this blog is moving.

I am soon going to be changing the address of this blog. I am not feeling the current address “blogginanam;” it was picked in a certain fit of frustration I was feeling as name after name was already taken. And if I don’t like the address, then why would I post there?

Truth be told, I don’t have a lot of time. I love writing, though; I’d love to have my stuff out there. I just wanted to give you a heads-up before I go changing the name on you.

I’ll give it a few days and change it then. I’ll make one more post on here before I do that.

Med-Go-Round again.

I am off the Tegretol. I have been myself for over a week now.

It has been glorious. I have been grateful each and every day.

Yet today I started on a new medication — Depakote ER. This too is supposed to help me with my constant headaches and occasional seizures.

Again I am scared that the cure will be worse than the condition. I did not have a good experience with Tegretol. It took me away from myself — it made me into someone that I was not.

I’ve found a lot of drug-representative information about this medication. It tells you things without really telling you anything. You may have this side effect or that one; your hair might fall out or your heart might stop. Could be good, could be bad. The only site I’ve found that has real-world information (CrazyMeds) has similarly scary information on it. You’ll probably feel very old on this med, your memory will be shot, a host of other things.

I am scared to take this medication. I am willing to have the headaches, seizures and tinnitus if I can just keep my being where it needs to be, in an unadulterated form.

Of course, if I could keep my being where it needs to be and NOT have the headaches, seizures and tinnitus, then that would be ideal. But to do this I need to take medication that may or may not be right for me.

I took Depakote once before, years ago. I seem to remember tolerating it well. But I wasn’t taking notes at that time, and my Self was quite different then.

I guess I need to decide which is more important to me.

Regardless, if anyone has any experience or information that might assist me, then I’d love to hear it.

Keep Calm and Carry On.

KEEP CALM
and
CARRY ON.

 

My body feels broken
my spirit feels weak.

Yet somehow I made it
through today
and I will make it through
tomorrow as well;
for that is what I do

I carry on
I carry on.

I was weak;
I am weak.

Yet all I need to do
is nourish my soul
I will find the strength

to carry on
to carry on.
20130219.2230
Copyright (cc) 2013 John Onorato. Some rights reserved. by-nc-sa

 

Expressing needs

Everyone has needs. Some of us are better than others at getting those needs met. I myself am pretty awful at it.

Gratefully, I was not physically abused as a child. I certainly hesitate to ascribe the label to myself. I was emotionally abused, though. Abused and neglected as well.

I learned that others’ needs were more important than mine. I learned that my needs meant nothing in the grand scheme of things. I learned that I could express myself, but I could also go pissing in the wind, and the latter was more likely to have a positive outcome.

I learned that I didn’t matter.

Gratefully I have learned that I do, in fact, matter. This seemingly small shift has had a profound effect on my life, and some time later I will go into exactly how I think I made that shift.

Even though I say I’ve made that shift, though, I still have trouble asking for what I want — indeed, for what I need to have a sane living environment.

My roommate here at brain injury rehab is profoundly different from me. He’s very earthy, a lower-three-chakras kind of guy. I am intellectual and creative; I value wisdom and have my head in the clouds a lot of the time. He spends his free time smoking and watching sitcoms, while I write, read, meditate, and so on. There’s certainly no value judgement implied in that. He is what he is, just as I am what I am. It takes all kinds to make the world go around.

But when his TV is loud, and I am being particularly sensitive to noises, his laugh track is grating on my last nerve …

… I suck it up.

I have asked him to turn his TV down. He will do so. But when I ask his manner tells me that he is inconvenienced, put out, and none too happy to accommodate me. I have observed that this is his way, his manner. He is not actively rude to anyone. He’s just not polite, not particularly nice or compassionate.

In many ways he seems to have what is called a “flat affect.” He seems to be almost emotionless. I’m sure he does still have feelings, yet they simply do not come out on his face, which is yet another point of contrast with me: I wear my emotions on my sleeve.

This is hard for me to deal with. When I express a need to someone, I want them to make it a little easier for me to express that need, by saying something like “oh, I didn’t know my TV was too loud for you, let me turn that down.” Or by smiling at me. Or apologizing for the noise. Or some damn thing.

With my roommate I barely even get a grunt. I get what I wanted, yeah, but it’s like pulling teeth to do so. And I don’t want to do that.

It makes me profoundly uncomfortable to express a need of mine to my roommate, and I’m not sure what to do about it.

This is yet another growth opportunity, I’m sure of it. If things had gone easily, I wouldn’t be journaling about them.

 

Yesterday at rehab

So I started some shit at rehab yesterday.

And it occurs to me that the other day I totally missed out on telling you what sort of rehab I was in. It’s brain injury rehab.

I sustained a traumatic brain injury some 28 years ago, when I was 15. I’ll tell that story another time; I already have, but it is such an integral part of my life, that it bears repeating.

But you really want to hear about this shit I started, don’t you? Don’t bother to deny it. I can see it on your face.

Much of the lighting in the United States is fluorescent. They’re cheap to make and easy to put up. This is why they are everywhere. Were you aware that fluorescent lights turn on and off many times a second? They do this so fast as to be undetectable by the human eye. Most human eyes, that is — I’ve recently discovered that these lights trigger me. They also trigger lots of other TBI people.

Fluorescent lights can fail, though, when either the bulb or the ballast goes out. When this happens, the flicker is slower and is detectable by most people.

The lights in the classroom we use are like this. They flicker very badly. If they are on when I am in there, I get very nervous, very anxious. Usually we just keep them off and use floor lamps, but today for some reason the teacher wanted to give me some shit about the lighting situation.

When I expressed my concern and need to her, she told me “These lights are everywhere in the United States,” thus suggesting that I just suck it up.

When I told her that I felt dismissed by her, essentially blown off, she said “I’m not going to talk with you about this right now.”

Yes, this is a teacher in a rehab facility.

Do not fuck with me. I wasted no time in going over her head and filing a grievance report. I don’t yet know what is going to become of this, but I feel like I did the right thing. I tried to address the situation with her, and when that failed I went over her head.

So. That’s the shit I started yesterday.

 

Here in rehab

So here I am in rehab. It’s been a while since I’ve written, I know. I’m not going to make any excuses for that; I’ve been tired, depressed, lack of energy, didn’t feel like anyone cared about my writing, etc etc etc.

But who cares, really? I’m sure you don’t care for my excuses. You just want to read what I’ve written. That’s why you followed me, after all. Or maybe you found this post through a tag search.

So I’ll shut up about that. Two short paragraphs should be more than enough to explain a hiatus of about five months.

So here I am in rehab. No, it’s not drug or alcohol rehab. Gratefully, I’ve never had problems with either of those, but I respect the inner fortitude of those who have dealt with that demon and come out whole on the other side.

I’ll remind you what my story is another time. For now I want to tell you about this rehab thing.

I’ve been here less than a week, and I love it. Here I feel happier than I’ve been in a long time. I’m happier doing things, happier making a difference, happier helping people, happier while getting the ego strokes from doing a good job.

I’ve been tired — I slept like crap for a night or two at home, anticipating coming here. I slept like crap after getting here. I missed my family, I missed my dog, I was in an unfamiliar environment on a bed that was much firmer than I was used to. The sounds and smells were totally different. Despite how bone-ass tired I was, I would sleep maybe 3-4 hours a night, get up and be completely awake. I meditated a lot, but it didn’t help. I tried every trick I could think of, but nothing worked.

 I participated in classes, but I didn’t have the energy to take care of myself. I almost set the kitchen on fire, my 2d night here. I could barely drag myself up the stairs, play 10 minutes of a game and then stare at the ceiling for the next four hours.

From what I can tell, the rehab is already being amazingly effective. I’m happy, as I said. It feels good. And I’m going to ride this train until the last stop, and hopefully carry its lessons into the rest of my life outside of this microcosm.

More about this later.  I hope to chronicle things here, and remember the first week as I am able.

Dr Edward Shirley

There is a hole in my heart that wasn’t there yesterday.

A few hours ago I found out that one of my professors from college has passed away.  He survived a stroke ten years ago, and died the day before yesterday, victim to complications from shoulder surgery.

Yeah.  My reaction too.  Shoulder surgery?

I wouldn’t be the same person I am today without Dr Edward Shirley.  I believe myself to be a welcoming and tolerant man, one who looks at the person, not the stereotype.  Oftentimes I credit my education at Saint Edward’s University for that.  Yet Dr Shirley was such a huge and integral part of that education.

He accepted me and loved me for who and what I was.  Unfortunately I was not ready to accept that love for what it was, and I held him at arm’s length.  I had no basis for love of that sort.  I didn’t know where to put it or what to do with it.

So I pushed it aside.  I still found him fascinating, and I knew there was something I wanted from him.  Little did I know at the time that all I wanted was to be around him.  I wanted to soak up his darshan, the Sanskrit term to describe the radiance around a holy man.

I took as many of his classes as I could.  Though I was not a Religious Studies major, many of his courses were interesting to me on a personal level.  I have always had an interest in religions, especially Eastern ones.

And even though I pushed it aside, he loved me all the same.  He loved all his students, and I was no different.  I was no less deserving in his eyes.  I was no less a person for my experience.  I was no less to him, even if I believed I was less, that I was injured.

I don’t know if I told him about my brain injury or not.  I don’t think I would have; at the time I was very much minimizing it and doing my best to get on in a “normal” world.  I don’t think it would have mattered to him, though, not nearly as much as it mattered to me at the time.  I think he would have loved and accepted me anyway, injury or no.  Had I opened up to him at the time, I think I might have come to some acceptance of it a long time ago.

I can see his influence in all the comments on his Facebook page.  So many people have wonderful memories of him, of him coming into their lives, of them doing things together.  I have no such memories, and I find that I am jealous of these other people for the joy they have shared.

Yet Dr Shirley touched my life all the same, and I can honestly say that he touched it irrevocably, and set it largely on the course that it is on today.  I may be completely adrift in many respects, but my spirituality is solid, if only for the finger of Dr Edward Shirley.

It is unfortunate that it took his passing for me to examine so deeply, and see where that seed was planted.

Harry Potter, apparently, was one of Dr Shirley’s favorite things — he taught a college level course in it, one that I never had the pleasure of taking.  I get the impression that one of his favorite quotations was by headmaster Albus Dumbledore:  “To the well-organized mind, death is but the next adventure.”

That seems appropriate.

image credit:  https://picasaweb.google.com/102969138325074483340/EdShirleyRemembered