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!

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From TBI to stupid and crazy and back again

I checked my stats this morning briefly, and as is often the case, a lot of people have found their way here by searching for information about tbi/concussion making you stupid or crazy or both.

Can tbi affect intelligence? Why does concussion make you crazy?

These are questions that people search on, time and again… and they often end up here.

So, if you got here through that kind of search, welcome. You’re in good company.

I’ve been thinking a lot about this, lately — why and how does concussion/tbi affect your intelligence, your mood, your state of mind? Well, obviously, when your brain starts to behave unpredictably, it can lead to all sorts of upset. And since the brain controls the body, and tbi can lead to pain, insomnia, balance issues, etc., that can lead to depression. Because you can get so intent on just keeping things “normal” that you run up a huge adrenaline tab, and you end up really wearing yourself out — which can cause your mood to plummet into the basement, as well as affect the quality of your thinking and make you really feel/act stupid.

Most people I know think that depression is a psychological condition. But I really feel it’s much more physical than a lot of people will admit. Of course, with all the psychologists making their living off treating depression, the idea that exercise and regular rest and decent physical fitness (not to mention a bit more stamina) will resolve a ton of problems, isn’t going to be very popular or widely publicized. But I’ll repeat what I’ve heard someone else say (can’t find the quote to attribute right now) that a brisk walk will solve more problems than many hours in a psychologist’s office. And with all the research being done about the connections between exercise and cognitive/behavioral performance, there’s more and more science to back it up.

Personally, I know that after my own TBI in 2004, I became incredibly stupid and deeply depressed. I was hell to live with. I lost my job. I almost lost my marriage. I lost my self-respect. I lost most of the things I used to love, including being able to sit down and just read a book, memorize information, and recall it when I needed it. The rage and behavioral issues have abated considerably since then — and they really started to improve when I started exercising regularly, first thing in the morning.

I’ve gotten a lot more intelligent and sane since then — in large part because I started really taking better care of my physical fitness. It works. If you haven’t tried it, give it a shot. And keep at it. It’s worth the effort.

Anyway, I’ve got to get going. I slept in a little today — well, more like laid in bed for a few extra hours — and I have some things I’ve got to get done. I picked a doozie of a topic to blog about quickly, but I had to say something. More on that later.

Gotta run…

Pain can make you crazy

The weather is changing. After weeks and weeks of hot, dry weather, suddenly it is cold and rainy. And my body can tell the difference. I’m considerably more tender and tight than I have been, and it’s having an effect on my frame of mind.

First, being in pain makes me less likely to move. Much as I may tell myself to ignore the pain and “work through it,” my body is still wired to know what’s good for it — and instinctively avoid pain-producing situations. That’s just how our bodies work — they “know” that our minds tend to override them and force them into situations which can be physically damaging, so they do their self-defensive thing and just avoid the kinds of movements that produce pain.

Being less likely to move makes me tighter than usual. My muscles feel shorter and smaller, and I feel cramped. When I stretch them, it feels really good — like I’m freeing up a bunch of energy that’s been trapped in them. But I have to consciously remember to stretch. My body isn’t inclined to move on its own, when I’m feeling pain.

Being tighter than usual makes me crankier than usual. This is not fun for anyone. I have a lower threshold of tolerance for foolishness (or what seems like foolishness to me), and I tend to snap at people over whatever. I also grouse and grumble, which makes people at work wonder if I’m okay.

Being crankier than usual makes me feel like crap about myself. I don’t feel 100% and I start to wonder if there’s something wrong with me. I don’t feel like I have command of my own life, my own mind, my own body, my own moods, and that sense of helplessness eats away at my self-esteem and self-confidence. And I start to do things that will make me feel better about my life — like eating junk food and staying up late watching crap on t.v.

When I feel like crap about myself, I start to question my sanity. My sleeping schedule may be way off, my daily habits may be unhealthy, and my overall sense of who I am and how I’m doing may be at total odds with what I want them to be. I wonder if I’m losing my mind – I’ve worked so hard to get to this place, I’ve worked so hard to build myself back up, and yet here I am, feeling like a screw-up and feeling damaged and feeling like I’ll never get ahead.

It makes me crazy. And it starts with the pain.

See, here’s the thing about the body-mind connection… I firmly believe that much of our state of mind is tied in with our feelings about our bodies — if we’re feeling healthy, if we’re feeling strong enough to live our lives… indeed, if we are strong enough to live our lives. Pain contributes to reduced range of motion, fatigue, emotional exhaustion, and a dramatically decreased quality of life, and that craziness starts in the body.

…Which can also be tied into the mind… because if your mind is untamed and running wild all over creation, then it can run you ragged (through stress-seeking behavior and situations) and eventually dissolve the rug out from under you with stress and fatigue and over-exertion. I won’t say “pull the rug out” because the process is much more gradual, insidious, and (while preventable) uncannily predictable.

It’s a constant feedback loop that spells trouble.

Now, before I make myself crazy, I must get on with my day.

Geez – I have GOT to get out of my head

Source: images.wellcome.ac.uk

I am slowly but surely driving myself crazy. I am feeling depressed and low and forlorn. All the world feels like it’s pitted against me, and I feel like I’m slipping farther and farther into an abyss. I feel like I’m behind at work, I’m not meeting my deadlines, I’m saying/doing things that make people uneasy, and I’ve been ultra-edgy, the past few days.

This really sucks. I’m glad my spouse wasn’t around this evening — I had a little breakdown about the time I woke up from my nap. Over what, I can’t quite remember. Something about career disaster.

Now, I know I’m tired, and I know my mood takes a nosedive when I’m fatigued. I also know that the past three days — no, wait, the past week — has been extremely full — with change, new faces, new information, etc.

Despite needing to take it easy this weekend, I burned the candle at both ends. And now I am seriously overloaded, and I feel like I’m coming down with a cold or something. Ugh. I’m drinking my nasty “cold season tea” to head it off at the pass.

All the work was for good reason, mind you. I’m on deadline, and tomorrow is a hard-and-fast date I have to meet. No alternatives. I’ve missed a number of deadlines already, and it’s turning into a pattern I need to turn around. I must deliver the goods by tomorrow — but since I did so by this afternoon at 12:30 or so, I should be good. Have this nagging sense of “what’s missing?” however. I hate this.

Regardless of my best intentions on Saturday morning, the weekend ended up taking a big bite out of me.

And my head has been nudging at me, whipping me into a neurotic frenzy. It’s telling me I’m a screw-up and a slacker and I’ll never amount to anything, and if I have any sense, I’ll run away to Uruguay, which I read about over the weekend. Apparently, you can live there for very cheap. And you don’t even need to know Spanish. It’s getting cold here. I think the summer is starting there. Uruguay might be just the ticket for me, actually. Hmmm…

What is this world inside my head coming to? I had the house to myself this weekend, and I isolated with my work, didn’t get out much, and now I’m feeling both wired and weird. Good grief.

I want to run away. Seriously. The new job scares the crap out of me, and I’m convinced that everyone hates and resents me and they are out to get me. This is not good. I’m being silly and I know it, but I’ll be damned if I can stop these little “tapes” in my head that keep reinforcing all the crap that’s accumulated over the years.

This is not me.

These are feelings, not facts.

I'm being ridiculous.

Stop it.

Hey – wasn’t I supposed to have fun this weekend and kick back and relax? In a way, I did — I took care of  all that programming for my work, which is something I enjoy doing. But even fun in large amounts puts a strain on the system. And I was really haulin’ ass there, for a while. Now I’m feeling the effects.

I’m feeling positive, though, about what I got done. I just hope my coworkers don’t hold it against me that I worked over the weekend. They say it makes them look bad, and they give me crap. But I had to get the stuff done. Sometimes working weekends is the best way to go. Especially when you have a highly sensitive deadline… in another 15 hours.

I think the only sensible thing I can do at this point is head off to bed shortly.

So I shall.

And now for something that will make just about anyone feel more normal (or at least less abnormal) — http://hyperboleandahalf.blogspot.com/

Read it and weep — while you’re rolling on the floor laughing your ass off 🙂