Remembering One Tough Cookie

I first met Joannie in June of 1992 while attending the Summer Session at Gallaudet University. I was heading for the Library with my girlfriend, Marianne Schneider, when Marianne started waving her arms and screaming. Marianne drove her electric scooter over to this tall woman who was also waving her arms and screaming. After they were done hugging each other, Marianne introduced me to her role model, Joan Emerick. Marianne and I were Social Work majors. Joannie had gotten her Bachelor of Arts in Social Work at Gally, gone on to get her MSW, and became a school social worker in upstate New York. In Washington, DC, for a conference, Joannie had come to the campus to visit her former professors and to see her protege Marianne.

The three of us drove to a nearby pizza restaurant, where we had dinner and talked. Mari and I were still learning the theory of Social Work, so Joannie filled us in on the realities: scarce resources, frustrations over bureaucracy, supervisors who didn't understand the needs of her deaf clients, all the issues our professors never told us in class. But Joannie loved being a social worker, and she loved her clients and was proud of the job she did. It was no wonder Mari chose her as a role model.

NF2 is a capricious disease. When I met Joannie, she was already profoundly deafened from surgery, but was otherwise the picture of health. Marianne and my "ALDA little-sister," Janet Traynor, had been physically disabled by life saving surgery. I thought Joannie was among the fortunate, but a couple of years later, she too had complications from further surgery. Though no longer able to work full time, she continued to work part time for a medical practice. Once a social worker, always a social worker, I suppose.

I next "bumped into" Joannie when I joined the SayWhatClub in October of 1995. Joannie was already a member of the only list at that time--SWCForum. To say she was outspoken and direct would be a major understatement. Joannie was one of the live wires who kept the list hopping.

Back then, the SayWhatClub was experiencing its early days on a listserv, thanks to the efforts of Alan Czarnek. There was only one live chat, and that was occurring on Wednesday evenings and only AOL members could participate, since the chat was hosted on AOL. Enter Joannie--ever the social worker--to advocate for the disenfranchised.

Joannie was an AOL subscriber at the time, but she brought up on the list that many Forum members did not use AOL and that it wasn't fair they should be excluded. Joannie then told Alan she had heard of something called IRC and she badgered Alan to figure it out and set something up so that everyone in SWC could chat live with each other.

That is how the Saturday afternoon IRC chat began. The Saturday afternoon chat (1:00 to 4:00 PM EST) was an instant hit. From that, a Tuesday evening chat branched off, followed by a Thursday evening chat. Today we have chat channels to meet every taste and need a SayWhatClub subscriber might want to participate in. And it all started with Joan Emerick considering the needs of others, not willing to accept the unfairness that she saw.

Joannie was a regular at the Saturday afternoon chat and a very typical young woman as well. One Saturday, she shared with us that she had met a guy online who lived not far from her. They had decided to meet and set up a date to have lunch at a restaurant. Joannie was very excited and did her best to describe to this man the facial paralysis and other disfigurements that her last brain stem surgery left her with. He had told her that physical appearances did not matter to him, but his facial expression when they did meet in person clearly showed that how he really felt and what he wanted to believe about himself did not coincide. Joannie did not see him again after that. We could tell Joannie was crying when she told us what happened that day, and we cried along with her.

I next saw Joannie at an ALDA convention in San Francisco in 1996. Joannie shared with me that she had NF2 tumors on her optic nerves and feared becoming blind on top of being deaf. She had stereostatic fractioned radiosurgery that fall and thankfully, she retained her vision and the tumors stopped growing.

In June of 1997, a group of SayWhatClub members in the Northeast met for a weekend at the Sheraton Meadowlands in New Jersey, for what turned out to be the first SWC minicon on the East coast. Joannie was there--pen and paper in hand--enjoying the camaraderie of friends and teaching "dirty" ASL signs to all who wanted to learn! <grin>

Later that Summer, Franziska Brachwitz, a Swiss astrophysicist who was a member of SWCForum and a regular at the Saturday afternoon chat was here in the U.S. for a scientific conference. Joannie and I met Ziska in New York city for a weekend of sightseeing and fun, visiting the Statue of Liberty, the Empire State building, and other attractions. Joannie relished the opportunity to show Ziska and me around New York city, which she considered her second home. We made quite a trio. Ziska is oral deaf and does not sign, though she does read lips in several languages. Joannie herself was a skilled lipreader and signer, but with her facial paralysis, there were no lip motions for Ziska to read. My lipreading skills are very poor, so we worked out a system that accommodated our individual needs. When Ziska spoke, Joannie signed what she said so I could follow. When Joannie spoke, she signed at the same time and I voiced what she signed so Ziska could lipread me.

In the Summer of 1999, Joannie again needed surgery on her brain stem. Though the surgery was successful, it left her quadriplegic. After a lengthy stay in a rehab hospital, Joannie found residence in an assisted living facility run by Catholic nuns in Binghamton, New York. She savored her independence and remained a fighter to the end.

Joannie loved the SayWhatClub and served as a volunteer to support this wonderful organization. She was among the original facilitators of the Wednesday evening chat, hosted on AOL and was a member of the Hospitality Committee up till the time she had her surgery in 1999. She volunteered to work again for the SayWhatClub a year or so later, but her diminished health would not permit it.

Early this year, Joannie discovered she had two more tumors growing on her brain stem, so she steeled herself for another risky, yet life saving surgery. She elected to travel to the House Ear Institute in California to have her surgery so she could receive an auditory brain stem implant (ABI) at the same time, in an attempt to regain some perception of sound after many years of silence.

ABIs provide considerably less sound perception than do cochlear implants, but they are the only option for someone whose hearing nerves have been surgically removed. Because of the dangers of brain stem surgery, ABI electrodes can only be placed when someone is having life saving surgery on their brain stem. Joannie understood the risks involved, but with the courage developed from years of struggling with a debilitating illness, she elected to have an ABI implanted and looked forward to regaining a limited amount of hearing.

Sadly, Joannie's surgery resulted in two blood clots lodging in her brain stem, causing a stroke and leaving her in a coma. She died a few days later, her struggle at last over. Those of us who knew and loved Joannie will miss her always. Joannie was a major league baseball fanatic and embodied what baseball great Casey Stengel once said when the Yankees were down several runs in the bottom of the ninth: "This is championship baseball and the game isn't over until the game is over!" That is the way Joannie lived, and that is the way we shall always remember her.

--- Mark Dessert