Where The Streets Have No Name
On a morning in late 2004 Our Hero – that’s me in case you’re wondering – a mild-mannered cellular service providerman was sleepily walking through a shopping centre in search of a good breakfast and a hot cup of coffee.
He was rather proud of the fresh beard he had been cultivating since the day before – Designer Stubble, I believe they call it.
It was the morning after the hard day’s night before, and Our Hero, fresh from single-handedly saving the world on the night shift he had just worked, most definitely did not feel faster than a speeding bullet, nor able to leap tall buildings with a single bound either.
Today was his day for rest and relaxation; to kick back and put his feet up on the table inside his Fortress of Solitude; today was his day just to breathe and to be.
Suddenly from a coffee shop nearby a voice called out to him. He was rather reluctantly awoken from his dream-like thoughts.
“Excuse me,” the voice said again. It belonged to a man sitting at a table near the doorway of the coffee shop. Excuse me brother,” he said again. “but did you know that God can HEAL you?”
I was both dumb-founded and flabbergasted at the same time – if that is possible. What did he want to heal me from? I wasn’t sick! ‘Ookay, heal me from what?’ I thought just as my eyes caught his gaze on my hands – and then I realized.
“Come brother, pray with me!” He implored from behind his open newspaper and his cup of coffee.
I was taken aback by the speed of this supposed conversion. If only he knew that he was about to preach to the choir! Just not the choir of HIS particular Church!
“Err, no thanks.” I said recoiling a bit. I didn’t feel any other explanation was necessary, and frankly I was too surprised to string the words together. “You don’t want to pray?” He asked, as if I had 666 painted on my forehead. I walked off without saying a word, my mind still perplexed by this puzzling incident.
Having Moebius Syndrome, to me, has always been a bit like being a super-hero. You walk around all day with strange, special features that nearly no-one else has, yet you don’t think of them much, as you are comfortable with just being you in your own skin. In fact sometimes you even forget that you have them!
But then suddenly something happens and you realize that “This looks like a job for Superman!”
This was how I felt that early 2004 morning, like suddenly I had been reminded of being the only son of the planet Moebius – or so I thought at the time! (At the time I had yet to meet others who had the same syndrome) It dawned on me that no matter where I am, or what I am doing in life, that I will probably always get little reminders of that, even if all I’m doing is just getting on with my day. And that made me sad.
Mysterious Ways
Despite my plans to have breakfast and catch a movie I was so shocked by what had happened that I started to wonder aimlessly. So aimlessly in fact that I wondered straight into my own personal Forbidden Zone - Musica music store.
The first thing that caught my eye when I entered the store was the brand new U2 album, How To Dismantle An Atomic Bomb, standing proudly on display.
I knew it had just come out but due to "budget constraints" I wouldn't really be able to afford it, or at least I shouldn't really be able to afford it!
I had been a mega U2 fan since their previous album entitled All You Can't Leave Behind which came out in 2001.
With Or Without You
Of course I had known their music long before that. I was introduced to U2 while being babysat by my brother one school holiday in 1987, when we were sitting at the dining-table eating Pronutro breakfast cereal for lunch.
Even though we were 7 years apart my brother and I have always enjoyed a special relationship. In a way we were kind of like twins, except that he got all the good looks - and all the fingers! We were inseparable.
But now something strange had begun to happen to him. He was becoming more funkier. His best friend's sister had given him a weird haircut, he started to wear an earring (I swore I wouldn't tell Mom and Dad) he had acquired a sleeveless t-shirt that read "Sex instructor - first lesson free!" (Again I promised not to tell Mom he was still wearing it after she had banned him from doing so.)
Even though I was a beginner, I had become quite an avid reader, but I had never encountered the word 'sex' before. My Kathy And Mark reading book at school was full of interesting new words, but I had never seen them mention sex before. Perhaps I should ask Mom what it meant, I thought.
And last but not least his new religion had become a bright yellow, almost glow-in-the-dark shirt - It WAS the 80's, after all! - a brooch, and a pair of black trousers - go-go pants, as my dad liked to call them.
And so it was on this fateful day that we spent eating breakfast cereal for lunch that I was introduced to U2 and their magnificent Joshua Tree album being played on my day's sound system. And even though I took an instant liking to Where The Streets Have No Name, I Still Haven't Found What I'm Looking For and With Or Without You, I decided that I shouldn't like this band because they had irrevocably changed my big brother in some way, and I wasn't too sure if it was for the better just yet.
So unsure was I in fact that I eluded U2 fandom throughout my teenage years, apart from listening to and liking their stuff being played on the radio and at friends’ houses.
Love Rescue Me
My next groundbreaking encounter with Bono and the boys happened while I was nursing a broken heart after suffering a loss of note in the love department.
The lady in question had not only slid under my skin but into my music collection as well. So much so that every song I listened to just reminded me of her.
So it was time to try some new music. I had heard and fell in love with their Beautiful Day - and decided to buy the album, which proceeded to once again put a smile in my heart, a song in my head, and a skip in my step.
“Take This Soul, Stranded In Some Skin And Bones..."
And so it was that I took hold of the new U2 album, walked over to the listening booth and prepared to dismantle an atomic bomb of my own. The atomic bomb of being singled out for being different.
What really bothered me about the whole ordeal was that I had suddenly realized that things would never be different because of my having a difference. I may get passed a certain shy, awkward phase of life and feel more comfortable with it, but wherever I go people would always see my difference before they saw me. I had never really realized that before and the thought of it just absolutely overwhelmed me.
The other thing was that for as long as I can remember I believe that I have been having a dialogue with God because of why I am the way I am.
I have never actually asked why, mainly because I have always had an overwhelming belief that there was a reason for me being the way I am.
I believed that God, although he may have had some doubts at times, was generally happy with me being the way I am; as was I.
I have never believed that Moebius was an affliction, or a disease that I suffer from. I believed, and still do, that it’s a part of me, not all of me, just a part. And I live with it on a daily basis. Just as some people live with having brown hair or green eyes.
And so for someone to try and use my own beliefs against me to try and convert me, just seemed more blasphemous to me than my not wanting to join in prayer was to him.
Music, to me, has always been capable of soothing my savage breast. I have been through some pretty tough things in my life and I don't think I would've made it through any of them if it weren’t for that little miracle we know as music.
And so it must've subconsciously been with this thought in mind that I found myself in the listening booth, putting the headphones on in preparation to listen to the latest U2 album.
I immediately became immersed in the music as my ears were hit by the first few rock-driven guitar notes of the opening track called Vertigo.
Slowly but surely as time ticked on a window started to open somewhere in my mind and the hurt that I held in my heart because of the happenings of that morning seemed to lessen as I listened.
Next up on the track list was a song called Miracle Drug. I was to find out a few months later that it was written about an Irish author by the name of Christopher Nolan, who was born with a disability that only allowed him to move his eyes.
Later on a drug was invented that would enable him to move his head and this led him to write the must beautiful poetry and prose. Hence the title of the song, Miracle Drug. All four members of U2 had attended the same school as Christopher Nolan had, and had met him there.
I have to confess that I skipped through most of the tracks that would become the soundtrack to my life for the next few years, until I stumbled upon one which was to forever change my way of thinking about myself.
"Everywhere you go you shout it, you don't have to be shy about it."
Still skimming through the tracks I alighted upon a slow, soft, melodic intro of a song called Original Of The Species, that instantly caught my ear. The words to follow soon caught my heart.
“Baby slow down,
The end is not as fun as the start,
Please stay a child somewhere in your heart."
Bono sang.
On hearing those words I did slow down, as my heart and mind were both racing a mile a minute after my strange and close encounter of the turd kind.
I reflected on how I had always looked at life through the eyes of the child that I still was and how, for that reason, I had come out of many hurtful and hateful situations I had been placed in due to my disability because of my naive belief in myself, my abilities and the fact that I thought I was like I was for a reason.
Now that I was an adult there were certain things I had to face and overcome which would make the innocence of childhood seem like nothing but a dream.
"I'll give you everything that you want,
Except the thing that you want,
You are the first one of your kind."
The song continued.
One of my favorite stories as a child was that of Pinocchio, I even named my boyhood cat after one of the characters from the animated TV series.. Even at that age I could identify with his story of wanting to be more than he was. Naturally because of the rarity of Moebius syndrome I had always felt like I was the first one of my kind, and that I was like no one else before.
"And you feel like no-one before,
You steal right under my door,
I kneel cause I want you some more,
I want the lot of what you got,
And I want nothing that you're not.
Everywhere you go you shout it,
You don't have to be shy about it."
These words spoke straight to my heart and lodged themselves firmly into my soul.
I got the feeling that somebody, somewhere was trying to tell me something about myself, the experience I had that morning, and the way that He felt about me. But if God was good at infomercials his "But wait, there's more!" part was about to come round.
"Some things you shouldn't get too good at,
Like smiling, crying and celebrity,
Some people got way too much confidence, baby."
I am, of course, not that good at smiling, but crying and celebrity are things you can get good at were you to have a rare condition. Not the celebrity of the wrap around shades, rock star variety of course, but rather the fact that you are always noticed wherever you go. It can be soul destroying if you let things like that get to you.
i have never let myself go in that direction, but its easy if you try, and even if you don't, but i have always been a proud person by nature and determined not to go down that route. Deep down inside i am just as normal, or abnormal, as the next guy!
Some people, like the coffee shop Christian, do indeed have way too much confidence - and in his case maybe a bit too much coffee - baby.
There was nothing wrong with being who I am was the message I got that morning. Someone up there seems to like me, and He just happens to be a U2 fan too, I suspect. Never had listening to rock music been such a religious experience!
I was once lost but now I was found, and my soul and my sanity had been saved by a song.
