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Friday, January 25, 2008
7:02 p.m. The Compass
There are moments in our life that define us, become our trajectory.
A compass to guide us, and if we are lucky,
travel the path of our destiny.
It is our parents that set us free into the wildness of the world giving tools to build our character with.
May we be blessed enough to see this before it is a reflection of their life.
These are acts of courage and the meaning of unconditional love.
For love from all others except our parents is very conditional.
It was my great fortune to be born of my mother.
She, at the time was without her compass.
She raised me to have confidence.
Not illusions of, but through struggle and the ability to get back up when I had fallen.
She gave me strength.
She gave me wisdom.
She taught me to believe in myself,
this in the end is really the only compass that children need.
Feb. 19, 2008 8:35am
Kryptonite I've been up now for about an hour and just pulled the steri strips off of my eyelid. Still taping the bling in place at night and after sleeping this way my skin itches so badly that I want to claw my eyes out. The only thing that would feel good is to rub them vigorously, which is also the most dangerous thing I could do. I clench my hands near my face and scream. I still feel fragile as if one movement would pull the platinum through my skin. How is it possible to feel like a superhero one minute and like shattering glass the next? Kryptonite.
Life comes in waves. Lately I've had the fortune to meet lovely souls of the spoken workd. 3 interviews in 2 weeks.
All the people that I've sat with have been groovy and peaceful sort of folks. They carry tiny electronic tricks, recording devices that make the interview just conversation. This format is comfortable and natural for me. D. J. was the first to interview me with this device in a coffee shop in Ybor. We named her Pearl and I would secretly speak into her while D.J. got coffee. It looks like a star trek transporting device. Barbee and I sat on concrete steps during a Roller Derby match. She in overalls, myself in pigtails, this unplanned interview took place. This returns me to the theory that sitting on the floor with someone brings out their true nature, silliness and confort. It's intimate. I no longer trust people that want to interview me while standing. Note to self....do all interviews sitting Indian style or in coffee shops, never trust a standing talking head with a phalic looking recording device. They are always in a rush and pretend to be genuine speaking through their fake teeth. They dart their eyes around, blink more than normal and nod too much. They practice looking attnetive. No doubt there's a maual, how to look interested or interesting when you are thinking about the latte you had with whole milk. that bastard put whole milk in my coffee, I wanted fat free,he's sabotoging me, that's another 45 mins. of spin, I'll get that minimum wage drone fired, is someone laughing at me....is there something in my teeth, I gotta pee. It's an oxymoron, pretending to be genuine.
Jan. 1, 2008 11:30am
New Years Eve- A day spent mixing dirt and flowers in new pots has pleased me. Brought comfort, quiet. I cannot talk about anything anymore, I'm losing my mind. This taking it easy crap has to go. Waiting to heal from this last surgery is making me feel old. Cartwheels would be better. The garden is soothing, a place to nuture, be nutured. Brushed off the loose dirt and headed to the Patteson's for dinner. Didn't feel like brushing my hair, didn't care. Found an old journal sleeping under an antiqued Jimmy Buffet t-shirt. It had a frog on the cover. This brought the first smile of the day as I bellyflopped onto the bed to open it. December 31, 1997 was the first entry. Holy shit Batman, 10 years to the day. Spooky. Intreging. Reflective. A ghost. Found words on marriage, relationships, the sadness of my grandfather's death, and the List for 1998. Felt certain that this was a sign, the universe pushing me once again in a direction. No time to read, headed off to dinner. As I plopped back into bed before midnight, I waited for something spectacular to happen. There's always the midst of that antipation on New Years Eve. Strange feeling, this waiting. Got up to check email, found spectacular thing. Drifted quietly but happily into the New Year.
Mon, 31 Dec 2007
Dear Butterfly Challenge,
it is with pleasure that I am the first to let you know that your work, your
pictures, your contributions to bringing awareness to Neurofibromatosis
will be seen around the globe.
When I was growing up with NF, there were no links, no support groups,
no fundraising, no awareness, no support and no answers.
Since I have found the CTF, I for the first time in my life, have not
felt alone in this struggle.
Now when a parent receives the devastating news that there child has NF
and they frantically search the internet for information, it will be there.
And along side all of the research information, doctors groups and the
disease process will be hope. Hope in the form of symposiums, current
information and inspiring stories.
Hope.
Follow the link below to see Butterfly Challenge on the CTF website.
www.ctf.org
Nf marathon team,
Inspiring Teams
I am so proud of you all.
Tonia, Robin and Kara are running in the Disney Marathon, Orlando
Sunday Jan. 13th. Sat., Jan. 12 , 4:30pm at Planet Hollywood is a
pasta dinner hosted by the Children's Tumor Foundation. If anyone
is interested in coming, pls. RSVP with me so that I can reserve
some seats. And if anyone would like to come cheer on the
sidelines for all of the NF runners, let me know and I'll get
information to you about where to go.
Happy New Year everyone!
Gasparilla's around the corner....who's coming?
Candy
Journal- 12/27/07 released
Wed, 26 Dec 2007
Thank you to everyone that has worked, trained, raced, participated, supported, cheered,
contributed and prayed for myself and every person affected by Neurofibromatosis. I am sincerely grateful.
Below is a message from Steve Kendra of the NF Marathon team, his words express how wonderful you all are.
Click here to view article.
Thank you,
Candy
Mon, 17 Dec 2007
Hey friends,
after 3 days of taping my lid shut, went to Habal's today and he DID NOT put more stitches in!
He felt like the lid was healing and ordered 10 more days of keeping the eyelid taped down and taking it easy.
Surgery today canceled,
prayers working,
thank you all,
much love,
Candy
Saturday, December 15, 2007 3:50 p.m.
When did it happen that we needed an engineering degree and a hammer to open any pre-packaged,
shrink wrapped, plastic sealed, bullet proof product of beauty or hygiene?
It was that asshole in the 70’s that poisoned the Tylenol.
It was then that we began to stumble down the double helix acting like crazed thumb-less
apes smashing light bulbs with coconuts.
I’m temped to send this mutilated package back to the manufacture with a box of
band-aids and a sweetly hand written note that states, “Go fuck yourself J”
This combination of p.m.s. and my eye bling has put me in a real fuck you mood.
I need to blow off some steam.
I’m angry, pretty fucking angry. I just want to blink. I just want to close my eyes when
I’m tired, when I’m frightened, when I’m flirting.
I just want to close my eyes.
It’s not diamonds.
It’s not Ipods or Wii’s that I dream of.
It’s not fast red things, tall blond things, or a rock star lifestyle.
It's simply, to have the ability to feel just a little bit like everyone else
and close my eyes.
Wed, 12 Dec 2007 19:32
Operation humor, prayer & love has been re-instituted.
Going in Monday (12/17) to Dr. Habal's office o.r. to have some sutures placed in my eye. Precautionary at this point, eye covered & stut again. No driving for .... a week?
So, here were the instructions given by Habal.
"Take it easy."
"No swimming, biking, running, jumping, upsideowning, stressing,crying or straining."
So...next week it will be frozen pees, wedges, comedies, baking and painting.
Send love,
I'll do the same.
Candy
A Response to the Bright Lights, Cold Steel Journal entry of Oct 31.
From: Candice Patterson
To: tom
Sent: Friday, November 09, 2007 8:02 PM
Subject: Re: Journal entry
I'm brave, very brave.....
It was a difficult decision deciding to share my journaling. I've journaled now for 20 years and
never shared my writing because I never wanted to write and think about who was reading it. It has
always been a place that I could go without judgment, criticism, and honestly just using that
part of my brain gets a lot of stuff out that needs a way out. Almost 2 years ago when this idea of
sharing my journey became a reality, I really struggled with what I wanted to share. That's why
sometimes I run something by my family and close friends and sit on it before deciding to put it on
the website. It's raw, but it's the only way for people to understand. I've received emails from
other NF patients, people going through chemo and they have found the journal helpful. My family has
found it helpful. There is still a great deal that I don't share, but someday I will, I'll smush them all
together in a book. My cousin Bree is the beneficiary of all of my journals in the event of my
death. They range from red binders, fuzzy zebra covered books, and as I complete them they are
stacked and wrapped with some leather twine and tucked away. My birthday is coming up and every year
on this day I buy a new journal. It doesn't matter to me if the old one still has lines left, it's just
a ritual that I enjoy along with a slice of pink cake.
There is so much of my life that I spend being strong, I need a place to crumble. Contrary to
popular belief I do bend and break, sometimes easily.
Above all, I am real and honest and completely embrace life, even the stuff that makes you cry.
Who was it that said, "Great love involves great risk." I can't remember, anyway, it's true.
Thank you for taking the time.
Hope you are well,
.....thinking about a bonfire soon :)
----- Original Message -----
From: tom
To: Candice Patterson
Sent: Friday, November 09, 2007 5:02 PM
Subject: Re: Journal entry
hi K-Lou,
This is so personal and deep. How do you share this? If I was the crying type, I would.
huggage,
tom
Nov. 5, 2007 8:23 a.m.
3 weeks post platinum eye bling, and I head out to the strange world of Roller Derby Boot Camp to do a medical stand-by. This was also the first time I wore eye make-up since the latest surgery and was able to match up some left over bruising with purple eye shadow. God it’s great to be a chick. How else is it that we can wear a velvet Elvis jogging suit with bling bling on the butt and rockin hot pigtails? Long day, Scotty helped with minor injuries and was the photographer of the day. Driving around now, tried to have a big night out later and work on those 7 margaritas. Had one and was in bed by 10 p.m.
It’s still hitting me that there are no more surgeries planned and I can actually think about something else. Fish and I had a fire in the back yard last night and I wanted to throw something in significant of this, a hospital band, ice pack, but there really isn’t anything I’ve found yet that hasn’t been an important part of this journey. With all NF patients everything is uncertain, how long can we stay out of the hospital? For now, I just want to take it one glorious day at a time and get my energy back. I see Dr. Habal after Thanksgiving for a check up and honestly, it will feel strange not to see him frequently. He and Laura have become woven into our lives. There is time now to finish the dental work and say good-by to the super sweet retainer. This will take a few more months, but after what we’ve been through, this will be cake!
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