25 September 2009

Bride won't show up at wedding, but she will be everywhere

By Burt Constable | Daily Herald Columnist

The banquet hall for Annie Hopkins' wedding reception is rented for Oct. 3. A jazz trio will set the mood for the elegant, reception dinner of steak, chicken and a vegetarian option. The wedding band rocks, and the army of guests is ready to cut loose after eating. And the open bar, don't forget the open bar. As an added bonus, Annie's 25th birthday is just three days later.

It promises to be like one of those other weddings where Annie had the time of her life. The Batavia woman always had great fun at weddings, right up until the day she died.

"Annie loved weddings so much, she wanted to have one instead of a funeral," explains her big brother, Stephen Hopkins, 26, who has orchestrated this wedding celebration for his sister, who suffered from spinal muscular atrophy and died Jan. 20 of complications during a medical treatment.

A wedding bash for a dead woman who wasn't even engaged is unusual.

"That's why I think out of the 400 people we thought might show up, we'll only have 250," says her brother, who goes by Stevie. "They just don't get it. That's fine. I'm down with being unique."

He gets that attitude from his little sis, says Stevie, who also shares the spinal muscular atrophy that put them both in wheelchairs.

"It doesn't stop us from doing everything we want to do," says Stevie, giving Annie credit for blazing that trail. "She was an awesome, awesome girl."

Living up to her brother's description of her as a "disability advocate and socialite," Annie had great hair, makeup and fashion sense. She sported eight or nine tattoos. And when doctors or nurses noted piercings such as the one in her nose, she sometimes flashed them a peek at two more piercings they might not have expected on someone in a wheelchair.

"Annie was a beautiful, vibrant woman with an unmatched sense of humor," says Katie Arnold, 23, who became best friends with her neighbor when they were little tykes. "She taught me so much about independence, acceptance of others, and always striving to do the best for yourself, your body, your friends, family and community."

With more than 2,000 people who attended her wake, Annie's friends can't fit into one column.

"Annie Hopkins was calculatedly reckless in how she chose to live, always pushing the boundaries of her disabilities," e-mails Aaron Mlot, 31, of Downers Grove, who became a friend after volunteering with the Muscular Dystrophy Association. "While this at times worried her family and friends, she never hesitated to test her limits, especially when it came to giving to others. Annie was everything a person hopes to be as a family, friend and community member. She was generous, courageous and empathetic, and she lived how people all wish to live. Annie embodied the very best spirit that humankind has to offer one another and the world."

The daughter of Stephen and Leslie Hopkins, Annie graduated from Batavia High School and, despite having lots and lots of fun with her brother and a host of friends in college, got a bachelor's degree in community health and a master's degree in disability studies and human development from the University of Illinois at Urbana-Champaign. She was a community-access consultant for the university's Disability Resource Center, a regular at the pride parade and other events supporting people with disabilities, was working on her doctoral degree and formed her own company called 3E Love, www.3elove.com, which stands for her call to "Embrace diversity. Educate your community. Empower each other. Love life."

Annie designed and trademarked the company logo of a wheelchair sitting on a heart, and had that image tattooed on her back.

"I got her wheelchair-heart symbol tattooed right after she got hers. She was SO much fun," e-mails 20-year-old Viki Peer of Chicago, who started as Annie's personal assistant and became a great friend.

"I'd say more than 150 people have that tattoo now," notes Stevie, who is one of them. Annie's Facebook writings and videos, such as the ones of her putting on makeup or spending several minutes zipping around in her wheelchair as she uses a slotted kitchen spoon to retrieve her dropped cell phone, are funny, touching and inspiring.

"In addition to grieving the loss of Annie these past few months, I am constantly reminding myself how amazing it is that I did have her in my life and I will always have her in my life," writes Christine Scully, 26, a friend, roommate and assistant for Annie. "Annie called herself 'Everywhere Annie,' and she really is everywhere, even in death."

Friends say Annie's spirit will be at the wedding reception, which is open to the public and doubles as a fundraiser for the Anne Hopkins Foundation, which awards scholarships to students working for people with disabilities. Visit the Web sites www.annehopkinsfoundation.org and www.annieswedding.org for more information.

"Annie didn't care that she couldn't walk. She was upset she couldn't dance," Stevie wrote in a blog on the day Annie died. "Here is to hoping she's dancing now."

Watch videos of Annie Hopkins at www.youtube.com/user/annemariehopkins

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