mentally diagnose me.

I must admit, I was that Mom before my injury. I had had very little exposure to people in wheelchairs, and I honestly had no idea how to act around them. I didn’t want my daughter to say something blunt that might embarrass me – as children are prone to do – or ask a question I was ill-prepared to answer. Unfortunately, in trying to be polite, we are inadvertently teaching our children that we just don’t talk to or about people in wheelchairs, that they are to be avoided, that to acknowledge their presence is to be disrespectful. By telling our children not to stare, we are also teaching them not to see.

The other type of stranger I encounter in public are those who trip over themselves to give unsolicited help the lady in the wheelchair. At home, I do all the things that everyone else does. I cook dinner, do laundry, vacuum the carpet, clean the house, walk the dogs. I drive – I started driving less than a year after my accident – and I do the majority of our household shopping. But as soon as I get out of my car and start to unload my chair, no matter where I go by myself, I get inundated with offers of unsolicited help. As if I’ve gotten myself all the way to the grocery store, and then suddenly realized I didn’t have a follow-up game plan.

We are taught that the “right” thing to do when one perceives that a disabled person is struggling is to help. I get that it’s natural to want to help someone who appears to be struggling. It is not natural at all to be on the other end of that offer, over and over, every single time I go anywhere alone. I don’t enjoy being put in the position of declining help five times while inside any building. It’s uncomfortable and invasive to my privacy and anonymity, but you’d be surprised how many people get offended when I’m not incredibly grateful for the help I didn’t want or need.

I appear to struggle often, when I’m really just doing things differently. It sometimes takes me awhile to do things. I often have to try 2 or 3 different methods to accomplish a task before I figure out what works. I work hard at that. I enjoy the challenge, and I didn’t get here by relying on others to do things for me. There is dignity in the struggle, and there is pride in the accomplishment. Unsolicited help robs me of both, renders me ineffective, and isn’t helpful at all. I know you don’t mind helping. I mind.

A lady told me recently that I was a real inspiration to her. I always cringe when I hear that. First of all, I’ve always considered my narrative more cautionary than inspirational. Second, it always feels a little bit like a requirement for being worthy of all those extra parking spots. I said to her, “I appreciate it – I do – but I really don’t want to be your inspiration. That’s just way too much pressure.

And she replied, “Yeah, that’s the thing about inspiration. You don’t get to choose who you inspire. I get to choose who inspires me. And you inspire me.” That really stuck with me. I’d never heard it expressed quite that same way. And I thought…yeah.

I went to the State Offices in Nashville a couple of weeks ago. My husband and I recently bought 85 acres in the middle of nowhere Tennessee – because we’re certifiably insane – and I went to turn in a tax exemption application for farm equipment. I entered the building, and waited patiently for either of the two security officers to run me thru the security gate, but for several minutes they were inexplicably just leaning over a counter. Finally, one of them deigned to notice me.

At which point she turned to the man who had entered behind me, and said, “Can she stand up?” I said, ‘She CAN stand up, and understand words, and she has no idea who this man is.” The guard waved her magic wand about my body and, once cleared, I headed over to the sign-in sheet. Clipboard in hand, she asked, “Do you know how to sign your name?” You know, I actually do. Crazy, right?

I went into my appointment, and only half-heard it, because I was trying to calm myself. “Maybe she was raised by wolves,” I thought. “Maybe she was raised by assholes. Maybe she’s just never left her cave before.”

But as I was leaving, her partner asked me, “Do you want to wait for your ride inside or outside?”

I drove there! I won’t disrespect the fine people of Furman by telling you how I responded. Let’s just say I stopped this short of being tazed. It wasn’t my finest or most graceful moment.

I still get worked up just thinking about it. But I can’t. I can’t get worked up. I can’t let these things get to me, or keep me from doing all the things I want and need to do. I must use it. I have to turn it into motivation, to show such people by example how misinformed they actually are – as a side effect of just living my really happy, empowered, confident, independent life.

The choices after acquired disability are to push forward or retreat. Adapt or perish. Neither choice is good, and both are difficult. But one is always necessary.

I’m not required to be anyone’s inspiration. And I’m not required to be anyone else’s hero. I AM required to be the hero of my own life. I must do what I must to continually push forward.

These things – anger, fear, frustration, resentment, depression, self-pity – these things are far more paralyzing and disabling than my spinal cord injury has ever been.

In general, I’m happy with things, with myself, with my injury. I feel strong, sexy, powerful, and independent. I embrace life, injury and all. But that’s not to say that it’s easy or perfect. There are also moments when I am frustrated with my physical recovery in ways that would kill me if I allowed myself to stay in that emotion.

I can’t allow myself to wallow in the luxury of, “Why me?” Why NOT me? The only thing I allow myself to focus on is “What’s next?” I’m the only one who is responsible for, and capable of, making my life something that I can be proud of. Why me? Because I’m the only one who can.

There was a period of almost two years when I had really given up. It was a slow decline, so I didn’t even realize it as it happened. Before that time, I never knew if I was an apple or a pear when finding my “perfect fit” in Lucky or Cosmopolitan. I found out that I am a pear body shape, and now I know which fat jeans to wear.

And then one morning I had an epiphany – just the kind of thing I’d always believed was a complete load of shit that never really happened to anyone. I was overcome with this deep, heavy, guilt and anger, coupled with the realization of exactly how much time had passed me by. The guilt and anger weren’t directed toward the accident itself or toward my injury, but at what I had allowed myself to become. I asked my daughter to take a picture of me. When she asked me why, I said, “Because I never want to be this person ever again.” I still have that photo, but I don’t need to look at it to remember who I don’t want to be.

I’m not proud of that really low point in my life, when I had become complacent and acquiescent. But I recognize that it was part of my journey. And now I know which direction I’m heading. Always forward, checking the rearview mirror from time to time, but only as a reminder of how far I’ve come. I can’t take it back, but at least I know the worst that is possible. I can feel the failure, own it, and do better. Require more for myself. These aren’t things I live without. They’re just things I can no longer afford to live WITH.

I believe that there are threshold moments in every life – when you find your circumstances and your self-image so broken, so disjointed, so shattered, that you must either choose to continue a pattern of self-defeating behaviors, or choose to become the hero of your own life. No matter which one you choose, in doing so, you WILL find that you inspire others to do the same.

The organizers of the wonderful event asked me how I thought I could change or affect the world. The only thing I’d like to bring to the world is a new perspective. I like to make people question their preconceived notions, about themselves and about each other. I’m able to do it loudly and forcefully, but I prefer to do it through example, and a little bit of humor. Laughter is an invaluable doorway to meaningful change, which is wonderful, because my life is often ridiculous.

I’m able to see that: the laughable in the everyday. From my wheelchair, I also mostly see the world at ass-level, and I’m sure there’s a correlation between the two. My body is sometimes inattentive to my wants, but my mind is sharp, my sense of humor is honed, my wit is a razor…and I am the hero of my own ridiculous and shattered life.

You must decide who you want to be. Sometimes, you have to decide who you won’t be even one second longer. You must make it happen, even though it is so incredibly difficult, and often painful; even though it’s so much easier to let others do it for you, or instead of you; no matter your circumstances; no matter what life throws your way; no matter what others say or believe about your assumed weaknesses and limitations; you must embrace the struggle. Squeeze out every small victory. Make them see you. Let them stare.

So the big question is, what SHOULD I do for people in wheelchairs?

Here’s the simple answer: Nothing. Not a damn thing – unless and until you are asked. Interact with me the same way you would with my 41yo able-bodied adult male husband.

You would say hello. You might ask how he’s doing. You might compliment his shirt. Presumably you would not compliment his general ability to shop, and comment how wonderful it is that he gets out in the world. You would probably not call him “sweetheart”, nor open doors for him, nor ask if he needs help when he’s just closing his own car door. You would absolutely not grab his purchases off the counter without permission and ask “Where’s your car?” (unless you are a bagger at a grocery store, but certainly not when you’re just another customer).