falling down...getting up

12:04 AM Monday morning. My eyes are blurry and unfocussed. My hands are shaking and I have to watch my fingers carefully so I can type the correct letters. I can’t stop my leg from bouncing up and down. If I do I don’t think I’ll be able to feel where I am.

It’s been three weeks since the surgery and my left foot is still numb. If I’m not wearing shoes it’s not so bad, but when I do it hurts. Walking is very strange. I use a cane because my right leg is weak and can give out at random moments whenever it feels like it. Combine that with a numb left foot and the constant vertigo and balance becomes a fleeting memory.

I bounce around from thought to thought starving for concentration. Having a conversation with someone is like trying to snatch one solitary voice out of a stadium crammed full of rioting people.

My heart went back out of rhythm two days ago. I felt like I was dying. I couldn’t get enough air in my lungs, my eyes refused to stay open. I couldn’t sleep but I wasn’t awake either. Stuck somewhere in between watching the hint of orange light from the window glowing through my eyelids.

When I woke up the next morning the steady beat was back. But none of my strength came with it. I used to be strong. Not linebacker strong, but I could open any jar and throw my kids high in the air into the pool. Now I can barely pull my socks off before going to bed.

It’s a cliché, but I’ve become a shadow of my former self. Sometimes I think I’m going to wake up from a bad dream. No such luck. I love to blame all of my health problems on genetic misfortune out of anyone’s control. I have to stop doing that. Now. If I want to get better I need to take responsibility for some of this predicament.

I mean the M.S. was not something that I could predict or prevent, at least as far as the medical profession can tell. Part of my heart problem is probably genetic. My father has a heart murmur and we have family members who died from heart attacks. But I spent years of my life not taking care of myself. I smoked, stopped exercising because I was lazy and ate like a fool for way too long.

Now I need to change that way of being. I need to care enough about myself to take care of myself. Whatever that means. Food, exercise, yoga, and transcendental meditation…I don’t know yet. I’m trying to figure it all out.

I am fortunate to have a great group of people who do care about me though. Being new in this small town has really opened my eyes. The neighbors who live behind us come over every day around lunchtime to check in on me and take Sadie for a walk. People call throughout the day to say hello and make sure I’m still answering the phone.

Last week I went on my first outing from the house since the surgery. We went to a local Holiday Bazaar and Penny Social where I bumped into quite a few people who hugged me and said, “It’s so wonderful to see you up and about.” I can honestly say that I didn’t know who most of them were. But they knew who I was and were sending out positive thoughts for my recovery. Definitely not something I am used to. But it feels really, really nice.

Sometimes it takes the affection of strangers to make you feel like you’re worth something. That’s why being on stage can be so addictive. You can get used to the people who are regularly in your life and take their expressions of love for granted. They blend with the voices in your head and sound the same as your own thoughts. That can be misleading when you lie to yourself all the time like me.

That’s my highest hurdle to leap. Being honest with myself. Not just being good to myself when others are around. Taking care of myself not only with what I put in my body, but with the thoughts I allow in my head. Recognizing that when someone says to me, “I love you”, they actually mean it. They are going out on a limb to express the way they feel. I need to hang with them on that precarious perch, believe what they say and accept that I am worthy of their caring.

Allowing myself to love myself should not be considered as arrogance. It is a necessity for healing. It is the main tool in paving the way for living happily. I don’t mean to say that I should find myself infallible. I will always make mistakes. I will continue to struggle with disappointing myself. The trick I think is to love myself regardless and accept the reality that I am human and can’t always live up to my own expectations. And that should be okay.

So what if I didn’t make the cover of Modern Drummer by the time I was eighteen years old. So what if I didn’t sell millions of records and win a truckload of Grammys. That shouldn’t be the bar by which I judge myself a successful and good person. It’s been that foolish thinking that made me treat myself so badly for so long. I don’t want to do that anymore.

All I know is when I woke up in the hospital and watched my wife sleeping on the couch across the room my main thought was that I never want to put her through this again. She showed me a picture that she took with her cell phone of me lying there looking like a sleeping alien. It seemed like there were a thousand tubes and wires going in and out of my body. As physically difficult as it was, I had the easy part. I got to sleep through most of it. Sure there was physical pain. That dissipates while the scabs and scars eventually heal and fade to tiny pink reminders. The mental wounds stick around. Memories remain fresh much, much longer.

If it means battling the voices in my head that have been repeating the same sick shit for decades I will do it. If it means challenging my instincts and trusting that the love of my family and friends is real I will do it. I will not allow myself to get that close to the edge again if I can help it.

By no means will it be easy. There will be slip-ups and fallbacks. So I will leave reminders for myself around this studio along with all of the other inspirational quotes and images I have posted on the walls. I will read them every day so I don’t forget. And for starters I’ll have a handful of baby carrots and work on re-building my strength. Hopefully In the next week or so when my neighbor comes over to take the dog for a walk I can walk with them.

My wife will probably kick my ass for taking so long to figure this all out. But better late than never I guess. Right?

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intubated

empty




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-cough-




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-cough-


-cough-

*thought
“what the…”

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-cough-

-coughcough-

*thought
“can’tbreathe”

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-coughcoughcoughcoughcoughchokestrugglecoughchoke choking-

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-coughcoughchokefightcoughfightfightcoughcan’tbreathefightordiefightnodie-
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-coughchokefightnodienodienodienodiehcan’tmovemyhandscoughcoughgag-

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-coughfightcoughcoughgaggagfightfightfight
“Shh. Honey it’s okay. Shh. Stop fighting us. We’re trying to take care of you.”
stopsharpplasticthingopensbringsmorselofairintolungs. notenoughnotenough not enough
closespushingairout
coughchokechoughcoughfightfightfightfightfioght-

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-strugglecoughpulltuggagcoughcough_
“Please calm down Alex. It’s going to be okay.”
-coughfightnodieneedairneedairneedair-
“Shh. I love you.”
Her hand rubs back and forth on my thigh. I focus on her fingers, the touch of her skin calms. I let the air pumped into my lungs give me a small taste of breath. Then it closes blowing my relief away whether I want it or not. Why is it so little? Why don’t they give me more? gagcoughfightineedmoreairgetthisthingOUTOFME!
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Voices. I don’t know them. What are they saying? Overlapping whispers. Confusion. One confident pulls order from the chaos. Hands pull around my head. Sharpness stings my arm.
“…he’s waking up”“…this here”“…slide”
then I hear through the din and drowning “…find something to make him gag”

WHAT? REALLY?

Cold stings my mouth. No air. Fading away. Thin next to thick pushing. Gagcoughchokegagcoughchokepushfightpushpushpulledpulledulledgagcoughcoughchoke

free.

Air.

My lungs gulp down the blessed air. I can swallow. I scream something I have never known or understood in my life. Hands pat my chest. There is laughter.
Her fingers rub my thigh.
“You did it. Just relax. I love you. I love you so much!”
I breathe.

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-

 


In the pre-op room surgery there is a cold, nervous energy that I don’t think exists anywhere else in the world. The nurses are smiling, doctors and patients make small talk and little jokes with each other as they fill out the final bits and pieces of paperwork and release forms the lawyers require before the cutting begins. No one holds eye contact for very long unless it’s a necessary test for reflexes or pupil dilation.

I tell a dumb joke and the entire room lights up with laughter. I’d love to think that I really am this funny, but I know it’s just the buzz of anticipatory electricity flowing through the room. Plus I see my wife shaking her head at the dork she married. It’s typical of me to make fart jokes when I’m half-naked wearing a surgical gown in a room full of strangers.

“Have you been shaved yet?” One of the nurses asks.

“Umm…not that I recall.” Obviously a nervous answer from me.

“Well, we need to take care of that before we go on any further.” She says and pushes out from the curtained area.

A few minutes later the curtain slides open again revealing a large man with a clean, shiny head, a sterile sealed razor raised high in his hand and a huge toothy smile on his face. “My name is Fancois. I’m here to shave you.”

Melissa claps her hands, “Oh goodie! Can I stay for this?”

“Sure, sure.” He says opening the seal on the battery-operated razor. I laugh nervously. As he lifts up my gown I start thinking about shrinkage for some reason.

“Now let’s keep him Jewish.” Melissa jokes. They both laugh hard and I cross my legs out of reflex. “Hey hon, it’s okay. He’s a professional.”

“Yes sir. Just relax.” Francois pats me on the ankle. “Just the leaves. Not the branch.” This of course starts of another bought of laughter making me even more self-conscious.

Francois eventually completes his task and tucks me back in under the warm, pre-heated blanket. A few moments later my anesthesiologist comes in and I have to suppress a laugh of my own. He tells me his name and title and starts checking off his list of questions before he can officially begin to administer any medication. I answer as best I can all the while hoping he can do his job much better than his look-a-like.

This Guy.





Now that his checklist is complete and the IV needle has been put into my hand, we’re getting ready to go. My OR nurse comes in to introduce himself and I have to hold back another laugh. Just so you know, one of my best friends for the last twenty years is named Jim. He is one of the most intelligent, witty and caring people I know. But if you didn’t know him, he like me, probably doesn’t have the most comforting appearance for a surgical nurse.



(Love ya Jim!)

He introduces himself and we talk a little bit about the procedure and what’s to come. I tell him that I am a pacifist, but when I wake up from anesthesia I am very loud and unfriendly. He tells me that he has three sons that he has coached in hockey and he can handle me if he has to.

For some reason this does not make me feel better.

At this point he says they are ready to take me in. They give Melissa and I a few moments of private time where we kiss and hug and cry and hold hands and say “I love you.” Over and over and over again. Still, it doesn’t seem like we have said it enough when I’m rolling down the hallway away from her.

After rounding a few corners we pull through two large double doors. The flashing lights, beeping machines and large flat-screen monitors make me think of Star Trek. There are five or six other people in scrubs milling around the room checking on things and getting this contraption connected to that who-sa-whatsit.

“I guess that’s where the pictures of my innards are gonna go huh?” I point to one of the monitors.

“Yup. Right there.” My nurse rolls me next to another table and pats his hand for me to “hop” over. I lift up on to my elbows and push myself over as far as I can. Then I fart. “Excuse me.”

“Don’t worry about it.” No one seems to notice. “You’ll be doing that a lot over the next few hours anyway. Now I need you to lift yourself up again. Try not to hit your head on the head hitter thingy.” He places his hand on my lower back and helps me lean up. Of course my head hits the “head hitter thingy”.

“Ouch.”

“Warned ya.”

“Yeah. You did.”

“So what do you do Mr. Kimmell?”

“Call me Alex.” I lay back down on the hard table. “I’m a musician and a writer.”

“Really? The last guy we just worked on was a musician too wasn’t he?” Several voices make affirmative sounds. I see the anesthesiologist out of the corner of my eye.

“How are you Mr. Kimmell?”

“Super duper. How’s by you?”

“We’re all set here.” He pats the back of my hand. “I’ve just given you something to help you sleep Mr. Kimmell.”

“Call me A…”

-

While there are many more moments I could share from my time in the hospital, I think I’ll save them for later. The most important thing is that the good folks over at Brigham Women and Children’s Hospital saved my life. My wife stood guard over me in ways that I cannot fully comprehend. She has more strength than ten thousand Spartan Armies plus two. I was unconscious or otherwise unavailable through much of what she had to witness and help steer me through. For that (and many, many other tings) I will be eternally devoted and grateful to her. Somehow through all of it, she somehow retained her wonderful sense of humor. Thus I will leave you with this one last memory of our hospital adventure.

“Catheters suck.” I said while shifting positions trying to find a comfortable angle.

“Actually, they drain.”

And… scene.

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9 2 1

I was thinking today about how our society is completely horrified of aging. How we choose to ignore that we as a species in fact do grow old as the years go by. We try to prevent it with skin creams. We fight with plastic surgery. We battle time’s onslaught with prescription and otherwise illegal drugs. None of it works.

Plastic surgery makes the majority of its recipients look even older. They end up looking like they are just trying too hard. Plus they all end up looking the same like in that creepy Twilight Zone episode from the 1950’s. Skin creams do absolutely nothing other than drain our already bleeding bank accounts. And drugs, well they help the pharmaceutical companies tighten their stranglehold on all of us.

We don’t like to watch old people on television or in the movies either. Maybe some already famous actor will be given a token role in a tear jerking family film as the tender-hearted grandfather or the crotchety old neighbor with a soul roughly chiseled out of gold with insights from a life’s history behind him that he shares to save the troubled youth from going down the wrong path toward naughtiness. He might even get his long overdue Oscar for his efforts.

We’ll gather around the flat screen at home to watch the comedy show guest starring the matronly and blue-haired former hot starlet saying dirty lines and acting in completely inappropriate scenes. We’ll laugh and joke about it at the water cooler on Monday and she’ll win her Emmy that some young six-pack stomached hunky actor barely out of his teens will have to carry off stage for her at the end of her acceptance speech in which she’ll name check people that nobody’s heard of since the 1940’s.

The aged are mostly relegated to the sidelines in our culture. We don’t respect their wisdom, knowledge of the world or the history they can teach us. But somehow we elect them into political office for those very same reasons. We don’t think they are worthy of driving, working or being our next-door neighbors because they might lower property values. If a man is too old to work in your office, how is it he is capable of being President of our country? I for one will never understand that pretzel logic.

In other cultures they honor and respect aging. Older members of the family are held in high esteem and their opinions not only matter, they are even asked for. Village elders are looked to for answers on life’s tough questions and depended on for how to shape the future. Here we ignore them and force them into retirement villages with shared televisions and unused ping pong tables.

Don’t get me wrong I’m as guilty of doing it as the next guy. I argue with my parents and ignore their advice as often as possible. Questioning authority is a part of how I was raised and I do think it is important to never follow blindly no matter who is leading. I always try to educate myself so I can make an informed decision whenever it’s possible. Somehow I know that one is going to come back and bite me on the ass with my kids. I hope it does anyway.

Recently I got back in touch with my very first drum teacher. I started taking lessons with him when I was ten or eleven years old. At the time he seemed like a wise and experienced adult to me. While in actuality he was eighteen or nineteen years old, just a kid himself. But I learned so much from him. He talked to me about things other grown-ups wouldn’t come close to addressing with me. We didn’t just have drum lessons. Man, we had life lessons. We talked about music and books. We talked about girls and how to be cool. Like most other “old people” he didn’t talk down to me. Most importantly he showed me how to be genuine.

Talking to him now I get the same feeling inside that I did all those years ago in that tiny, sweaty, loud and stinky drum room in the back of Action Drum & Guitar on Balboa Blvd. I feel alive and open. Maybe some more inches under my belt and a head worth of lost hair along the way, but the old feelings about the newness and freshness of life come right back to me. Here we are as middle age men. I’m just passing forty and he’s at fifty. Both of us are married now with young children and are experiencing life from this side of things. The great part of it is that I find myself still learning from him. The interesting part is that I think I might even be teaching him some stuff too.

I guess that’s my point in all this ranting and raving. I had my ninth infusion today and my second heart surgery is one week from tomorrow. So right now I feel like crap. Tomorrow I’ll probably feel better. I should just be getting back to feeling pretty good by the time they put me under in the hospital up in Boston next week. Needless to say, not looking forward to it. I’m nervous and fidgety. I flip flop between denial, ignoring it completely and unable to think about anything else at all. Not quite at sheer panic mode yet, but I’m sure it’s coming.

Anyway, back to what I was getting at before… In America we hold beauty and youth’s bejeweled throne up high on the shoulders of muscular young men and Barbieish young women with after market parts installed, skin stretched to impossible tightness and tummies tucked with ass fat shoved into their cheeks. They worship at their own mirrors. It has become the United States of Narcissism. We pledge allegiance to ourselves if we never get old in any way, shape or form. Gym memberships, hair dye and boner pills for all!

I guess it's taking the otherwise non-option of growing old and sliding it almost out of my reach that makes it that much more important. For me, it’s all I want to be able to do.

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Happy Halloween! (A short creepy story)

-Josephine-

It’s hard to clean them out. I pulled out the thin file, tip curved under the nail thingy that’s on my fingernail clippers. You know the one. The part we all use to clean the gunk out from under our nails. I think it was originally designed to be used on the cuticle or something. But I don’t know anyone who uses it that way.

Jamming it underneath the jagged edge I realized I should probably get a manicure at some point. I pulled in a quick hiss of air as the point jabbed in too far probing into the tender flesh. Filled with nerve endings that are normally protected from the rest of the world by my dirty nail, it hurt like hell. Lucky for me I didn’t go deep enough to draw blood.

I must admit I looked pretty despicable. Three of the lights over the bathroom mirror had blown out last week, but I’m just too lazy to get around to replacing them. In the light of the one remaining bulb, the green tiles on the counter reflected a swampy hue from below up toward my chin. I gave myself a Frankenstein grin and went back to the task at hand. Or task at nail for that matter. Cleaning my nails is usually a helluva lot easier, but the nail clipper tool was getting stuck this time.

I could hear him in the dining room flipping through my new coffee table book. It was all pictures of beat up rusty pickup trucks and century old fading barns that haven’t seen a paintbrush in decades. You’d think it would be boring, but there was something familiar to the images. They were almost spiritual in a way.

“I’ll be out in just a minute Gregg.” I shouted through the oak of the bathroom door. “Sorry it’s taking me so long.”

“No problem.” He sounded closer to the stereo now. “I apologize for the inconvenience, but I have to talk with everyone in town. What is this music you got? I like it.”

I placed the clippers back on the middle shelf of the medicine cabinet in between a half empty tube of Aim and the new package of shaving razors I bought last week, then wiped my hands dry on the daisy covered towel next to the sink. “Something my nephew sent me. He keeps me up to date on all the hip new shit. I love this record!” He was holding a disc case and reading the back when I stepped out of the bathroom.

Holding up the case he said over his shoulder, “I’ve never heard of these guys. Nice stuff. I can always rely on you for good music.” He put the case back down on top of the stereo and walked over to the fireplace resting his left arm on the mantel.

“I can make you a copy if you like. That is if you won’t haul me away in cuffs for breaking the copyright law Sheriff!” We both chuckled a little at that one.

“I won’t tell if you don’t.” Gregg held his right index finger up to his mouth pretending to shush me.

“Can I get you some water or something?” I walked toward the kitchen and started to root around in the fridge. “I’d offer you coffee or soda but I was just about to go to the I.G.A. tonight.”

“Thanks, but no.” Gregg walked over to the window and pulled the blue drapes over so he could look outside, possibly canvassing the area or some other law man stuff. “I’ve got to attend to business anyway. Have to see the Molina’s and a few more houses before I head back to the station.”

“What do you need Gregg?” I walked back out of the kitchen to the living room having found nothing of interest in the refrigerator.

“I don’t know if you heard, but Josephine Field is missing.” His hands clenched and I could tell he was upset about it. Gregg was a great Sheriff. He made sure to spend a little time getting to know everyone here in Pastor. We all loved him too. He was like our favorite uncle. He and I had been friends since we played ball together in high school. I for one wasn’t surprised when he went into law enforcement. He always had that commanding air of control in every situation. Whether it was throwing that perfect strike back in little league with a three and two count to end the bottom of the ninth or breaking up a bar fight.

“What? Oh my God. Not another one.” I grabbed the back of the couch to keep myself from falling over. This was the fourth time in three years. “Wh…” I swallowed hard on the word, “I mean, when?”

“Yesterday morning. She never made it in to the coffee shop.” Gregg raised his head toward the ceiling but kept his eyes closed. “According to Marcia she left for work around 5:30 AM, but no one’s seen her since.” His voice remained steady and matter-of-fact through the entire description. But I knew him well enough to hear the tiny tremble when he pronounced his long vowels.

“Marcia?” I had no idea who that was.

“Marcia Grayden is her roommate.” He explained. “They’ve been living together a year or so.” He raised his eyebrows a little bit at that. Then he whispered under his breath, “Pretty girls like that ought to have boyfriends if you ask me.” I don’t think he really meant for me to hear it.

All the guys in town had taken a shot at Josephine at some point. Her tip jar was always full with the hopes and fantasies of the single and married alike. She had genuine warmth to her personality that made everyone around her feel good about themselves. Not exactly flirtatious, but not exactly not flirtatious either. I always thought that those yellow brown eyes of hers could tame any lion.

“What can I do to help?” I went to get my fur lined denim jacket off the back of the table chair. “Do you want me to help put together a search party or something?”

“No.” Hands raised he walked towards me. “Hopefully we’ll find her before it comes to that. I just need you to keep an eye out for me again ok?” He sagged and I could see the weight bullying deep into his shoulders. “We’ve got to find her.”

“Sure Gregg.” I reached out and squeezed his arm gently. “I’ll do anything I can to help. You know that.”

Grabbing the hat off his head he wiped the sweat from the beginnings of a widow’s peak with his sleeve. “Thanks man. I know it’s a small town, but you’re one of the few folks around here I trust to have my back when things go downhill.”

I smiled and held my arms open wide. “What are friends for Gregg?” We walked to the door and I opened it for my old friend. It creaked a little on its hinge as he walked through to the porch.

“Keep your eyes open for strangers and stay by the phone just in case yeah?” Hat back on his head he could have been Glenn Ford or Gary Cooper in one of those old black and white westerns. He waved over his shoulder as he turned back toward the cruiser’s flashing lights.

Waving at the dust cloud kicked up by the tires pulling back on to the main road, I shook my head and locked the door. Don’t want be too careful with the possibility of strangers in town tonight. Closed all the drapes and turned the volume up. My favorite song on the album took its turn spinning around the air of the living room. “Oh which one of us is free…Josephine”, I sang along at the top of my lungs.

I grabbed the plate of leftovers out of the fridge and pulled off the saran wrap. The sauce was still tangy on my finger when I took a swipe. I balanced the plate carefully on my left hand and opened the closet with my right. Pushing my leather jacket and old dust covered letterman’s vest aside, I took the metal latch at the edge of the back wall and gave it a twist. The wall pushed back and I switched on the light so I wouldn’t trip going down the smooth cement stairs.

It’s a small town all right, and I love it here.

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Nolitangere

Early in the last century any attempt at surgery on the human heart was considered impossible. Every medical student was taught to never touch the heart. It meant certain death to any patient at the time and the prevailing concept of “nolitangere” would never change. Dr. Alfred Blalock and his lab technician Vivien Thomas swam against this stream and performed the world’s first successful surgery on the “blue baby” Ileen Saxon in 1944.

Doctors all around the world perform more than one million heart procedures every year now. What used to be a flight of fantasy is now such a commonplace concept. From quadruple bypasses to complete transplants. Extending life for decades where it would have stopped far short of that less than a century ago. Almost all of us have a family member or a friend who has gone through some sort of cardiac procedure.

If you are reading this, then you know someone for sure.

It’s raining outside today. Mist covers the grass in a thin layer between my window and the house across the way. Birds are quiet and the neighborhood dogs must all be inside. All I can hear are the drops of water falling from the sky as they land in the puddles their precursors filled up in the dirt overnight.

Chilly, but not too cold, the weather won’t start frosting for another month or so yet. I saw on the news how hot it is back out west. By the time I get home from my surgery next month we’ll be wearing heavier coats and probably hanging out under blankets in the house.

I remember coming home after I was first diagnosed with heart failure. I remember sitting down on the couch with my eyes closed. My dog Ringo jumped right up on my lap and shoved his nose against my chest. He held it there for a long time. Then he looked up at me and started licking my face. Anyone who says dogs aren’t intelligent needs to come up with a new litmus test. Ringo won’t be here to help nurse me back to health this time. But Sadie will.

I don’t know if I’m more apprehensive this time or not. I know what to expect at least. Though I’m not really sure if that’s good or bad. It’s such an odd thing to think about. I’ll be awake one moment, then nothing but black. I won’t remember waking up. I won’t remember yelling and screaming profanities at the recovery nurses. I won’t remember shouting at the top of my lungs “I need to pee!” because they just removed my catheter.

Unfortunately my wife will. She’ll have to deal with all of it. Once I calm down and regain a sense of myself, she’ll tell me everything I did and said. I’ll be completely embarrassed. I’ll shower the staff with apologies. They’ll smile and shrug their shoulders and say that a lot of their patients act like that when they come out of anesthesia. I won’t believe them and keep trying to convince them that, “I’m not really like that. I’m really a nice guy.”

I probably won’t be able to use my arms very much for a while. The operating table won’t have any supports so my shoulders will fall backwards for the seven or eight hours I’m being operated on. Small tears will occur in the muscles around the balls of my shoulders. That’s where most of the pain during my recovery will come from. My chest and the incisions in my nether regions will most likely not bother me at all.

We have a comfy couch and cable. Netflix too. I’m sure I’ll be catching up on all the crappy sci-fi that I’ve missed. Maybe I’ll watch “The Wire” or “Mad Men”. I don’t know. Any recommendations will be greatly appreciated. I’ll be on some great pain meds for the first few weeks so I might just be watching my hallucinations roam around the living room for a while.

I’m hoping I’ll be able to get in here on the computer from time to time. Since I won’t have to walk up stairs to get in my studio this time, I want to document as much of this process as I can. I may even see if Melissa will bring my hand held recorder in to my room so I can hear myself after I wake up. Maybe that’s a little dark, but for some reason it’s intriguing to me.

For now anyway, I plan on playing with my kids and kissing my wife a lot. I’m going to keep looking out my window and marvel as the leaves change colors. I’m going to read e.e. cummings, Danielewski, Matheson and Auden. I’m going to listen to Olafur Armalds, Bach, the Foo Fighters and the Damnwells. I’m going to work on my next book. I’m going to write music. I’m going to teach myself the Ukulele. I’m going to think about how hard Alfred Blalock and Vivien Thomas worked so hard to keep me and millions of others just like me alive.

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Writing is the loneliest thing I have ever done. I can’t say that I enjoy the process of writing, but I do love having written. There are fleeting moments when I get lost in the words my fingers are typing out and I am completely the story. No Id or ego, no I or Me, just the events occurring on the page.

Back when I was playing music I would get this out of body experience sometimes. It didn’t happen very often, but I would be playing a song with the band, my eyes would slowly close and there would be nothing left of me other than the music. I could almost see my hands playing the instrument like I was watching from a different place. Then I would make the mistake of thinking about it and I would be sucked back into myself.

It was rare, but one of the most amazing feelings in the world. The best part for me was that the other players felt it too. I wasn’t alone in the experience. That seemed to make it more real. We could all feel the moments when we were in “it” together. We could also tell when “it” was over.

Writing is different. It’s just me here. By myself. Alone. I complain about how I spend so much solitary time now that the kids are back in school. I see my wife making new friends and spending time out in the world with them and I sometimes become envious.

I go out into the world when I can. I try to meet people. I try to make friends. But when I’m out there, I find myself wishing that I was back here again. Alone with the stories in my head. Trying to get back to that place where I’m not even me. Trying to get lost in-between the letters and the sentences. Trying to find the empty spaces so I can float into the story and watch it unfold from nothing into something...real.

It’s not an easy thing to do. This nothingness requires a great deal of effort. All the zen koans point out different paths to take that will lead you to the same place. Attempting to get to the “Beginner’s mind” for lack of a better name.

The great masters spent years sitting still next to a tree. Some screamed at the base of a waterfall trying to sing along with the symphonies created by the crashing on the rocks. Calligraphy, tea ceremonies, Tai Chi, Haiku were all exercises to reach peace and enlightenment. Me, I played the drums and now I write on the computer.

I honestly don’t see any difference other than the addition of technology into the mix. The world is a much different place than it was fifty years ago let alone three thousand. With everything that goes on in my world these days, I’m lucky that I still have an outlet that helps me get to the nothing. However infrequent that may be.

I’ve mentioned this before, but I began writing after it started to become too difficult for me to play the drums anymore. Some poems here, a short story there until the suggestion came for me to write a novel. In that process I found nothing. One day I was sitting at my computer, and then I just wasn’t there anymore. I was the story. The sounds in my head were gone, my fingers didn’t feel the keys clicking anymore. All that happened was the story on the screen.

I could see it. I could smell the character’s sweat. I could feel the dirt under finger nails and hear the different timbres of people's voices flowing up and down like a melody. My heart pounded when they were afraid and I even heard the kitchen chairs squeak when they got up from the table. It was the first time I’d felt that in years. The first time since music brought me there.

After that moment I knew I could get there again. It doesn’t happen every day. It doesn't even happen every week. That’s not the point. If it happened every time, it wouldn’t be so special. It’s not something that should be permanent. There has to be a balance between the real world and nothing. Nothing isn’t easy. Nothing needs to be earned.

I heard quote on the radio the other day that keeps repeating in my head. The interview was about the differences between songwriting and writing fiction. The interviewee said that in many respects they are both the same thing. Trying to make something out of nothing. This I find is true. But the quote that struck me most came when he was asked if he had any advice for younger writers. He said this,

“Young writers sit around and wait for inspiration. Older writers get to work.”

Time to get to work

-a

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Girly shows & MRI machines

Been pretty sick the last week or so. Woke up the other morning and the world was spinning faster than it usually does for me. Dizziness and nausea have pretty much become my standard operating procedure. My eyes have been burning and every time I open them I feel like my brain is going to come pouring out through my tear ducts.

Good news is that today I started listening to music again. My head’s been so fucked up that even sound was squeezing my brain through a tube of old toothpaste. (On a side note, ever listen to the Damnwells? If not you really should give them a try. Alex Denzen is my new favorite songwriter. No lie. His music and lyrics really speak to me in a way that no one has in a long, long time.)

Death’s been rolling through my mind quite a bit lately. To ease any immediate concerns: No I am not suicidal. I do NOT want to die. So don’t start calling and sending notes about that. I’ve just been thinking about getting older and what comes next.

I’m not a man of faith per se. There is no underlying reason for us being here written in some book that made me a bandwagon jumper so far anyway. My family never went to temple. I remember being a kid and my folks asking if I wanted to play sports and music or go to Hebrew school. One word answer: Duh! Religion was always a family thing for us. It meant spending time together during holidays and things like that. No preaching or rules to follow in order to get to the good place in the “afterlife”.

Sometimes I wonder what it’s like. I don’t give any credence to the images of sitting on clouds with a gigantic old long white-bearded man throwing lightening bolts down to the ground during a thunderstorm. Maybe we end up sitting at a round table with all of our heroes. We could talk about the universe, time and how good a glass of water tastes after a long hike.

Regardless of what it’s all going to be like, it interests me more than frightens me. The physical process of dying is what creeps into the back of my mind and keeps me awake at night. I’ve been pretty close more than a few times and it’s not what I call an enjoyable experience. Our bodies are pretty fragile things that are not meant to last forever. As much as we don’t like to think about it, that fact is just as much a part of our lives as falling in love or staring at a perfect blue sky and feeling the fall breeze across our skin.

This week I’ve been thrown out of bed by some awful nightmares. I dream that I’m in an MRI machine. Everything is white, loud and very, very close. I can’t move and I know that I’ll never be able to get out. My big toes go numb and my hands grow extremely cold. Freezing actually. I have a head restraint on so I can barely open my mouth, let alone adjust positions. I try to squeeze the alert bulb in my hand to get the nurse’s attention but my hand is so cold I must have dropped it. I’ve never been claustrophobic before. But this is different. It hurts.

I wake up sweating. I squeeze my hands and try to shake some feeling back in to my toes. I’m too scared to go back to sleep so I pull down the covers and get up. I find my glasses on the bedside table. I try to be quiet, but no matter what I do I wake her up. I close the door behind me and turn on the T.V. After a half hour of flipping through channels in an attempt to find something that will keep my mind off of myself I settle on BBC America. I don’t like Doctor Who, but it’s just crazy enough to occupy my mind for a little while.

Around three or four in the morning my eyes are finally too heavy to fight, so I get up and go back to bed. I’m so tired now that I don’t have the energy to worry what’s hiding in my head anymore. Before I know it the alarm goes off and I have to get the boys ready for school. Usually one or both of them have come downstairs and climbed in bed with us by now.

Make cereal, pack lunches, pick out clothes, pack up backpacks and walk them to the bus stop at the end of the street. By now she’s ready to leave for work so we kiss bye and she drives off. Now I’m alone with the dog, the computer and my head. Sometimes I try to take a nap and catch up on my sleep. Usually that doesn’t work though. I feel too guilty sleeping during the day to do it unless I feel so shitty that I don’t have any choice in the matter.

Last night I told her about my nightmares. We were on the couch watching Project Runway or one of her other girly shows she uses to unwind from her stress-filled job. She picked my foot up and put it on her lap. Her fingers felt great gently tracing patterns on the skin just above my toes.

“I’ll always be there to get you out.”

Slept better last night.

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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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…and down the stretch they come!

Well, it’s officially official. I get to wake up at the crack of early tomorrow morning and head into the hospital where they will intentionally surge up to as many as 2,500 volts of electricity into my body in order to get my finicky and ill-behaved heart to beat in a consistent and steady rhythm again. Having been a drummer for over thirty years you’d think this would be a sure thing right? Unfortunately this has not proven to be the case.

For those of you who don’t know, I had surgery about four years ago to address this pesky and somewhat annoying issue of heart disease. I have what is known as Advanced Dilated Cardiomyopathy. Basically it’s a condition where the heart's ability to pump blood is decreased because the left ventricle is enlarged and weakened. This causes a decreased amount of blood pumped out with each heart beat. Some people inherit this wonderful disorder genetically, some through alcoholism or smoking and some folks like me are lucky enough to develop it because of thyroid issues. YAY! Well, let’s just say that unlike like a few more patient areas of my personal health issues, this one seems to be clinging on to the edge of the cliff vying for more attention because my M.S. must have been taking up too much of my time lately.

So while most of you will be sleeping snug like bugs in your beds, I will once again be taking off my shirt in a room full of strangers as they poke and pinch their way over my hands and arms to find a suitable vein. Goosebumps will spread as I lean back on the cold, hard chair and listen to the doctors and nurses discuss my over-weightness whilst standing next to me as if I won’t be able to hear their “tsk tsk tsk’s” and other condescending comments.

The good thing is that my BFF will enter the room shortly thereafter. Dear magical Anesthesiologist will float in on his glorious syringe shaped clouds of propofol and medazolam. He will bring his generous gift of peaceful and wonderful sleep to me. Once the nurses find the previously mentioned deep and buried veins, he will wave his magic needle, exclaim “Wigardium Drowsiosa!” and everything will blink out into a deep, impenetrable milky blackness. None of the sounds, sights or smells of the pads placed on my chest, side and back will reach me. I won’t feel the cold adhesive as it clings to my freshly shorn skin. I won’t hear the high whine of the machine as it cranks up to deliver its powerful charge. I won’t smell my chest, abdomen and back burning from the fire of electricity shooting deep through flesh into that troublesome muscle protected by bones and tissue placed there by thousands of years of evolution.

Then, hopefully, I’ll wake up missing only a few moments of time from my life wondering why I have all these funny creams and bandages all over my torso. I’m sure I'll be glad that they are there in a few hours when the steroid cream wears off and I start to feel the skin healing from the fresh burn marks. Some blisters will form and they will itch like hell. But if I scratch them, it’ll hurt SO much worse. Trust me, I’m not new to this rodeo.

After a few hours my doctor will allow me to come home. I’ll hang out on the couch with the dog and watch some lousy cable teevee. I’ll take a few aspirin or something, maybe a nap if I can find a position that doesn’t rub to hard against the burns. Every five or ten minutes my wife and I will check my pulse to see how steady it is. We’ll be looking for the reassuring and groovy repetitive sounds of: thumpah thumpah thumpah thumpah. If we hear: thumpah thumthumthum thumpah thumpthump thumpahthumpahthump thump thumpah, then I’ll be pretty pissed off.

You see, all of this bitching and moaning I do about M.S. is pretty serious. It hurts, and losing muscle control of my body pretty much blows in every conceivable way. But I don’t think the M.S. is what’s going to kill me. I think if I'm betting on a horse race between Advanced Cardiomyopathy and Multiple Sclerosis… A.C. would win out in the home stretch.

I am not afraid of dying anymore. Mind you, I am NOT saying that I want to die, but I have a closer understanding of the fact that it will happen to me at some point. It’s a part of life for all of us. It sucks and it ticks me off and letting go of this place is certainly not a fun concept that I enjoy pondering. But on a day like today looking ahead to a day like tomorrow, it kinda punches me dead in the nose.

I do intend to go down swinging though! Father’s day was awesome and I love being around my wife and kids. So they’re gonna have to drag me outta here by tooth and nail broham! Mortal or not, I have too much to see and do before the credits roll.


Now that I’ve spread this jam of happiness and joy all over your day, let me just say this: Tickle your kids. Hug your loved ones. Play fetch with your dog. Shine a laser pointer in circles around your cat. Stare deep, long and hard into the mirror and don’t look away from yourself. Smile. Laugh. Sing. Sing again. Sing LOUDER! Please love yourself!

-a

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i dream a math of mirrors

In the dream we're in a museum. High white ceilings accented with soft light illuminating from an unknown source. Colorful and refined paintings hang on the long walls. Important images by important artists held in high esteem by important people with important opinions. Details within the ornate frames hang illusive. Lines blur and colors swim together rendering their brush strokes undefined and mysterious. One large wall size piece hangs in front of us. In the mists of black and grey I can make out the abstract image of a nude man from behind. He flys at the bottom left of the gigantic rectangle arms spread wide with feet stretched closed together. A few inches above his lushly haired head he flies again. Only this time his shape has changed in small amounts. There is no longer a line dividing his feet or legs. They are flattening out, as are his arms and hands. The tip of his head reaches forward into a slightly rounded point. Above his head the man flies again. Morphing even more. Limbs almost unrecognizable as human now, they have gained straight edges. I can almost see flaps and rows of rivets bulging out of the aluminum like skin. The outlines of numbers and letters are beginning to darken and show their identities on the fuselage like torso. In front of his/it's nose the man/plane soars above now forming clouds and buildings far below on the ground. Other than wisps of hair and some muscular curves, the airplane is barely recognizable as a man. Looking higher up on the canvas there are four more rows of four man/airplanes evolving into and devolving out of finely detailed aircraft and back into male figures.
An unseen female voice comes from somewhere off behind us as I pick up a pencil. The sound echoing from hard surface to hard surface making it virtually impossible to pinpoint the source’s location.
"This painting...excuse me, Escher primarily used pencil or pen. This drawing is the largest Escher known to exist."
She continues rambling about the artist's history and methodology as I began to trace the outlines on the canvas with my pencil. “Maurits Cornelis Escher born in 1898 is one of the world's most famous graphic artists. People from all over enjoy his skewed view of the universe.” At first I write gentle and soft, barely making any marks at all. “He is most famous for his so-called impossible structures, such as Ascending and Descending, Relativity, his Transformation Prints, such as Metamorphosis I, Metamorphosis II and Metamorphosis III, Sky & Water I or Reptiles.” As I progress further along into the details of the images I press harder forcing the lead deeper into the paper, creating canyon like indentations around the man/planes. “Mr. Escher became fascinated by the regular division of the plane, when he first visited the Alhambra, a fourteen century Moorish castle in Granada, Spain in 1922.”
At the bottom right corner I see what appear to be an upside down pair of eyes and mouth looking at me.
"You're in the drawing." I say to the docent. "That face there. It looks just like you."
The woman glances down and shakes her head.
"It is you." You say pointing to the eyes. "Can't you tell?"
The docent continues her rambling list of important facts about the life of the artist. “While living in Switzerland during the Second World War, he drew 62 of his regular division drawings. He enjoyed toying with perspective as well as impossible spaces. In his work we recognize his keen observation of the world around us and the expressions of his own fantasies. He died in 1972.”
We walk off towards another section of the museum. After what feels like miles and miles going up and down shallow and steep slopes we come to a large room with glass walls. We stand next to the glass just to the right of the left corner of the room. The floor of this room extends far below where we stand and the roof rises tremendously higher than that of the hallway we are in. Directly in front of us is a bright orange “O” about three feet in diameter. It is connected to a thick, grey metal wire attached to the floor by an intimidating looking hook connected to more wire wrapped tightly around the bottom in a coil. Above the “O” is a yellow “+” followed by a green “” a blue “#” and a red “?”. The symbols radiate a soft sheen of their respective colors bringing a pleasant glow to the room. I take one step to my right to see the piece from the side and realize there are rows of hundreds of the same wires and shapes going back through the room off into the distance in every direction. They are lined up so perfectly that from the correct angle it appears as if there is only one of them in the room. We take in the shapes from several different angles. We marvel at the precision of craftsmanship. The exactitude and painstaking obsession it must have taken to build such a glorious and mysterious structure. I find it hard to blink. Not out of a need to stare, my eyes physically will not close. I tap you on the shoulder to get your attention but you are already looking at me. The back of your head looks exactly like the front. I turn you around and from all angles you appear the same. Your hair stretches down straight to the same point just beneath your shoulder blades and the back collar of your shirt lifts up a small amount at the seam. You are spinning around in a slow circle yet from every angle you appear the same. Your shape does not change. Your arms hang at your sides and the heel of your black shoe shows the same grey scuff at the side.
I move on to the next glass walled room. Two long black vertical lines stretch from a few feet above the floor reaching up to the same distance from the high ceiling. As I move closer I can see the lines are the close edges of very long rectangles. The rectangles are connected to the floor and ceiling by the same wire and hook mechanisms as the “O”, “+”, “”, “#” and “?” from the previous room. There are thousands of them. The line of rectangles stretches out before me in an endless procession of straight black lines. Perspective is playing tricks on my eyes. The vanishing point does not seem to play by the same rules of physics in this room as the rest of the world. The lines at the top and the bottom of the rectangles do not fade away into the distance at angles. They move forward in perfectly straight lines keeping the corners all at perfect ninety degree angles onward and onward off into the distance. I stop at mid center between the two closest rectangles and stare at the impossible ness of the piece in front of me. Before I begin to ponder how the artist constructed such a feat of engineering, a man falls from above. He dives straight down splashing into a pool of water exactly in the center of the rectangles before me. He faces away from me and begins to swim. His arms and feet move in slow motion, though he is swimming as fast as he can. Water splashes high above him and out to the sides. There is nothing beneath but the extending rectangles. No water fills the rest of the room and I cannot see any of him slide beneath the surface of the water floating in the center of space. The swimmer and the water are reflected in the rectangles that have now become mirrors. The swimmer struggles to move forward and gains no progress in any of the infinite reflections to the left and right and stretching out ahead through the unceasing rows of doppelgangers moving out into the distance. The reflections do not curve away into nothingness. There is no cheap funhouse mirror trickery here. Every muscle in the swimmers arms, the light reflecting off of his rubber eye goggle strap, the dirt under the corner of his right big toenail all appear in perfect detail in every reflection in every direction off into infinity. The swimmer turns his head up for air. I lose perspective. I breathe. You are standing next to me. The mirrors go on and on. The swimmer swims. The swimmer goes nowhere. O+#?

05-20-11

a dream from the night before last. i had my third infusion yesterday. after speaking with my doctor, it appears we don't really have any other valid options right now. the other treatments available could be just as harmful if not more so than the treatment i am currently taking. so, until something new is developed my fingers are crossed!
-a

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plastic melting on the hot dashboard of the world

He watches her fill up the mason jar with water from the sink. Back out west the tap water tasted like dirt but out here the well is always fresh, crystalline and ice cold. He starts pushing his chair back from the table just as she holds up her hand to stop him from getting up. She wipes a few drops from the rim of the jar and lowers from her mouth.

“We need to talk about a couple of things.” Her eyes dart around the room and look everywhere but at him. The knot forms slowly in a small spot somewhere close to the lower part of his abdomen. His intestine wraps around itself in more twisted and convoluted shapes than nature’s original design. The room seems larger now making him feel miniscule and brittle, like something easily broken or thrown away.

“Okay. What?” The words originated from somewhere in his vicinity. He didn’t feel his lips move, but that wasn’t too out of the ordinary these days.

She takes the seat catty-corner from him and rests her elbows on the table. “I got a call from the doctor today.” She offers the jar for him to have a sip he shakes his head no.

“And…?”

“Well, first of all we have to reschedule your transfusion. It got set up on the same day we have IEP’s for the kids, dentist appointments for both of us and we have a meeting with the social worker too.”

He rubs his hands over the stubble on top of his head. “Okay. So we’re going to be exhausted when that’s all over.” She smiles and nods weakly.

“Yeah.” Her fingers drum on the table absentmindedly. He knows there’s something else going on. Otherwise she would be making jokes or complaining about how nuts everything is going to be on that day.

He holds open his hands and raises his eyebrows. “What else did he say?”

Her eyes thicken with moisture not able to look him in the face. “You have…” He let’s her take her time. By now it’s obvious that it’s something bad, so there doesn’t seem to be much need to rush her and make things worse. “He said that you tested positive for the antibody.”

He breathes in. He breathes out. He blinks. He breathes in. He breathes out. He blinks. He swallows. He doesn’t move. He doesn’t think much of anything. He tries to see if he can hear his brain telling his lungs to perform their instinctive duties. He tells his eyes not to blink. They blink anyway. He scratches at a bug bite on his right ring finger that he got sometime yesterday. He breathes in. He breathes out. He blinks. He swallows.

“I’m sorry honey.” She reaches over and touches his hand. “Are you okay?”

“Yeah. Sure.” He breathes in. He breathes out. “I wish I could say something other than ‘what else is new?’ You know?” He smiles.

“He said that there is no record of anyone having a reaction within the first year of treatment.”

“Yeah. I know.” He breathes in.

“There’s still other things we can try.”

“Sure.” He breathes out.

“We could try chemotherapy.” She stares down at the table. “But because you have the antibody, you could still get PML.”

“I know. I’ve already done the research.”

“Oh. I didn’t know that.”

He breathes in.

He breathes out.

He doesn’t blink.

He thinks words. Jumbled words. He breathes in. He breathes out. He doesn’t blink. He thinks thoughts that make no sense to him. He starts to wonder if he can think in languages he doesn’t speak.

Fake it.

He breathes in.

Fake it.

He breathes out.

Fake it.

He does not blink.

Fake it.
‘til you make it.

“How are you?” She asks him again.

“I’m okay. Really.” He looks at her. “How are you?”

Her eyes are still swollen. No tears have emptied out on to her face yet. She is trying really fucking hard to be strong for him.

“I could always go back on something I’ve tried before.” He stretches his neck back and cracks his knuckles. “Maybe even look into some alternative treatments. Right?”

“Well, there are no reports of any reactions in the first year. So let’s get to that point and decide from there.”

“Right.” He breathes in. “I’ve had the infusion twice. That gives me ten more until then.” He breathes out. He does not blink.

“Actually…” She perks up, “just because you tested positive doesn’t mean that you’ll have the reaction.” He raises his eyebrows at her. Her voice gets very quiet now. “But you always have every reaction possible.”

He breathes in.

He breathes out.

He swallows dry.

“This was my last shot.” Her cheek is wet. The back of her hand is wet.

She says a lot of things. He listens with the part of his brain that can still follow her voice. He breathes in. He breathes out. She is still saying things. He listens for words that he recognizes. He listens for something that might elicit a response or an emotion. He breathes in. He is hollow. He is plastic melting on the hot dashboard of the world. He breathes out.

He smiles. He fakes it. The evening continues. He calls his parents. Tells them nothing. He kisses the kids goodnight. He breathes in. He breathes out. He fakes it. He turns on the television. He watches other people’s lives. He breathes in. He breathes out. He fakes it. He is hollow.

He turns on the computer. He checks his email. He looks at his social networking updates. He fakes it. He breathes in. He breathes out.

He tries to think about it. He breathes in. He doesn’t want to think about it. He breathes out. He fakes it. He understands the words his mind is saying now. He breathes in. He breathes out.

He breathes in.

He breathes out.

He fakes it.

He blinks.

a.m.k.
05.10.11

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an unexpected visitor

An Oriole flew in my living room yesterday. I was in the bedroom cleaning up a dog “accident” when I heard a strange thupping sound. At first I thought it was my bed bumping against the wall when I walked across the room. Then it happened again while I was standing still. Thup. Thupthupthup. Thupthupthupthupthupthup.

I flushed the paper wrapped “accident” down the toilet and turned on the hot water to wash my hands. I had to open a few windows to air everything out of course, so there was a nice warm breeze massaging across the back of my neck. I realized later that there was no smell from the soap when I dried my hands on the towel hanging from the shower curtain rod. Thupthupthup. Thupthupthupthupthup. Thup.

I couldn’t tell where the sound was coming from. It was circling all around my head in an unfamiliar stereo pattern. Maybe it was the tile and porcelain bouncing the echo from place to place. Thupthup. Thupthupthupthup. Thupthup. I looked deep into the brown eyes staring back at me from the mirror and tried to figure out what it was. My left pupil, solid black and perfectly circular held still and motionless. My right refused to hold still long enough for me to get a fix on shape or focus. My lower eyelid bounced up and down uncontrollably manipulated by some unseen puppeteers string. Thupthupthup. Thup. Thupthupthupthupthup.

The mirror fogged briefly from the quick out rush of air I expelled from my lungs. My hands felt good from being washed, skin fresh and clean. Thupthupthupthup. Thupthup. Thup. BAM! I quick stepped out of the bathroom and jumped over the dog. Her ears were perked up high but she whimpered behind me for protection. Thupthup BAM! Thup. Thupthupthup. I looked around and still couldn’t see anything out of the ordinary. Thup. Thupthupthupthupthupthupthup.

Brown and orange blurred inches from my face. My heart twinged and I ducked down raising my arms in an instinctive pose of self-preservation. Thupthupthup. Thupthup BAM! The bird hit the wall above my living room window and settled down nervously on the curtain rod. His small brown head swiftly looking back and forth trapped and afraid inside this strange box. His small yellow beak opened and closed a few times making no sound. Thupthup. Thupthupthupthup. He flapped his wings a few times but didn’t rise from his perch. Thup.

I must have looked as strange to him as he did to me inside the house. Every morning I talked with this little guy in our front yard. He likes to perch in the dogwood tree a few yards off the porch. I make the kids school snacks, turn on the coffee pot and step out front to get a little bit of air and check the weather. He jumps down from his branch high towards the top and settles in the middle of the grass between the house and the tree. He puffs up his dark orange chest and gives a quick whistle looking right at me. I smile, pucker my lips and whistle right back to him.

His orange breast swells out in a show of strength to show me how brave he is hopping once or twice closer to me and whistles again. This time when I whistle back he cocks his head and hops back three little jumps. I change my whistle to make it higher and louder. His wings flap and I swear if his beak could, he would be smiling at me. By now other birds on the street are chiming in and my little friend takes to the sky looking to protect his territory or find his girlfriend. I go back inside and help the kids get ready for the bus and start our collective day.

Thup. Thupthupthup. The brown and orange blur came straight at me again. I ducked and ran to the window. Quickly I pulled the blinds and pushed up the glass. The screen was still down. Thupthupthup. Thupthupthupthup BAM! Oriole hit the wall above the window on the other side of the room. I fumbled with the storm window locks trying to open the screen so he can find his way out. Thup. Tupthupthup. Thupthup.

He flew across the room again just as I finally got the screen open. I lifted it as high as it would go and made sure it locked in place. Thup. Thupthupthup BAM! He flew into the top of the window this time. He had the right idea but the wrong place. Tupthupthupthup. Thupthup. I raced him across the room to get to the window on the other side. He perched himself atop the curtain rod until I raised the blinds. Thupthupthupthupthupthup. I guess it scared him and he took off again flying in circles around the long room.

I opened the window as fast as my trembling hands would let me. Thup. Thupthupthupthup. Thupthup. The screen locks were jammed. Of course they were! I dug my fingers in as hard as I could and pushed. Thupthupthup BAM! Thupthupthupthup. The tips of my index fingers burned. I could feel the breeze flowing soft between the two open windows on either side of the room. I know Oriole could smell the grass and morning rain too. His circling picked up speed and intensity. Thupthupthupthupthup. Thupthupthup. Thup. Thupthupthupthupthupthup. BAM! The lock on the left side gave a little. I squeezed my hands much tighter than I thought I could these days. I felt every vein in my neck pushing into the inside of my skin. Thupthupthupthup BAM! He hit the window just above the open screen on the other side of the room this time. He was narrowing in on his escape. Thupthup. Thupthupthupthup. Thup.

The screen in my hands lifted. Oriole swooped down from the light fixture in the center of the room wings spread wide gliding through the window into the wide open. Breath heaved from my chest. I was sweating all over. Adrenaline pumped through my teeth. My hands were more numb than usual. But he got out! I watched him land on the grass. Wings flapped and he looked around. Bright yellow beak opened wide allowing his graceful melody to float up to the sky.

I walked around everywhere I could trying to find how he came to be in the house. All of the windows upstairs were closed. The chimney was closed. Other than the two windows in the living room that I opened for him, everything was shut on the first floor as well. There really was no place that I could find that would have let him in. Have to keep looking.

Beautiful bird. Always around to say good morning to me. Definitely welcome in the house as long as he uses the bathroom. Just have to teach him to stop hitting the walls and use the open window instead. I look forward to our next morning conversation. It’ll be interesting to see what he has to say.

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