Quotes on being disabled and on just living with SB in general

“…see how the flesh grows back across a wound, with great vehemence, more strong than the simple, untested surface before. There’s a name for it on horses, when it comes back darker and raised: proud flesh, as all flesh is proud of its wounds, wears them as honors given out after battle, small; triumphs pinned to the chest-”
~Jane Hirshfield from “For What Binds Us”

“Disability is not a ‘brave struggle’ or ‘courage in the face of adversity’…disability is an art. It’s an ingenious way to live.”
~Neil Marcus, 1993

“Independent Living is not doing things yourself; it is being in control of how things are done.”
~Judith E. Heumann

“I asked God to make my handicapped child whole.
God said, No. Her spirit was whole, her body was only temporary.”
~from the poem “I Asked God” by Claudia Minden Weisz

“But I’m alright. I’m alive. That’s all that matters. I use everything I have. That’s all anybody can do. Use all we have.”
~Bob Lujano, member of the U.S.A. quad rugby team & one of the the stars of the movie “Murderball”

Courage doesn’t always roar. Sometimes courage is the quiet
voice at the end of the day saying, ‘I will try again tomorrow.’
–Mary Anne Radmacher-Hershey

” ‘Normal day’, let me be aware of the treasure you are…
Let me not pass you by in quest of some rare and perfect tomorrow.
One day I shall dig my nails into the earth, or bury my face in my pillow, or stretch myself taut, or raise my hands to the sky and want,
more than all the world, your return.”
– Mary Jean Iron

“You can think your way out of anything, even pain, if you have to.”
~From the movie “The Mighty”

“Scars are tattoos with better stories.”
~From a Toyota advertisement in Sports Illustrated magazine, June 2002

“They always love it when I don’t die.”
~Jerry Garcia, after being near death in 1987

Someday I’ll fly
Someday I’ll soar
Someday I’ll be something much more
Cause I’m bigger than my body gives me credit for
~John Mayer “Bigger Than My Body”

For a long time it had seemed to me that life was about to begin—real life. But there was always some obstacle in the way, something to be gotten through first, some unfinished business, time still to be served, a debt to be paid. Then life would begin.
At last it dawned on me that these obstacles were my life.
~Alfred D. Souza

“If I had no sense of humor, I would long ago have committed suicide.”
~ Mahatma Gandhi

“If your time hasn’t come, not even a doctor can kill you.”
~Mike Perlstein

I’m looking forward to looking back on all this.
~Sandra Knell

I know there is a lesson to be learned here somewhere, but I don’t know what it is.
~Linus Van Pelt

“I have become comfortably numb.”
~Pink Floyd

and on those really, really bad days:

“I don’t care if it hurts. I want to have control. I want a perfect body.
I want a perfect soul. I want you to notice when I’m not around. You’re so fucking special, I wish I was special…but I’m a creep…I’m a
weirdo…what the hell am I doing here? I don’t belong here…”
~radiohead “Creep”

and

“And being a fool, he was simple minded, he didn’t see a king. He only saw a man alone and in pain.”
~Robin Williams, The Fisher King

and
“Having depression and being in a suicidal state twists reality. It doesn’t matter if someone has a wife or is well loved. They get so consumed by the depression and by the feelings of not being worthy that they forget all the wonderful things in their lives.”
~Julie Cerel, a psychologist and board chair of American Association of Suicidology

and usually when I get over that feeling, the following quote applies:

It is a waste of time to be angry about my disability. One has to get on with life and I haven’t done badly.
People won’t have time for you if you are always angry or complaining.
~scientist Stephen Hawking, Interview with The Guardian (UK) September 27, 2005

or this:

“And the sign says ‘Everybody Welcome. Come in. Kneel down and pray.’ But then they passed around the plate at the end of it all, and I didn’t have a penny to pay. So I got me a pen and a paper, and I made up my own little sign. It said ‘Thank you Lord for thinking about me, I’m alive and doing fine.'”
~”Signs”, Five Man Electrical Band (later remade by Tesla)

And finally:

“I’ve survived a lot of things, and I’ll probably survive this.”

~JD Sallinger

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Crystal…an exercise in free association (originally posted March 5, 2009)

Obviously I didn’t write the song below, but I just felt like posting it. I sang this a lot to Crystal in the last 2 weeks of her all too short life. And it’s funny because I DON’T SING!! I mean, yeah, I sound amazing in the shower, and no one sings better than I do in there! ;^) But really, I don’t sing. But I did for her.
I first sang it to her when she was sleeping. Then we took her down to radiation and I told her she missed my singing. She was not happy! ;^) And in that beautiful voice of hers, that beautiful voice that was fading away and getting quieter and raspier due to the cancer and it’s effects, she said to me, “Encore, encore”. HOW WAS I SUPPOSED TO RESIST?!

So I just started singing. And she smiled.

…..that perfect, beautiful smile that I first fell in love with almost 18 years ago. I would come back from yet another shunt related surgery and I’d be sitting there in class, head half shaved from surgery, baseball cap on….and I’d feel someone watching me. I looked around. And it was her. Smiling at me. Looking at me with those gorgeous blue eyes. And she’d smile that perfect smile, and she’d wink that perfect wink. And I knew someone cared. In that moment, I knew someone truly cared.

I had a mom that did everything she could for me, and a girlfriend that did more than a high school girlfriend should ever have to do. But otherwise, it was kind of a lonely, surgery filled existence, day after day. It seemed like I was either in the hospital, or recovering from being in the hospital. And the days I did go to school, I was struggling to even be there, struggling to keep up with school work, losing friends left and right because they either were never really there in the first place or were nice people that simply didn’t know what to say so they said nothing….but there was always her. Beautiful Crystal Rosella Young, always with a nice word, a listening ear, a hug -a real hug mind you, not one of those fake bullshit hugs. A tight embrace, one from a true friend.

So life got better, the surgeries stopped, everyone lived happily ever after. (yay! :^)

But ever since then, I’ve been her little stalker, never leaving her alone. O;^) Always buggin’, always e mailing or something. Some years we were a little more distant than others, some years we only kept in touch on her birthday. She’d call or write after getting the roses I would send every year. “Signature red roses” she would call them. Always from Lehrers and always just signed “Me”. She was the only woman (that I’m not married to ;^) that I sent roses to every year. The only one. And no, my wife never minded. She knew my love for Crystal was pure. Pure, sweet, innocent, and unconditional. I never asked for anything from Crystal, I never wanted anything, I never expected anything. Simply her friendship, her sincere and real friendship, meant the world to me. And my wife knew that.

And Crystal would get the roses and she’d call or write and we’d catch up and have the best talks! Lately, we’d text. A lot. I love that she didn’t mind, because now I have those texts from her on my phone. Saved forever and ever. I have every single text (and there’s a lot!) from her in the last 6 months, as her journey got harder and harder. I read them. A lot. And I smile. A lot. And I cry. A lot.

Anyway….well lookie there, I guess I did write some stuff. I didn’t just post song lyrics.
I don’t mind sharing this with people. She knew how I felt and so did a whole lot of other people, and I guess now more people do. I’m sorry if anyone is offended or thinks it’s inappropriate. It’s just how I roll.

~Me

“Silent Lucidity”

Hush now, don’t you cry
Wipe away the teardrop from your eye
You’re lying safe in bed
It was all a bad dream
Spinning inside your head
Your mind tricked you to feel the pain
Of someone close to you leaving the game of life
So here it is, another chance
Wide awake you face the day
Your dream is over… or has it just begun?

There’s a place I like to hide
A doorway that I run through in the night
Relax child, you were there
But only didn’t realize and you were scared
It’s a place where you will learn
To face your fears, retrace the years
And ride the whims of your mind
Commanding in another world
Suddenly you hear and see
This magic new dimension

I….will be watching over you
I….am gonna help you see it through
I….will protect you in the night
I….am smiling next to you, in Silent Lucidity

If you open your mind for me
You won’t rely on open eyes to see
The walls you built within
Come tumbling down, and a new world will begin

Living twice at once you learn
You’re safe from pain in the dream domain
A soul set free to fly

A round trip journey in your head
Master of illusion, can you realize
Your dream’s alive, you can be the guide but…

I…..will be watching over you
I…..am gonna help to see it through
I…..will protect you in the night
I…..am smiling next to you….

~Queensryche

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The 3 best pieces of advice I’ve ever gotten

1. “Sometimes, don’t talk.  Just listen.” ~Julie Yindra.  It seems like we spend way too much time either talking or waiting to talk.  Sometimes….just shut the f*ck up and listen!

2. “Try the buffet.” ~Father Jerry Rohr, in response to the questions How do I know what I’m supposed to do in life? How do I know what path I’m supposed to take?  Try the buffet. If you don’t like one thing, hey, at least you tried it. Put it down and grab something else.

3. “Reality” isn’t what happens to you. “Reality” is about *how you react to* what happens to you. ~Loraine Martin.  Life isn’t crappy because crappy things happen to you. Life is crappy because you have a crappy attitude about what happens to you. You can have the best stuff in the world happen to you, but if you are a negative, pessimistic person, then your Reality sucks regardless of how much money you have or even regardless of the good health you may have. On the other hand, you could be going through cancer and your third bout of chemo.  But if you are a positive person, one who is not in denial, but who is optimistic and knows that every day you wake up is a good day, then your Reality ain’t so bad.

Which I suppose brings me to a fourth piece of advice I hold on to. This comes courtesy of my friend Polly. Several years back, she was going through cancer yet again and I was going through my own medical crap. We would spend hours talking about life, death, surgeries, doctors and everything else and she would constantly say, “You can’t just roll over and die. You can’t just stay in bed. You have to get out there and live. Look at me, I have cancer, I’m not in denial about that. I know I have cancer. But I also have Life. I also still have things I want to do, people I want to see. I still have responsibilities and things to get done. I can’t just roll over and die. I can’t just stay in bed. And neither can you.  Life is too good.  Get out there and live.  Get out there and try things.  Live. Love. Experience it all.” Which I guess fits perfectly with Father Jerry’s “Try the buffet.”

Yep…I have some smart friends who give great advice…..

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