From Victim to Survivor… to Human

… or maybe we become something MORE.

I’m reading a paper written in 2010 by a sociology student called How Memory Affects Sense of Self: Stories of Traumatic Brain Injury. I haven’t gotten far, yet, but it’s pretty good. It’s a different sort of “read” than the published scientific papers I’ve been reading, and it’s interesting to see how someone well outside the field of neuropsychology or psychology or neurology, who’s just encountering TBI for the first time, experiences TBI survivors.

One of the things the author mentions is the use of the word “survivor” instead of “victim”. She talks about the folks in her study as “survivors”, because it “is more empowering and positive than ‘victim’ which sounds like something to be pitied.”

Aside from empowerment, I believe there’s an important difference between the ideas of “victim” and “survivor”. And I’ve been thinking that there’s even something beyond that, which is worth considering. I’m not sure if there’s one word for the “beyond-survivor” idea, but I still need to consider it.

These three concepts – victim, survivor, beyond-survivor – all have to do with experiencing a debilitating event. And the first two are all about the event itself. In my case, I’ll talk about TBI, although there have been a number of other debilitating events that knocked me for a loop. Job loss, relationship loss, financial catastrophes, losses of loved ones, a variety of injuries, and so on. They all set me back, and all of them victimized me in some way. And yet I went on living my life.

To me, being a Victim, is about saying, “Something really terrible has happened to me, and it’s so terrible, I have to stop living parts of my life, because the injury took it from me, or I’m way too gun-shy to put myself out there again. I’m safer inside, where my world is smaller, but I feel safer. And f*ck anyone who tries to pull me out of my shell. This injury is permanent, and I have to manage its danger for the rest of my life.

Lord knows, I’ve been there. Right after I got hurt in 2004, I didn’t know why things were so screwed up, but I knew they were. And I was living unconsciously as a Victim, building my life around all the problems I was having, without a really clear view of what those problems were. I had no idea how to fix them. I didn’t even realize the nature of them, or understand that a lot of them could be fixed.  I was living as a Victim. Just half a life — if that.

Being a Victim is about putting the injury at the center of your life, and living your life around it. We can easily make ourselves into Victims, by holding ourselves back from living to the fullest, because of how we think about the injury, how we think about ourselves, or what we believe is possible after the injury has passed. Being a Victim, to me, is about letting an injury define you and limit you, so that you are living less of a life than you otherwise could.

In some cases, the injury is so severe, it’s impossible to NOT be victimized by it.

And yet, that’s where being a Survivor comes in. A Survivor, in my mind, is someone who says, “Yes, that injury happened, and yes, it truly sucked more than words can say. It beat the stuffing out of me and almost took me out… but it didn’t win. I’m going to live my life, no matter what.

After I got a clue about my TBI (and all the others I’d had before), and I realized that I could change things, I started living as a Survivor. I was someone who knew that something terrible had happened to me, and I had really taken a hit from it. But even if I wasn’t living as large as I wanted to, I was still moving towards positive changes, still enlarging my life, still building my capabilities, still working each day to be better than before.

TBI still factored into my life, yet it wasn’t at the center. It was a major player in my experience, and I couldn’t afford to forget it. I still can’t afford to forget certain things and factor them in — like getting enough sleep, managing fatigue, keeping lists to keep myself on track, and remembering that the “crazy” going on in my head isn’t necessarily going to be there tomorrow, if I just get enough sleep tonight and come back to my problems with a fresh view.

Over the past year or so, something new has come up – something beyond “Survivor”, which is actually about just being Human. The thing about TBI, especially, is that it doesn’t always necessarily have to be debilitating. Its effects may be permanent in some ways, and there may be continuous challenges (and yes, problems) you continue to have as a result of it, but over time we can build up skills and abilities and find a new resilience that adds TBI to the overall “mix” of our humanity.

When you get to the place of being able to live your life more or less smoothly, with some bumps in the road that are more speed bumps than cliffs leading down to the abyss, and developing the ability to recover from those speed bumps in a matter of weeks, even days or hours, then I believe you’re past the point of being a Survivor, and on to the business of being Human.

Looking around, it’s impossible to know what challenges everyone is dealing with. Hidden disabilities (or well-concealed challenges) are a part of everyone’s life. TBI is no exception. Yes, it’s different. Yes, it’s not like other challenges. Yes, it has a host of problems that come along with it. But ultimately, it can become part of the fabric of our lives, part of who we are and how we are that doesn’t have to just stop us, but also make us different, unique, and cause us to develop strengths we otherwise wouldn’t have bothered to develop.

That’s pretty much where I am now. I quit thinking about myself as a Victim, years ago. And I don’t really think about myself as a Survivor anymore, either. I’m something else. Yes, I know TBI is an issue with me. How could I forget? But that’s not all I am. There’s more to the story. And in a strange way, TBI helps me find out what that “more” is.

Well, enough talk. The day is waiting.

Onward.

Guest Post: Why I Hate The Invisible!

Speed can do some serious damage – and so can attitudes

Another great post from our friend Ken Collins

37 years ago today, I was recovering at my parent’s home in Oakridge, Oregon after I ran head first into the side of a parked car while riding Pat Moore’s snowmobile by Summit Lake, Oregon, at 4 a.m., on December 31, 1976. My friends who were there saved my life and said I was going full speed when I hit the car and was catapulted from the snowmobile to the side of Bob Brewers Ford Pinto.

On impact, I broke my left jaw below my chin and rammed my right jawbone through my ear canal, separated my skull completely (cap fracture), shattered most of my teeth and fractured a rib. In the hospital the doctors couldn’t set my jaw for two days because of brain swelling.

My hospital records show that I was in a Posey Jacket and wrist restraints all the time I was in the hospital. One day when I was in the bathroom I yanked out my catheter and a few days later were sent home with my parents because I started to get loose (3 times in 6 days). On my last day in the hospital I was found urinating in a planter in the hallway.

For my own safety and the liability of the hospital, I was sent home with my family who were told if they couldn’t handle me then put me in a nursing home. Luckily my family spared me the fate that awaits many young people who sustain these types of injuries: long term confinement to the nursing home, long term rehabilitation facility or state institution – unless they have good insurance, but when that runs out and they become “poor”, many will be forced to have the government pick up the tab. This starts by applying for Social Security Income (SSI).

After people go on SSI, they will become eligible for Medicaid, which will pay for long-term care in a nursing home or institution, if Medicaid home and community-based services aren’t available to them in their state. These services are critical if the person with a disability wants to go back home and try to get on with their lives.

This new life also comes with having to survive on $498.00 a month Social Security benefits to pay for shelter, food, utilities and whatever else they can afford. When they are lucky enough to have a long work history they will go on Social Security Disability Income and make more, maybe $600 to $900 a month. What kind of life can you afford on this income?

Oregon was one of the first states in the U.S. to develop Medicaid home and community-based services. This was all after my injury, and if home and community-based services would have been available, I might not have had to steal food and do other things that would have put me in jail or prison if I’d been caught. It’s humiliating to have to steal food to survive.

Humiliation is invisible: that’s why I hate the invisible!

Every night when I would go to bed and close my eyes and try to sleep I would see –
pictures of people, images and objects floating by as I lay there with my eyes closed. They were like negatives of pictures just floating by. Faces of people looking at me, pictures of people setting or pictures of several people setting or standing, all kinds of scenes and images floating by as I tried to sleep. When I would finally get to sleep I wouldn’t dream. In the morning when I awoke it was like I didn’t sleep at all.

These pictures floated by for about five years, and it took another five years before when I closed my eyes – the face of the man with a beard and long hair looking at me on the other side of my eyelids went away.

Ten years may seem a like a long time for most people, but for those of us who live with a brain injury everyday life really only starts being less of a struggle after the first ten years. For most of us, life will never be the same and for some the struggle will never end.

Before my accident I was a professional baseball player and everyone’s friend. After my injury, when I would see the same people in the community – they would go the other way.
The struggle and turmoil caused by brain injury is invisible: that’s why I hate the invisible!

It took me 13 years before I could start to smell again, and because after the first year of not smelling I forgot what things smelled like – now I have to relearn all over again. It took me 18 years before the numbness on the left side of my body went away, however the limp is still there when I get tired or have a long day.

It took 20 years for me not to have to look on the calendar or my day planner to know what I was going to do that day. Now, at night when I sleep I can dream again. It took me 25 years before this was possible.

To look at me now, 33 years later, you would never guess that I have had such a difficult time. I have faced many of society’s barriers, most of these attitudinal. Attitudes are invisible and are fueled by ignorance and fear to create invisible lines of prejudice and discrimination. Attitudes are invisible and breakdown trust, hope and our own well-being.

Attitudes divide us, separate us and control us: that’s why I hate the invisible!

Handicapped gets its origins from an old European phrase, “cap in hand” when people with disabilities had to beg to survive. Why is it that people with disabilities are forced into begging the Congress and Senate every year not to cut Medicaid, food stamps and other programs they depend on to survive? Politicians say they care and are full of promises to help. What they say and what they do are two different things: that’s why I hate the invisible!

Invalid and invalid are spelled the same, but have different meanings. These words perpetuate the stigmas and stereotypes people with disabilities must wear.

Stigmas and stereotypes are invisible: that’s why I hate the invisible!

People with disabilities are often referred to as “invisible” because we don’t have the means to be heard. We don’t have the money to pay a lobbyist to hang out at the capital. They say: “we need your input” but when we offer it – our input is disregarded all in the name of “health and safety”.

Paternalism is invisible: that’s why I hate the invisible!

Away we go, trying to rebuild our shattered lives in a society that does not equip us to deal with the prejudice and discrimination we will face because of our disabilities. When we fall short of our personal expectations we fall victim to a paternalistic system that tries to fix our every move and keep us safe and not allow us to learn from our mistakes just like everyone else.

Last week, when I was job developing with a 48-year-old man who has a brain injury and a long and productive work history, and I ask the manager, if they were hiring. She has worked with our agency before so I consider her to be a lot more educated about employing people with disabilities than most in Gallup.

As I ask her about hiring Robert, she announced to me in a loud voice as she stood by the cash register, that she doesn’t have any opening right now but, “I have worked with people like that before” looking straight at Robert as if he was invisible.

Didn’t she see his shoulders slump when she uttered those words? Didn’t she see how he looked at her after she said what she said? Doesn’t she understand that words can cut deeply just like a knife and cause unseen pain that reinforces the stigmas and stereotypes we must overcome if we are truly going to become equal members of our community?

Many of my friends use wheelchairs to get around because of accidents, injuries or illness. When we go shopping in stores or go out to eat at restaurants something that usually happens is the clerk or server will ask “me” what “they” want? Sometimes they speak louder when they ask them what they want.

I guess because they can’t walk that means they can’t hear either?

How often do we hear someone call someone or something “retarded” without regard to what they are saying? This phrase is despicable and degrading to people born with mental retardation and yet we hear the “retarded” phrase just about everyday. There is a very good chance that you use this word as part of your own descriptive vocabulary.

When people with brain injuries and advocates try to educate people in our society about how this word should never be used because it hurts peoples feelings and is degrading we are faced with indifference.

Indifference is invisible: that’s why I hate the invisible!

People with brain injuries want to live just like everyone else. We don’t like to be made fun of or talked down to. Honor, embrace and value our experience and knowledge we have gained.

If you hear someone call someone “Retard” – “Crazy” or other degrading names – speak up and educate them about what they are saying. If you see someone making fun of someone who has a brain injury or retarded – speak up and tell them not to do be so ignorant!

Don’t be afraid to speak up and be heard, because nothing gets done when you say nothing and become invisible!