Friday, April 25, 2008

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

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)

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