the end of my rainbow

They bounced high off the trampoline into the air. Laughing screaming smiles stretched wide as mouths could reach. Acorns flipped summersaults in the air along with the two boys having fallen from the oak tree branches hanging above. Metal legs rumbled on the grass with each landing scooting the large circle a tiny bit here or there.

It was a beautiful day. Not as hot as the last few surface of the sun days by far. So when the kids asked if they could go outside and jump I said yes. I looked up at the cotton ball clouds watching them drift lazy-like in front of the crystalline perfect blue. Sometimes you forget how high the sky is. It really does go on forever up there.

I turned on the hose, squeezed the trigger letting the water fly. The soft spray sent a mist up high into the air above the netting around the trampoline. The kids shouted and yelled happy sounds. Warm at the start, the sun-heated liquid slowly went through the length of rubber tubing until the colder water from our underground well reached the end making their screams rise even higher in pitch.

“Oh my GOD!” He shouted. “This is SO great!” Skin on both of their legs, chest and backs covered in leaves and twigs. Once they got wet everything seemed to stick to them. But they didn’t care. Neither did I.

My fingers pulled the trigger in tighter, narrowing the opening at the end of the nozzle. The water shot out faster and harder. I aimed it at each boy one at a time. They jumped around trying to dodge the spray even though they really wanted to get hit. The three of us laughing together a beautiful trio not caring if any of the neighbors thought we were too damn loud.

“Hey Dad, Look! A rainbow!” I loosened my grip a bit widening the spray again to a round flat hush.

“Where?”

“Right there!” He pointed his finger down to a spot just above the surface of the trampoline. “How cool!”

“Yeah buddy. That is cool.”

Slightly out of focus. Redorangeyellowgreenbluepurple blurred together in a curved stripe about six inches wide. Colors sharp and vivid if I looked at them in the right angle. As soon as my head turned the most miniscule degree, it vanished until I looked back. I tried to follow the curvature upward but the netting around the tramp seemed to act as a border preventing it from reaching further up into the sky. It was here just for the three of us. We didn’t have to share it if we didn’t want to. And we didn’t. Our very own private rainbow.

“I wonder where it ends Dad.”

“At the pot o’ gold pal.”

“What’s the pot o’ gold?”

I looked back at the rainbow that disappeared right next to the four small feet leaping up and down.

“Right here kiddo. The rainbow ends right here.”

a.m.k.
Wednesday July 27, 2011

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the mere thought of the match

Remain seated until the ride comes to a full and complete stop. Up and down. Fasten your seatbelt. Up and down. Please allow the safety bar to lock in place. Blurred and focused. Keep arms and hands inside the car at all times. Blurred and focused. A baseball has 108 stitches.

Things have been a roller coaster lately. My health has been questionable, which is not really a surprise to anyone who knows me at all, and my personality decided to rear an ugly unexpected and unwelcome head. Frankly I’ve been a raging dick over the last few weeks. No matter what the cause, it’s unacceptable and unforgivable. It’s embarrassing really. My fuse was too short for the fire to even light it. I exploded at the mere thought of the match.

As much as I complain about the state of the medical system these days, and I do feel justified in my opinions, there are some things that they have done right. Sometimes the medicines they prescribe do actually work. I know… I know that’s crazy talk coming from me. Yesterday the chemicals flooded back into my system and lifted the veil covering my eyes so that I can start to see out of this fog of pain again.

No. I’m not talking about anything illegal or nefarious. I’m talking prescribed medications that I’ve been on (and off of) for a while now. Sometimes you need to take a break and feel like total shit for a week or so to realize how much the medicines are really helping. Yes I still have pain, and yes I will always complain, and yes I will always be cynical, and yes I will always point out the dust motes floating around the otherwise beautiful blue sky. But it’s not as bad as it could be.

For the moment I can still walk. I can still goof off with the kids. I can still write. I can still laugh. I can still enjoy a good book. I can still throw my dog’s favorite toy so she can chase it. I can still kiss my wife. I can still tickle my kids. I can still listen to music. I can still cry at a good movie. I can still go for a slow walk (with a cane) outside and smell the forest.

This past weekend was great. We went to a Borders bookstore and got a ton of great stuff for the kids. Not to mention the haul I got for myself too. It’s really sad and frustrating that such a great store is going out of business, but I definitely didn’t feel guilty taking advantage of the sale. After that we went to a fabric store and Melissa got inspired and actually started making a quilt again when we got home. It’s wonderful to watch her having fun with all that stuff!

Sunday was all it should be. We hung out at home, watched teevee, read books and basically goofed off. There was some cleaning and chores thrown in there too, but it was a well-deserved lazy day. And for those of you who don’t know, I found out that my publisher announced my first novel on their website. Not a huge amount of fanfare, but it’s an amazing feeling for me!

I smiled a lot this weekend. More than I have in a very long time. We all did. Sometimes it’s important to stop being cynical. Some times just brushing everything off and allowing yourself to be happy is the best medicine. I forget that. For some reason I enjoy wallowing in my own bullshit. I don’t know why.

That’s not exactly true. I do know why.

In our society it’s romantic to be the struggling artiste. It always has been. We don’t like to think that it’s possible to be happy and create anything worthwhile. We would rather be dark and mysterious like Beethoven or Rimbaud. Of course a tremendous amount of beautiful and important art has come out of struggles with misery. But there is room for a balance, to be both creative and positive in life.

All this baggage that accumulates in life weighs me down. What I am starting to discover is how much of it I decide to carry around with me matters, and how much I leave behind too. I’m trying to switch to a smaller carry on bag. Hopefully the airline will lose the rest for me so I won’t even have the option of picking them up again.

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Privatized Socialized Dehumanized and Barcoded

My temper sucks. It’s getting worse too. I don’t become violent or anything, but I sure am a grumpy fuck. I snap like a twig at the smallest thing. I see myself doing it and I hate it, but it doesn’t stop.

Nothing is getting better. I take all the medicines my doctors tell me too. I do practically everything I’m supposed to, but I’m not getting better. I’m getting worse. My hand responds less and less as time goes by. I fall down more often. I can’t pick up anything on the first try. People say things to me and I don’t understand the words. I respond to things by yelling and don’t even realize the volume of my voice.

To make matters worse, our medical system is a freakin’ joke. In my experience, doctors don’t train to work in the “Health Care” field anymore. They train to work in the “do whatever minimum needs to be done in order to get paid by the insurance company field” now. None of my doctors can tell me anything by the telephone anymore. Instead, my wife has to take time off from work so she can shuffle me from one appointment to another.

-And now for your amusement a brief interjection of what the usual appointments consists of-

• We arrive 20 min. early to the appointment.
• We sit in the waiting room reading advertisements for new medications (each with a minimum of 10 pages of listed side-effects and warnings) for over an hour
• My name is called and we are put in a small room with advertisements for even more medications with even more side-effects.
• We sit in said room for at least ½ an hour
• The doctor knocks on the door and comes in with my chart in his hands freshly pulled from the plastic chart holder thingy on the outside of the door that he has clearly not read over yet so he proceeds to familiarize himself with my case for the next 10-15 minutes in silence even though he was the one who recommended I come to see him because my problem was simply far too complex and important to be discussed over the telephone.
• He asks me the following questions:

- How are you feeling today?
• Like shit

- Any new symptoms?
• Yes. I feel more like shit than last time I saw you

- Any new medications?
• Just the new stuff you prescribed me last time that the 25 pages of warnings I read (obviously you didn’t) told me was going to make me feel like shit

- What can I do for you today?
• I dunno…you’re the one who made me schedule this appointment. Here’s a crazy thought, help me find some way to NOT feel like shit. How’s that?

• He tells me one of the following things:
- You need to see a specialist for that
- Let’s stay the course for a little while longer. The new medicines should start to work by then.

• Now I usually try to say something here
- I’ve been having a lot more pain
- I’ve had quite a few more seizures
- …finding it difficult to catch my breath
- …can’t sleep at night
- …nothing seems to be helping

and here’s my favorite response that I get from my Primary Care Physician, Cardiologist, Neuorologist, Endocrineologist, etc…

Sounds like you have Sleep Apnea.

I say, Yes it does. All of my other doctors say the same thing

Have you had a sleep test?
Well, if all twenty of my doctors, not just doctors, but SPECIALISTS that I have been officially referred to say that I have this mysterious and mystical disorder (That almost everyone has by the way) why do I need to have a sleep study?

Well, I can’t do anything about it unless you have a sleep study
first.

So let me get this straight…Every doctor in the entire state
1. knows that I have this disorder
and
2. knows that treatment of this disorder will help solve too many of my issues to list?
Why can’t we just start treating the disorder? Aren’t you a doctor? Wait wait wait…you are a SPECIALIST that I have been referred to by other doctors who are also SPECIALISTS. So that’s means what exactly?

I can only treat what I specialize in.

In other words, the insurance company will only let each SPECIALIST do exactly what they SPECIALIZE in and nothing more. Nothing. Even if these SPECIALISTS know for a proven scientific, medical fact that a large amount of the pain I am experiencing, the heart problems that I have, the anguish I have from lack of rest, etc could all be helped tremendously by treating this one area of my life with a relatively simple and common process, I still have to pay yet another SPECIALIST more co-pay’s and have my wife miss more work schlepping me all over the world and back in order to get said treatment after another three appointments and attempts at other medicines we know won’t work first? Did I also mention that this SPECIALIST is not covered by insuraunce?

Confused yet?
Aggravated yet?
Pissed off yet?

Now add on top of all this the fact that there are doctors out there who are refusing to treat children if their parents have the audacity to not have them Immunized yet. Not up for discussion. Don’t even knock on the door. If you are the kind of parent who will try to educate yourself just the smallest amount on how to care for the wellbeing of your own children, don’t come here. If you’re not going to listen to every syllable they say as the word of God, then they refuse to take you as a patient from this moment until eternity.

I understand that Doctors spend a lot of time and energy getting their degree and learning to practice the art and science of medicine. It aint an easy gig by any stretch. I understand why they might not want to be questioned at every turn because of an article that a patient might have read on WebMD. But isn’t one of the preeminent phrases in the Hippocratic Oath, “First Do No Harm”?

When doctors start acting like they can’t be questioned about anything at all, fights wholeheartedly against "Health Care". They want us to take care of ourselves so that we stay fitter/healthier/happier right? Well, removing our inquisitiveness and need to find out how to do so defeats that purpose completely. When the medical/insurance/pharmaceutical industrial machine in this country decides to dole out blanket statements like “Immunizations have no link to the rise in Autism” how dare they expect us to simply take it at face value? When each new drug commercial has more side-effects and risks than the partial symptomatic-at-best cure it might possibly offer, are we really supposed to just accept the risk as innevitable and start taking it right away?

We aren’t close to turning into a “1984” type society. We’ve been living in Huxley’s nightmare for quite some time now.

If a doctor wants me to believe the regurgitated rhetoric that Immunizations have absolutely no contributing role whatsoever in our culture’s increase in autism rates, show me one study that wasn’t funded by the Insurance/Pharmaceutical companies. Just one. They can't do that because they won't allow one to be done. Since not, then do me the common courtesy of not treating me like I have an IQ smaller than that of a bean plant because I don’t have an MD. I am not naïve enough to believe that the MMR is the only cause of autism. But you can’t be naïve enough to believe that it should be completely erased from the chemical/genetic/environmental cocktail that somehow does lurk behind its smarmy ever-evolving curtains.

Now that I have ranted a bit and digressed almost completely off track, I am still pissed off at the medical system in this country. We have this huge “debate” over health care in this country. The RIGHT says we have to fear becoming SOCIALIZED. The LEFT says we have to fear becoming PRVATIZED. Either way, what we have to really fear is being DEHUMANIZED. Unfortunately we are all just numbers to the insurance companies. The most frightening fact is that it iisn't changing any time soon and we don't seem to care enough about it anymore.

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make things = know thyself

The Dad played guitar and sang some songs for his son today. Since they were all the same melody and chords he played a medley of “the alphabet song/twinkle twinkle little star/bah bah black sheep” like he used to when the boy was a baby. Whenever he sang over the past year or so the boy didn’t like it. Dad would throw out a few words along with whatever Sesame Street episode was playing or a Willy Wonka tune and the boy would always respond with a short grunt and say, “Nokay!” At least Dad was his preferred tucker-inner at bedtime, so he didn’t take it too personally.

They were in the kitchen and the son was at the sink washing the dishes along with his therapist. He let Dad continue from start to finish of the entire medley. Maybe it was the guitar. He hadn’t been able to play that long for him in a while. The boy even walked over to the Dad while he sang and smiled. The boy watched his fingers for a chord or two and then looked him square in the eye with a huge grin across his face. It was nice. Then the needles started to dig in deep into his fingers. He started losing grip on the pick, the fretboard turned into a mysterious map he could no longer follow leading to treasures of sound that formerly came easily to him. So Dad shook his hands and put the instrument down for the day. The boy seemed sad watching Dad leave the room. The Dad was sad too. More so than he wanted to think about actually.

Dad slid the headstock of the guitar on to the rubber protected arms that held it up on the wall of the bedroom. He backed up a couple steps and held his breath looking at the box of wood and strings. An instrument that brought music out of tension, pressure, resonance and imagination. For many years it was the outlet of his free creation. Lately it was a source of immense pain and frustration.

He looked at the three guitars he had left. At one time he’d had a stable of as many as nine that he used pretty regularly. He wasn’t primarily a guitarist, but he liked the way that different instruments shaped the sound in different ways. This one gave a nice warm tone curling you up next to a fireplace on a rainy day. That one could make your ears bleed with brittle breakupitude and at the same time coo like a baby at mother’s breast. Most were all sold off now in vain attempts to pay bills or fill the kitchen with some edibles. A not so uncommon disappointment in the life of many musicians, but something that the Dad never thought would happen to him.

Since he wasn’t really able to play them all anymore it wasn’t such a big deal. That’s what he tried to tell himself that anyway. Still, every time he walked into his music room, it felt empty and lonely without them sitting in there waiting for him. His drums were still set up in there. He kept them clean and dusted them off on a fairly regular basis. He even slipped on the gloves he used to keep the sticks from falling out of his hands and allowed himself a few minutes a week to believe he was still up on stage.

Instead he typed. Albeit slowly, and with only one hand words did appear on the computer screen. Occasionally they formed sentences that made some bits sense. Sometimes they even sounded pretty good too. The sentences mortared themselves together and made paragraphs. Eventually the building grew taller until an entire page was filled. If he could focus his eyes long enough more pages took the structure even higher into building the cityscape of a story.

He wrote on the suggestion of his wife. She knew how frustrated and depressed he was. She said, “You’ve been writing your whole life. Songs, poetry and stuff like that. Why don’t you write a book or something? Use it as an outlet. Make some art!” So he did. He wrote a bit each day. He wrote for himself. It was actually kinda fun. Probably because he never really took it seriously.

He had a handful of short stories saved to a hard drive on his desk that he thought were pretty good. They weren’t Hemmingway or Burroughs, but they told the stories he wanted to tell anyway. He put inspirational quotes up next to his monitor to remind himself to have fun. To remind himself to create and to not take himself so goddamned seriously. Then he decided to start the big task. The intimidator! The self-confidence eliminator! He started to write a novel.

He had no direction and no concept of what, when, who or how. One night he had a very vivid nightmare so he started to put it down on virtual pages. Where would the story go? How should it end? Who are the people who live here? He didn’t let any of that matter. He just wrote for the sake of it. When the boys were at school and his wife was at work, he sat down at the computer for a little while each day and slapped his index finger into the white plastic squares covered in letters on his keyboard. Sometimes he got up and turned the television on after a minute or two. Sometimes he lost track of time and almost missed meeting the kids at the bus. It wasn’t supposed to go anywhere or do anything. It was just a way for him to keep being creative. “Make Things = Know Thyself” It was just for fun.

One day he bumped into an old friend who pinged him on Facebook. She liked his blog and asked if he ever thought of writing fiction. He told her about his short stories and sent some to her. She liked them. Really? She asked if he ever considered writing a novel. Well…actually… So he sent her what he had so far. Turned out she worked in the publishing industry and wanted to show the book to her partner. He said okay. Really? The partner liked it. When was it going to be finished? They were interested in publishing it. Really? Really. After a few more months of seriously attempting something this time, he found an ending he liked and finished writing the story. He emailed it off to a few other literary inclined friends he trusted to take a look at it and then sent it in to the publisher. A few weeks later he talked to an editor that the publisher thought might work well with him in the book's particular genre. Really?

The Dad went back into the kitchen and played a few games with the boy. He tried to sing again and the boy just said, “Nokay!” So the Dad stopped. He didn’t try again until later that night at tuckin time. Then the boy asked him to sing. So he did and it was the best music in the world. Really.

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