A Couple nights ago I was informed that a friend of mine from Chicago passed away. I didn't know her as well as alot of her friends, but honestly every time we played Chicago I think, no I know, that everyone in the band looked forward to seeing Annie. It's an example of a truly great person, because even thought we would see her only a couple times a year, she always left an incredible impression on us and she is someone that even though I've known her for a brief time and spent so little time with her, it will be cherished. This is a letter her brother Stevie wrote. It's sad, but a good way to put things in perspective. Between Annie and the passing of my uncle earlier this month, it's made me contemplate my life alot. I want to make sure that I do exactly what I want with my life, and also make sure that I stop putting up with some of the shit that I put up with. Life is way too short not to be happy and do what you want.
Yesterday I was informed my friend, Annie, passed away. It would be greatly appreciated if you could take some of your time to read the notes that her brother has posted about her and donate to the scholarship fund that is currently being organized. Saying Annie was an amazing person is an understatement and I will let the attached notes speak for themselves.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,StevieServices 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. Smiling until the end....
