“We’re not sure, but we think that it’s…”

I am a medical oddity. I am special and have magical powers that can mystify even the brightest of learned doctors. Please do not be tricked into thinking that this is a good thing. It most certainly is not. Every doctor I have seen over the last ten years of my life has been stumped and baffled by my various conditions to the point of referring me to “the best specialist in this area of medicine”. And still I have been misdiagnosed so many times that I’m surprised my keyboard still types with all the searches I have done on numerous afflictions. I wish I owned stock in Google.

Yes I am a little cynical. But cynicism get’s a bad rap sometimes. It helps turn the world on edge just enough to let the bad news roll downhill with the rest of the shit. And everyone gets some bad news once in a while I know I’m not alone in that. Don’t get me wrong, I love my healthcare professionals. I love spending hundreds of dollars on medicines that might help alleviate some of the symptoms of a disease that I possibly have. Or that might not.

How do I look my two little boys in the eye and smile knowing that it’s possible I won’t be around for their high school graduations? Or that I will most likely not meet their wives or even my grandchildren? Cynicism is my friend. It’s my magical shield of temporary denial that I can function behind during the day until I am all alone at night inside my own head.

Unfortunately there is no denial at three in the morning.

I sit here looking out the living room window over a mysterious white and brown landscape lit by only the reflection of the sun off of an almost complete wolf moon. All the kids are asleep. My brother-in-law is making a late snack while his St. Bernard barks away foxes and coyotes from her chickens. Sometimes you have to marvel at the beauty of these mundane quiet moments. And although there is still a bubble of fear about to burst in the pit of my stomach, its times just like this one that reassure me we are doing the right thing.


About a year ago I woke up in the middle of the night screaming. A slow tingling sensation rolled in waves from the right side of my ribcage all the way down to my fingers and toes. It grew in intensity as my right leg and arm curled up closely and every muscle tightened. I couldn’t make it stop. My hand clenched into a fist so tight that it felt like my fingers were about to burst their way through the back of my hand. I never thought the bottom of my foot could contort itself into such a twisted and horrifyingly painful position.

I screamed. At first in pain, and then begged for help from my wife sleeping next to me. We had been partying a little that night so at first she didn’t respond. By the time I was able to rouse her, my limbs were relaxing and the pain was slowly fading away into the dark room around me. “Go back to sleep honey..” she mumbled and rolled back over. Unfortunately sleep would not be something I got too much of over the next few months.

The next time it happened was about a week later. Again we were asleep in bed, but this time I was able to rouse her and she tried to calm me down and help ride it through. For all we knew, they were panic attacks with all of the stress we were under. Trying to pay bills on time and find the right doctors for our oldest son with autism. Things were crazy, but they always had been.

The good thing was the panic attacks only happened when I was sleeping. So other than making it difficult for me to go to bed, they didn’t seem to pose any real problem in our day to day life. A few Monday mornings later the alarm went off at 6:00 and I started my normal routine. I had a glass of water, stirred the kids, shaved my head and hopped in the shower. I was in no hurry to dry off given the warm southern California weather. By the time I had gotten dressed it was almost 6:45.

I remember unzipping my pants to pee. About half way through, I began to feel the now familiar tingling sensation running down my leg and arm. “It’s happening again!” I somehow shouted and stumbled my way into the bedroom. I collapsed into a ball next to the foot of the bed. My entire right side searing in agony, I kept repeating to myself “It’s going to end soon. It’s got to end soon.”

I could feel the gentle hand of my wife stroking my back and hear her whispering that I would be ok. But it didn’t help at all. After what seemed like an eternity the tightening slowly loosened its grip and I was able to breathe normally again. I couldn’t bring myself to stand yet. I remember my six year old son’s feet were right in front of me and he mimicked my wife saying, “Don’t be scared Daddy. It’s going to be ok.”

I wiped the drool from my mouth and lay my forehead on his toes. “I think you need to take me to the emergency room now.”


After the third MRI the E.R. doctor sort of confirmed that I was having what he thought night possibly be seizures. Didn’t know why or how they were happening, but said I should take some preventative medications and be sure to call my personal physician as soon as I got a chance. This is when it got kind of fun for me. You see, for those of you who don’t know my wife, she is a very friendly and loving person. A former stand-up comedian she is always joking and brightening up the room wherever she goes. Just don’t fuck with someone she loves.

My wife literally jumped into a shark tank to protect our son. Seriously, a tank full of sharks. Real sharks with teeth and everything. No joke or exaggeration. Just check with the aquarium and they’ll tell you all about it. Our oldest son is autistic. Not very uncommon now, but back then people only recognized autism by remembering the character Dustin Hoffman played in Rain Man. Not very much like my son at all.

He doesn’t count cards or magically tell you how many toothpicks have fallen to the floor. He doesn’t speak. It’s not that he can’t, his brain is just not wired to communicate the same way as “typical” people do. After years of living with him and working closely with his therapists, my wife and I have slowly begun to unravel his language. He is a very loving, funny and bright kid. He adores his younger brother and absolutely without question 100% loves with all his being to play in the water.

Given that it was a 107 degree day, the edge of the shark tank was only 3 feet tall and my son’s penchant for playing in the water…he decided to jump in as soon as he got a chance. He is smart. Did I mention that he is very smart? He waited until the precise moment that I was directly opposite from him with my camera and my wife was distracted by my youngest son starting to cry for his bottle. I saw the entire event unfold through the lens of my camera. His hand had been freed from the protective grasp of his mother for a nanosecond. And then there he was, in the air. The biggest and widest smile in the history of smiling spread across his little face as he cleared the tank wall and splashed down into the water.
At first most of the sharks swam away in fear. Then he started splashing and jumping up and down in the shallow water. One shark in particular had him in its sights and was swimming faster and faster straight for him. Everything was moving in slow motion for me. I wasn’t quite sure that what I was seeing was real. Then all of a sudden I heard my wife screaming out to the little boy. She too took flight in the air over the tank wall, although with a very different facial expression. Hitting the water she grabbed the laughing child, kicked the oncoming shark in the face and climbed over the wall as the on looking crowd barely had time to react to the action scene unfolding right before their eyes.

Now that you have more of a gasp of the superheroineness of my wife, where were we… the E.R. doctor may have been tired from a long night’s shift. He might have even been a good person with friends and a family who cared about him. But none of that mattered anymore. He had crossed a line that could not be uncrossed. You just don’t fuck with Shark-Attack-Rescue-Mommy! (Insert theme from your favorite 1970’s TV cop show here) I bet he never knew how lucky that shark was to swim away.

I wish I could put into writing what was said and done next. But I literally cannot. As I was about to interject something charming or funny to calm the mood created by the lackadaisical medical diagnoses, my wife gently rose from her seat next to me, took the young doctor by the arm and led him into the hallway closing the door quietly behind them. I could hear only a slight mumble that rose swiftly in pitch and tempo along with the flailing shadows seen through the drawn blinds of my windows. The female shadow eventually slowed to a standstill with her hands on her hips as the crouching shadow of the doctor nodded swiftly and nervously sped off in the other direction.

My wife smiled and cocked her head to brush the one hair out of place from her eyes. She exhaled long and slowly while taking her place on the uncomfortable chair at my bedside. Before I was able to say anything, she placed my hand in hers and stroked my arm. “Everything is going to be alright now. Don’t worry bu.”
Twenty minutes later my doctor was there with his recommended neurologist.


If you have never experienced the joys and spacious freedom of an MRI machine, I most emphatically do not recommend it. I am not claustrophobic but whoever designed this thing must be a long lost nephew of Joseph Mengele with a death metal spelunking fetish. I am a large man. Not huge, but larger than your average bear. So if a one hundred and eighty pound man thinks it is a bit of a squeeze, try being three hundred and five pounds.

First they put a Hannibal Lecter-like mask on me in order to keep my head still. Then they put straps on my arms to hold them closer to my torso. When the nurse finally rolls me into this torturous device, I can’t even move my fingers more than a centimeter or so. The top of the chamber I am put in rests a comfy ½ inch above my face. Most people only have to go in to just above the stomach. Not me. Nope. I have to go in all the way to my ankles. That way they can do all three forty minute scans of my brain, upper and then lower spinal areas. Not three scans in forty minutes mind you, forty minutes for each scan.

The technicians give you the useless option of music earphones that supposedly play your choice of Classic Rock, Jazz, Classical or Pop; but you can’t hear anything over the intense, ear shattering sound of the machine anyway. Now I have been a drummer for thirty some odd years. I have toured the world in arenas full of screaming people. I have performed for stadiums sitting right next to giant stacks of guitar amps cranked to eleven and nothing even comes close to the sheer gut shattering feeling of an MRI machine.

Oh yeah, then they stick a rubber ball in my hand and say, “Squeeze this if you feel a seizure coming on or you just can’t take it anymore. We’ll try to get you out as soon as possible.” Then they roll me in.

It’s all white. It’s cold. I can’t move at all. It is so loud my ears feel like they are bleeding. It’s going to take another 158 minutes. That’s when I remember I live in earthquake country. Perfect timing sub consciousness! Just freakin’ peachy. I try to slow my breathing and find the rhythm of the machine. It hurts but I’m almost there. Then a news report flashes across my eyelids of a woman trapped in an MRI machine for almost an entire weekend because she was able to fall asleep inside one of these insane things and the technician forgot she was in there! It took her twelve hours, but she somehow managed to wiggle and shimmy her way out of the machine. If there was ever a time for an out of body experience, I was hoping for it to be right now for sure.

The first forty minutes have passed and they pull me half way out to inject a small amount of radioactive die into my blood for the next scan. I had told the nurse previously that I have very deep veins and they have been notoriously difficult for phlebotomists to catch on the first try. Of course I am just a stupid patient and should apparently stop trying to help them when they can stab me thirty seven times on their own and end up putting the IV in my hand like I suggested to them in the first place a half an hour ago thank you very much.

Then I go back into the machine but I am unceremoniously pulled out again five minutes later because the IV was placed incorrectly and we have to try another twelve or thirteen places to get it right. At this point I started singing “Happy Happy Joy Joy” from Ren & Stimpy to lighten my mood. It strangely had no noticeable effect on the medical staff present in the room at the time.

After they get the IV straightened out and the second scan done, they pull me out to inject anther fluid for the third and final scan. This one fortunately passes by uneventfully but seems to drag on for days. As soon as I was dressed and walked outside the sky was the most beautiful thing I had ever laid eyes on. I wanted to kiss every cloud and drink up the smoggy brownish blue with a swirly straw.
Then we got home and checked the answering machine. It was my neurologist’s office. They had received the results of the test already. It was a fortunate byproduct of my doctor working for the same hospital that had the MRI machine. Unfortunately the nurse at the MRI department had written down the incorrect information and they had run the wrong tests. They needed to perform another set of screenings and would two months from today work for my schedule?

Smiles everyone, smiles! Or else.

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