Attention World,

People with disabilities are everywhere. In every sense of the word, we are everywhere. Sometimes you see us. Sometimes you don’t. We represent every nation, race, religion and sexuality. We are in your classroom, we are in your workplace, we are in your family.

We are truly everywhere, and it’s time to tell the world…

INTRODUCING PROJECT EVERYWHERE

3E Love is more than a t-shirt business. It’s taken time to fully understand the complete picture – the social message, the symbol, the people, and the corporate goals. It’s true, I make t-shirts, you buy them. Very simple in essence. But they only sell because of the power of the symbol and your willingness to embrace, educate, empower and love life. The t-shirts and other items sell because YOU love who you are and who your friends and family are. YOU want to tell the world that you are accepting of disabilities and share your story. No sale or promotional item that I whip up will change that formula for success to achieving our goals.

So, with that in mind – I unveil Project Everywhere.

The goal of the Project is no different than that of 3E Love. To spread our message and to spark the conversation of acceptance through our symbol on your t-shirt, bag, hoodie, etc. But, what I’ve never thought about until now is a goal or a measure of success!

So what I want more than anything, more than being successful at something I love doing, more than growing the company to hire my friends with disabilities and have a sweet office with a big fish tank and pet chimpanzee — is to put our symbol, a positive image of disability EVERYWHERE. If that happens, all of my personal dreams will come true – maybe even a bonus banana farm to feed my chimp. Even more so, if we can put our symbol everywhere, I believe that it will also open up doors and knock down social barriers for millions of others who are proud to be in the world’s largest minority. That I believe. That’s why I work 12 hours a day.

So that’s what Project Everywhere is all about — putting the International Symbol of Acceptance on every inch of the globe in some shape or form and setting out to do just that in a systematic way and measuring our progress as we go.

It might take 5 or 50 years, but it needs to be done. It will happen. Will you get into it?

The Official Goals of Project Everywhere
Every item sold or distributed will count as 1 symbol for tracking purposes (except buttons count for 1/5th of a symbol). Goals 3-5 are subject to change. County averages are weight-based from US Census population data (2000). Goals can be worked on simultaneously but the official corporate strategy of 3E Love will be to pursue them in the order presented.

GOAL 1

• 1 symbol in every zip code in the United States of America (41,315 zip codes)
• 200 each in Canada, United Kingdom, Australia

GOAL 2

• Average 10 symbols in every county in the USA (3,136)
• 100,000 total in USA
• 2,500 each in Canada, United Kingdom, Australia
• 100 each in Japan, China, South Korea, Russia, Germany, Spain, France, Ireland, Sweden, France, New Zealand, Italy

GOAL 3

• Average 25 symbols in every county in the USA (3,136)
• 250,000 symbols total in USA
• 5,000 each in Canada, United Kingdom, Australia
• 500 each in Japan, China, South Korea, Russia, Germany, Spain, France, Ireland, Sweden, France, New Zealand, Italy
• 100 each in South Africa, Egypt, Mexico, Brazil, Argentina, Saudi Arabia, Israel, Turkey, India, Japan, Pakistan, Indonesia, Philippines, Thailand, Poland, Serbia, Portugal, Greece, Finland, Norway, Taiwan

GOAL 4

• 500,000 symbols total in USA
• 10,000 each in Canada, United Kingdom, Australia
• 1,000 each in Japan, China, South Korea, Russia, Germany, Spain, France, Ireland, Sweden, France, New Zealand, Italy
• 250 each in the following countries: South Africa, Egypt, Mexico, Brazil, Argentina, Saudi Arabia, Israel, Turkey, India, Japan, Pakistan, Indonesia, Philippines, Thailand, Poland, Serbia, Portugal, Greece, Finland, Norway, Taiwan

GOAL 5

• 25 symbols in every other country except Antarctica.
• 1 sticker posted on a bathroom door at a science lab in Antarctica.
• 1 photo of the following wearing their heart on their sleeve: a President of the USA, Oprah Winfrey, Stephen Hawking, Mohammed Ali, Michael J Fox, Stevie Wonder, Oscar Pistorius, Marlee Matlin
• 50 photos of international celebrities wearing their heart on their sleeve.

Tracking Method
Over the next month or two, a new web site will be developed that will publicly track all geographical data and allow visitors to check their local statistics and engage in helping us reach these goals. In the long-term, we want to have a user driven site that will allow you to interact with one another and also become remote members of Team 3E!

Current Status
After 24 hours of data entry by some friends and I, we have tabulated every single online order since July 2009! We have distributed over 2,000 wheelchair hearts to over 850 zip codes in the USA! Approximately 90 wheelchair hearts have been distributed to 8 other countries. More than half of that has occurred since January 1st of this year. This represents 2% completion of GOAL 1!

What do you think?? Let me know your thoughts. Do you have ideas for additional goals to be worked into the Project? Do you have ideas on how these goals can be achieved? Comment or email me!

PEPSI REFRESH

All of the progress 3E Love has made in the past year has been done with only the help of cheap labor in the form of friends and family and with personal savings and credit cards! Realistically, we are going to have it to step it up a notch to achieve our goals outlined in Project Everywhere.

PepsiCo is giving up to $1,500,000 each month to individuals, non-profits, and small businesses (like 3E Love) who have a big idea that will positively impact their community.

So I am applying for their $250,000 grant level (only 2 winners per month) with the goal of completing the USA based agenda of GOAL 1 of Project Everywhere within 12 months. The best part is is that the winners are chosen democratically with your votes!

Assuming that my application is accepted to be in the April voting round, I am really going to need your help. So, if you have nothing to do and lots of time on your hands in April, I beg of you to get out the vote for me. We will be competing with HUGE organizations like the American Legion so if we are going to win, I am going to need lots of 3E Lovers!

Email Rachel Siler at rockrachroll@gmail.com, my interim director of Team Everywhere, if you want to help get out the vote or help complete Project Everywhere!

Let’s do this. More updates coming!

Love,

3E Stevie

Here’s a true story for you..  Then let’s have a discussion….

I was eating a burrito in a Mexican restaurant in the Pilsen neighborhood last night around 11pm. Delicious! Pollo con aguacate, crema, queso, arroz, frijoles, mmmmmm mmmm mmmm! The entire time this older gentleman was watching me eat and smiling. Just very sincere. Nothing creepy or anything that phased me.

I like smiles and I like to smile, so I smile back. It continues for about 15 minutes. This quiet conversation in our heads to one another ensues….

He gets up and we kind of just say “good bye, nice to meet you”, but with our eyes and facial expressions. Then he leaves and pays his bill for him and his familia, and out the door he goes.

Waitress comes over, and in broken english and a confused look on her face, hands us our meal tab and says, “gentleman paid. he paid your bill” — i say “huh? porque porque??”, she says ” I dunno, dunno.” –

I look at the tab “God Bless You. John 3:16. John 6:37. God is Love.”

Now this is probably the 20th time a stranger has paid my bill at a restaurant or paid my bar tab without ever talking to me! The second time a man has given me money after 10pm in a mexican restaurant. The 1,000th time a stranger has been evangelistic towards me. I love a free meal. I love free beer, and who doesn’t love free money? Plus -if I don’t know how to explain in Spanish that it is unnecessary to hand a stranger a $5 bill… I’ve got to accept it right?

But it makes me think…. there is no way these things would happen to me so often if I did not have a disability. Even though my stunning good looks has got to be responsible for at least 1/5th of the occurrences. Well, that’s what my momma tells me.

Tell me YOUR stories. Let’s not make this a religious discussion, but a discussion of funny, inspiring, interesting, random things that have happened to you!

Hi,

So I’m pushing all of my chips in the middle — I’m taking 3E Love as full-time as I can take it and still pay the bills. I really don’t have any passion or ambition to do much else right now. Everything 9 to 5 feels pointless and minute in my big world. But everyday, the only thing that feels right to pursue is this symbol permanently inked over my heart. Sometimes you have to follow that calling.

I haven’t sat down to write or express myself lately. Instead I’ve been transferring that expression to work. Feels good to be productive again. In the coming months, you’ll see a brand new 3E Love web site dedicated to you and your story, countless new tees, hoodies, butt shorts, hats, stickers, and more ways for you to help and get involve.

All the IMs, emails, and messages I get daily – “oh my gawddd i love that new tee stevie” or “you should make charms for bracelets” or “you should go to schools and talk about disabilities” or “keep up the work, i look so sexy in your new t-shirt” – keep them coming. I may not respond immediately, but I love hearing your ideas and getting your feedback. But also keep them coming because when I see my credit card statements come in with exorbitant balances next week, I’ll need constant reminders that this is a good idea.

And every time I hear “how can i help, how can i get involved” — I just get so impatient for the future. But please have patience with me so that my own impatience doesn’t ruin my mojo. All of my big picture plans have the end result of including YOU to any extent you wish. Annie was always convinced that even though it was her symbol in the eyes of the law, she could never own it more than someone else; but, by creating it she was given the right to protect its use from ignorance and pity and given the right to use it to spread her message and tell her story. And now that she’s gone I need your help to do this, and even though the company has my name written all over everything, it will only be as successful as those who support it. You.

So yes, I hope to soon open up the doors and welcome you to my army.

Until then, rep the heart on that sleeve, rep it on your facebook page, buy some more swag, tell your friends to do the same, tell your organization, company, or school to celebrate disability awareness month this October with a bulk order for their staff, and lastly……

Be a fan of the company on facebook.
http://www.facebook.com/pages/3E-Loves-Wheelchair-Heart/106155232658

And then click that link Suggest to Friends below the profile picture and start clicking…..

And please read and respond to the discussion topic, “What is 3E Love”. Post photos of you in your shirt, your tattoo, and do it up. For the new web site, I’ll be asking for all of this anyway!

My Wheelchair is Sexy,
Stevie

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BUY STUFF
HTTP://3ELOVE.BIGCARTEL.COM
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MY ANSWER TO “WHAT IS 3E LOVE”

What is 3E Love? What is the Wheelchair Heart symbol?? I get this question almost on a daily basis. They are the hardest of questions for me to answer now that Annie has passed away. Yes, I may have started the company with her and I had the closest relationship possible to Annie and the vision and ideas behind the company and symbol. But even as her and I discussed the plan endlessly, we never came to an ABSOLUTE answer. And I don’t think there ever will be one.

So first, here, here’s the simple answer. 3E Love is a business, a social entrepreneurial experiment, an LLC incorporated in the state of Illinois in 2007 by Annie and myself with the help of a few close friends and family members. The name 3E Love represents Annie’s “three E’s”, “Embrace, Educate, Empower” – her idea behind the best way to break down barriers in society and advance the rights of people with disabilities. The Wheelchair Heart Symbol is a trademarked and copyrighted image created by Annie in 2004.

That’s the boring version of the answer.

“Embrace diversity, educate the community, empower each other, and love life”.

But how do you DO THAT, how do you explain how you are going to do THAT. The truth is, the 3E’s were our best creative approach to building a motto and tagline that best represents the symbol and the company’s societal goals and externalities of our products/services. We don’t embrace diversity. That is not a product or service. We sell t-shirts. Hopefully that will help people embrace diversity. You wear the t-shirt. Hopefully it acts as a conversation starter. “What’s that about?” someone might say when they see you at the store. Now it’s your turn to educate your community, one person at a time. That is only one application of the 3E’s to the company. There are a million more, I hope. Through clothes, books, movies, speeches, etc etc etc. The ideas Annie and I had for the company are endless, but one thing at a time.

One thing at a time because it all started with a symbol — now known as the “wheelchair heart symbol”. Our official name for it is the “International Symbol of Acceptance”, but people won’t google that when they see it on a bumper sticker so we have to refer to it how it looks – it’s best for t-shirt sales. Haha

So the symbol, the symbol is the company. Without it, there would be no 3E. 3E Love in all honesty is a marketing company to market the symbol. So forget the 3E’s for a second. What does the symbol mean??

From a broad perspective, this is what I’ve always told people:

The symbol is an attitude. A Lifestyle. It’s about accepting one’s abilities and rallying around that diversity and turning it into strength. It’s about loving and living life to the fullest no matter who you are and what you look like, what you can or cannot do.

It’s a replacement to the stigmatizing “handicapped symbol”, where the focus is the wheel. Plus, why should people with such conditions as muscular dystrophy, cerebral palsy, quadriplegia, down syndrome, visual impairments, hearing impairments, Parkinson’s, and even plain old age, all be grouped by a big degrading symbol that means “Watch out!! Someone different parks here or lives here!!” or “Pity them, give them money, feel sorry for them!!” Especially when only a small portion of people utilizing services associated with the ancient “handicapped symbol” even use chairs.

That’s one thing the symbol is not. A symbol of pity. One of Annie’s greatest fears was that the meaning of our symbol would be related to charity, pity, non-profits, or the quest for a cure. It is of course a result of ignorance when people see our symbol and automatically ask “aww where do I donate? Let’s cure the ailing children…” — that’s an ignorance we hope to change. And it’s the reason we attached it to a business, entrepreneurship, and products. It’s a flat out statement if 3E Love is successful from a business perspective that people with disabilities can achieve things without pity, without handouts. It is not a symbol some huge non-caring conglomerate parades out there to raise money for a cause their employees don’t even understand.

Behind our symbol is a company started by people with disabilities, with pride, joy, and passion for who they are and what they can achieve. Call it a “cause” if you insist, as long as the cause has nothing to do with wishing for change to who we are, but instead change to how we are perceived and how our abilities are perceived.

To Annie, it was her tattoo on the back of her shoulder that opened up so many doors for her. People would come up to her on the street and tell her how much they liked it. She would befriend them, they would realize that she is more than a woman in a chair. It was a social conversation piece at the start. It took a few years for her to realize it was so so much more and could have a positive impact on others the way it had for her.

To me, it means — no I am not in a wheelchair, I use one — and I love that I do! I wouldn’t change that for anything. Everything I am and who I have become is directly connected to my disability. And I love the life I have, and try to love it even more on the bad days. The symbol is also a statement – I am not just a person in a chair, I am a man who has friends, a family, who loves, who wants to be loved, who is educated, wants to achieve great things, and who wants to love every year on earth, whether its 85 or 26.

Source Blog: atriptosaygoodbye.com

I have three more hours of life reflection until I reach Salt Lake. I have 7 hours to Denver from there. And another 16 home. It’s safe to say that I could feed you a synopsis of every moment since I last wrote from El Paso Texas almost 2 weeks ago.

But I also know that that would be a lost cause. 30 hours on my iPhone notepad will never be enough to convey the ups and downs of this journey since landing in California and how much heaviness weighs on my mind.

I sat in a rediculously overpriced restaurant yesterday only hours after letting lady luck burst my bubble of excitement after months and months of anticipation. Yes, I lost in the WSOP event #4 after only 2.5 hours. And as I sat there, I was not upset that I had just lost $1,000 and got beat on a river that was 90% in my favor. I wasn’t upset that it was over after all of the hoopla.

I mean seriously. Who gives a shit?  It was just another reminder that life can be a crapshoot. I’ve seen worst luck in 2009. 2008 too. 2007 is a blur but I think that year sucked too.

But I sat there thinking and thinking.

Life is an every day casino. Some days are luckier than others. Some days the outcome is out of your control like a slot machine or a craps table. You can stumble onto something great if you roll the dice and put yourself out there. But you can also be hit by a car as you walk out to grab your mail.

Sometimes life is a lot like a poker table, where you are no longer playing against only against the house. A group of people from all different backgrounds with all different abilities to play the game. Some people are absolutely horrible at the game. I mean horrible. They will get lucky enough to convince themselves that they should keep pushing in their paycheck every 2 weeks. Haha. They are my favorite. I love to look into their eyes and see divorce papers and tv dinners in their near feature. I’m going to hell probably, yes.

Then there are people who just have it. They were made for the game and no matter the luck they will be on top in the end if they keep sitting down.

Some people suck at life but find a way to win every once in a while. Others are amazing at life. Like me. I pretty much rule. But I haven’t really found success yet. And bad luck loves me. Then there is Annie. She owned this planet. She was on to huge things. Big stars in her horizon. She just happened to accidentally lay down in front of an idiot with a scalpel.

And I sat in that restaurant. All this crap on my mind. Like all the other useless rants I have between my medulla oblongada and frontal lobe and then decide to pass onto friends and family and now strangers on the interweb.

And I sat there thinking about what table of life I was going to sit at from now on. In every sense. What my priorities should be. What I should do for a living. Should I even bother working? Where should I live? With who? And why? Why do anything in life?  What do I want? How am I going to get it?

In fact, I sat there with one part of me itching to run home on a flight to Chicago with my mom who was trying to get me to shutup and eat the beef and brocolli in front of me.  I was tired of the lights and noises and road signs. And the warmth of a 4-star hotel and the care of someone other than an unshowered dude made me realize I miss the life at home and am not made for a broke ass life in a van and budget inns.

Another part of me was in San Francisco, where I fell in love with a city that speaks to me. It’s pure. It’s perfect. I could move there.  Go to UC Berkeley. Get a job. Convince some girl to fall in love with me. Get a big house on Nob Hill and sing the Full House theme song every morning rain or shine. Hold hands in golden gate park. Crab dinners at fishermans wharf. Take my kids to muir woods in the summer. San Diego in the winters. Just like the movies.

Or how about I turn around. Go back to Vegas. Get a day job. Some administrative mindless bull. Something someone else calls a career and I call a job.  Ask every high paid cocktail waitress and stripper to marry me and support me financially until one day 20 years from now she finds herself still wiping my ass and wondering what happened to her life.  It’s all a numbers game in Vegas. But seriously, just money at my day job to pay for room service and a room key. Then hit the poker room until 2 am where my personality comes to life. It’s the only place where I feel my disability can be quickly turned into and asset or even forgotten. I never feel more equal. I can sit down with a few hundred dollars at a 2/5 table or a few thousand at a 10/20 table and within an hour I can be the man to beat. Not a man in chair. I can be anyone I want to be. A quiet nice guy. A loud sarcastic bully who calls huge raises without looking at his cards and then buys everyone at the table food in return for taking their chips.  I can be the hardass who wears huge head phones and never cracks a smile. There are no rules. And no one cares. All that matters is your mind and your performance and ability to come back from getting knocked down.

Which, is my favorite part of life too. Getting ran over, learning from it, and moving on in hopes of a better tomorrow.  It’s a vicious cycle of challenges I am more than familiar with.  I love it. I feed off of it.

This cycle of difficulty, which I could argue has lasted three years now, will end up being a major turning point in my life.  Obviously, the death of my sister, being the climax of a really bad horror flick.  Optimistically it is just another challenge set in front of me. And if I succeed in overcoming this one I  will be better off than I was before, having getting up from another brutal knockout punch.

I really believe I will have the last laugh. I’ve always believed that. Always felt this illusion of grandeur and quest for greatness no matter the disaster in front of me. Sure I have had down days, but in general I try not to live in fear or deep in regrets for lost causes or wasted time. All I have is the hope things will get better.

It’s why I am out on the road right now. To figure out how I am going to endure the greatest setback so far. Find out through experiences. Experiences Annie should have had. Not me. This is how she lives her life. Not me.

Until now.

Maybe that’s the answer. Maybe that’s what I’ve learned from the trip. And maybe it’s now my answer to this knockdown.

To live more like Annie did.

But even though all of this is very positive, the pain in my chest as I sat in the Asian restaurant with my mom and Bill was great and like nothing I’d ever felt before.. If I was afraid of death I might have called for an ambulance. It was that bad. Of course I didn’t let them on to exactly how bad it was but I did talk about my future. Near and far. And the racing confused thoughts I was having.

My mom went the simple route. Just trying to convince me that this was normal after all I have been through these last few months and years.  Especially after my “great escape” and now with the impending return to my nightmare. Living with my parents without Annie, going back to work during a horrible economy for someone in my field, and returning to Chicago after seeing the great frontier. All these feelings were normal.

Bill says I am a changed man and I am realizing that and the need to integrate it into my realities of everyday life. I guess I can agree to some extent that I am Stevie in a new form. I’ve experienced things not possible without putting myself out there. I met some interesting people and done some crazy things. And I definitely don’t want such happenings to end on June 9th.

I mean. Why would i want this to end.  The last two weeks were incredible.

Sure I almost died in Coronado at dinner choking on mozzarella cheese chunk. But San diego was beautiful. I saw the ocean for the first time ever and tasted salt water for days. It also took days to clean all the sand from my body after being buried neck to toe. And I am proudly the first person ever to use the beach wheelchair at Pacific Beach to surf. Hugo was second. My only knock on San Diego was that it’s the only town that makes me wish to be an able body. Everyone is so health conscious and beautiful. I really felt the need to rip my shirt off and go jogging or get in the gym. San Di-EGO.

Los Angeles. Well that was a freak show Annie would have loved. I spent most of my time at Venice and Santa Monica Beaches. An interesting fellow named Raj gave me a tarot card reading and told me everything I wanted to hear for a suggested donation of $20. Oh, I could spend a day writing about that reading. It’s as if he knew me. Creepy. Hugo and I then did a 4 mile round trip trek with Joel and Steve on our backs all the way between the beaches on the bikes only path. I think we were the freak show.

Oh San Fran. If I lost my mind in Phoenix, my money in Vegas, then I left my heart somewhere in San Francisco. And I will return to find it again. Love at first sight. You know that feeling. When you meet someone insanely special. You only feel it a few times a lifetime. Well for me, San Fran might end up being the one that got away.  I’ve haven’t felt so alive in a long time. And a town can never say “hunny, i think we need to talk” and then spew out some stuffs about needing to move in another direction. Yeh. That place could be my home. I’d never feel alone.

Vegas. Well, vegas gives you a similar feeling, but the more perverted twisted version. I’m glad I went there at a time in my life that I claim to be an asexual responsible being because that evil town can get to more than just your wallet. It is filthy in a way that feels right at the time. Drugs sex rock n roll and of course gambling are the economic drivers of sin city. I’m quite happy with the shape I am in leaving, even after my big poker loss. It could always be worse there.

Truthfully I now feel like the trip is over. Sure I’ll have some memories from these last few steps but all that is on my mind is home. The things I must now do. I must not put off. I guess things I have to come to terms with.

I can my change my life. I can even change the lives of others.  But I cannot stop or turn back the second hand. It’s time to make some decisions.

I just want to have something beautiful. To share my life with someone beautiful. And want to be someone worthy of such.

I got to sit back down to a table. And play.

Wish me luck. I’ll try my best.  One step at a time.

burying yourself in sand isn't as cool as it sounds before doing it, trust me

Source Blog: atriptosaygoodbye.com

So as I sit here with my iPhone earpieces plugged in listening to my favorite car jams on I-40 somewhere in the Mohave high desert, I am pondering how to even begin this. I don’t think that I can completely do justice via prose the heaven and hell I’ve been through  the last 96 hours.

Since my last entry I’ve experienced the entire gamut of road trip awesomeness and adversity. From starvation, heat exhaustion, and a bad flu to the most beautiful place I’ve ever imagined to depression and self reflection to a Polish American man named Dawid (Da-veet) who is the perfect blend between robin hood, peter pan, Picasso and insanity.

If California treats me similarly, I’m not sure I’ll survive this road trip.

Where do I start?

Maybe I should commence with a huge thank you and general update on the logistics.

Thank you all for continually checking our website and donations of food, beds, and cold cash. The generosity and love experienced during this road trip is as great as the experiences of scaling mountain tops and water sports. When I first had the idea for this web site I only imagined it as an outlet of communication for friends and family and maybe a source of small donations and ad revenue to help pay for the site costs and to make our trip “green” by paying for carbon offsets. But no, since most of you have told your friends and family and continue to come back, I’ve raised enough money for the website, carbon offsets, and hotels and gas for the entire first 11 days from donations alone. My lazy self hasn’t even added the advertisements to the site yet.

So thank you for that. And then thankyou to all the wonderful friends and family that have gone well over expectations in their hospitality. All I wanted was AC and bed. Instead we got ribeyes barbeques beer hearty breakfasts and personal tour guides.  I know that I can’t speak for everyone in the van but such great hospitality really helped weave my nervous nelly nature into a free spirit.

As far as a logistical update is concerned, we are on track with the posted itinerary. We have driven 3,100 miles and the Van is only making slightly unnerving noises. No one has lost anything irreplaceable. But we did lose a very specific camera charger so photo updates have been lacking. To make up for it, Bill and Steve are editing our very first video to post tonight or tomorrow in the backseat as I type this.   We have also lost much of our enthusiasm for video recording so there will be a very large gap if we ever put together anything from our clips. Eh so it goes.

But then again in the last few days there have been about 100 moments where we exclaimed “gosh I wish we had the video camera turned on.”

We slept in a La Quinta (my hotel of choice) in El Paso, all crammed into one room. Hugo, Bill, and I cuddled in a king size bed and Joel and Steve had floor honors. Then we ate their complimentary continental breakfast. Bill and I had a discussion on the root of the word “continental” and are clueless as to how the word came to be used for poor quality eggs and bisquits at discount hotel chains.

We left as early as possible for our next 8 hour drive to Phoenix. This drive included many firsts for me. First mountains of the trip, first time in the desert, and first time seeing Mexico.

Southern New Mexico was scenic but eventful. But it’s when I started feeling adventurous and it’s when I really felt the spirit of the road trip. We really hadn’t done a great job spreading Annie up to this point, having settling for a piece of lawn in St Louis and completely skipping Oklahoma (that’s ok, who wants to be there?). Right about 5 miles from the Arizona border I ordered the driver to make a quick exit. I wasn’t about to abandon another state. We went about about a mile down the road and found a sign labeling the road the Korean War Veteran Memorial Highway. This was as good a place as any. We sprinkled away and took some silly photos. Mostly of Hugo in his Dallas souveneir sequent cowboy hat.

Then on the way to Tuscon for dinner we stopped at a town of 700 people called Fort Byron. There were at least 10 road signs advertising Walnuts, Peanuts, and Wine. $3 dollar wine unlimited wine tastings later we bought 10 bottles of wine to ship home along with some nuts and fudge. We’ve been lazy and haven’t gone to fedex yet, and I am guessing that 112 degree weather in a black minivan doesn’t do much for the wine quality. The experience was great though. Pure road trip spontanaeity. I sat out in the middle of the street of the downtown area and only saw one car pass. A ghost town with a great winery.

We then went to Tuscon for dinner and randomly picked a local owned restaurant specializing in Mediterranean cuisine.  This is the road trip of firsts afterall, even food. Up to this point I had tried my first Texas BBQ, baked beans, and cole slaw. Why not try some ethnic cuisine? It was absolutely disgusting. My four amigos loved it, but I can’t handle that intense flavoring. Even the French fries were overwhelmingly tasty. Cumin, curry, oh my. Gross. The manager was a great dude though and gave us free desert. We like free stuff.

So onto Phoenix to see my friend Brittany and check out the town for 2 nights. This was supposed to be the first major stop where we were going to stay in a hotel. On a whim we decided to use an internet site called couchsurfing.com, a site connecting travelers with nice people who offer up their beds and couches. Risky, yes. Creepy, yes. But why not? Our budget is tight, we know no one, and this is supposed to be crazy.

Crazy is what we got. We rolled up to the strangers house, which appeared to be in a very shady neighborhood in the heart of downtown Phoenix.  Then a talll lengthy man knocked on my window. He was wearing a full suit and a hat with a feather sticking out of it in 110 degree weather, and I knew we were in for a treat.

Dawid is his name. Self-proclaimed Polish Prince of Mayhem.  An artist, his house is decorated like a room out of Alice in Wonderland, with a keyhole instead of a bedroom door, pinball machine for a kitchen table, headless manicans for lamps, homeade light fixtures, tree stumps for chairs, and an 8 foot tall bronze hookah. It’s actually really incredible. It sounds dysfunctional but it was quite cozy.

Upon meeting him and entering his labrynth of creativity, we discussed our trip, his passion for art and volunteerism, and his regular trips to Mexico to cure cancer with non-traditional medicine.

Then he invited us to a tranny motorcycle bar. At this point Bill looked at me and said “whatever happens this weekend, just say yes.”

We did not go to the tranny bar the first night but we did let Dawid chauffer us to a german sausage restaurant that becomes an illegal bar and rave party at night that lasts until the morning.  It reminded me much of the scenester hangouts I am familiar with due to my time promoting teeny rock concerts but only the mid-twenties version. Swooped hair, ear guages, tight pants, heavy petting and bad music. Picture a hipster gay bar with electronic music and german beer for people who never want to grow up.  It was kind of awesome and it kind of was the worst idea of the trip. I didn’t drink but we were up until 430am and I have not been feeling right since.

The next day we all went to visit with my long lost friend Brittany. Brittany and I met as lil kids at MDA camp and bonded over our spinal muscular atrophy, love of bad music, and hatred for camp rules. We were known for our non participation and finding spots hidden away for Brittany to smoke.

About ten years ago she moved to Arizona to get away from family life and find better breathing air. After her attempt at independent living fell apart she moved into an adult group home for people who use ventilators and has been there for 7 years now. This was the very first time I have visited her.

I wish I would have 7 years ago. The family home she lives in houses four people on ventilators and in return for over $10,000 in government funds per month will house you feed you and hire caretakers. There are only two non English speaking caretakers and one certified nurse during the day and one nurse at night.

Brilliant business model, horrible living situation.

Brittany and her peers have to be in bed by 630 and get in trouble for something as simple as laughing too loud. They get to leave the house once a week in groups of 2, but other than that are stuck without outside help.  There are even restrictions on how often and when you can go to the bathroom.

I knew places like this existed and I knew Brittany’s living situation was not ideal but this I did not expect.  Not only was this hard for me to experience but it made me want change. And it made me so thankful for the home and people and opportunities I have had.  It will be a constant reminder that life can be worse and a push to reach for more.

But it will be even more than that. It’s going to be hard from the road, but I want to get her out of that prison when I get home. I don’t know how or when but I’ll do my best to help her get out.

This day wasn’t even close to over. First I went to a family owned Mexican joint to get some eat at about 11pm. Best Mexican food I’ve ever had in the middle of down trodden Phoenix. I also tried speaking to some friendly looking men next to me. He kept saying “no entiendo no ingles.” So I broke into my college Spanish. Should have seen the look on this guys face. “This crippled unshaven gringo is speaking my language!” then his quiet friend insisted on giving me $5 for my trip eventhough he didn’t own a car and needed new clothes. That is generosity. I’m going to pay it forward.

Then we continued our plan to go with our new friend Dawid and his girlfriend to the tranny karaoke bar. Plus we told Hugo we would take him to a gay bar on the trip. But it was getting way too late for me so my plan was to just drop them off and be in bed by midnight.  But no, the tranny bar was closed down that evening and the group was insistent on a crazy night. So from there we went on what felt like some sort of gay witch hunt. And what our tour guide thought were all 18+ dance clubs were only 21 allowed so the entire group couldn’t get in. Our last stop was a place called Apollos, where they have weekly Sunday night gigolo stripper performances. I waited again in the car hoping they would get in so I could finally retire. Nope. Missed the show. The traveling showman was already tucked away in his RV named Prowler. We did get a positive review from a man in the parking lot who was thoroughly entertained even though be does not normally like muscle men and he is not a “size queen”.

By the time our search for male performers was over it was 2am and I was still up.

Horrible.

And then I woke up with a sore throat.

But the show must go on. The day was supposed to be easy but due to the late nights we didn’t get out of the 110 degree hell until 1pm. We drove up towards the grand canyon for a sunset viewing.

Before the canyon, we took highway 89a through Sedona.  Heaven. Wow. I have never experienced mother nature’s beauty like this or ever imagined it to be this spectacular. Mountains, forests, rocks, creeks, canyons, crazy bridges – it was a phenomenal drive.  But there were Starbucks and designer clothes stores and churches everywhere, which makes me wonder. Is it greedy of mankind to immerse our civilization into such beauty or should we be applauded for achieving such destructive greatness?  Either way, this is one place I plan to return on a longer vacation.

We also made two pit stops to sprinkle Annie. The first was when we first entered Sedona at the Red Rock National Park Viewing Center. It was a great view and there was also a cow down below. It unfortunately started to rain so we got back on our way north.

On a whim we pulled off for a “Scenic View” exit.  It ended up being the Coconino National Forest Viewing Exit.  It was absolutely astonishing. I rolled my wheels all the way to the rails and looked down into a well over 5,000 foot canyon. I’ve never seen a view like this before in my life.  We sprinkled Annie over the edge and Steve said some nice words.

By this time my sore throat turned into a fever and misery. But who cares? You only live once, sometimes not at all. I wasn’t done with this mountain.

I was going to go where no gimp had gone before.

I took my chair off the trails on an extremely rocky pass that over looks an unprotected edge. I took it as far as I felt was safe. If I wasn’t sick and freeIng I think I could have gone another 100 feet or more. Even though it was difficult, it was so liberating to go out there and seclude myself into the wild. It was a powerful moment to look down into that canyon, only 5 feet and a wheelchair malfunction away from disaster.

After my little offroad mountain expedition we still had two hours to the canyon of all canyons. To see Sedona and the grand canyon we went 6 hours out of our way instead of going to San Diego. We were so close. But my fever was pushing 101, my breathing was getting worse with every foot we climbed into the mountains, and we were going to most likely going to miss sunset and sunrise given the overcast. For an hour or so I convinced myself I could make it but the truth was that I was really scared to fall asleep 3000 miles away from home, five hours away from a hospital, and 7500 feet above my normal breathing altitude.

So I told the boys that I thought we should drive as close to LA as possible to get to lower elevations and medical facilities. I felt really bad that I was the reason for the first trip detour. But really it was a lesson to all. We have to take care of ourselves.

Nonetheless, when I told them the bad news they were fine, and Hugo exclaimed “it’s okay stevie, we saw our own grand canyon!”

Yes we did.

phoenixxx

Source Blog: atriptosaygoodbye.com

Dear Annie,

I find it hard to believe that you have been gone for so long. Almost four months. One season. It feels like an eternity. Knowing that there will be many more seasons without you and that time moves so slow – it’s hard to swallow.

You love the summer. Wearing those cute little sundresses and sandals. Going to Winneconne to sit out on the dock in the blistering heat. Rolling down to Bar Louie and Jappnica to get food. The disability pride parade. Starbucks to buy hot coffee on a hot day.

It’ll never happen again.

You’ll never get on the L and come pick me up at Union again. And I’ll never be able to come over and eat tator tots on your tray table and make a mess.  I’ll never be able to plea with you to befriend the cute neighbor girl.

I’ll have to meet my own neighbor girl.

I can ramble for hours about all the things you won’t do. The things I won’t do. The way the world has been flipped upside down without you. How different my world is now.

I don’t really have to tell you. You knew that you were a big deal. You knew that you were something special to a lot of people. Or at lease I hope you did.

I haven’t cried or had nightmares in probably a month. I used to have this reoccuring dream that you faked your own death and that it was all one big joke to you. I’d wake up thinking wow, what a horrible nightmare that was thinking that you had left – I’d wake up wanting to celebrate your awesomeness with you.  Applauding you for putting us through all that hell.  Totally your style to pull something so dramatic off without a hitch.

But no. No.  You’re still gone.

Why are you gone though?. It wasn’t your time. No it wasn’t. If you asked me  even a day before who I thought would go first, me or you – I’d bet the house on myself. You were so healthy, vibrant, full of life. Loud with love.

It makes me absolutely sick thinking about what they did to you. How they treated you. How little most of them cared. I know you know. You told me. But why didn’t you scream louder?

I look back and I see all the signs and all the obvious pleas for help.  Why didn’t I take you out of that hell, fight for you harder, figure out the puzzle behind your pain?

I have to live with the thought everyday that this didn’t have to happen, that you didn’t have to go on your journey. That it was very preventable, if not by others but by me. It might not sound logical to our family and friends, but to me it is clear.

I was supposed to keep you safe – I’m writing you to tell you I tried, and to ask for your forgiveness. And if you can give me that then I can live with the nightmares and these thoughts. And if you can give me that I can live with remembering my last mental image of you and the last words you muttered…

That being said, I don’t want you worrying about me. Or anyone else for that matter. I don’t think you would blame anyone and I know that these thoughts are normal considering what has happened.

The last few weeks have been much more serene, bittersweet wavering towards the sweet. I’m coming to terms with my new life, not completely but enough to stop the horrible images and thoughts and nightmares from finishing after they start.

You’ve almost given me a new life. Well, you have. New because it’s different.  And if anyone in this world taught me anything about handling adversity and turning it into positivity – it was you. Both before and now.  But now you don’t even have to waste your breath. It’s happening on it’s own.

There’s so much I want to do. For you, but for myself too.

I’m on this trip right now. Maybe you know. It’s not much different than the one that you are on yourself. You are moving on to find a new being, maybe into nothingness. Maybe there is a heaven and you are watching over me. Maybe the eastern world is spot on and you are in the shape of a turtle in the Colorado River.  Maybe you were just a moment in time. I’m just a moment and we had a grand collision like molecules apart of a larger organism.  And now I’m moving on to my next collisions.

Whether the Christians, Atheists, Budhists, or any other group is more right about your current place than another, I’m empowered knowing that we are together on our transitional journeys.

I’m out on the road with some of your favorites. Joel, Steve, Bill, and little Hugo.   We are out on this grand journey across the western US to sprinkle your ashes. Of course we are doing this for ourselves too. It’s a once in a lifetime opportunity for many people, and a never occuring opportunity for many others. We are set out to have a blast and to live for the moment. Just like you would if you were here with us.

I went to Dallas the other day. Thought about you so much in this beautiful arboretum. It was a little weird to be there with mostly dudes. Flowers trees and dudes. There was tons of hand holding and little kids running around on field trips. Then us dudes looking for the best place to illegally sprinkle you. Emily, our old friend and PA got us in for free and prepared us a picnic. It was awesome. We finally found the perfect resting place there for you. This path of hanging trees leading to huge fountains in the distance with happy children running through the water. Perfectly hidden in the shade and out of the hot sun, peaceful yet in the earshot of laughter. Steve had the honors of sprinkling you and decided he was going to leave enough to feed a small army of pigeons.

Then. Well then came Austin. We stayed with Aaron for two nights. You’ll be glad to know that he misses you dearly, and was proud to show me a photo album you made for him. He cooked us ribeye, eggs, potatoes, the works. Meal after meal he took care of us and we finally did our laundry there too. The first night we went to 6th Street to hang out with the worlds freaks.

Annie, you would love Austin and 6th street. Imagine instead of segregating people by income levels, nationalities, and sexuality into neighborhoods, they were just dumped into a 1 mile radius. Talk about a sociological examination of sub-cultures. You were in my backpack in your resting place, but I have to imagine you were in heaven. I mean, the minute we rolled out of the van a drunk guy fell in front of me with a six inch blade ready to battle someone. The cops then quickly tackled him. A block of hip hop and thug life to wade through, then came the prostitutes and homeless.  A ragged looking braless lady using a walker was peddling for change strolled by me and then Aaron was bothered by a bum selling magazines. On rejecting the sales pitch, Aaron was called the N word and then argued with the guy that it was poor usage of the term since he is actually a Texas honkey. Then we went through a street of college frat bars, with pizza places every 3rd bar and concert venue every 5th. Band dudes everywhere. It wasn’t long until we found a watering hole for the evening. An Irish pub owned by an actual Irishman.  He was bouncing off the walls and mostly on something artificial and non-alcoholic. Every Katy Perry wannabe seemed to frequent this place. I then met this adorable girl maned martha who was sporting a hair-do and outfit you would probably have right now if able. We chatted it up a little, and in my new annie fashion I had her feeding me beer and offering me free lunch at her restaurant. Unfortunately we didn’t wake up early enough to get the free meal, but also in Annie fashion I gave her our web address. Maybe she’ll find us on the interweb.  Then on the way to the car Aaron bought a performance from a struggling musician with a piece of pepperoni pizza. He wasn’t that good but it was just one of those moments. Life was among us.

Then the next day Aaron took us to this amazing river where Steve and I got into a kayak being tugboated behind Aaron. It ruled. The other dudes rented a canoe and we all went out to find you a place in the water. We quickly found one and Aaron said some nice words. Then he quipped that it probably was not the best place since he wants you to stay in Austin with him and you’ll be in the Gulf of Mexico by the weekend. Bon voyage. At least I got you to the Atlantic. Pacific is my next goal.

We left Aaron today and drove to meet Steves mom in San Antonio for lunch on the riverwalk. The town is rather quaint but seemed fun from my 3 hr impression today. We ate barbeque. Joel and I conserved by splitting the briskett rib and sausage combo. Annie, there’s something about this state that makes you want to eat massive amounts of meat smothered in barbeque sauce and drink beer with every meal. I also said who cares to my cuisine conservatism and ate baked beans, coke slaw, and potato salad that wasn’t Moms. Not even you would do that.

And now we are driving. We are headed to phoenix to go visit Brit and maybe Brian and check out this dry heat everyone is talking about. You should see this terrain. We have been driving for 6 hours and have gone from the flat urban centers to hills full of juniper and buch grass to plateaued rock formations and even larger hills to now a desert. We drove through a glorious storm with lightning strikes every minute and hail. The sunset lasted forever and there was a rainbow behind it. Never seen anything like it.

But I have a feeling we ain’t seen nothing yet.

I got to go. It’s just me and Steve awake. We are listening to Dr Manhattan driving through the desert on a late spring night.

Wish you were here.

Love
Stevie

P.S. I ate Sonic Tator tots in a town called Ozona.  It ruled.

Source Blog: atriptosaygoodbye.com

First of all, thank you so much for coming to my lil website and reading our blogs and showing interest in our journey to see the country and sprinkle Annie along the way.

I’ll be writing here daily probably. I’ve taking a liking to blogging lately and I’d rather tell you about my trip in mass than one at a time over text. Plus I’m not one for doing any physical work or lifting more than a few fingers at a time. So here I am, in the car on my iPhone to keep you all informed. Plus I need your money in the form of web hits for advertising Lets be real, even my vacations are entrepreneurial.

At the time of finishing this I’ll be in the car on the way to Oklahoma to stay with Bills family in Broken Arrow. I can’t believe I am already gone. I’ve been talking about this trip and scheming since late January. Time really flies. I’ve been so nervous with anticipation for this journey. Will I like travelling? Will I enjoy sleeping in strangers beds, on floors, and couches. Will I tolerate the major change in lifestyle? For an entire month? I must be crazy. But, I am cautiously hopeful that it will be the time of my life.

A few pros I have going for me. I’m with four extremely easy going people. I’ve never heard Steve complain even once in his life. As long as Joel gets his lunesta and nap he doesn’t care what we do. Bill, the professional wanderer of our crew, is happy as long as we are being safe and prudent. Hugo. Well Hugo just is along for the ride and we’ll get smiles laughter and emphatic “that’s awesome’s” all day no matter the condition. He’s our cheerleader.

So since I have been the architect behind almost everything, they kind of look towards me to find out what we are doing next. I’m the navigator. That sense of control and empowerment and trust gives comfort to someone like me. Someone who had never even thought about doing anything remotely adventurous before in his life.

So I picked a great crew for my journey. I hope they enjoy it as much as I think I will.

I don’t know if you all know but we are filming hundreds of hours of footage of our trip. At first that was really really stressful. It was a large and expensive undertaking for 3 dudes who have never used camcorder or edited film and two other dudes who can’t physically turn them on. So far it hasn’t been relaxing to have them with us all the time and charge the batteries and upload the content to our storage drive. It is a pain in my ass since I’m the one with the knowledge and vision for the footage. But I spent $3,000 so I’m not turning back. Plus it was annies dream to do this this summer. I’m not as smart as her when it comes to such a project and the camera doesn’t love me like it loved her. But I’ll so my best. I won’t let her down.

It was her dream to put together a pilot for a tv show or movie about adults with disabilities living a life that isn’t in fear and isn’t in shame and shouldn’t be pitied. She believed the disability rights movement would have more success if our people were depicted in media as social, funny, sexual intelligent human beings that despite our challenges we don’t want pity and want equal opportunities in life and do what we can to achieve. A non-pity based reality portrayal would break down barriers in society that deter us from meeting our full potential as individuals.  Whereas watching little people run around on farms in a made for tv larger than life exagerration doesn’t really help me break down the barriers to get a job or have successful relationships with my peers. It only enhances the fascination with the “supercrip” and holds the rest of us regular crips down. I am not a supercrip and I am not a poster child. Leave that nonsense to Christopher Reeves and Matty. Ooh, bad joke. R.I.P.

All that being said. I have some amazing footage, including interviews with some awesome gimpies in Chicago and champaign as well as a drunkfest at the anheuser busch brewery tour.  It’s only been 4 days but I am hopeful so far that I am doing a good job at meeting one of our goals.

So what have we done so far. Well I organized two impromptu ash sprinkling ceremonies for Annie for Friday and Saturday, one in Chicago and one in Champaign. We are bringing her with us everywhere we go in her old make-up bag and in a McCormick Basil dispenser with sprinkle top. It also has a custom label made by my mother. Included in our Annie Kit are two backup containers in case we have a sprinkling mishap.  Well, only one backup now – i gave one to her best friend Angeline who will have her buried with a priest later this week.  That’s about the most wholesome thing i’ve contributed to so far on this journey.  Though, I’m quite sure Annie would love the lighthearted approach we are taking to a very serious matter. That was in her way of life, and I know that if the tables were turned she would carry me around in a 2-liter of mountain dew or possibly something much more perverse and unexpected. Haha. I’m laughing cause I just asked one of the dudes where she was. It has been the most common joke so far, “where did we put Annie?” and although it is funny in a Kurt Vonnegut kind of way, leaving her behind is on our list of things not to do. We already lost all of our silverware, a bag of cheerios, and our regard for decency in public (reference coming soon).

In Chicago we gathered 30 of her friends and co-workers at Starbucks on Taylor St in her favorite neighborhood and home for two years. We sprinkled her in the bushes in front of the Joe DiMaggio statue. The great Yankee was our 4th cousin. Annie believed it was her fate to be in that area for a long time. A great little Italian paradise, our cousins statue next to the source of her favorite addiction, a grande vanilla latte with whole milk no whip cream. She went as “Annie D” (for delicious or DiMaggio), she owned those streets. Everyone knew her, from the shop owners who would swoon her with free foods to the old neighborhood boys who swore to protect her. She made friends with everyone and anyone – rich old Italians with mob money and local artists who don’t shave or shower.

Speaking of local artist, one such self-proclaimed local Picasso came up to me after the ceremony, said “hi I don’t know what you guys are doing but I like you. I am an artist and you remind me of the scientist Stephen Hawking. I want to give you this.”.  Then she gave me her piece of beauty that still had wet glue dripping all over and then she walked away. What a life. You see a cute cripple from across the way and you have the time and ability to whip up a masterpiece. And WTF mate, i am 10x the man Stephen Hawking is. Ha.  But it was so funny because this is the kind of life Annie would live – attracting strangers from all walks of life every single day.  How appropriate that this happened to me the day we first sprinkle her ashes.

Also. I guess Joe DiMaggio’s brother died  on the same day we sprinkled Annie onto Joe. Creepy. RIP cousin.

Then. We interviewed Janie, Annies roommate from when she lived there. Janie has cerebral palsy and is a masters student in the disabilities studies program. She let me cool off my sunburn from day 1 in the sun and let me pee in her hallway. Thanks girl. We chatted for two hours and discussed dating with disabilities. Whether she prefers dating people with or without disabilities, the great debate of our time. And devotees, men who have a fetish for girls in chairs. And annies expertise in scx toys. Greeat convo. For those of you that don’t know, annie was destined to be a specialist in disabilities and sexuality. For those of you who think maybe I should be more prude. Well well. Annie was right in her assertion that able-bodies disregard for us as sexual beings and societys unacceptance of us as potential mates is a major major contributor to depression among people with disabilities.  Janie also is an academic in the field.

Oooh Christine another one of annies old roommates cooked us like 100 banana muffins and her friend Alanna made us cookies. I think we’ve only spent $50 per person on food in 4 days and 2 tanks of gas. Thanks to everyone for the help.

Then we went to chanpaign.  Home sweet home, Beckwith Hall. I ate all my favorite foods and hung out with all my favorite people. It was so good. It really helped the transition into this trip to be so comfortable in the first few days.

The first night we just mingled with my peeps and waited for Hugo to finish his finals and get packed up.  I even got to sleep in my old room. Shannon probably doesn’t want to spoon me so I resorted to cuddling with Steve on an air mattress next to her.

The next day, Saturday, we went to get our tattoos. Annie always gave me so much crap for being a hold out on getting the “wheelchair heart tattoo”. I figured now is a better time than ever and I took the plunge and got my first ink. I also got Annie written below it in Braille. She had my name written in her chest in Braille. All her favorite dudes in the world always continued to be Steve. Plus, love is blind.

We got it from Lunchbox, a local artist nicknamed for his metal lunch box collection. Annie loved this dude and the other guys at the shop. She would stop by after class and bring them treats on occasion. Lunchbox was also responsible for her first tat, the wheelchair heart tattoo, and many of her others and the piercings. It was fitting for this trip I got it from him. My friends Amber, Kushal, Bill and Joel also got the heart inked on them.

It was a fun way to spend 3 hours. We talked some awesome Annie stories and had some rediculous convos.

Favorite quote attributed to Joel the tattoo artist (not our Joel): “everyone loves boobs, even people in wheelchairs”

Then after getting our tattoos we sprinkled Annie outside of Beckwith Hall and Hugo did the honors. Thanks to everyone for coming out.

The rest of the night was more casual convo and inteviews. And Jenna spooned me and fed me a well balanced breakfast of eggs and chicken wings before my adventure to the Dirty Dirty Stl.

Can’t wait til vegas where many of our Beckwith friends are flying to meet us.  Nothing like sitting in those aisle chairs! Why can’t they just let us bring our chairs on board!?!?

So then we went to saint louis to visit ji-hae and katie and see the arch. I’ve been here before. My only memory is Annies wheelchair tire popping from glass on the ground at the Arch grounds and having to look desperately for fix n flat to temporarily repair it. Then we all became very loopy from the intoxicating fumes.

Speaking of intoxication, we never made it to the arch because Hugo and I got completely hammered from free beer at the anheuser busch tour. Did I say free! Free!  They only allow each person 2 small beers each, but Hugo and I charmed them into 4 each over a two hour period. You have to picture this. A bunch of people being quiet and respectful and little kids drinking their complimentary pepsi. Then there’s me and Hugo. With our posse and over 20 empty glasses having a debate on whether men or women were better at showering us. Unfortunately for me I’m with 4 dudes in a van for a month.

Hahaha. To top it off the employee came and asked us if she could clear our empty glasses. I should have tipped her.

We are awful. Awfully awesome.

Then Hugo and I spent and hour in the bathroom singing filming and doing natures work

Then Katie bought me a stuffed Clydesdale. Haha.

I love life.

Needless to say we never made it to any other attractions. But our hosts were amazing. Katie made bill and I breakfast and gave us real beds and Ji-hae and her brother Sung-hoon were rediculously awesome great hosts, force feeding us food every half hour. Her brother decided he was going to buy us Chinese chicken wings for the car rides. It smells in here and Hugo stopped at a hill billy gas station to drop a bomb but it was well worth it.

Lol, Hugo and bill went into the womens washroom for an hour because the mens was too dirty. I went into a Murphys beer cup. Thanks Jenna for the gift. Joel threw it out though. I told him it was sterile and reusable. He didn’t care. Jerk.

And now at 655pm I’m in Oklahoma. And a home cooked meal is awaiting me in broken arrow outside of Tulsa.

I wish Annie was here.

Wait, she’s in my backpack

hello mr horsey nice to meet you.

Funny story. I signed up for Netflix, watched Shawshank Redemption for the first time (I know, I know, a little late to the game). Great movie. But much to my surprise and somewhat ironic if you read my last “note” on here, Pete Wentz isn’t as creative as once believed. Get Busy Living or Get Busy Dying – it’s only the most memorable quote in an American classic.

Ehh, whatever, I’m over it. I’m on to bigger and better things. I watched 63 episodes of “How I met your mother” in the course of four days, downloaded about 50 full length albums one day last week, and have 30 movies in my Netflix queue. Call the FBI, I’m a depressed pirate with a high speed internet connection.

Speaking of piracy – How about them Somalis? YEAHH!! Keeping the news interesting!! I love Barack, but do I really need to know so much about Portuguese water dogs??

Let’s move on, I feel like I have a lot to say today.

I apologize for keeping you out of the loop of my life. That goes for not only facebook notes, but text messages, calls, and emails. I’ve pretty much put life on pause for most of February, March, and April. If you didn’t put an effort in to stay in my life, in most cases you were just a name in my phone. Movies, music, tv — been spending a lot of time in my head and in my room. I was lost.

I’m still lost. I guess I’m just done pretending that I believe that I can do this easily and quickly. Done pretending that being an only child is okay with me, done convincing myself that its normal to have a spare wheelchair sitting in your house, done believing that one of those late night phone calls will be her to tell me how great her day was. A few weeks ago, I stopped hiding from people the truth – that I am confused and depressed, my thoughts are muddled, my opinions conflicting, my emotions exaggerated, and honestly that I have no clue who I am or what I’m supposed to do now.

Grief is definitely a process. I must be moving into the stage of acceptance but lingering are shades of anger and denial. I think its also interesting that only three months in, much of grief’s burden occurs in other facets of your life. It doesn’t hit you in Annie-related moments. No – Work, family, friends, eat, and sleep. That’s where it shows its ugly face.

I don’t really want to continue down this path anymore for this note. I wasn’t writing to tell you that I’m drowning. I wanted to tell you that there’s always a glimmer of light above from the bottom of the pool. If you keep your head up, be brave in a time of fear, and look for it, it’s there.

That’s what I keep telling myself. That’s what I’m trying to do. I’m so scared, I’m so down, but I’m so hopeful. So I have to be brave and keep working on the things and people that make me go, that make me smile, that remind me to breathe. Even if there is risk and danger. Even if I could lose again.

I’m done running.

3E LOVE

3E Love, LLC. is a company Annie and I founded in 2007 revolving around her “wheelchair heart logo”, or as we officially call it, the “International Symbol of Acceptance.” If Annie leaves a legacy, and I hope that she does, it will most likely have a lot to do with the symbol and 3E Love. The symbol started out as a tattoo on her right shoulder blade and then a t-shirt she designed for our dorm community. It’s now a tattoo on countless others and is highly recognizable by friends, family, and the local disability community.

But I’ve been spending some time preparing for hopefully what could be a big year for the company. It’s really important to me that it is successful. One, because it was Annie’s pride and joy, and by working tirelessly on it I could continue her legacy for her and maybe even have a new career for myself and my friends. In my dreams I see the traditional “handicapped sign” replaced by our symbol and me in an accessible fantasy land for an office with all of my friends from camp and college as employees. Ha

So I’ve been working on that. I think it is really important for the disability rights movement and the community that the educated youth living with disabilities in the real world have their voices heard. A grassroots social entrepreneurship company could be a great way to make a huge impact on society. That was Annie’s vision, I hope to carry it through for her.

I mean, we are America’s largest minority. But in 30 years little has improved. People are still being killed in group homes and hospitals due to negligent treatment. Some cities and towns are completely inaccessible. State programs developed to help us live independent lifestyles are run by uneducated people who don’t even care about the program. All the while it costs over $20,000 per year for someone like me to live on their own. On top of other expenses. Yet when you call you get treated like an infant, are hung up on, put on a waiting list for months, and I wouldn’t be surprised that while I am struggling to move out of my parents house they are stealing the programs’ funds with “ghost employees”. Children aren’t educated in schools about disabilities or our history and struggle, so when I go to public kids still laugh and stare. The ADA, our beacon of legislative hope, is constantly challenged by crazy right-wingers who believe it is too expensive to put us through school and make other public accommodations. And in some places it isn’t enforced at all.

Ok, I’ll get back on that soapbox another day. But Annie’s vision for progress was to embrace your disability, educate those around you, and empower one another….

Help me out. If you, your friends, or family don’t have a shirt yet, go to our online store and order one. I have a pre-sale set up so that you can get the standard tees in any size up until May 1st.

http://www.3elove.com/ – wear your heart on your sleeve.

ANNE HOPKINS FOUNDATION

Many of you know that my family established a non-profit corporation in Annie’s honor after her passing. I’m happy to announce that we have raised over $17,000 so far. This is quite amazing and inspiring considering that all that money was raised without any true fund raising efforts and without a bank account to deposit the money. Ha

Now that we have a bank account and everything is set up legitimately, I’ve been working hard to plan fundraisers and also start granting scholarships for next school year.

My first goal is to raise $70,000 by January 1, 2010. This will be enough funds to pay operating expenses such as a web site and to grant three $1,000 scholarships annually in Annie’s honor for the rest of eternity.

So, I’m working hard to develop online fund raising tools, apply for our 501c3 so we can accept corporate donations, and finally plan a ballroom event coined “Annie’s wedding” for October of 2009 if possible.

Thank you to all of those people who have already reached into your pocket to make this possible.

Read the corporate mission statement here:
http://docs.google.com/Doc?id=dhdrtswq_9ccsr3xhm

If you would like to make a donation, make checks payable and mail to:

Anne Hopkins Scholarship Fund, Inc.
PO Box 522
Batavia, IL 60510

A website should be up and running in a few weeks too! Thanks again to all those who have donated. It means a lot to my family and I that you are as interested in continuing her story through passion and altruism.

A TRIP TO SAY GOOD-BYE

Last, but not at all least. In about two weeks I’m getting in my 2006 Chrysler Town & Country, and I’m leaving. Gone. Goodbye Chicago land, hello America.

Before I go into details, here’s the background stories.

One, Annie was planning on going on an educational speaking / 3E Love tour with her roommate Steve and PA Joel this summer.

Two, my mountain man slash professional vagabond of a friend Bill and I have talked about a road trip for years.

Three, I have no idea who I am right now or what I want to do. One thing I do know, I have no motivation to hustle people to buy insurance or invest money at this juncture in my life.

Four, we have a box sitting in Annie’s room full of her ashes and I don’t know what you are supposed to do with those.

Five, I just paid off all of my debt and that just doesn’t feel right. I’m too young to be debt free.

So, I’m going. From May 8th to June 9th I will be on the greatest bro-venture ever conjured. After planning in my head and on paper since the end of January, this is all I know.

Bill, Joel, Steve, Hugo, and I are getting in my van and heading west to find treasure like the great frontiersmen of our past. Except we’ll be staying at Best Westerns and have A/C in our modern-day horse and carriage. The first three dudes are aforementioned, Hugo is my friend from camp who also has the most elite disability on earth, Spinal Muscular Atrophy. I’ve spent my whole life traveling in pairs of chairs. One is lonely, two is company, three’s a crowd. So I asked Hugo to join us and he squeeled for joy, both with his voice and wheels as I could hear him over the phone itching to roll around in excitement.

We don’t really have a budget, and we have no pre-arranged activities except a World Series of Poker Event in Vegas I am playing in and I have to be home for a friend’s wedding in June (ladies, I need still need a date, and I love to do the funky chicken).

We are also going to be filming the entire thing. Think about a cross between Little People Big World, Road Rules, and Man vs. Wild. That’s what we are going for on this trip and will hopefully have some good video to share. I will also be blogging away from hotel rooms, maybe even video blogging. Annie maxed out her credit cards a month before she died on a brand new Mac Airbook. I plan on putting it to good use before the collection agency that keeps calling gets a hold of me.

Lastly, we are going to spread her ashes all over the place. Maybe that will be an important part of my grieving process. Saying good-bye to her in all the places she’d have loved to gone this summer. She was known as Everywhere Annie, so I guess it’s fitting that we are taking her with us on this journey.

So, if I don’t see you before I return, I’ll see you in June!

Please, if you live anywhere on our path, please consider putting us up for a night. Could really use the help! Even if it is only 2 of us so we don’t have to get 2 hotel rooms.

Here is our expected stops:
Urbana-Champaign
St. Louis
Dallas
Austin
San Antonio
El Paso
Phoenix
Grand Canyon
San Diego
Los Angeles
Santa Barbara
San Fran / Bay Area
Yosemite
Vegas
Salt Lake City
Denver
Omaha

That’s about it for now, thanks for reading. When I get writing I can’t stop. But my one friend told me that “Stream of Consciousness” writing is all the rage now. Glad I’m finally trendy.

Scared to death of mountain lions,
Stevie

First of all, I’d like to thank Pete Wentz. I never thought that opening up my iTunes this evening would lead to a surge of inspiration and nostalgia this grand. But your song titles are fucking incredible (Sorry Mom, aunts, and uncles, and even clients, for swearing, its not my fault you signed up for Facebook; and it’s not my fault my limited profile doesn’t block you from reading my shit).

But seriously. “Champagne For My Real Friends, Real Pain For My Sham Friends”, “A Little Less Sixteen Candles, A Little More ‘Touch Me’”, “Don’t You Know Who I Think I Am”, “I’m Like A Lawyer With The Way I’m Always Trying To Get You Off”, “The Carpal Tunnel Of Love”, “Chicago is so Two Years Ago”, “You’re Crashing, But You’re No Wave”.

Magic.

Some of you may be laughing at me right now, thanking Pete Wentz and all. Before I dig deeper into my train of thought with 10 more pages, let’s have fun with this and respond to my note with your favorite Fall Out Boy lyric or song title. Come on! I’ve got 450 some friends on here. At least 300 of you are young enough to know that Take This To Your Grave could be the most influential album of our era, or could just be old farts who have Peter Pan Syndrome like me, or maybe you went through that phase where your quote driven AOL away message was the most important part of your day.

Comment away, for my entertainment, and for the sake of Annie’s probable hysteric laughter at my lame ass right this second. After all, she is everywhere.

Ok lets get back to why 90% of you are reading this. I promised over 1,500 people at this little event we had called Annie’s Wake last month that I would keep writing. Why do they call it a “Wake”. I don’t get that at all. She wasn’t awake, she wasn’t technically sleeping. I never read the Bible, does it have Christian roots? Someone educate me, I’m too busy listening to Fall Out Boy to google this.

I got side-tracked again.

Thank you Pete Wentz. Someone forward him this please. I know I have some readers who are little socialites with closets full of Decaydence hoodies.

He needs to know that even though his band’s latest album is on the list of greatest disappointments in my life, that if it weren’t for Fall Out Boy, I’m not sure that I’d be so okay with the fact that Annie was taken from me oh so rudely on January 20th. Yes, I literally watched her take her last breath, say her morbid last words, and I’ll never forget her final shade of blue and that stale smell.

I’m NOT okay with her death by any means. But it’s cool. Annie took me to a Fall Out Boy concert once and life is clear.

Let’s backtrack. I guess I’ll just tell you a little story about Stevie & Annie and then you’ll understand how Pete Wentz gets any credit at all.

The truth is we had a sibling relationship that was beyond normal. I’m 15 months older than her yet 9 out of 10 people surveyed in the latest polls believe us to be identical twins. I was the accident, she was the second lightning bolt that wasn’t supposed to strike again. If you want to discuss mortality, I was supposed to die a long time ago. In fact, my parents were told so. Annie walked on her own two feet for some time. I never did. But I was the protective big brother from the get go, carrying her around on the back of my sweet ride until she got her own set of wheels. We were a magnificent team, the dynamic duo as some newspaper proclaimed when I was 6 years old. We went around hustling people for money on behalf of the Muscular Dystrophy Association and were on our way to becoming the cutest poster children on earth. I was the brains, she was the braun. I was the beast, she was the beauty. I was the smartass wit, she was the smile. Left to watch the house? I’d answer the phone, she’d open the fridge and get us some grub! We were unstoppable. Somewhat opposite, but would work in perfect tandem with one another from a very early age. Brilliant codependency or a beautiful disaster?

Then we got fat. I’m not kidding. Really husky, like 110lbs for 4′5 frames. You don’t have to go too far back in the photo albums in my house to get a glimpse of the era of chunk.

Not only did we add some weight thanks to microwavable french fries and my mom’s amazing cooking, but we hit that big P word – Purgatory, or Puberty, whatever you want to call it.

The gender roles started becoming more apparent. Not even our awesomeness could stop proven sociological theories. I started playing video games, listening to really loud obnoxious music, watching sports. She loved shopping, dressing up, giggling about the cute boys. I thought all of her female friends had cooties, but secretly probably had the hots for all of them. She wrote in her diary about all of my friends, we’d steal that diary and make sure the whole world knew her little fantasy world. I could do algebra without picking up a pencil, she sucked at math and I’d let her know as I did her homework. She won talent show after talent show for her incredible voice, I wished she would just shut the hell up.

We hated each other. Despised one another. For a good 6-8 years I’d say, probably in the shape of a bell curve if the y-axis is hatred level and the x-axis is chronological scale of our lifetime. Roughly this lasted from sometime in middle school to early college, obviously with a few fights here and there outside of that bubble. We are siblings afterall. What we had before we got fat and had hormones was extremely abnormal. We are allowed to bite and pull hair, and tell mom and dad all the bad stuff the other did.

Looking back most recently, Annie would often joke that we didn’t hate each other, we were just struggling with each other’s greatness. I’m not going to disagree with her, but I’m also not going to toot my own horn right now. I’ll meet her somewhere in the middle and say that we were just trying to find our own way. It’s hard enough to find independence as a tween when you have a disability and can’t wipe your own ass. Try going on the school bus every single day with, eating every single meal with, sharing every single friend and social circle with, never getting a minute alone from, not experiencing anything in life without…… a shadow.

For the majority of our lives, we both lived side by side. Not by choice at all, but by codependency forced upon us by a situation not to our liking. And those years of hatred were just us realizing our grim struggle and wishing that we could fly away from one another. Ya know, normal sibling lives. Spend time on holidays, hang out at mom and dad’s for thanksgiving, fly out to California to see your new nephew. Ya know, movie-like shit.

This desire was so strong to be apart and try flying without our other half, that Annie highly considered going to Whitewater College up in Wisconsin instead of joining me at Illinois. In fact, I remember, and this could probably be the only thought that brings me to a tear as of late, I remember secretly wishing that she wouldn’t get into U of I. Our need to be apart was so strong that I for one time in my life wished harm onto her, and she was willing to sacrifice not coming here but going elsewhere for what would be the most important four years of her life.

The thing is, I don’t have many good memories of college from freshman year, but when she came my second year, even though we kept somewhat distant, everything felt normal again. Beckwith Hall, with its smelly hallways and interesting characters, was home.

The next year and a half, we eased back into our codependency and again became known as Stevie & Annie. For one year I existed as an individual. It sucked.

Then came Pete Wentz and Fall Out Boy. Yes, we are back!

See, all those years we hated one another, we still shared one commonality other than matching wheelchairs and -ie at the end of our names.

Music.

Melody! Rhythm! Harmony! Music was the heartbeat that kept us alive. Early on in life we both loved nothing more than sitting in the station wagon on the way up to Oshkosh bee-bopping at very young ages to Motown’s greatest hits. Going to weddings dancing in our chairs, going to our favorite pizza joint and playing the same song on the jukebox. Even during the fat dark ages, me blasting Slipknot throughout the house and her singing her best rendition of Natalie Imbruglia’s “Torn”.

But even music, we fought about. Or disagreed as to what was good and what was bad. In reality, I was probably just the elitist big brother who didn’t want his sister going to concerts with him. Concerts with my friends was one of my few excuses to get away from my little twin-like shadow.

Then in college, I believe it was the spring of 04, Junior Year for me, we went to see a sold-out Fall Out Boy show at the Canopy Club in Urbana. I didn’t really know anything about them. I still hadn’t gotten over the depressing sounds of Dashboard. Annie got us tickets, though, and was determined to take me to a show, and not the other way around. It wasn’t the first time she took initiative in our friendship, I’m sure, but it was the first time that I can remember her pushing my boundaries of comfort and me not giving into an excuse or criticize her in return. She took the reigns and I let her.

And it ruled. I’ll never forget sitting there 20 feet from the stage in the rowdiest environment I’ve ever been in at that point, Wentz flying from the speaker towers bass in hand into the crowd during “Saturday”. I didn’t know a single word but my mouth was wide open in awe of the energy the entire time. It was the perfect blend of all the crap I had been listening to for a few years prior.

It was heaven to a music fiend such as myself. Changed my mp3 collection forever and changed my life. Mark Rose of Spitalfield would probably argue that Annie and I went to a concert of theirs maybe a month earlier. But seriously, you never did folllow up Remember Right Now and you were never on TRL.

So Fall Out Boy changed my life. More importantly, Annie took me to a show that changed my life for the better. Annie changed my life. That’s a mathematical property. Transitive property, mmhmmmmm. I still got game.

Back to my gushy story. From that concert on, Annie and I did more and more together. We were no longer separate, we were equals, and slowly but surely I think we came closer to achieving that beautiful disaster of a symbiotic relationship we had when we were cute little tots.

Going to concerts together led to so much more. Eating every meal with one another. Again, me ordering the pizza, her picking it up and feeding me if necessary. Not a lot changed since the days of glory. We enjoyed having the same PAs, the same friends, partying with each other, and even sharing our deepest secrets, only years after doing anything to hide the simplest of flaws from the other.

Most everyone reading this has been our friends more recently, so I’m not going to spend anymore time explaining our closeness the last 5 years. Plus, I’m not going to lie, its 1 AM, I am a little choked up and I don’t want anyone thinking I am more of a sissy than they already do.

I guess I just wanted to thank Pete Wentz and Fall Out Boy for bringing us back together for five years of awesome.

And now that you’ve gotten through my abridged version of what went through my head tonight, it leads me perfectly into probably what my next note will be.

What’s Stevie going to do without Annie? I could easily just melt away and live off of the past. Fight off pneumonia until it consumes me one day. I could choose death.

But, I choose now to get busy living. Talk to you soon.

Thanks Pete, Hope this increases this months iTunes royalty check. Keep mentioning 2*Sweet in your blogs, mine’s hurtin.

Stevie

Inseparable lightning bolts in the same dark storm, lighting up the sky for a better tomorrow.