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Transverse Myelitis Association
Volume 5 Issue 1
December 2002
Page 15
The TMA Children’s and Family Workshop
The Workshop: A Teen’s Perspective
Eve Hampton
This past July I was privileged to attend The Transverse Myelitis Association’s
first Children’s and Family Workshop. This opportunity allowed for
parents, children and young adults living with Transverse Myelitis to learn
more about many issues ranging from medical, to educational, to emotional.
During the program young children were able to listen to stories and participate
in arts and crafts. However, the part of the workshop that impacted me personally
the most was the chance to meet other teenagers and young adults with similar
experiences.
Through discussions and activities we learned how each of our experiences
with Transverse Myelitis was different, as well as the similarities we shared.
Despite the fact that TM had impacted each of us differently we all shared
a common bond. The idea that I was not the only one going through this
reassured me. Additionally, as one of the teenagers with TM, it gave
me a chance to see the effect the disease and its aftermath have on siblings.
The workshop allowed the parents to attend presentations by expert physicians,
educators, and adults who had contracted TM as children. Young children
went to a science museum and to the Columbus Zoo, listened to stories, watched
movies, and enjoyed arts and crafts while the presentations were in session.
The teenagers, including me, spent the days enjoying sailing, kayaking, swimming,
and other activities while getting to know each other. In defiance
of the lack of wind, we were able to sail and I can say without hesitation
that it was my favorite recreational activity. The feeling I had while
being on the water, away from my wheelchair and without limitations, was
incomparable.
Although the activities we participated in gave us a chance to have fun while
learning about one another, the discussion amongst the teens left the most
lasting impression on me. Those of us with TM were able to share our
adventures in the world of paralysis, including how we felt initially and
how our feelings have changed since. For me, as a teenager with TM
with a teenage brother who has had to adjust, it was great to hear stories
from siblings. Their words changed the way I felt. I had no idea
how much of an impact TM could have on a brother’s or sister’s life.
Looking back on my own experience, I can see how much time and attention
was devoted to me, especially during my initial hospital stay. I can
only imagine what my brother was going through. He must have felt so
lost amongst the confusion.
I hope that I will have a chance to see the people who changed my life at
the next Transverse Myelitis Association’s Children’s and Family Workshop.
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