When People Think My Brain Injury Is Just Smoke and Mirrors

On October 29, 2006, approximately a month after my 17th birthday and the start of my senior year in high school, somewhere in between 1:50 and 2:30 in the afternoon, I was involved in a very serious road traffic accident (RTA) and sustained head trauma. This head trauma, I would come to discover, had a name: diffuse axonal injury (DAI); in other, less complicated words, brain damage. It is the most common type of brain damage for someone who was a party to an RTA. With DAI, the damage isn’t localized to a central reference point; it is spread across several hemispheres of the brain.

While I was recovering in a rehabilitation center from a three month-long coma that followed on the tail end of the RTA, I was treated with a deference that bespoke a toddler. I had stuffed animals waved in front of me as if I wasn’t aware of what they were. It seemed everybody I met was treating me as if I were mentally challenged. One could actually see the effects of my disability — I was in a wheelchair. One could hear the effects of my disability — my voice was hardly above a whisper.

My voice wasn’t always at a whisper level. It was one of the several end products of the RTA. I wasn’t breathing on my own following the accident, especially not with a punctured and bruised lung, three broken ribs, a right iliac (hip) wing fracture, and a grade two (moderate) liver laceration. In order to allow me to breathe once again, a medical professional had to perform a tracheostomy, a surgical procedure during which an incision is made in one’s trachea (throat). Once the incision is made, they line the inside of the opening with plastic tubing in order to provide the airway necessary to breathe.

When I woke up from the coma and discovered this “thing” about the size of a bottle cap, completely alien to my body and lodged in my throat, I tried to pull it out. I didn’t realize what it was, nor did anybody tell me what it was. All I knew was that it was entirely derelict to my body and it needed to leave. When I did start pulling on it, hospital staff promptly stopped me, which angered me. Why couldn’t I take this thing out of me? It’s not your body, it’s mine. Since when did I lose my authority to do as I wished with myself? Wasn’t this unconstitutional? The irony of it was I lived in New Hampshire, the “live free or die” state.

I had the trach in my throat ever since I left the acute care facility (the hospital I was sent to directly following the accident). As I’ve mentioned, my coma had lasted three months. I finally had the trach taken out the third week of January, which was going on about four months. When a tracheostomy is performed, it is only supposed to be temporary; it is only supposed to be an emergency procedure. Because I had a trach for nearly four months, it caused the paralysis of my voice, which was originally diagnosed as paresis, or weakness of the vocal folds.

My voice was diagnosed by my SLP, or speech language pathologist (speech therapist) at the rehabilitation hospital by him looking in a book and pointing it out as we sat in his office, which looked like a study in a mansion. The rehabilitation hospital looked like a home. It had the look of a rustic resort. It was placed in the mountains, overlooking a valley and built on a precipice.

I realized just now as I write this that it should have disconcerted me that the place looked very home-like, because if it looked like a home, it probably meant I was going to stay there. This realization also bespoke the severity of my condition – it felt like the medical professionals had given up. My injuries must have seemed at the point where recovery did not seem possible, which is preposterous to me because even though my grip on reality was slightly askew (I thought everything was a dream for a little while when I woke up from the coma), I was still of a conscious mind. I still could make (what I thought were) reasonable decisions and make fair judgments. The rehabilitation hospital looked like a home, and many of my fellow inpatients housed there were in a persistent vegetative state. It’s horrifying to me that I was supposed to spend the rest of my life in a place like that without my condition improving, just like the majority of inpatients housed there.

The auditory properties of my voice led me to think about the transparency of some disabilities, such as DAI. The general opinion of disabilities is that they must be seen in order for them to exist; otherwise the disabled person must be faking it. In a perfect world, all disabilities would be treated equal, but this isn’t the case.

Human beings are visual creatures; in other words, we often need to see it to believe it. The same concept applies to disability. If you’re not visibly struggling with your disability, how do people know you have one? Sure a person could “fake” having a disability for personal gain, but that’s rare. You have to take people at their word when they say they are disabled. I know I do. For example, I was standing in the parking lot of a grocery store the other day when a person emerged from a vehicle that was parked in a disability space without it looking like she had a disability. I didn’t think anything of it, but fellow shoppers who had also seen this muttered quietly, “She doesn’t look ‘handicapped’ to me.”

To hear that just broke my heart. She doesn’t “look” like she has a disability? What should a person with a disability look like? The universal symbol of disability is a person in a wheelchair. Should a person have some sort of physical ailment that makes them “look disabled?” What if that person, like me, had a mental disability? All of these questions flooded my mind. All over a simple matter of a  parking spot. She could have been faking it, but in all honesty, I don’t care. I believe you should always assume a person is disabled when they say they are. There are more cons than pros to faking it.

Although I do have issues with people not considering my disability legitimate, I also have this voice of mine. Complain about it as I may, this voice lends credence to my invisible disabilities. If one doesn’t see signs of disability, how do they know you’re not faking it to get that parking spot? I have the appearance of being “normal,” but when I speak, I’m revealed; whatever situation I’m in becomes acceptable based solely on the way I sound. I just can’t help but think I am living a life of smoke and mirrors. I’m a disabled person of the intellectual variety, and people think I’m faking it, like how onlookers thought that woman was for her parking spot.