Mixed day. Half day. Full day.

Well, there it is. It’s been a full day, but I got maybe half of what I’d intended done.

Of course I did. I am notoriously bad at estimating what I’ll be able to accomplish in my weekend time. For some reason, I always think I’ll be running at the same pace I do during the week, but weekends take on a pace of their own, so by 3:30 or so, I realize I estimated all wrong, and I settle in to just having a weekend.

Originally, the plan was to run some errands in the morning, mail out some Christmas presents to family, help my spouse get ready for a day trip they were taking with friends, do some work around the house, run some more errands, clean a little bit, take a nap, make some supper, set up the Christmas tree, and get a head start on another job I need to do tomorrow.

That’s almost how it went. Except for half of it. While doing one set of errands, I realized that I needed to run to the big box home improvement store and pick up a piece of lumber to patch a hole in the stairs of my house. I’ve had workmen step into that gap and nearly hurt themselves. And just the other day, another one broke  through the patch I created 10 years ago. I guess 10 years is about the lifespan of that particular patch.

I also needed to pick up some supper, so I ran to the store and got my supplies, along with some caulk. I stopped to ask some employees at the store about where to find caulk, and when they asked me what it was for, I couldn’t get the words out. I could see the pictures in my head, clear as day, but I couldn’t pull up the words “garage” or “trim”. I just stood there like an idiot, gesturing in mid-air with one hand, while I held the 2×6 in the other.

“It’s for outside,” I said. “Outside”. That was the best I could do. The lights were so friggin’ bright overhead, the space was TOO BIG, TOO LOUD, TOO MUCH, and I was still feeling sick — still am, right now.

Fortunately, they just told me where the caulk was (right behind me – d’oh), and they recommended the silicon type. I need to fill some gaps in the trim of my house around the garage doors, because mice keep getting in that way. I’ve seen them slip into that gap many a time, and I’ve had it with them. They’re dead.

I got home in one piece, trimmed the end off the lumber, patched the hole, and then set a bunch of mousetraps in in places where those little bastards tend to show up. When it gets cold outside, they come inside. And until I get those gaps filled (I need to wait till it’s warm and dry before I use it — it’s supposed to get that way, next week), it’s “killing time” for those little bastards.

One place I set the traps is along a veritable “mouse walkway” in my basement. There’s a high ledge along the outer wall where I’ve trapped them before with live traps. Once, I caught four of them overnight. Now I’m not bothering with live traps. They’re dead. Dead, I tell you. The thing is, with my snap traps, if they snap, they can go flying, and then they’ll end up God-knows-where, and I might not find them till I start to smell the little decomposing carcasses. It’s happened before.

So, I got all clever and tied some string between the traps and nails in the overhead joists. Now, if the trap goes off and flies off the ledge, it will just dangle there, instead of flipping into or behind a nearby object where I can’t find it.

Problem solved. We’ll see how that works.

After that, I took a long, hot shower and lay down for my nap, setting the clock for a couple hours later. I must have slept right through the alarm, because no less than 3 hours later, I woke up on my own. I guess I really needed the sleep.

I had a late supper, and then talked to my spouse who lost track of time and ended up staying four hours longer than expected. They’re on their way home. And I am done for the day. Tomorrow’s another chance to start again, which I shall do.

Onward… to bed.

 

a little downtime this weekend

haven’t been feeling great

fighting off a cold – watching what I eat and getting some exercise

recovering from the past couple of weeks — and also gearing up fro the week to come

lots going on, before Christmas and the quiet week before the New Year

thinking about my resolutions from last year – can’t remember what they were, and I’m not sure I care

this is a new year – time to just move on

and in the meantime, rest

while I can

Less scary when it all gets broken down into pieces

Get it out of my head onto paper – it gets easier from there

So, last night I was at my very end. I’d had a long and very tiring week, and my spouse has been out of commission with their back out. They don’t take good care of themself, and they spend most of their day sitting around or lying down. I don’t see how anyone can even function on the lack of exercise they get. It’s like watching them disintegrate before my very eyes.

I work really hard to keep myself in good working order. I fall behind, of course, since I’m human. And there have been long stretches of time when I did not get the kind of exercise I needed. But I’ve never allowed myself to just “go to pot” like they have.

I don’t see how they can even live with themself.

But that’s them, not me. And that’s the toll that mental illness takes — unaddressed, untreated mental illness. Their dysfunction is so profound, they cannot even see how non-functional they are. Their answer to it all, is hiding their dysfunction from others, so they can continue to live that way. I know why that is — I know (pretty much) what they went through as a young kid that made them this way. Their father was a World War II vet, and the things it did to him, screwed up their whole family — all the kids, and beyond. One of the grandkids was a convicted felon before the age of 16, and the offense was pretty horrifying. That’s what can happen, when dysfunction is allowed to fester, everyone is in denial, and you hide your issues from everyone.

The fallout from WWII that I’ve lived with for the last 25 years, is one of the big reasons that I am a major supporter of veterans. I don’t do nearly as much writing directly about vets here, as I should. My hope is that I can write things that will help vets in a way that reaches them / you as people. I’m not a vet, and I wasn’t raised in a military family, and I don’t want to take liberties, writing about that kind of world that I don’t know, myself. I want to be respectful. But maybe I need to do more writing specifically for vets. It’s unconscionable to me, how my country sends folks off to fight for us, then abandons them when they come home.

Anyway, I’m going off on a tangent. What I started out saying, was that last night, I was done. I had a long week, and my spouse was needing a lot of attention and help. It was one thing after another, and I was so wiped out, I had to just go to bed early, which I did.

Last night, the weekend seemed like too much for me to handle. I have a number of things I need to take care of – some that are left over from last weekend. I had a number of time-consuming things to take care of, which ate up a lot of my spare time, and then I ran out of steam. So, this weekend I’m filling in the blanks.And last night, it seemed like way too much for me to handle. It was just overwhelming, the variety of things I had to get done.

This morning, though, I spent some time writing everything down in my notebook, and breaking it out to see what I would do.. and when. As it turns out, there is not so terribly much to do. And it will even leave me time to do some things I have been wanting to do, but didn’t think I could, last night.

Turns out, I can do them. If I stick to my plan today, I can get a lot of things done, so I can do the one thing I really want to do in the morning.

I just have to get it all down on paper. Get it out of my head. My head gets spinning, and then I get confused and tired and more confused and more tired. And then everything looks like hell.

That was how it was in my head, last night – not a fun place to be. I just wanted to blow up. Or throw up. Or both. But I kept it together and was just very quiet, all evening. I was really working at keeping myself from going off the deep end, and I drew the line, when my spouse urged me to eat something sugary and stay up later, watching t.v.

That’s about the last thing I needed. So I declined. And I got about 9 hours of sleep, which is exactly what I needed.

So, lesson learned. Again.

Tonight, after I mow my lawn, I think I’ll watch some martial arts movies. That will put the icing on the cake of what’s starting out as a beautiful day.

To my 24 new followers – welcome

Welcome, all! I'm glad you're here.
Welcome, all! I’m glad you’re here.

I have been looking at my WordPress stats, following up on who has recently followed this blog.

In the last 2 weeks, 24 of you have joined me on this journey (22 via WordPress, 2 via email), so welcome. I don’t mean to be rude or take you for granted — please know that I appreciate you following, and I hope I bring something positive to your life.

I’m about to go out for my morning walk on an amazingly beautiful day, and before I do, I just want to say:

Whatever brought you to this blog, was probably for a very good reason. People come here all the time, not knowing what they will find, then they discover something that helps them. It’s both by accident, and by design. I don’t have any particular “content strategy” in mind, other than writing about the things that matter to me, as a TBI survivor dealing with an invisible set of difficulties, a regular person trying to build the best life possible, and as a member of the larger community who is sure that I’m not the only one who feels this way.

There are times when I am annoying, I whine and bitch and complain and am not my best self by any stretch of the imagination. I can be petulant and cranky and self-absorbed, and I can be a real trial at times — especially to myself 😉

Be that as it may, I have an incredible amount of goodness in my life, and I want to share that experience, as well as show others how I’ve gotten there through a combination of hard work and perseverance, and using my noggin to determine if what I’m doing is actually working. The times when I fail are the biggest lessons — and at times the most valuable.

I’m not afraid to fail. I just get a little tired of getting back up all the time.

But then, don’t we all…?

I know I am not alone in my frustrations and challenges. I’m human, and whether you’re dealing with a brain injury, another sort of injury, past trauma, ongoing difficulties in your life, or a hidden condition that others can never suspect is going on, we are all in this together, and we all have so much to share, if we take the time and put forth the effort.

The effort is not easy. But it is worth it. I start most of my days on this blog, because I remember all too well what it’s like to go through life in pain and frustration and despair, and feel so terribly alone. Some days I’d rather be doing something else than typing into a machine, and I can go for days without writing a word. But I know this is important — to me as well as others who find their way here and really value hearing someone else talk about life in ways that they can relate to.

That happens all too seldom. But I hope it won’t happen here.

Joining us today from...
Joining us today from…

So, to all of you — followers, as well as new readers from all over the world — thank you for your support. I’m happy you’re here.

 

 

 

Three days off never came at a better time

Thank you, Mr. Presidents

I’ve been really sick, this week. Not flu, but a really bad cold that has wiped me out. It’s been a few years, since I was this sick, which I suppose is good. But I am also out of practice with dealing with this crap, and that makes it even more annoying.

I got some OTC meds and the first batch I got had pseudoephedrine in it.

WOO HOO!

They really sent me for a loop — good-bye impulse control! I was running around, talking a mile a minute, ranting over every little thing, and I could hardly sit still. I was probably pretty interesting to watch at work, and I did have a LOT of energy, but My God, it was a little much.

Regular Sudafed makes me nuts, and I thought I could get away with the generic brand. But this had the stuff in it that makes me crazy, so I went back to the store and got myself something without pseudoephedrine, and all was well, yesterday.

I’ve been drinking a lot of that Airborn stuff — generic bargain brand, again, and that seems to make the biggest difference. Whatever they put in that stuff makes me instantly feel better. So, I need to use my noggin and drink plenty of it — also, preferably before I get sick in the first place.

Anyway, I have three days off work, and that will give me a chance to finish up a couple of projects — one for a friend I’ve been helping, one for my house, which needs more than an hour of TLC, and one for me, which has been hanging over my head for some time, now. I can finally get it done, and I’m pretty excited to see that one off my plate, so to speak.

Then I can get back to  TBI S.O.S.

All in good time, though.

I also want to enjoy myself, this weekend. Do some more thinking about some more ideas I have…and just life my life. Heck, I might even work on my taxes.

That would be something.

Onward.

I feel like crap. I must be getting better

Wheeeeeeeeeeee….

Holy smokes, I am dizzy. I’m having difficulty keeping vertical, and I constantly feel like I’m about to fall over. It’s gotten so bad, that I had to cancel some appointments this week, because I really can’t drive long distances in this shape.

It’s either a cold / infection affecting my my inner ear, or it’s neck strain. I’m inclined to think it’s the latter, because it really sets in when I am looking up  for extended periods of time. I can focus intently on something, and that will make it better, but when I stop focusing on something intently, it comes back, and it’s pretty bad.

I’ve had problems with dizziness for many years. It’s been a problem for a long, long time, and I now believe it’s related to the head and neck injuries I’ve had over the years. I’ve been in a number of car accidents that gave me whiplash and screwed up my head and neck, and I’ve also fallen on my back and had my head snap back. So, I’ve had plenty of neck trauma over the years.

And dizziness, too. I’ve gotten used to it, in away.

The encouraging thing about this is that I can actually tell that I’m dizzy. In the past, I was so stressed out and so taxed, just keeping up with the simple day-to-day activities, that this sort of thing didn’t register with me. I just kept going. I just kept pressing on. I didn’t let it stop me… and it didn’t.The thing is, I didn’t really deal with it, either. And I certainly did not cancel appointments because I was off balance. That would have been stupid, according to the old me.

The fact that I’m making these sorts of decisions now tells me that I’m getting better, I’m better able to see what’s going on with me, and I’m better able to take care of myself.

It’s interesting – when I cancelled one of my appointments yesterday, the person I was going to see told m=e it sounded like I was acutely ill and needed to see my doctor.  I guess it did sound kind of dire, the way I described it. Then again, it didn’t. It was just about me being so dizzy that an additional 2-1/2 ours of driving (round trip) was not going t help my situation.

I  told them, No, I’m just more dizzy and crappy-feeling than usual, and I expect it to go away with time.Sure, I’ll contact my doctor, but not over something as common as this.

The thing is, I can track the increase in dizziness to when I started doing more overhead work around the house. I’ve had to do a bunch of repairs to items over my head, including changing light bulbs and cleaning windows and the eves of my house. I was also helping my neighbor do some overhead cleaning, too, and since then my neck has been very tight and sore and I’ve been dizzy. Even now, when I move my head from side to side, I get dizzy.

So, acutely ill, no.But extremely dizzy and not feeling that safe driving around, yes.

I’ll just do what I usually do, which is stretch more,work on my neck — and I also have a massage on Monday, which should help a lot. I’m looking forward to that. I should probably do it more often. There’s a place down the road from my home that has a jacuzzi and sauna and they also do a variety of massage types.Hopping in the jacuzzi to soak in hot water, then getting a massage sounds like about the best thing I could possibly do for myself, quite frankly.  That, and sleep.

Too bad I have to go to work later today.

Well, anyway, I actually do need to go back to my chiropractor. They really helped me before, and I need to go back, so I can address the lower back pain and the neck stuff. Now that I am working closer to home, it’s going to be possible for me to do this again. I had to stop going, because my commute was so long, and I was so tired, and going to the chiro added an extra hour to my daily commute, which was brutal.

Now that’s changed. I need to take action. So, I’ll give them a call later today.

Either before or after my manager sits down with my group and tells us about people getting laid off.

Downtime and Uptime

I’ve been having a really excellent weekend, which just got better, thanks to cancelling plans that would have taken me and my spouse into a nearby city to run errands and deal with traffic, lots of people, and a lot of excitement — all on top of making some big buying decisions.

What a pain that would have been. We both have a lot we want to do at home today, so we tabled those plans till later this week, when it fits our schedule much better.

This gives me time today to catch up with old friends I haven’t communicated with for several months. I am also sorting through pictures I took over the past several years, which I threw onto my hard drive without really organizing very well.

It’s wild, taking the trips down memory lane.

I’m due for a nice long walk. I had thought about going for a bike ride, but I haven’t been feeling all that great, and I don’t want to ride out when I’m not feeling 100%. I’ve been feeling about 75%, lately, for some reason. Foggy and dull and anxious. Things at work have become challenging for me, but fortunately, folks there have my back, and they’re making some accommodations for me — I’m new, after all, and the things they’re giving me are not small things.

So, it’s good to feel supported in that.

It really is a beautiful day. I’ll have my lunch, go out for a walk, then get up and take care of some things. I feel so much better, not having to drive into the city. What a relief.

I do hope I start to feel better… Maybe a nap will help.

 

 

 

 

I have done almost nothing “useful” for the past 2 days

This too shall pass

… except recover from the past week and invest a bunch of time in just feeling good.

Feeling… Good about myself. Good about my life. Good about the fantastic weather we are having here. Good about the choices I’m making. Good about having time to myself to just recoup and relax. Chill. Feel better. Get better.

I tend to really overestimate my tolerance for bullsh*t. And I tend to drastically underestimate the level of BS that takes place in the world around me. It has occurred to me more than once, that the issues I have are not entirely with me — yes, certainly there are shortcomings in my brain processes. But the stresses of living in the midst of so much fluff and dust storms, and everyone picking fights for the sake of fighting, and the perpetual cognitive dissonance that marks our days in this Western World…

How could a person NOT go mad, after a while?

And how could a person with TBI, be it mild, moderate, or severe, NOT struggle with recovery, when recovering is so very dependent on our brains being able to rewire themselves, and the rewiring is so very dependent on having the right resources, the rest and nutrition and oxygen and stimulation and opportunity to rest and recover… none of which seem to be in abundance, these days?

I tend to overestimate the amount of stress my brain and my body can take. And I tend to underestimate the amount of downtime I (and my brain and my body) need to just be functional in the midst of the lonely, lonely stupidity.

Taking a break and not doing anything… not tending to my house and yard and garden… not running around doing errands… it’s all sacrilege in the town where I live. My neighbors gloat about how much more they have accomplished than I. So, I raked a bunch of leaves and then left them in a pile… but they would never, ever do such a thing. So, I admitted openly to being glad for bad weather, so I don’t have to work in my yard, but they relish the opportunity to get out their and tend their minor estates like lesser royalty.

Good for them. Woo hoo.

At the same time, they are certifiably nuts — the couple across the street are visibly miserable, for all their finery and accomplishments, with their three lovely children, and two modern cars in the garage. And last weekend, my spouse and I heard the howls of a sorely wounded soul echoing from inside the house of another set of neighbors, who have been the target of a number of town/police investigations, and who have threatened to hunt down and sue everyone in the neighborhood who speaks out against them.

Crazy. But I felt bad for the person who was howling in pain last weekend — shrieking “NO! NOOOO! GET AWAAAAY FROM MEEEEE!!!!” at the top of their lungs, wailing and crying, wailing and crying… till someone shut them up.

Probably with an under-their-breath warning “The neighbors can hear you…”

Yes, my fine neighbors. All impressive on the outside, all wounded and suffering on the inside.

These are the people I’m worried about?

Hm. Maybe not so much, anymore…

After the past several days of doing everything except what I’m “supposed” to be doing, I feel like I’m finally becoming human again. And it’s good. The weather is phenomenal, I’m getting my strength back, and I’ve cleaned my office… which is becoming my lab. I’m feeling like more of myself, nowadays, having gotten free of so much debt, and now getting free of the horrible job and working conditions.

I’m also thinking about what I’m going to say for my exit interview, as well as what I’m going to say to the uber-boss when we sit down to talk.

Main thing is, I remain calm and remember — this is going to pass. The expiration date on this BS is just around the corner.

Week after this next one… none of it is my problem.

Any. More.

ONward.

Tap those brakes…

Just a touch – not too hard – don’t go into a skid…

One thing I’m very grateful for, is that I have not been very sick at all, this past winter. This is a change from other years, when I would get very sick at least once — often twice or three times — and spend a lot of time in bed and/or recovering after the fact at maybe 2/3 of my real ability.

This year, I have a slightly different challenge — things are going so well for me, and I have so much to keep me busy, and I am functioning so well, that I am pushing myself much too hard, and it’s dragging me down.

I’m doing it to myself, really. And it’s no fun.

Yesterday was a tough one for me. The morning was full and pretty packed with intensity. I had a deadline to meet, and the folks on my team who were supposed to work with me to get there, were making extremely poor decisions. Their work product was substandard, and they were telling me that insisting that things work properly was unrealistic and out of line.

Well, okay then.

I did as much as I could, I sent an email to my boss explaining the situation, in case they caught hell for the result — which was entirely possible. It wasn’t about “tattling” on anyone, just giving the person in the line of fire the right information to defend their position — which is always a likelihood where I work.

After that, I checked out for the day. I set my out of office message for noontime on, then I logged off around 2, took a shower, and went to bed. I was incredibly dizzy and seriously wired. All the frenetic activity of the past several weeks, without any serious extended downtime (as in, more than several hours at a time), has kicked my ass. I felt like crap, and I just couldn’t do it anymore.

So, I crashed. I got about an hour of sleep, then I lay in bed reading FB and news. After a while, I got up and decided I needed to ride the exercise bike, because I needed to move some lymph. The lymphatic system is what moves waste out of our systems, and it doesn’t move on its own. Circulation moves it, so if you’re sedentary and you’re not moving very much, you end up with a bunch of gunk in your system. It’s basic physiology/ physics. If you want to feel better and take a load off your system, get your heart rate up and get your blood pumping, and the lymph will clear out the crap.

When I got downstairs, my spouse was there and they started to ask me about things I was supposed to do for them, over the past several days. I have had no time to do much of anything, other than work-work, as well as take care of myself, and it really pissed me off that they couldn’t say anything to me without it adding crap to their endless honey-do list. I swear to God, I get sick of being treated like “the hired help” at home. I don’t have any other use and purpose, other than doing my spouse’s bidding? Geez.

So, I snapped and went off, and of course I looked like the crazy person, because I was just so beside myself, with being so dizzy, not feeling well, and not feeling like I can ever get a break — especially in my own home. Everybody wants something. Everybody needs something. And because I’m able to give everybody just about everything they want, just the way they want it (that’s been my bread-n-butter for as long as I can remember), the requests just keep on coming.

When I protest and put my foot down about everybody pulling on me and demanding sh*t from me, everyone wants to know what I want from them.

Here’s the thing:

I DON’T WANT ANYTHING FROM ANYONE.

I WANT TO PEACEFULLY CO-EXIST WITH OTHERS IN A NEUTRAL SPACE, TO LIVE MY LIFE FREE OF OTHERS’ CONTROL AND JUDGMENT AND MANIPULATION.

I WANT TO DEAL WITH PEOPLE AS AUTONOMOUS ADULTS WITHOUT A HIDDEN AGENDA.

I WANT TO DEAL WITH PEOPLE WHO ARE EMOTIONALLY SELF-SUFFICIENT AND DON’T WANT TO USE EVERYONE ELSE AS A CRUTCH TO SHORE UP THEIR FLAGGING SELF-ESTEEM.

I WANT A BREAK FROM BEING EVERYONE’S “SAFETY BLANKET” AND I WANT PEOPLE TO LEARN TO FEND FOR THEMSELVES AND APPROACH ME AS ADULTS WHO ARE ABLE TO PROVIDE FOR THEIR OWN SENSE OF SELF, WITHOUT DEMANDING THAT I DO IT FOR THEM.

I have no need to control others. I have no need to manipulate others. I am wholly capable of knowing who I am and supplying my own self-esteem and going quite happily about my business without needing to be constantly reminded by others who I am, what I’m about, what matters to me, what my goals and values are, etc. etc. etc.

And I am sick and tired of being surrounded by others who can’t figure that sh*t out. At home. At work. Out on the street. In groups of friends and acquaintances. They’re everywhere.

I swear to GOD, I have had it up to here with people who just help themselves to other people’s energy and attention, like it even belongs to them.

It doesn’t. My energy and attention is my own, and they can’t just waltz in and help themselves to it.

And I deeply resent others who have such a sense of entitlement to my energy, my attention, my focus, my help.  Friggin’ vampires.

Yes, I make them feel better. Yes, I help them feel more balanced and confident and self-assured. But what does it do for me? Not a damn’ thing. If anything, it just drags me down and prevents me from taking care of my own stuff.

And I fall behind. And I get overwhelmed. And I run out of energy. And I end up extremely dizzy with a splitting headache and a foul temper that just makes me feel like crap after my outbursts.

Which is really bad for me.

And it cannot stand.

So, clearly I need to change the way I do things and get my act in order. Gotta draw some boundaries and take care of my own damn’ self. And I can’t do that, if I’m exhausted and completely depleted by other people’s draining needs.

I’m feeling better today — more rested, after getting to bed relatively early last night. I was in bed around 10:30, which is about where I need to be. I woke up around 4:00, which meant I got 5-1/2 hours of sleep, which is NOT enough. But instead of getting up, I just lay in bed, relaxing. I just lay there in the warm bed and breathed… paying attention to how I was feeling, and consciously relaxing.

It felt pretty good, too, and although I didn’t get back to sleep, at least I was resting. And when I got up, I felt better.

I really need to get back to listening to Belleruth Naparstek’s “Stress Hardiness Optimization” CD. It’s designed for first responders and other folks in high-stress situations, to help them relax and overcome the negative effects of stress. I used to listen to it all the time, then for some reason I took it off my smartphone, and I replaced it with the soundtrack of “The Crow”. If you know the death-metal soundtrack to “The Crow”, you know what a 180-degree turn this is.

And you know how much sense it makes, to swap out the listening material on my smartphone…

Anyway, these are just things I need to address, and I’ll address them. I’ve got a lot of problems that are really good problems to have — a job that challenges me on many levels and has a ton of opportunity… a house that needs to be taken care of… a marriage I need to sustain… and time that I need to manage properly.

I just need to make sure that I don’t overdo it.

Well, it’s time to get going. The day awaits.

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!