Airbrushed beauty beaming up from the pages of magazines and down at us from billboards marching proudly on our city streets, brightly lit at night so that we won’t miss the larger-than-life smiles filled with too-white teeth, straight as the light bulbs that shine on them, the abundant, radiant hair that glimmers too, the creamy white, black or brown skin flawless and blemish-free even though we know it’s not true, we believe it so we buy the soap, the toothpaste, the clothes and once upon a time, the cigarettes but that’s all over why is there not a law against the rest of it? We know it’s not true, because we see each other on the streets, in the workplace and at school everyday and we see the imperfections we are all born with save the few who make it to the pages of those magazines who still, even with the born perfections, must have airbrushed even more perfection into the lines and creases to ensure it doesn’t get by us mere mortals.
We know it’s not true when we are born with the most imperfect bodies even more imperfect than the “normal” overweight, blemished, crooked smiled, hooked-nosed, large-jawed, legs to short, arms too long, hair too mousy, neck too wrinkled, ass too big human being.
Then there is us with the bumps that cover our bodies in numbers too many to count that send us into the shadows in shame or to the operating table along side the ones with the tumors inside, large and small that skitter up and down our legs and arms, in our chests, our organs or crawl up our spines leaving us in mind-numbing pain or confined to wheelchairs, or beds far away from the billboards of beauty. But it’s okay, because we know it’s not true.
And if that’s not enough there are those who can’t walk, can’t see, can’t hear but miraculously, somehow, overcome all those obstacles and emerge more whole than the airbrushed beauties the smart ones know to ignore.
What a miracle it is to be born whole and how unlikely, is it, really, for that to happen given all that could go wrong in the cell dividing process of becoming human. The culprit, thanks to science is identified in genes 17 and 22 on that ladder of life, DNA. That twisting, turning, Escher-like double helix , the tell-all spell binding truth of who we are, what we are likely to become.
We wait for the time-bomb of our neurofibromatosis to go off; will it be soon, while we are small, or skulk around in our bodies, dashing about or hiding behind organs, tissues, nerve-endings, tiny, meaningless untilâ€”until whatever happens to tick it off and poof! they grow, these tumors, these parasites, pushing about like bullies on the playground, growing faster, bigger, stronger then the rest of whatever else is in there and soon, like the bully, it pushes on the nerve-endings too much and the host body is wracked with pain as the doctors scratch their collective heads wondering what in the world is wrong, have you seen a psychiatrist? An MRI? Well, okay and we slide into the cigar-like tube with earplugs to dull the sound of the thud-thud-thudding and the cluck-cluck-clucking like the coconuts used to make the sound of horses running in Monty Python’s Flying Circus. I laughed so hard the first time they had to stop and start again but it turned out to be not funny at all.
So my first surgery was at 40 which is late so I’m told and according to my first MRI at age 36 there were so many tumors I should have been in a nursing home but was, miraculously, living my life just fine thank you, so this was quite the shock to learn that I could be paralyzed from the neck down if I didn’t have the surgery and maybe even if I did. It all depended on whether the tumor was sitting there like a grape or wrapped around the nerves (which wouldn’t be good) but it was like a grape and I am not paralyzed though sometimes with fear, I am.
So now it’s back, the pain, the numbness, the threat of paralysis though this time in my lumbar spine and the pills I take to stop the pain could put out my entire apartment complex though my body has become so accustomed to them they sometimes don’t work, boy I would like to be normal whatever that is.
And we know it’s not true, all the hubbub at the Oscars, the Emmys the Grammy’s, all that glitter and perfection all together, gathered so we can gawk and wish we were there, or them or both. If this NF of ours teaches us anything it should teach us that it is not true; not the billboards, magazines, movies, television, awardsâ€”none of it. None of it is true. We are true. We with our imperfections, our bumps, our tumors, our disfigurements that teach us this truth. We are the truth because one must search deeper to find our beauty and any treasure hunter will tell you that the find makes the dig worth it.