My Neurofibromatosis Story
I remember doctors a lot from my youth, traveling in the car with my parents in our station wagon, to visit some tall buildings in Washington, D.C. There were machines that hummed and buzzed, the aroma of ammonia, hallways that were not always pristine, but definitely too brightly lit. Basements and corridors and many doors and many rooms, some of them decorated with cartoon characters, some of them insulated with soft walls, filled with tiny holes. There were instruments, cold stethoscopes, pens with light bulbs for tips, tongue depressors, and charts with letters of the alphabet. Needles too, large ones that I thought could be used as pogo sticks. Tests where you were injected with something, or something was put into your eyes or ears. Questions too, from adults carrying papers in their hands, and me wanting to know the right answer to please them. I remember a man in green pajamas asking me "do you ever get blackouts?"
"What?" I asked. I was lying on my back and had o stretch up a bit to hear him better.
"Have you ever blacked out?".
I was puzzled a bit, because the man talking to me happened to have black skin. i wasn't sure what he was getting at. I thought about my neighbors back home who were also black. I don't know why he was asking me about people's color
"I don't know what that means," i said.
He looked at me and closed his eyes and moved his head back like he was about to go to sleep. "You know, passed out like".
"No, I don't think so." I still wasn't sure what blackouts were, but I was certain I hadn't experienced them and didn't want to.
Mostly though, i dreaded the machines where you were strapped down onto a table and shoved inside a cylinder. The noises were loud and you could hear a buzz rotating around you.
I also remember nightmares where I couldn't move and i felt like I was trapped in one of these machines, I would close my eyes and hear ringing in my ears and see flashing lights. Those dreams terrified me because I could feel them coming on and couldn't escape them. I would ask kids at school if they had similar visions and they would laugh when i told them about the flashing red lights that filled my nights with fear, ""Fire engines!" they would should, and then scatter, giggling.
Years later, someone I told the story too, suggested that I was probably having seizures. i wish I would have known then, what I know now. Headaches would come and go, strange excruciating ones that felt like my skull wanted to burst. Periods of insomnia and times of fatigue so periodic I thought I was narcoleptic. Mostly though, it was the dreams that frightened me the most. Being unable to move, seeing the flashing before my eyes, the ringing, and feeling as if there was a pressure holding me down.
A Cat Scan Machine, 1970's
First impressions are said to be important: "You always want to make a good first impression" is advice often offered. The mark of a first memory is sometimes said to be an indelible one You may not always remember the first time you've met someone, but you quite possibly will remember how you felt. If Neurofiromatosis were capable of being molded into a person to whom I was introduced to at seven years old, my memory of that meeting is succinct and almost, for all practical purposes, uneventful.
There were maybe three or four copies of different titles, each having to do with Joseph Merrick, The Elephant Man. I was a little bit excited when I first saw the books and I knew my brother was too. There were several pictures in each of them, old ones, black and white. There was something about the way my father walked by us while we were standing in front of the table. He looked over and was silent and looked a bit satisfied that we had found the titles there, but there was an odd look in his eyes and his silence was a little strange. He was not his usual talkative self. No laughter,no questions. When i asked him, "what are these, what are these for?" I had to wait for him to leave the room again and come back.
I don't exactly recall what my first impressions of the book were. I found the antiquated photography appealing and the images of Merrick were just a mere curiosity. "Who is this? What is he doing? Where is he from?". It didn't dawn on me to ask about his appearance, I don't think I noticed that other than the fact that in a few he was wearing a sack over his head.
His response to the question posed by my brother and myself "What happened to him?" was "They say his mother was out walking in the jungle and she saw an elephant and was sacred by it. He came out this way and they called him the elephant man because his mother got scared." This was of course untrue. Merrick was born that way because of a gene mutation. For a long period in medical history, up until the last century actually, many doctors believed that Merrick had suffered from NF. What he actually had was Proteus syndrome.
Looking back I realize that the pressure of telling his children they may have inherited a rare genetic condition, was just too great. I don't know why a woman who was going to have a baby would be walking in a jungle. I didn't understand how an elephant could just walk up to a person and scare them. My father acted out the part of the frightened woman who appeared to be running away from a charging elephant. I acted like I believed my father's story and didn't pursue it, even though I knew he was being dishonest.
A Few Questions About NF
Do You have NF
Model Church by J. Merrick
What NF Means to Me
My parents, or so they told me, did not expect any of their three children to be born with NF. The Medical professionals they consulted, according to my father said that the chances of NF being passed on to children, was "a million to one". I don't know if i really believe this story or not, because basically it would have meant that my parents had won the lottery three times in a row. Later, genetics would teach me, that the odds of a inherited trait being passed down from one generation to the next is 50/50. That meant that the chances of the children inheriting NF from their one parent would be as great as the chance of the gene passing on. There was no "million to one chance" and how my parents accepted that figure, with the fact that my mother had a background in nursing is one that will perplex me continuously. In addition, it seems to me that anyone without any sort of training, has made the observation that most offspring resemble their parents in some way or another. If two persons of Caucasian decent couple, the chances of their offspring looking Japanese, are probably almost zero.
I believe it may have been some sort of faith that inspired my father to hold onto the idea that in a just world, there is a God who would not allow this to happen to two well meaning people who wish to become parents. This is easy enough to accept, but so is the science of genetics which decrees that there was a 50/50 chance that the NF would be inherited. What does a bit puzzling and perhaps even unfair, is the fact the odds were in the favor of the disease three times in a row, because all three of my parents children, inherited NF
The story I am told is that after my youngest sibling was born, the doctors realized that she had NF. How, I am not sure exactly. But after tests confirmed this fact, the doctors went back and tested myself and my brother and there were clear indications that we had this condition. Which brings us back to the books and the story of how we became to be introduced to Mr. Merrick. Looking back, I realize it must have been difficult for my father to reveal to us that we had this condition, knowing that based either on faith or science, this was not supposed to happen. I know this couldn't have been easy for my mother either because she would later reveal to me her sense of guilt. "Are you angry at me that I gave this to you?" she once asked me and without a pause I sincerely replied "No."
But it was given to me because I was born with it and there really was nothing that could be done.. There was no reverse button, there are no magic pills which make the disease go away. This was an all-in situation and the cards were stacked . The answer to the question, in whose favor are they stacked, is of course answered entirely by interpretation. When given lemons, make lemonade is the popular cliche, the darkest hour is only sixty minutes long, if you're waiting for your ship to come in, you must leave the airport immediately and head to the harbor. Being born with this condition, was not a choice i made. But I am certainly glad to have been given the gift of life and I don't regret my birth for a moment. i could either damn life as a curse or I could choose to embrace my experiences as a gift.
Some Things are Gifts
A Few Reasons Why I Am Glad I Was Born...
Being it a given that I have NF, I was taught by my parents to "laugh things off." I don't know if my parents expected their children to go through life like Merrick did, but I know they understood that the world isn't always friendly to certain people, particularly if you look a little different. Everyone of us has something about us in our background - ancestry, race, religious affiliation etc - that makes us prone to some sort of discrimination. Everyone - there isn't one group on this planet that I've encountered - is by the same token bigoted against someone else in some way. No one is exempt from this. When you have a disability however, particularly one that makes your physical appearance unique, you tend to stand out a little more.
1) I'd like to think I have a well developed sense of humor
One of the stories i recall my father telling me when i was younger was about a man they called "Slappy". He told me they called him "Slappy" because of his big hands. They were twice as large as anyone else's and were so big he could cover his entire face with them.. Slappy doesn't do anything heroic really, it's just that when people called him that name, he would respond by laughing and saying "Oh, yeah, I'm Slappy!" ,
He would tell me this story and to say "laugh it off" and when he did there was this sadness in his voice that I really cannot describe. Someone would call me "frizzy hair" for example and instead of getting angry or trying to instigate a fight, i would rub my head and say "you're right, I'm frizzy hair". A lot of people might have called me silly or goofy because of the way I responded. Other's may have called me a wimp or something to that affect, but I escaped a situation without it escalating any further. I kept myself in a good mood and managed to move on unscathed, never letting anything bother me.
Do You Know Anyone Who Has NF?
Attitude is Everything
2) In addition to having the ability to laugh at myself, I have developed a higher tolerance for discomfort....usually.
One of the things I have learned about having NF is that there are times when the condition may be more noticeable. People will see some of symptoms and make either inaccurate or inappropriate comments.
Usually someone will say something about my eye (if you look at my image photo you can see the right eye swells a bit): Did someone hit you? You a boxer? You live in a rough neighborhood! or something to that affect. Usually I try to explain to the person I was born this way. The ones that believe me are apologetic and I've snapped at a few even though i knew they meant no harm. I feel bad about that. I have come to realize that this is what I was given and people are going to be curious.
3) I think having NF gives me a fresh perspective on the world
You learn to see people for who they really are. You look at the things they do and listen to the things they say and notice if the two coincide. With NF you realize that there are many people out there who are judgmental. Some will not shake your hand or are afraid to touch you. Some people will avoid you because they think you're contagious.I think had I not had NF I might have been a meaner person.
As a disorder that in some cases could be considered a legitimate handicap you recognize that there are various levels of ability When you are in a glass house, you are very careful about the pebbles you pick up.
Don't Throw Stones
Had You Heard About NF Before? If So Where
Well I started out this article with the premise that I was going to speak about why i am glad I was born with NF and i think i managed eventually to get to a short list. There are certain things I wish I would have pursued and opportunities I had that I passed up but then again couldn't everyone say this?
And the reasons i was glad i was born with, even though implied in the title, is probably not the exact subject of this page. I think that overall, if you have NF or not, I hope you can all realize there is a need to be comfortable with your lot in life. The body is merely a vessel for the soul and we are only spirits here, for a brief moment. I am comfortable having NF and even though I may not always be glad that I have it, I am glad I was born and i try and enjoy life. I would rather have an arm with a few scars and lumps than no arm at all. I'm sure no matter your physical ability or limitations, there would be someone out there who would gladly switch positions with you this very second.
I asked this question on a social media site as well and here are some of the answers I received:
I wish i never had had it
wouldn't have met some of my best friends in the the world. Had I not had it's our bond in common
I always often, why anybody including myself was born with this genetic disorder. People with NF are some of the most kind-hearted understanding people you will ever come across.
Yes. To me it does. But I must admit. So far NF has not affected me as badly as others. But it has made me more compassionate to others pain
if someone in my family had to have I glad it was me.
What's not ment for you won't pass you!
t times.. I have a mild case not that it matters but I've been able to experience and see things I may not have had the chance to if it wasn't from having NF.
No i much rather would have been born normal.
I am who I am at the end of the day & my nf is just a perfect imperfection to not just me but my husband & everyone else who cares for me & I wouldn't want to change for anyone
No I hate it. And wonder why it chose me
My Answer: While I am not glad that I have NF, I have learned to accept the fact that I have NF, and embrace it.
Feel free to contact me if you have any concerns or questions. If you want to know more about NF please see:
Children's Tumor Foundation: www.ctf.org
National Institute of Health: http://www.ninds.nih.gov/disorders/neurofibromatosis/detail_neurofibromatosis.htm