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.

So Annie was taken from us almost three weeks ago now and the postmortem work rush has finally slowed down for me and her loss is probably starting to sink in. I went to call her twice yesterday. Exciting news to tell her, I was planning a social gathering that she needed to be at and a cross-country trip for which I need input. I never used to plan parties. I don’t really like trips or the unexpected. At parties I don’t know what to talk about. On trips I can’t sleep in unfamiliar surroundings. But then again, three weeks ago I was a financial planner and now I am the CEO of my sister’s company, the head of a non-profit organization, and an only child. I also hated lawyers three weeks ago, now I need them more than ever.

So it goes.

Maybe I should have a lawyer draft a letter to the Chicago Tribune to force them to print a retraction. Do they print retractions for obituaries? Annie is still dead, they can’t retract that. But Joan Kates can retract her broken promise. I told her that I was extremely busy and that I’d only give her the story if she followed two rules: 1) Annie did not die from Spinal Muscular Atrophy, it doesn’t kill us, and 2) always put the person before the disability. She was so nice, too. And a fellow Sox fan even though she worked for the enemy. I thought we were friends. I guess not.

I wouldn’t have been upset about her lack of truth in journalism a few weeks ago. But Annie, oh my oh my, she would have written them a letter, rolled down to her office with her fiery service shih-tzu Newton by her side, and given Joan the what have you! Sorry Annie, we got bigger fish to fry.

Let’s talk about my inheritance really quick. She left me a cat, a dog, and a kid named Joel. All three took care of Annie, she took care of them. Now I get that pleasure.

The cat Mercyx. I hate, HATE, HATE, his name. We almost convinced her to change it to Barack a few months ago, but she didn’t want to confuse him. But I can hardly pronounce Mercyx! So I want to change it but that seems really wrong, no? Asides from the name, it was Annie’s favorite and might be mine as well. He is convinced he is a dog and has the most interesting personality for a cat.

Then, his best friend Newt. Newt is only a few months old, is a pure-bred white albino shih-tzu Annie drove all the way to an Iowa truck stop at 4am to retrieve. Annie thought she could turn him into a service animal and she tried so hard, carrying him on her back or footrest as early as 6 weeks old. She took him to work, parties, grocery shopping, and even into fine dining restaurants. He was much the Paris Hilton dog, now he is a spoiled brat poopin and pukin everywhere. Hopefully he’ll come around, hopefully he will stop making love to the cat. And most importantly he won’t have to go to emergency vet for eating kitty litter for a 3rd time!

And then there’s Joel, my newly inherited PA. Takes me to the bathroom, buys me tator tots, answers my phones and responds to my emails when things are busy. He is still in training but has a lot of potential. Joel fancies himself some sort of cook so I might lose him to culinary school this fall. If so, please start preparing your applications early.

It’s been a much easier transition from “Stevie & Annie” to just “Stevie” than most assume. Yeh, there’s never been a Stevie without an Annie, and it makes absolutely no sense. I’m not sure I’ll ever grasp it or come to terms with it. Yes I am going through the steps of grieving and I don’t need any books. I’ll be stuck on anger for a quite a long time.

But it’s okay, I am excited for change. Positive change that happens when good people come together.

When I get angry, I get pumped. Insanely ambitious and entrepreneurial. Ready to conquer the world. This one time at college I get peeved and attempted a coup of our dorm administration. This is going to be 100x more reckless. My sister was the same way. In fact, her directive she wrote in the hospital in case she died — had nothing to do with her things or her money. It was a list of things for me to do and a list of people to go after.

I’m not kidding. I’ll scan it when it’s appropriate.

So I’m going to need your help. They messed with the wrong gimp.
More information soon. I have to cut this short. My mom’s birthday is this weekend and must shop, and I have an interpretive dance presentation to attend tonight at Diamonds Gentleman’s Club.

So long,
Stevie

Oh, and PS. Thank you to my immediate and extended family for taking care of the houses and office. For cooking and cleaning. For being my mom’s shoulder and my dad’s kleenex while I was preparing for war. Thank you to my friends for taking a week off work to force feed me when I couldn’t eat. For answering my phone when I was sick and tired of answering the same questions. For taking me to the doctor to get my pee tested so I can get back on the juice and feed myself again. Thank you to the almost 2,000 people who showed up at the wake, even if you never got inside the door. Thank you to Annie’s friends I’d never met who I now call my friends. Thank you to the girl who spooned me every night to make me forget that I am alone but not lonely. Thank you to NeverShoutNever! for being a 17-year old badass and providing shitty pop music for my teen craving. Thank you to Red Lobster for making me so happy but oh so sick. Thank you to Outback Steakhouse for much the same. Thank you GNC MegaMan and MRI Creatine for giving me the strength to type this.

Thank you to the over 100 donors who have already collectively donated $15,000 to her foundation in only 3 weeks!

Thank you Annie for dying for what you believe in and giving others something to live and fight for.

It is with the heaviest of hearts that I have to write this on my sister’s behalf. Annie passed away this afternoon, the 20th, around 3pm, after a 14-day fight at Northwestern Memorial Hospital in Chicago. In her last moments, my mother and I were at her side before the 40 some doctors attempted to keep her with us. According to them, she was not in any pain once the letting go process began, and even though they did everything in their power technologically and within their resources, she didn’t feel a thing.

See, I’m not the best writer. I don’t do it with the spunk or the absolute charm that my sister had. When she wrote these notes she made it count. I’ve got to make this count. She deserves for this to count. So this is going to be long, so bear with me. Writing it is as much for me as reading it is for you.

This is so important because Annie is an icon, a role model, a friend, and a dearly loved one. Everyone can say this about someone they have lost, but I say it knowing that there was no one like her. She was everywhere – “Everywhere Annie” as she calls herself. The time we all had with her was short, but great. She certainly is everywhere; I only have to ask one of 100 friends to show me a tattoo that she inspired them to get.

It is the human curiosity to want to know what the heck went down in the last 24 hours, few days, few weeks, and even a few months. So although I can’t change anything, and even though we sat next to her for three hours waiting for her to wake up after she had passed, the fact is Annie was quite sick for the last few months. You may wonder why am going through all of this detail, but Annie would’ve wanted me to for many reasons: 1) She would want you to know that no matter your disability, or condition, it is important to preserve life and fight. Life is worth every struggle and anyone can accomplish what they put their mind to. Our disabilities do not end our lives; they make us stronger for the cause. 2) She was very very upset with the hospital the entire time, and from her previous visits. Their treatment of her as a patient was questionable and the quality of care contributed to the end result, in my opinion. It is your and your family’s right to ask, prod, and annoy the hell out of nurses and doctors if they aren’t doing their job. Thus, she would want you to learn from this. She fought in this spirit every step of the way. 3) As a disability advocate and socialite, she often discussed medical stuff openly to share and learn. This world is always surprising and some of the stuff we go through cannot be found in medical journals.

You may have known that she was dealing with an extremely high heart rate for quite some time, and had several hospital visits since October to try and figure the situation out. People with neuro-muscular conditions often have an abnormally high heart rate in the first place, but hers was an exception to the rule. It affected her life in many ways, and most importantly to this occasion, her ability to eat and sleep. Her primary doctors at RIC decided about two weeks ago that it was time to install a G-Tube for direct feeding through the stomach. This is normally a simple procedure without many risks, but due to her weakened state and abnormal anatomy, it was much more difficult than any other case these particular radiologists and GI doctors had encountered. After delaying it and pressure from her doctors to have the procedure, they did it. It was not installed perfectly; it came loose and slowly leaked fluids and acid into her body. Of course, we didn’t find this out until almost a week later because they had her in an unmonitored VIP room with a patient to nurse ratio of 7:1. This is in addition to their 24hr wait for almost all necessary exams and procedures. Sure she saw 20 doctors under the age of thirty who just saw her as a guinea pig but wouldn’t it make a lot of sense to find out if a procedure worked right before it was too late? Try three days, an entire weekend of no follow-up until the stomach was already compromised. After that was discovered five days later she had to have drainage pipes to rid of the infection in her abdominal cavity. Immediately when we returned to her room, there were three surgeons waiting to whisk her away, open her up, fix anything they could find and get it right. This was a major surgery that we weren’t sure she would make it out of but after a day she was breathing on her own and doing seemingly okay considering. But then last night, she felt nauseous, paged the nurses, and by the time they responded (a long time) she aspirated on her vomit, and then from there it was pretty obvious it was going to be a very tough battle. The doctors that were with her the last few days were very good and helpful, and even with all of my qualms and doubts and anger, I believe them when they tell me they did their best and that she did not suffer. No doctor is a God, and the unexpected always happens, but without our input, our resiliency, and our insistence on getting the best, none of us with life-threatening conditions would make it as far as we have.

Aside from all that, some of my fondest memories of her will be from this hospital stay. Her interaction with family, friends, and doctors was often vintage Annie. She was pretty cheerful, making the most ridiculous requests from the most far out restaurants (last night even), theorizing about the penis size of male nurses depending on what floor they worked (two nights ago), feverishly arguing with doctors over what types of feminine products were allowed in the ICU, and even flashing the doctors and nurses as she saw fit. As many of you know, she had recently gotten both of her little ladies pierced. On Thursday, when she had to have the major operation, the doctors and nurses were very concerned about the various pieces of metal in her face. So after she told them that she didn’t care that they remove her piercings, she pulled her shirt down and said, “how about these, Doc?” The 50yr old surgeon from Jordan was taken aback by this bold action, did some personal investigation into the situation, and then they negotiated a deal that he would either tape all of her piercings or pay $40 per piece. Although different, this friendly interaction led to a short friendship and even though he had no reason to, he raced to her room immediately upon hearing of her dire state in order to assist in any way possible. Here is a stomach surgeon who made such a connection with my sister in 10 minutes before surgery that he wanted to be in the room with us and with her in order to help in any way he could even though his specialty was not needed. That’s Annie, capturing people’s attention and hearts in a matter of minutes.

People liked her not only for her naturally amazing qualities, but also for the work that she did for others. The reason she wanted to get the G-Tube, even though she was afraid, it was so that she could get back to school, back to work, and change the world. She had big plans for this year, including beginning her PhD coursework in Community Health, suing the hell out of the state of Illinois for all of the misery that they put her through over P.A. hours, helping me write a disability education model and marketing it to school districts, writing a book, going on Oprah, and then going on a national ass-kicking tour.

Three months ago she met a homeless man on the corner of Dearborn and something, wherever that Starbucks is in the Gold Coast. He was a wheelchair user, double amputee, African American who had been begging people for $20 every day for 6 yrs to pay for a room at Cabrini Green. She walked (rolled) by him and said something along the lines of “I’m an advocate for people with disabilities and I’m gonna get you off the street.” Within one week, she had him admitted to a hospital and had the government paying for all of the medical care that he needed so badly. After he was released, she had a temporary home setup for him at her friend’s house. A few weeks later he had a permanent home. I thought she was crazy and I still do, but that was Annie. When she had a mission to help someone, she made it happen.

I don’t know a lot about what she did at work, but I do know she had about every disability agency in Chicago fighting for her services. I know that one project that she was working on was getting a 13yr old boy from Africa with SMA II health insurance and a new wheelchair. She is still helping him today because I will be tracking him down and give him her’s. I know that she would want that for sure.

She told my mom and me at the very beginning of this stay that she needed to get out soon because she was the happiest that she had ever been with her life, given her new career and progress with independent living.

Annie was something special alright, and I’m sure over the next few days we will have some crazy stories to tell one another, some laughs, and some tears. I don’t have to repeat how much of an inspiration she was and will be to many people, with and without disabilities. As her brother and best friend I will do everything in my power to carry on her inspiration and finish some of the work she started in the disability rights community. We already had big plans, but when the dust settles I think I’ll make them bigger.

Thank you all for your phone calls, text messages, and online words of compassion. Most of you have asked me if there was anything that you could do and I can honestly say that my family and I will be fine. We weren’t prepared for it to happen like this, but Annie and I, with our parents, have always talked about the possibility of an early exit. Sure often in jest, but our openness and closeness will help us through this time. So, the answer to your question is thank you and thank you, thank you for loving her, thank you for anything you ever did to make her smile. In fact, thank you for anything you might have ever done to make her mad, she loved it. You’ve already done anything we could have asked you for. Trust me when I say, she loves you all.

If you insist on helping, whether you are a friend, co-worker, or someone she met once, write her a message telling her how she inspired you and then share it with a friend. Then, depending on a few things, there might be a huge celebration later this year, that will not only be a great time in the memory of Annie and also to found a scholarship fund in her name; but it is exactly what she wanted. Food, dancing, and debauchery.

So as Annie always says, “Keep on keeping on, fight back, and live for the moment” and she was always happy, even creepily satisfied with the thought that she could die young, as long as she lived forever.

Annie didn’t care that she couldn’t walk, she was upset that she couldn’t dance. Here is to hoping she’s dancing now.

Yes we can,
Stevie

Services and other arrangements details to follow tomorrow. Please, in lieu of flowers or cards, save up a few dollars for our future scholarship in her honor.