Wednesday, December 18, 2013
I decided to re post this after reading an article about a young woman in Nova Scotia, Canada with NF. She had a facial reconstruction and it will be on a station that I unfortunately, do not get. I searched in my own blog for this post and could not find it, so I'm re posting it in her honor. Sarah, you go girl!! (she bravely made an online video of the bullying she endures)
Bumps of Beauty
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 every day 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 more perfection airbrushed into the lines and creases to make sure that perfection doesn’t get by us mere mortals.
We know it’s not true, as we stare into the plate-glass windows of the stores that hold our fondest wishes; the things we covet and believe we can’t live without yet behold! We still live. The things just out of reach but will never be ours and even if we get them they somehow leave us feeling empty which should be a lesson. As small children we played in and around the boxes that held the toys rather than with the toys themselves but then of course, we got older and that wasn’t enough and the airbrushed bodies that hold the goodies we now want but most times cannot have start to look good, so we begin to covet them and continue to do so forever unless we learn it’s not true, oh my.
We know it’s not true when we are born with the most imperfect bodies even more imperfect than the normal overweight, blemished, lopsided smile, crooked-nosed, large-jawed, legs to short, arms too long, hair not right, neck to long, butt to big human being. And here we are, with bumps that cover our bodies in numbers too many to count that send us into the shadows in shame or to the operating table alongside the ones with the tumors inside, large and small that run 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 our 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-tale spell binding truth of who we are, what we are likely to become.
We wait for the time-bomb of our NF to go off; will it be soon, while we are young? or will it skulk around in our bodies, dashing about or hiding behind organs, tissues, nerve-endings, tiny, meaningless until — until something, who knows what, ticks it off and poof! they grow, these tumors, these parasites, pushing about like bullies on the playground, growing faster, bigger 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 racked 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 in the first of my 30 or so MRI's that they had to stop and start again but it turned out not be funny at all.
So my first surgery was at 40 which is late, so I’m told and according to that first MRI at age 36 when there were so many tumors one neurologist who didn’t know me assumed I was 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 if 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 though this time in my lumbar spine and the pills I am on to stop the pain could put out my entire apartment complex though my body has become accustom to them and they practically don’t work, which means trying different pills oh heavens this is too much I just want to be normal, whatever the heck that is.
Somewhere in our hearts we know it’s not true, all the hubbub at the Oscars, the Emmys the Grammy’s, all that glitter and perfection all gathered together 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, awards — none of it. None of it is true. We are true. We with our imperfections, our bumps, our tumors, our disfigurements 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.
Posted by Sherri at 6:17 PM