Not looking forward to this. I am very tired, and my speech is slurred, my face is numb and twitching, I’ve been sleeping on my arms wrong, and the fingers on both hands are stiff with pins and needles, and I’m having difficulty putting ideas together coherently.
I’ll give it a try and go ahead and make the call. I tend to get better, once I get warmed up, anyway. I’ve got my notebook where I’ll keep my notes and keep everything organized. I have some slips of paper I wrote notes on, and I’ll transfer them to my notebook, so I keep organized. I’m really out of it and disoriented. Things always get worse in the days after. When you’re in the thick of things, everything is a blur. Later, when things calm down, is when the extended problems start.
Fortunately, I got some great tips from someone I met yesterday who told me to go to www.nada.com and get the “Clean Retail” value of my car, then call the insurance company and definitely do not settle for their offer, if they total the vehicle. They told me about different tricks the insurance company tries, like telling me they’ll pick up the vehicle and taking it to their lot, and then just sitting on it, while I wait for my settlement. I also need to find out if I have rental coverage.
I’m not sure how this will turn out. I don’t know if the car is worth saving, or if we should just get a new(er) one. I really don’t know. I don’t have enough information yet.
The airbags went off, so apparently insurance companies tend to total vehicles when that happened. Also, when I went to the tow yard and cleaned it out, there were pieces of interior that were twisted and bent, that shouldn’t have been, so that looks to me like frame damage. If you hit the front of your vehicle, and one side of the back bumper is pushed out and back, I’m guessing there’s more going on than front-end damage.
Anyway, I have a huge day ahead of me. I have some critical meetings happening, and I also need to make some important calls. It’s not a small thing, this day, and I’m not really feeling up to it. But I’ll do it anyway, as best I can.
There is progress on the neuro front — slow but steady. I may have found someone I can work with to help me sort out all the issues I’ve been having, but have not been able to articulate that well:
twitching in my right hand and thumb
tingling and numbness on the left side of my face
All the “usual suspects” of my daily life are getting to be a real pain in my ass, and now that I’m not completely wiped out each and every day by my commute, I have gotten the strength back to actually notice how screwed up things generally are for me, physically speaking.
Don’t get me wrong. My life is good. I love it. I have a good job with a great company, my debts are gone, my house is in good shape, I’m able to read and write more now, than ever before, and it’s great.
The thing is, all these symptoms — some of which have been with me for as long as I can remember — are now much more noticeable, and I would really like to do something about them.
The main thing is, I need to see if they are part of something more serious than just the everyday post-concussive wear and tear. I can definitely live my life with them in the background. I’ve been doing that for as long as I can remember. They don’t make me utterly miserable, when I manage them.
But wouldn’t it be interesting to find out what life is like without them?
That’s the next chapter of this journey, anyway. Still in development.
I haven’t forgotten about my S.O.S. – Sense-Of-Self – work, though. I’m working on a couple of other projects right now that are taking up a lot of my time and attention. I hope to get back to the SOS writing this weekend — and in fact, it would make sense, since my physiological issues and all the pieces that go with that are intimately connected with my sense-of-self. That, and my ability to communicate.
I’m feeling a little discouraged about the communication piece, actually. When I’m writing, things become very clear for me. But when I’m talking, I can’t say nearly the things that I need to say. It’s like I have a vast and ever evolving “ecosystem” in my head, but just a very small window through which the thoughts and ideas and knowledge can actually pass. That’s when I’m talking. Everything gets jumbled up, and even though it sounds like I’m saying things that make sense to others, they do not reflect what I’m really trying to say.
And people who tell me I’m making sense just depress the crap out of me, because I can’t completely express what’s truly going on inside of me, and if they could hear only half of what I want to say, it would put things in a very, very different light.
When I’m writing, however, it’s a totally different thing. Maybe because I’ve spent so much of my life writing and working on that skill, while talking has been far less of a priority with me. That, and when I talk, all the words and thoughts and concepts get jumbled up in my head.
I guess that’s my next thing to tackle — how to communicate effectively by the ways that work best for me, instead of trying to rely on spoken communications. I’ve collected a lot of data about my headaches and other symptoms, which I can share with the neuro, when I see them. And I’m working with my neuropsych to figure out how best to present everything.
It’s all an ongoing process, of course. And I need to not be too rough on myself when I fall short of where I’d like to be.These things can take time. Just gotta stick with it.
A couple of months ago, I had several episodes that really threw me for a loop. I had a couple of meltdowns and it felt like something in my head “popped”, and then I was numb and dumb for a number of days after that. I thought maybe I was having a stroke, but it didn’t seem like I was having all the symptoms, so I thought maybe it was a migraine. It’s hard to tell with me — I have so many sensory issues in the course of every day, it’s hard for me to sort out the exceptions from the rules.
Over the past several weeks, I’ve had some “jumpiness” in my left cheek, and for several days, a spot on the left side of my upper lip was twitching like a Mexican jumping bean. It was driving me crazy, but it came and went, so I didn’t want to make a deal out of it. Then, last night, I realized that my left hand is more numb than my right – I can feel things and I can move it, and I don’t seem to have any loss of muscle strength, but it feels a little numb, and I don’t have the same level of sensation that I do in my right.
Also, I almost cut the tip of my left index finger off, last week, when I was fixing supper. For some reason (and I never do this), my finger was extended, and I almost didn’t stop myself, as I was bearing down. I cut most of the way through the nail – fortunately at an angle, so it didn’t go into the flesh under the nail. And it freaked me out, because A) I can’t afford to cut off the tip of my left index finger — I need it for working on the computer, which is my bread and butter, and B) it’s very unlike me to not keep my fingers away from the knife while I’m cutting. It’s been years since I had anything like this happen to me.
Then, this morning when I was putting on my socks, I could not raise my left leg up as high as my right one. I just didn’t have the strength. I know I have had different levels of strength in my left and right, and I haven’t been able to lift one knee higher than the other for some time, but I can’t remember if it’s been the right one or the left I have trouble with. And it’s weird how I keep misspelling things.
So, I think I may need to get checked out. The only problem is, I don’t trust the hospitals that are closest to me, and the one my PCP is affiliated with has really sh*tty neurologists. I have dealt with them in the past, and the one in particular treated me like I was hostile, they kept asking about my history of drug abuse, and they basically just went through the motions till they got me out of their office. I’m sure they’re not a total asshole, but that day, they did a great impression of one.
The other problem is that I have gone through whole batteries of tests over basically nothing — just stress. I get diminished when I am tired, and I have been extremely tired, lately. I’m just going-going-going all day, every day, and it’s caught up with me big-time. So, I don’t want to go crying “stroke!” when it’s really just stress and will get fixed with a lighter schedule, more sleep, and taking it easier than I have been.
Fortunately, tomorrow afternoon I’ve got an appointment with a counselor whose office is closer to a nearby city that has excellent hospitals, including the one where I had my MRI and got checked out for possible seizure activity, several years ago. They’ve got an MRI on record with me, as well as an EEG, so they’ll have a baseline and I won’t have to request records from other hospitals. I have my appointment with my counselor at 5, then I’ll discuss the situation with them, and if it really seems like I need to get checked out, I’ll drive the extra 45 minutes to get to the hospital in the city.
I’ll need to prepare for this — make sure I have everything with me that I need — including my work laptop and stuff from home. I’m packing a bag, just in case. And I’m also packing up my cubicle tomorrow, because we’re moving to the new office building on Tuesday evening, so I need to have it all ready to go, in case I’m not in the office on Tuesday.
I just need to prepare. And make sure that my spouse is all set, in case I need to stay overnight, or things run late. Maybe I’ll go get some extra food today, to have us covered.
I’ve got a headache, but that could be anything. I usually have a headache. No surprises there. And concentrating on the thought that something might be WRONG, is not helping me.
I’ll check with my counselor tomorrow. And I’ll see if I can get hold of my neuropsych, too. It’s really hard for me to tell what to do, and how best to do it. I have a lot of responsibilities, and I need to keep up with them, because people are counting on me. It’s almost impossible to tell what’s a product of anxiety and worry and being all stressed out with concern, and what’s the real deal, so while part of me wants to go to the ER and get checked out, I’ve been there a bunch of times over things, wasting precious hours amongst sick people. And when all was said and done, I was told, “Oh, it’s nothing. You can go home now.” I get sick and tired of being treated like I’m malingering or am overreacting. I literally don’t know if what I’m experiencing is a legitimate problem, or not. I have had a lot of neck problems over the past year, which affected sensations on the left side of my body, so maybe it’s just that. It’s hard to know. There’s a lot of competing information coming up in front of me all the time, so how do I sort it out?
Anyway, I think I have a plan. I’m still walking and talking reasonably okay (that slurred speech and sensation of a drooping cheek isn’t much fun, but it comes and goes). I’ll put everything in place for what needs to happen, should I need to go into the hospital. I’ll get myself coverage, and I’ll make sure things are lined up, so I can just take care of business.
Like paying my mortgage. For some reason, I had direct deposit set up for one bank account, but not for my house mortgage account. I discovered that yesterday, when I was checking my bank balances online. So, I’m late on my mortgage this month. Fortunately I’m not terribly late, to the point of getting “love notes” from the bank. I set up the monthly deposit to go into my account regularly, so that problem’s solved.
I also discovered that I have $8,000 more in the bank than I thought I did. That’s enough to keep me afloat, if something keeps me out of work for a few months. It’s amazing how much money you can save, when you don’t pay your mortgage 😉 Of course, that $8,000 is all the money I have in the world for a safety net. Compared to the $400,000+ I used to have saved for retirement before my TBI in 2004, it’s sad. But it’s a hell of a lot more than I’ve had for a number of years. So, I am grateful for what I do have.
Oh, this is annoying. I can’t seem to spell. My hands keep typing the wrong letters. I need to take a long, hot shower, then lie down and get some rest. Take care of a few errands, then sleep for a few hours… or more. As much as I need. It’s Sunday. I’ve had my walk in the woods and my breakfast, and it’s turning out to be a perfect day for sleeping. Gray. Overcast. Drowsy. With a breeze blowing in the trees. Nice.
After I get some sleep, I’ll make my list. I’ll type up my symptoms from the past few months, and I’ll print out a copy, in case I need it tomorrow. Everything may be perfectly fine — just stress — but it’s not feeling fine, right now.
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!