Adapting… and realizing how much good it does me

I have had a few days to “decompress” after my trip to see my family. Two full days of driving — 8 hours there, 8 hours back — did a number on me, and I’ve been foggy and dull since I got back. Also, the pace was relentless while I was there. My family goes at top speed, pretty much all the time (except when they’re sleeping, which fortunately happens more often, these days).

So, all in all, it was a very challenging time — a challenge which I nonetheless rose to, with all good results.

The thing is, now that I’m back, I need to re-acclimate to my everyday life, which is very, very different from how things are at my parents’ place. It’s much quieter here, much less active, and a lot more contemplative. It’s ironic, because my family is very religious, and they consider themselves very spiritually connected. Yet they are so busy going-going-going, they hardly have any time to deeply consider their thoughts and their actions and the consequences of them. I love my parents dearly, and it pains me to see them declining — a little more, each time I see them — because they simply won’t take a close look at what they are doing and eating and drinking and living, and accept what it’s doing to their health and well-being.

My father considers himself a self-made man, which is true in that his diabetes has worsened because of the choices he makes. He thinks he can wish the condition away, but his actions and choices of foods make that all but impossible. My mother considers herself a socially connected person who cares deeply about others, while at the same time she buries herself in busy-ness whenever close friends of hers are in trouble.

I got a good look at my potential future, visiting my parents. And I also got a good look at how things could have turned out for me, had I taken the same path as my siblings. My brother has done well for himself and his family, yet he’s living in a place that is hostile to his deepest beliefs and convictions. My sister-in-law once had big dreams, though over the years she’s limited herself more and more and more, till the thing that means most to her is having a part-time job that lets her take care of house chores. Their kids are doing great, which is gratifying, so there is a whole lot of good that’s come out of their choices. And yet, I wouldn’t trade my life for theirs for any amount of money. Parents make sacrifices for their kids all the time, and I have no argument with that. I do have a problem, though, with completely throwing big parts of yourself and your hopes and dreams and internal convictions out the window, to fit in and be safe.

Of course, people do that all the time. That’s for them to live with. It’s not for me to judge. For myself, though… I choose something different.

And coming back from the trip, I look around and realize that the life I have really does fit me exactly. I’m doing great. I have my limits and my challenges, but I can adjust to overcome them. I have been in a lot of pain for the past few weeks — not headaches, but a lot of back and leg pain — and my mind has been foggy and dull. I have forgotten some things I really needed to remember at work. Other people needed me to remember them, too.

I made a couple of really unfortunate choices at work, the day I was back, and I feel like I’ve been scrambling to catch up, ever since. I mean, one of the mistakes I made was the exact opposite of what someone had asked me to do — and entrusted me with — just 15 minutes before. And I dropped the ball. I was supposed to “buddy up” with someone new at work, and have lunch with them. Their usual buddy had a lunchtime meeting they had to attend at their desk, so they couldn’t do lunch. I managed to keep it together and get the new person down to the caf, then for some reason I spaced out and went to sit in a different area — completely forgot about them and my mission to buddy up… I basically left them to fend for themself among virtual strangers, which would have been a crappy thing to do if I’d intended to do it.

Of course, I didn’t. But that’s what happened. Instead of staying down in the caf, I went back to my desk… across from the person who had asked me to sit in for them. And I didn’t remember what I was supposed to be doing until after I sat down at my desk and realized that I was sitting across from the person who’d asked me to fill in for them.

So, I was feeling pretty stupid at that point. Talk about dull and clunky. And then I spent the rest of the day trying to figure out how to make up for it. I still am. I can’t very well go to the person and say, “Dude, I totally forgot all about you,” because how would that make them feel? Un-memorable, that’s how. And I can’t explain that I have short-term memory issues, especially when I’m exhausted, because that’s going to hurt my prospects at work.

All I can do now, is adapt and go out of my way to be helpful as best I can, and hope that I can develop a decent working relationship with this new person — despite that first faltering interaction.

Realizing how dim and dull I have been, I’ve been turning to my lists again for help, and it’s really doing me some good. I’m actually getting things done, that have escaped me for weeks. I finally got my COBRA insurance papers together and sent them off with the check, so my coverage is re-instated. I had read the paperwork when I first got it, but I missed the part about how you’re not actually covered by ANY insurance, between the time when your coverage ends, and it’s re-instated retroactively. So, the doctors visits that have been happening may not be covered by my COBRA. And I may need to pay out of pocket for them.

That really upset me, and I was thrown off all day yesterday. I also got anxious about the possibility of some medical emergency happening. I expect my coverage to be reinstated next week, and the idea that something serious could happen between now and then was weighing heavy on me.

Then I decided to just roll with it and let things happen as they will. I’ve got no credit card debt, and if I need to set up payment plans, I’ll do that. I’ll figure something out. I’m making enough money now to hold me in good stead.

I also need to sort out some other medical coverage stuff that is so confusing to me, I don’t even know where to start. I have been sweating it out, thinking I’m never going to figure any of it out, and it’s kept me from stepping up and doing something about it. The thing is, I’m not alone in figuring it out — at least, I don’t have to be. There are toll-free numbers for people to call, and I am planning to do that. I just need someone to walk me through the details and explain them to me. It could be that I incur a penalty because the timing of leaving my job and terminating my regular coverage and getting signed up for new plans is all screwed up, but at this point, I’m not sure I care. I’ll just make the money I need, to get by.

Or I’ll adjust in some other way.

The idea of having someone to talk to about this, is really helping me a lot. I’m not alone. I don’t need to figure it out by myself. Nobody is going to know how impaired I am, if I’m asking for clarification. I’m sure even the most brilliant people need help with all this insurance complexity. The whole system is convoluted and filled with veritable land mines, and it’s been that way for a long, long time. I just have to use my head and keep moving — and use the help that’s offered.

That being said, I need to set up time for my spouse to give permission for me to talk to the insurance folks on their behalf. I have to figure things out for both of us, and since my spouse is a few years older than me, issues like Social Security and Medicare are on the horizon. Not sure how that happened so quickly, but there it is. It’s hugely confusing for me, but I have to handle it, because my spouse cannot even begin to approach all the details — they’ve got even more impairments than I do, and their biggest one is panic-anxiety, which pretty much keeps them hostage and immobilized in a self-perpetuating prison.

So, I need to get on the horn with the SSA and other folks to talk about what’s to come on down the line, eventually. There are fees and penalties or some-such, if we do things wrong, and I think we already have stepped over the line. Oh, well. I guess I’ll pay the fees and penalties, then. The good news is (I think), my spouse has been so marginal for so long, not paying into Social Security, but 10 years out of their entire “career”, so that if the government takes a percentage of their SSI payments, it’s going to be close to nil. There are some benefits to living on the margins, I suppose.

Anyway, it’s all a grand adventure, and even if I am dull and foggy and in pain and out of sorts, I have tools I can use to get me by — making lists, and also getting someone on the phone to help me understand everything. There’s also the Web… there’s that.

Speaking of which, I need to sign off now and go check out some websites, in hopes of making sense of things. I suspect I’m going to be a bit screwed by the system, because I don’t know the ins and outs and I don’t have a lot of people in my life who are in the same situation who can help me avoid penalties and fines and all that. But I’ll adapt. At least I have my life, I have my independence, and my life is pretty much how I want it to be.

It’s all good. It really is.

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!