NF shouldnt define us and we shouldnt miss an opertunity to laugh to ouselves. I look like a troll with a big misshapen torso and spindly arms and legs. Somone told me I look like a gumdrop with praying mantis arms. I laughed... because its funny and its true. Sure it stings a little when somone point out our flaws but hey, life sux sometimes. If you cant laugh at the hard times I feel trully bad for you. We have enough to worry about with tumors, spots, pain and the host of other troubles we have on a daily basis. If you let it make you miserable, you might as well die because then NF has already killed the person inside. Learn to see the humor in yourself and others and save your strength for the real battles. You wont make it out of this life alive so enjoy the ride. There is freedom in hopelessness. Now before people start jumping on me for this post, I'm not suggesting we laugh AT each other. I'm saying that we all share a hard life that gets us down and sometimes when death and sicknes is closing in around us on all sides the only weapon we have is our sense of humor. We have all suffered and been hurt by this disease. Many of us have lost people we love to it. I only have one picture of my biological mom and she is sick from chemo, skinny and dying. I see my face in hers every time I look at it. But it doesnt make me sad. I laugh because I think to myself "Coulda been worse, She coulda fallen in a wood chipper". Is that sick? Maybe but what am I supposed to do? My earliest memories are of her lying in a hospital bed. Somthing like that is enough to break a person's heart in two. But I'm stronger than death. I may lose but by laughing at what destroys everyone eventually, I remove its power and its venom. I'm free to REALLY love life, to smell the roses to love with a love that can only come from somthing so precious and finite as the fleeting spark we call life. Life is worthless... LIVING is PRICELESS.
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Tumor Humor
- By guilty_spork
- Posted June 20, 2009 at 5:24 pm · 19 replies
- In Living with NF1
- Shared with the public
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19 replies
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- By tperron
- Posted June 20, 2009 at 10:51 pm
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WOW well said life does suck at times living with NF but you have to learn to laugh it some how makes it a little better
Still Learning as I go
- By KittyLover
- Posted June 20, 2009 at 11:23 pm
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Good for you, spork. That's the way I choose to look at things too. It could be worse. I may not have NF to your extent - more bumps have cropped up over the years and I'm getting them removed as they do - not necessarily for cosmetic reasons, but the pain and itchiness as well. I do have internal tumors - one on my spinal cord that has been partially removed and nearly killed me in doing it. I've had my parotid gland removed also.
But I look at it like this - at least I'm able to see my bumps. Some people... some NF'ers even, are blind.
At least I can feel my bumps and the pain they cause - there are some people paralyzed from the neck down that would give anything to be able to itch a bump.
At least I can hear (and have heard) remarks about me and my bumps. There are people that are deaf (and some on account of NF) that would give anything to hear.
I guess that's the way I look at it. I can see, move, talk, hear. I've had many health issues on account of my NF and the bumps have popped up more over the years and I've been having successful surgeries to eliminate them.
I have bumps. So what. It could be worse - I could have burns over 90% of my body but I don't. I'm sure a burn victim would trade places with me in a second.
It's just things like that that we have to remember. I'm so glad how my life is right now. Yeah - I have health issues, but all the other stuff which helps me appreciate life and keeps me alive are working just fine. :-)
Thanks for a wonderful thread and for sharing your story. I like your sense of humor and/or your ability to find humor in the most unthought things. :-)
- By dababyrn2006
- Posted June 21, 2009 at 8:41 am
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Wow, what a great way to look at life with NF. I come from a large family and my dad made sure we had a sense of humor, and a good outlook on life. But I do get blue sometimes and it gets hard to come out of it the older I get.
But life has ups and downs and like you I try to make the most out of the ups.
Thanks,
Deb
- By KittyLover
- Posted June 21, 2009 at 1:34 pm
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my sister and i - we would look at our bumps and go 'connect the dots... la la la!' (think Pee Wee Herman from Pee Wee's Playhouse :P )
We would also name our birthmarks - after different countries. :P
- By colliefan
- Posted June 21, 2009 at 1:55 pm
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As line from an old song: "if we couldn't laugh we would all go insane."
Life is a matter of keeping perspective as there will always be those better and worse off than us. Our task is to show up where we have been planted.
- By hopeful0712
- Posted June 21, 2009 at 2:36 pm
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I try to be positive too, sometimes it's hard, being a woman I am a little vain,I must admit, and want to look good, so I try take care of my body and exercise a little bit on a daily basis, that way I can somehow counteract the appearance problem, which for me is the only problem so far.
But it affects me psycologically.
I do get pains some times, especially my lower back, I'm not sure if it's NF related, but my knees and fingers hurt too, nothing to keep me from doing my day to day activities.
So I try to laugh as much as I can.
And I am learning to find strength and inspiration in people like you spork, thanks for this post.
- By guilty_spork
- Posted June 21, 2009 at 4:01 pm
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Glad to see such positive responses. People tend to take what I say the wrong way. Glad to know my morbid sense of humor and hopelessness isn't lost on others. Hope everyone is having a good day.
- By LumpsandBumps
- Posted June 22, 2009 at 5:03 pm
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Well as some of know there is some dislike to my name Lumps and Bumps.Well they're not the first. Won't be the last. I also go by KNOTTY or Knottyman. KNOTTY is my sideshow/freakshow pseudonym.
I'm a self proclaimed FREAK. Here's a cartoon drawing based on my names Lumps and Bumps and Knotty(man)
Lumps & Bumps: Revenge of the Knottyman!
http://www.youtube.com/watch?v=QRLseQ85X-U
My Cartoon Monster
http://c4.ac-images.myspacecdn.com/images01/29/l_ea31f6d9b9bb3f64fa77e5f972 9e39bb.jpg
Me lifting a block with my ears
http://c4.ac-images.myspacecdn.com/images01/73/m_93f42b1c67a76d82c731c1b11d eac00b.jpg
Me pounding a nail into my face
http://c2.ac-images.myspacecdn.com/images01/45/m_bafec8113319cb4d2aacb12c8f 2522c9.jpg
My friend Katzen and me.
http://c1.ac-images.myspacecdn.com/images02/23/l_bda71ecd36724fe7896dff8847 fb8644.jpg
Angelica/Insectavora
http://c1.ac-images.myspacecdn.com/images02/52/m_086f3a3590ea4313aef274d961 9dda20.jpg
HEA Thee Lobster Girl
http://c2.ac-images.myspacecdn.com/images02/48/m_01a3239d7e4c49d3a47e69de66 4a26ed.jpg
I've met some great people since I've accepted my NF. I plan to meet more. A little story of how I first heard the word NEUROFIBROMATOSIS.
http://www.sideshowworld.com/tgodNLump&Bumps.html
J."KNOTTY" Willman
- By dababyrn2006
- Posted June 22, 2009 at 5:45 pm
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I have a cls that is in the shape of lower Michigan,.lol
- By auntiekatem
- Posted July 1, 2009 at 3:31 pm
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We laugh a lot in our family. My husband calls a bump on his scalp "his brother" and always warns the barber not to hurt him.
- By auntiekatem
- Posted July 1, 2009 at 3:31 pm
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We laugh a lot in our family. My husband calls a bump on his scalp "his brother" and always warns the barber not to hurt him.
- By knekers67
- Posted July 2, 2009 at 12:44 pm
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lol I know the feeling and have to say that humor can make most people at ease. For the people old enough to remember......when some people ask me what is wrong with my ear I say.........I am a big fan of Carol Burnette....I just tugged way to hard. Our differences is what sets us apart and how we handle it is what makes us. Humor works 98% of the time. It breaks the ice and helps to ease for most an uncomfortable sititution. Besides.....most people after meeting me......will never forget me. Gotta love that.
- By stumpythebumpy
- Posted July 2, 2009 at 6:13 pm
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i wonder what my skin would read out in brail to a blind man?? hehehe
- By deafnotdumb
- Posted July 30, 2009 at 9:13 pm
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Hi;
I'm glad my only weapon against NF when all the chips are down isn't just laughter.
As was said in 20th century wars, "there are no atheists in fox holes."
I turn to Jesus Christ. You may feel sorry for me if I don't laugh at the NF-2 I have. That's OK; I believe to already haven nearly died inside because of the ravages of the illness.
Um; Cheers!
- By deafnotdumb
- Posted July 30, 2009 at 10:28 pm
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Are you saying you disagree with my convictions, feelings and experiences having NF-2, which you probably are not familiar with, as I'm not familiar very with NF-1?
Have you found humor in people dying or deafness, bilateral vestibular loss, chronic disequilibrium, oscillopsia, juvenile cataracts in adults, pheocrysomotoma?
Can you find humor in people on feeding tubes because they can't swallow, or people who are blinded? How about those who can't walk or have facial paralysis?
The pain has been great and I've known it in others. There has never been anything funny about it.
My only solace is in the Lord in whom I believe saves my spirit and may send angels into NF-2ers lives that they be comforted.
I guess it's yours to disagree even though you don't know the particular pain many live or die with. It's a free country.
May our Creator somehow bless you in your infirmities, my friend! Part of that blessing may be your ability to maintain a sense of humor and not feel victimized. Others also...
- By deafnotdumb
- Posted July 30, 2009 at 10:33 pm
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I do realize what you mean in "a happy heart doth make merry."
It's a good thing if one can laugh at their illness.
- By guilty_spork
- Posted July 30, 2009 at 10:46 pm
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No, just the religious aspect. After last week's fiasco, I'm done asking people to consider my feelings. I would not laugh at your suffering. I do however find humor in my own. What else can I do? As I said before, when i was 5, I wrote my own eulogy... morbid, but hopelessness is fun to me. Hope has always ended in hurt and suffering for me. I keep my expectations low and my dreams high...
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