Book Excerpts

My illness manifested itself first in my speech; I was no longer coherent.
I’d lost the ability to speak in full sentences. My parents say they knew
something was awry when I spoke to them on the phone in garbled
sentences. They had phoned me for Christmas (I was in West Virginia at
the time with friends); if it had not been a holiday with such meaning, they
might not have called and realized; I would have been left undiagnosed
longer. It’s ironic that at Christmas, when we celebrate a birth, I was so
close to death. In some sense, and especially to my mother, that was my
birth, and the birth of great things to come.

From JoAnn's story p14

I was horrified when I awoke from the coma and saw my long red hair
had been cut severely short. It’s amazing how a little thing like that can
mean so much. It is really very minor, yet it had a profound impact on me
and my recovery. My hair before my illness was long; during my comatose
state, the decision was made to cut it. My mom says they did it for easier
care; intellectually that makes sense and I can understand that. But that
hair was mine; I had worked, waited a long time for that hair to grow that

From JoAnn's story p20

In March of 2003, she had more trouble. She had more pain in her muscles
when riding a bicycle or roller-blading. Her tolerance for Tae Kwon Do
faded. She no longer desired to swim or play outside. We often found
her lying on the sofa. Sometimes she didn’t have the energy to answer
the telephone or the door. Worst of all, she stopped eating. After they
ran several tests, all of which were not conclusive, and over a period of
months, our pediatricians still were baffled with her symptomology and
insisted nothing was wrong. In early May, Larissa weighed 112. When she
lost five more pounds by June 7, we all said how great she looked and it
had to be because she was cutting back. When she continued to lose and
complained it was too hard to sit and eat, we knew something had to be
wrong despite the pediatricians.

From Larissa's Story p40
 

Questions, thoughts?

Contact the author jtaylor@onlypossibleoutcome.com