My Life With The Invisible Disability Of Traumatic Brain Injury
By: Saigon Flowr
Tags: Disability, Feature, Advocacy, Brain Body, Awareness

It’s impossible to really understand what it’s like to have a brain injury until you actually have one yourself.

During a trip to Vegas, a close friend and I had a meaningless disagreement about upcoming plans for the next day. Sleep deprived after a late night out partying, hungry and easily irritable, I blew up at him, throwing some money he had given me in his face, yelling about how I didn’t need him or his money or anybody for that matter. He was so hurt that he got up immediately, packed all his belongings, and left for the airport while my guy (his best friend since childhood) went after him to convince him to stay.

In their conversations, my guy tried to explain to him that what had happened that night wasn’t really me, that I didn’t mean it and my actions were a result of things I quite literally could not control. My friend responded with something that keeps coming up from the closest people in my life: He told my guy that he doesn’t “buy it,” because even though he knows what happened to me, he’s seen me go back to doing all sorts of things a “normal person” is able to do — like drive, go to school, work, and travel — since my initial injury. He asked how is it that I could do all those things reasonably well in his eyes, but couldn’t do other things. Then he asked my guy why he would want to continue being with “someone like that” with so many cognitive problems anyway.

This was coming from someone who was there when I sustained the injury that caused my brain injury. He had seen me in the ICU unconscious and unable to function when I woke up. He saw me at my physical worst, until I recovered enough to be put in a wheelchair. He and my other guy friends who would visit and keep me company while in the ICU helped physically spoon-feed me because I was incapable of feeding myself at the time.

How could I expect any other person who doesn’t know me very well to understand, if someone who was there when I first sustained my injury and witnessed first-hand all the suffering I had gone through couldn’t? How would an employer or professors or any new person I meet hope to understand the magnitude of my injuries’ effects on me, if my own friends and family who witnessed what happened to me couldn’t?

This lack of understanding is rooted in the fact that it’s impossible to really understand what it’s like to have a brain injury until you actually have one yourself.

Although rarely discussed in the news, almost anybody can get a traumatic brain injury, or TBI (an injury to the brain caused by an external force after birth) or acquired brain injury, or ABI (which includes all types of traumatic brain injuries, as well as injuries caused after birth by stroke or a loss of oxygen to the brain). Your life can be turned upside down at any moment — whether it’s from being in a car accident, falling down and hitting your head, being shaken really hard (as a baby perhaps), getting tackled during a football game, getting an infection, suffering a stroke, or simply getting bumped on the head.

Your life can be turned upside down at any moment.

Quite a few disabilities, somatic illnesses, and mental health issues have characteristics and symptoms that are very similar to those suffered by a person who has sustained an ABI or TBI, yet brain injuries are one of those “invisible” disabilities that often go unnoticed. It’s often almost impossible to even tell if a person has an ABI, unless there are any visible scars, symptoms, or flare-ups of subsequent issues related to the impact of the brain.

My ABI was the result of several contusions to my brain — my head, skull, and brain were cut with lacerations so long and deep that it essentially destroyed much of my cerebral cortex. It’s a wonder how I’m even functioning, to be honest — the doctors told my mama when I was fighting for my life in the ICU that if I ever did wake up from surgery, I shouldn’t expect much in terms of recovery because I could be non-functioning. They said I had sustained what was called a “catastrophic” ABI. It’s really just a fancy ominous word to describe the percentage of damage that had occurred within the four lobes of the cerebral cortex. Of the four, I had sustained lacerations that had damaged three of them: the parietal, temporal, and front lobes.

Since the cerebral cortex is responsible for all thought and action (controlling all voluntary actions, movement, hearing, vision, personality, emotions, language, and communication), an ABI can turn your entire life upside down. What’s worse is that the invisibility of the disability leaves you in a perpetual state of being questioned, excluded, and othered. You live a life that from the outside may seem “normal” when people see that your physical form is intact, yet your actions present many contradictions to the observer who is unable to understand the full extent of your injury. The fact is, physical impairments are what most people think of when they think of “disability.” Everyone else just kind of fades to the back, often living a life of invisibility, isolation, and obscurity.

The invisibility of the disability leaves you in a perpetual state of being questioned, excluded, and othered.

Those who know me pre- and post-injury may see me go back to what seems like normal functioning, like driving a car, but lack understanding that the ability to physically drive doesn’t mean that I don’t struggle cognitively with other things — like having to search 16 city blocks for that same car, because I cannot for the life of me remember where I parked. They see me going back to school, but don’t know that tasks which were once easy are now an everyday struggle that I could never manage without proper accommodations or strategies (like using screen readers and other adaptive technology to read or write). They don’t know that if I am lucky enough to get a job (given most people are not tripping over themselves to hire someone with a disability), it’s almost impossible to KEEP it seeing as how most employers don’t have any action plans or accommodations for people with disabilities — especially “invisible” ones.

Those who see me as someone who has their shit together, don’t know that my parietal lobe damage gives me trouble with depth perception and fine motor skills, like trying to put my front-door key into the keyhole or using my fingers in any intricate capacity. Or processing that the water I’m washing my hands in is so hot that it can burn my skin severely. I am at constant risk of injuring myself while doing everyday tasks like personal hygiene or cooking.

They don’t understand that my parietal lobe damage is also why sometimes I can walk without any giveaways about having a disability, but at other times, I wouldn’t be able to walk to my bathroom without requiring help or a cane — or that I may even be unable to move at all.

I am at constant risk of injuring myself while doing everyday tasks.

On a good day, you couldn’t tell any of that just by looking at me.

You can imagine how much this may confuse people or even make them angry when they see my otherwise “able” self in the priority line at the airport. The other day, someone who has seen me without a cane actually yelled at me for being a “fake” when I used a cane and was placed ahead of them in line.

I’ve been written off as “loud” and “aggressive” (a charge often made against assertive women of color of all abilities, which adds another layer to the prejudice that I’m subjected to — but that’s another story for another day), but they wouldn’t know that the reason why I’m loud is that my temporal lobe damage has left me partially deaf in both ears, or that my “assertiveness” is really problems with impulse control stemming from my ABI. People also have a hard time accepting my hearing problem because I don’t have any “visible” signs of having one, like wearing a hearing aid. Because my hearing loss is caused by damage to the processing of communication from my ear to my temporal lobe, instead of a physical problem with my ears, hearing aids can’t help me.

Like most people with frontal lobe damage, I have extreme difficulties processing emotions or maintaining the ability to carry out simple or immediate tasks. Frontal lobe damage also affects short-term memory and one’s attention span or interest in anything. And it blocks and/or inhibits appropriate foresight and balanced reasoning. Those of us with this kind of brain damage often get stuck on an idea or event to an extent that disrupts our everyday lives and relationships.

Many of these problems and symptoms bear striking similarities to mental health-related issues like depression or anxiety. And often, the effects of brain injuries and the lack of community support for those with them can cause depression and anxiety, compounding already existing symptoms. Traditional approaches like medication may not work in such instances, and alternative therapies like talk therapy, speech language pathology, coaching, and acupuncture — as well as precise, consistent, repeated, and manageable strategies taught and practiced daily — are some of the ways in which those of us with ABIs can try to get a handle on these unique difficulties. If and when we can, we can actually lead relatively successful lives.

Often, people with ABIs are accused of being contradictory or manipulative or fake. It’s not just the general lack of understanding of how ABIs affect an injured person that’s the problem, but also the denial of how much ableism plays a role in society. We do not realize that all disabilities, including those which are cognitive or emotional, need accommodation in society.

Society is programmed to understand injury as an either/or situation: You’ve either healed from an injury or you haven’t. There is no place for those of us who suffer long-term, and often permanent, effects from our injuries. As my friends and family watched me undergo the long process of healing my physical injuries, they couldn’t see that there were hidden injuries that would never heal.

Society is programmed to understand injury as an either/or situation.

My friend ended up staying on our Vegas trip, and we made amends — but it’s affected our relationship in ways neither of us has yet to fully understand.

People with these kinds of “invisible” disabilities will describe fading to the background, isolating themselves from the outside world, because it seems easier than having to explain over and over again the ways in which they are different or need support. It’s easier to be alone than to be constantly disappointed and misunderstood by those you care about.

This is why it’s important that we prioritize disability advocacy and activism — and expand our discussions of disability to those whose disabilities are not easily seen. While often overlooked, ableism intersects with so many other issues in society: issues like race, gender, and income inequality are significantly exacerbated by disability, and vice-versa.

ABI affects me and over 1.5 million fellow Canadians with 100,000+ new cases per year, and nearly 2.5 million people in the United States sustain ABIs and TBIs annually.

Brain injury research, prevention, treatment, and management are not a priority by governments and disability activist groups, but we can change that.

I encourage you to get acquainted with the realities and intricacies of life for women with “invisible” disabilities like ABIs. Help us to be seen. Educate yourself on disability, disability justice, and advocacy that is inclusive of all disabilities. Make space for women like me to tell our stories. Make room for us in your personal, professional, academic, or social circles. Please, see us.

For more information on ABIs, please check out:

Brain Injury Associated of America

http://www.biausa.org

Brain Injury Association of Canada

http://braininjurycanada.ca

Ontario Brain Injury Association

http://obia.ca

CDC website (Center for Disease Control & Prevention)

http://www.cdc.gov/traumaticbraininjury/get_the_facts.html