"Negligence is the rust of the soul, that corrodes through all her best resolves." - Owen Felltham

I've been neglecting this blog. I've been neglecting writing, and other things. It's winter and the snow and ice is just dismal.

My eyes are so dry I haven't worn my contacts for weeks. Dry eyes can be a symptom of head injuries. Strange isn't it?

No, not really. Our brains control everything, our mood, our thoughts, our sensations, the regulation of our bodily systems.

But I'm tired of talking about brain injuries. I don't want to seem like I'm complaining. (I am.) (Sometimes.)

I'm teaching myself how to play the Ukulele. Although it's touted as the easiest instrument to play, it's tricky. My left hand is the chord hand and my left side is the "slow side". But I like it. I'm not good at it, not by any means, but it's fun. Ukulele is a happy instrument, and playing it makes me happy. I'm not worried about being "good" or "good enough" to play for anyone else. I'm doing just that - playing.

And all this while Rome burns.

So many other things are overwhelming. I can't even think about taxes. There are all these lovely free programs for people under certain income levels. (Unemployed should count, eh?) But I've got a bit of complexity, so no one will offer assistance. After months (MONTHS) of struggling to get all my receipts in all the right folders, I stopped at my accountant.

"How much would it cost if I just gave you everything like this? They're all in categories, but I haven't tallied everything up."

She looked at me for a moment, disbelieving, and said, "Well, you might want to do it yourself and just give me the spreadsheets." (This is what I USED to do.)

Really, the mere task of finding and organizing everything had brought me to tears on numerous occasions. The thought of adding everything up and the countless errors and redoing made me feel like vomiting.

"How much?"

"My rate starts at $125 an hour."

I took my files and went home. Mind you, These are the files for 2009 we're talking about.

So they sit in my car. I can stomach bringing them back into the house; that would feel like defeat.

So I play the Ukulele instead. Neglecting you taxes - I wrote a little song about it. Wanna hear it? It goes something like this...

There Is Nothing Wrong With You

"Talking perceptions, people. Do we really see each other for what we really are, or do we just see what we want to see, the image distorted by our own personal lenses? I lost someone today and the funny thing is, I don't even know who she was." Jeff Melvoin, Northern Exposure, Lovers and Madmen, 1994

My friend Sue keeps telling me that. I don't know why it's so important for her that there be nothing "wrong" with me. Part of the problem is probably that she didn't meet me until after the accident. She only knows me as I am now, so for her, there's nothing to compare, no "before" to my "after".

I find it extremely difficult to deal with the "oh, you're fine" attitude. While it is true that brain injuries, especially the mild ones, can be largely invisible injuries, I am impacted daily by my new modus operandi.

I say "new". It's been almost four years since the accident. It's still new to me. Comparatively speaking 37 years versus four - yeah, it's still new.

I understand that many of my friends and cohorts are hitting their midlife stride. With that comes some alterations, changes in vision, hearing, perhaps mild cognitive decline, "Where DID I leave my keys?" But it is fleeting. It is occasional. It is not pervasive. Let me say this definitively, It is NOT the same as a brain injury.

Misplacing your keys occasionally because you're overbooked, or overworked or overtired or over caffeinated doesn't compare. (I know you all mean well when you say things that attempt to normalize or minimize but at some point it just becomes frustrating.)

As an illustration of my point, I offer an example. On Tuesday I dropped of some artwork for a show. I needed to fill out cards which were taped to the backs of each painting. They listed the title of the piece, my name, the medium and the price. I was in the midst of a migraine so from the get go, I wasn't at the top of my game. I made some error and apologized, telling Sue, who was sitting across the table from me, that I wasn't having a good day. She's known me long enough to know that's my code for a "Bad Brain Day". She laughed, made a dismissive gesture and said, "Oh, you're FINE. There's nothing wrong with you."

I seethed, and continued to fill out the cards for my six painting.

After I finished, I said my goodbyes and I left, four crumpled cards balled up in my jacket pocket. On one, I'd written down the wrong media. Another, I'm mis-spelled a word in the title. The third I'd written something on the wrong line, and the fourth - on the fourth card I had spelled my last name incorrectly.

I spelled my name wrong.

How often do you spell your name incorrectly?

How often do you make THAT many mistakes in rapid succession?

The more I think about this incident, the more I want to believe Sue. As I try to come to terms with who I am now, I want to accept my new abilities and limitations as simply factual, without judgement or disappointment or regret. This is how I am. This is who I am. While I am definitely changed, and have definitely lost some speed and some ability, I need to stop judging that fact and, by extension, myself. In that sense, perhaps there really is nothing wrong with me.

You Can Take of Leave It If You Please

"Anyone desperate enough for suicide...should be desperate enough to go to creative extremes to solve problems: elope at midnight, stow away on the boat to New Zealand and start over, do what they always wanted to do but were afraid to try." Richard Bach

Suicide is a hot topic right now. There's been a rash of teen suicides in the U.S. that are being connected in the media, and in many people's opinion, with bullying.

I maintain the unpopular and challenging opinion that healthy people do not commit suicide. Even when the situations in their lives appear bad, or even hopeless, psychologically health people seek different alternatives.

Acknowledging that this is uncomfortable for many people, let me also say that placing blame is one way to make sense out of what feels to many to be a senseless act. We want to know "why". It is a basic human need. We want to make sense out of things that are difficult. How many times have we all heard someone say, "If would all be easier, if I could just understand..."?

It's easier to blame something bullying than to try to understand why someone felt that killing themselves was their only option. Bullying is wrong. People who bully are bad. If the bullying was the final stressor in a series of stressors that pushes someone over the edge, so to speak, then we can feel good about blaming the bullies for the suicide.

But...

There is one problem with this logic. The bullies aren't the ones who pull the trigger, or swallow the pills, or open the vein.

If someone decides to rob a bank because his friends repeatedly taunt him and egg him on society still holds the bank robber responsible for his actions. We each have choices. We choose to seek help or succumb to bullying or torment or financial stressors. People choose their fate. They choose to live or die.

The bully does not make that choice for them. THEY choose for themselves.

With that being said, there are factors that make reasonable choices about suicide more difficult. Being a child or teenager is one of them. Adolescent brains do not have the impulse control abilities of a fully mature brain. What that means is that adolescents have a harder time stopping themselves from doing things, especially when those things relate to peers, or coincide with heightened emotional states.

Ok, once again, adolescence + heightened emotions + peers = bad judgement.

Add a brain injury into that mix and you've got a recipe for disaster.

Brain injury often affects something called "Executive Function". Executive Function is the brain's decision making ability. Brain injury can also damage impulse control and other areas of behavior and emotional regulation.

Do you see how any of these symptoms can make a bad situation infinitely worse when dealing with multiple external stressors (bullying, death in the family, poverty, legal issues, etc.).

The following article is about the suicide death of a football player who, after autopsy, was found to have suffered repeated brain injuries.

http://www.cnn.com/2010/HEALTH/09/14/thomas.football.brain/index.html?hpt=C2

So what's the answer? I don't pretend to know. Perhaps there isn't one. However, I am suggesting that subtle brain injuries are very likely behind some of the adolescent behavior which adults find distressing like AD/HD, ODD, Depression, and Suicidality. I am suggesting that people, especially adolescents, with a known Brain Injury should be monitored differently than uninjured people.

I am suggesting that these injuries can, in some people, create a perfect storm of depression, hopelessness, frustration and impulse control and can end in suicide.

I am also suggesting that there is always more than one reason why someone commits suicide, and the easy answers aren't necessarily the best, or most illuminating.

Acme Overload (100th Post!)

"Physical pain however great ends in itself and falls away like dry husks from the mind, whilst moral discords and nervous horrors sear the soul" - Alice James

Back in the 70s there was an Acme Market in my hometown. Just like the one in the picture it had a huge wall of windows and I remember it being lit primarily, during the day anyway, by light from the windows. It wasn't a mega-store. Mega-stores didn't exist in the 70s. There weren't hundreds of brands on the shelves. It was just enough.

Our Acme closed, but they still exist in New Jersey and I shopped at one today. Alas, it was not the charming experience like that of my memory. Inexplicably, they were pumping some horrid techno-dance music through the speakers. It was so loud I could actually FEEL the beat. I could think of nothing else; the music was all that existed. Well, the music and the endless rows and rows of food.

It was my own fault, really. I'd stopped at the Acme on my first night here to pick up some supplies and they were playing ridiculously awful music then as well. It was late at night so I'd figured it was a fluke, or the night staff playing fast and loose with the sound system. Apparently, the horrid techno is standard fare.

Techno beats are literally one of the most distracting things in the universe for me now.

I don't know how I managed to get the things I needed. Actually, I didn't the first time. I got some, but not all. It got to the point where I had to leave.

Tonight, it took forever. I wandered around for much longer than it should have taken. Perhaps that's the point, although I didn't see anyone else wandering the aisles looking like a lost puppy.

I used to be able to shop well. I was like a commando on a mission. In, out, one shop, one kill - or something like that. Now, I shop like a man. Slightly confused, lost in the store, distracted, frustrated... the list goes on.

I finished, obviously, but I'm disturbed by my inability to function well in commercial settings. I either lost it and flee the store, or end up buying tons of crap I don't need and, more often than not, forgetting what I'd gone shopping for in the first place. Lists help, but half the time I forget the list, or forget to put everything ON the list.

More and more I think I may need to invest in a smartphone. The idea of having a calendar and lists and reminder alarms all in one place is quite attractive. The downside is that it's just one more thing to misplace, and losing a two hundred dollar phone would ruin my day. I also think that the act of writing, physically marking something down, is more supportive for memory than typing something into a phone.

There must be a better solution, some way to not become completely overwhelmed. It has been suggested that I try Ritalin, but I hate to add to my pharmaceutical cocktail.

This is my 100th post on this blog. It should have been better than this.

The Habit of Joy

"It's possible to forget how alive we really are. We can become dry and tired, just existing, instead of really living. We need to remind ourselves of the juice of life, and make that a habit. Find those places inside that jump for joy, and do things. -Anonymous (http://www.thinkexist.com/)

I am at the beach, or, more precisely the water. A strange chain of events provided me with a lovely cottage on "the channel" in Stone Harbor. For months I'd been promising myself this break. It's been a rather rough year, working on my degree, an internship, Gram's illness and death, months of testing to see if I had Lupus, the collapse of my marriage, continuing legal woes. Any one of these would have been enough to warrant a few days away. Taken together, I'm thankful I'm not writing this from a padded room.

Today I walked to Nun's Beach. Nun's Beach is the (semi) private beach in front of the ocean-front convent in Stone Harbor. The nun's know a little something about going on holiday. Location, location, location, dearies.

I am tired from the walk. It wasn't far, but I'm out of practice. The internship and doctoring and fatigue has prevented me from keeping up with the walking I'd started in the spring. It's a difficult decision, do I maintain a consistent exercise practice which I know will help and support both my physical rehabilitation as well as my mental health, or do I try to lead a "normal" life (keep a real schedule, try to hold down a "real" job)?

Is it even possible for me to maintain a normal schedule and life?

At the moment, for me to function best, I need at least 8 hours of actual sleep (not just lying in bed, but sleeping), an hour of movement (walking and aquatic exercises are best) and approximately an hour of stretching/yoga which works best when divided throughout the day. I admit, that doesn't sound like much, until you try to actually fit it into a day. Especially when you're exhausted from trying to do normal things, like pay your bills, or take a class.

I don't want to sound like I'm whining. I don't want to whine.

I'm scared.

How on earth am I going to find a job that allows me to do all that and work during my "good" hours and allow me time off for doctors and bad days? The answer is, I probably won't. Realistically, I'll be lucky to find any job at all in this market.

But this was supposed to be about joy.

Lately, I've been watching people that appear happy. They are not overly concerned with the details. They are responsible but their work and responsibilities do not seem like a chore. Quite a few of them are self-employed or part-time workers. They have time to do things that they love, and spend time with the people they care about.

What is more important than that?

There's no point in preserving life or even living it if there is no joy in it. Struggling and scrambling just to continue struggling and scrambling isn't enough. We must make joy a habit. We must do the things we love, the things that make us who we are. This is what sustains us when little else is left.

Tomorrow, I will walk to Nun's Beach again.

Who Am I?

"My life has been one great big joke,
A dance that's walked,
A song that's spoke,
I laugh so hard I almost choke,
When I think about myself."
-Maya Angelou

Yesterday's post got me thinking about how my idea of self has altered since the accident, which made me realise that any injury or acquired disability is an assault or, at the very least, a challenge to the self.

But what is the self? Who am I? Who are you? Are you your idea of yourself or something else?

How does our self-image relate to the reality of who we are? Does it relate? Does it matter if our idea of who we are is vastly different than others' idea of who we are?

My idea of who I was changed drastically during my recovery. For years I was what I could do. I was my intellect. I was my achievements. I was my talent. I was my ability to stay up for three days and get ANY project done at the last minute.

Now... all that has changed. Or, at least it feels different from the inside. None of those things feel the same as they did before. Now, I feel as though I am my injuries. I am my story. I am my limitations.

At the same time, I understand that most people who meet me can't immediately tell that there is anything wrong with me. Some of them never notice. On one level that is a relief. I still pass as "normal". On the other hand, my injury is invisible. No one knows how hard things are for me now. No one knows unless I tell them, and often, that just feels like complaining.

I'm caught in that no-man's land of non grievously injured enough to be an inspirational recovery story, and walking away unscathed. I'm stuck with a life, and a self that has been irrevocably changed. Perhaps in some ways for the better, in others, definitely for the worse.

I cannot deny that I have been changed by this experience. Perhaps the most difficult thing to accept is that change is inevitable, even we are changeable. We tend to think that we will always be as we are. Or at least, that if we change, it will be by our choice. That's just not the case. Change comes, whether we are prepared or not. Do we move with it, and choose the outcome, or fight the inevitable, changing against our will while desperately clinging to the idea of what we were?

*** Blog Contest: Download, print and color the image in this entry and email it to lmestishen@comcast.net. Be sure to include your name and address. The winner (my choice, obviously, gets a copy of one of my favorite books.

Who's Who

"Looking back, you realize that a very special person passed briefly through your life, and that person was you. It is not too late to become that person again." - Rober Brault

This evening I had the pleasure of having my portrait painted by artist, Eric Armusik. It is the first time anyone has created an image of me, in a medium other than photography, since I was five. In 1975, while my family was vacationing in Ocean City, a boardwalk artist did a charcoal sketch of me. It still hangs on the wall in my parents' house.

Sitting for the portrait, while a great deal of fun (Eric and his wife Rebekah are delightful), was taxing. Staying still is harder than you think, especially when you MUST remain still. The neck and back injuries began protesting almost immediately, but I was allowed breaks to stretch and reposition. That aside, it was a marvelous experience and I shall treasure the portrait, but all this focus on my visage got me thinking about the self and our, or rather my, image of it.

One of the scarier moments post accident was when I was casually flipping through the photos on my ex's phone and found a picture of a woman I did not recognize. She was smiling at the camera, with a look that implied a relationship with the photographer. It wasn't vulgar, or flirty, just, knowledgeable.

I freaked out.

Who was this woman? Why did he have a picture of THIS WOMAN on his phone? Why was she smiling? What the hell?

As I began my rant and asking those questions, in escalating degrees of shrillness, my ex looked at me, at first amused and then baffled. "Are you serious?" he asked.

"Yes."

I was deadly serious.

He paused a moment and said, "It's YOU, Lor."

Then it was my turn to pause. I looked at the picture again. Then I looked harder. Then I realized that the woman was wearing my jacket. And that I recognized the location. Although I knew it HAD to be me, my brain still wouldn't accept the fact. There was absolutely no recognition that the woman in the photo was me.

I was terrified. Nothing had ever happened like that before. Sure I'd forgotten names and dates and things since the accident but I didn't recognize myself. Disorienting doesn't begin to explain the feeling.

Lucky for me, I've never had a repeat of that experience, but it was enough to give me a taste of what "real" amnesia must feel like. Technically, I have what it know as an "Amnestic Disorder", which is, simply, a problem with how memory is created, stored, or retrieved. It comes in many forms, some more benign than others. Even with the things I have lost, when I consider this incident, I feel like I got off easy.