Congratulations!

Congratulations to Rayann Brioche winner of the Stacey P. Ahern award for Disability Advocacy at Middlesex Community College through the TRIO Program.

We are inspired by you and wish you the best!

One more post about my sister.

Once again thank you to regular readers for allowing this blog to occasionally turning into a memorial site for my sister and still returning day after day. The information below is from the Sarah Lawrence College website.

In Memoriam: Stacey Ahern '08

Thursday, April 10, 2008

Stacey Ahern, class of '08, died on March 20 in Bronxville at the age of 29. A memorial ceremony to celebrate her life will be held at the College April 30th.

Stacey entered Sarah Lawrence College through the Center for Continuing Education in fall 2005 and matriculated into the regular undergraduate program the following year. Stacey was passionate about language in all its forms. She wrote poetry and fiction, and recently completed her first novel. Works she was particularly fond of included those of Emily Dickinson and Kafka, Jane Eyre, and New Yorker cartoons. Her favorite songs came from the Grateful Dead and Ani DiFranco. On campus, Stacey was a member of the student group Beyond Compliance, and persistently advocated for the rights of people with disabilities to reach their full potential.

At the request of Stacey's family, the College has set up a scholarship fund in her memory. For information please call (914) 395 2525.

This is from the Sarah Lawrence College website. Please e-mail or comment if you want more information about the memorial service.

Post Script:

You know all this blogging about my sister and I think, given what this website is for, I should talk about her disability and the assistive technology she used. Stacey suffered an anoxic brain injury on April 1, 2000. She spent nine days in an unconscious coma and then several more months moving through the levels of the Los Amigos Coma Scale. She then spent many, many months in various hospitals and group living situations re-learning how to do everything from communicating to sitting up, to walking, to self-care. Surprisingly Stacey suffered no cognitive or behavior effects from the injury. Eight years after the injury, at the time of her death Stacey still had mild to moderate dysarthria and ataxia which caused fine motor disabilities (she could barely write by hand but could type slowly) and a sometimes awkward gait. She was also very easily fatigued.

From the time of her injury until the time of her death Stacey used a few different types of assistive technology. Before I list what she used I need to mention two things, 1) Stacey was very anti-devices during her rehabilitation; she wanted to be "normal", 2) Stacey later looked through an Enabling Devices catalog I had in my car and marveled at the items she could have used is she had been willing. She even asked me why I hadn't given her a voice output aid and was surprised when I told her that I had in the early days of her recovery and she flat out refused to even look at it.

Here are the devices Stacey did concede to use:

1. a Boardmaker created set of communication boards, these were text based and Stacey spelled her messages at first by pointing using a covered marker with an enlarged grip and later her finger (until she was able to speak clearly). (I am happy to email the boards she used upgraded to version 5 or 6 of Boardmaker.)
   
2. a low tech handle I made on her communication binder by punching two holes in the spine and tying on a handle made of shoe lace laced with Toobers and Zots (until she was ready to ditch the communication boards)
   
3. an Intellikeys Keyboard with the QWERTY overlay and keyguard (until she was ready to use a regular keyboard)
4. a custom built adapted remote control for her stereo (until she threw it out, sick of being different)
   
5. weighted utensils and covered cups with thin straws (until fine motor and swallowing issues resolved)
6. "Good Grips" utensils, especially the can opener
   
7. a laptop computer (this continued until her death as she never really learned to write well again, she used it for all of her college classes, all note taking and all correspondence)
   

Eulogy for Stacey Ahern

First a note to regular readers: thank you for your prayers and support during my sister's time in critical care and since her death a week ago. It is my hope that I am ready to return to intensive special needs focused blogging on Monday. However, in my sister's eulogy there is a message for the special needs community, as Stacey was a brain injury survivor and a disability activist. Also, from my site statistics I know many of Stacey's friends have found this site and I want to share this eulogy with everyone. Thank you all again.

Eulogy for Stacey Ahern by Kate Ahern, March 26, 2008

At just 29 years old it is hard to believe how many lives Stacey had touched but it is true. No matter who I speak with they seem to tell me of Stacey’s humor, her intelligence, her determination and her generosity. Of course sometimes they call it her attitude and her stubbornness, but they are the same thing. Sometimes Stacey touched lives one at a time and sometimes Stacey touched lives a roomful at a time, but she always made a difference.

Many of you remember that Stacey walked everywhere and that she was unafraid to engage in a conversation with anyone she met on the street, whether it was a small child or an elderly homeless man everyone was an equally worthy conversation partner for Stacey and if anyone one needed anything she would hand it over, no questions asked. Recently Stacey stopped and talked to a woman who was pan handling outside a grocery store. The woman said she needed diapers for her baby. Stacey went into the store and purchased diapers and then was chastised by the woman because the diapers weren’t good enough. Stacey didn’t care much because she knew if nothing else the baby had diapers and she got a good story out of it. That was the kind of person Stacey was, she lived on a very tight budget but wouldn’t think twice before buying diapers or anything else for a stranger.

Many times Stacey didn’t even know the lives she touched. She did a lot of public speaking both as part of her commitment to sobriety and as an activist in the disability rights movement. Friends of Bill W. from New Hampshire to New York, and perhaps beyond, have been inspired by Stacey’s story of recovery and she would want all of you to know that she passed away clean and sober, in fact almost eight years to the day of her sobriety date. One of my favorite stories, a story I make my father retell often, is of how he overheard one man telling another man about a courageous young woman with blond flowing hair speak at an AA meeting one night and how that young woman had touched him. The young woman was, of course, Stacey.

When speaking in the disability rights movement Stacey’s most frequent topic was maximizing potential of people with disabilities. I think it can be safely said that nobody had maximized their own potential like Stacey had following her brain injury. In fact, perhaps the most telling fact about Stacey is that after her brain injury, when the doctors said she would not speak again, her first words were, “thank you”. I’m not sure “thank you” would be my first words if someone else just shaved my legs, but that’s Stacey for you, full of gratitude, even for the little things. Of course her next word was “zipper” and I have no idea how to make that meaningful. Years later Stacey spoke to high school students about disability awareness and to people learning to work with children who have developmental disabilities about potential and independence; giving of herself, even when she was self conscious of her speech disorder which sometimes made her speech sound slurred or as if she had an accent.

During her speeches Stacey would talk of her seemingly endless occupational, physical and speech therapy sessions and the potential power of people in lives of individuals with disabilities to never give up and to insist on independence. Stacey had been told she would never walk, talk or use her hands. She ended up doing all three - her message in her speeches was clear and people heard it. As a special needs teacher I could always tell when someone working in my classroom had been to a session Stacey spoke at from a change in his or her approach the very next day. Stacey had that power - to give of herself through her words and make others want to do the same through their actions.

Even in her passing on Stacey gave of herself and touched people’s lives. I am sure most of you remember Stacey’s devastation at losing her hair during her brain injury in 2000 and her dedication in growing that long blond hair back. After she lost her hair we would all tell her that it was growing back and she would respond, at first by spelling on her communication board and later, once she learned to speak again, by curtly saying, “not fast enough!” In the months before her death Stacey had been talking about cutting her hair and donating it to Locks of Love. Stacey wanted to help a child whose hair was not going to be growing back “fast enough”. During one of the last meetings our family had with the wonderful staff of the critical care team at Lawrence Hospital in Bronxville, Stacey’s beloved boyfriend Gilbert suggested that we make sure that this wish of Stacey’s happened and we did, Stacey’s hair has been donated to Locks of Love.

Stacey was a young woman who experienced a lot of pain and difficulty in her short life, but in spite of that she never stopped caring about others and never stopped touching the lives of everyone around her. Perhaps if each of us here today can take this lesson Stacey gave us, to try to give back or at least to try to give a smile every day we can make the world a less painful place, a place full of the kind of love Stacey shared with us all.