by Jean Walsh
If there are two things I know well they are adventure and
Friedreich’s ataxia (FA). I worked for Project Adventure for about 15 years and
I have FA. I was diagnosed with FA about 30 years ago. Do I know all there is
to know about either? Not by a long shot, but I am a veteran of both. On a
sunny, but cool, day in April a group of 25 of us, some with FA and some of our
able-bodied loved ones, had an adventure experience at Moraine Farm. I knew it
would be good – that is why I organized it. I didn’t know it would be great.
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| photo credit: Woody Barr |
Before I tell you how it was great, let me tell you a little
about FA. FA is a genetic disorder that impairs multiple systems. Its typical
onset is in early adolescence. It is first noticed as poor balance and
coordination. I used to ride horses. I began at age six. So how could it be
that at sixteen, keeping my head up and shoulders back, something so innate,
began to be something I had to really concentrate on to make happen? That is
just the beginning. FA is degenerative. It gets worse and worse. If you’re
lucky, it gets worse slowly. This is true for me. I am not lucky to have FA,
obviously. I am lucky that the progression is slow and I am not experiencing some
of the symptoms my younger friends with FA are. If you know me, you know that I
used to walk and now I use a manual wheelchair. I have had more people ask me
if I am drunk as I slur my speech more than I choose to remember, but I can
still be understood. I could chronicle a lot more, but I am sure you get it.
What people who know me may not know is that FA is far more than a problem with
balance, coordination and speech. It causes: diabetes; deafness; blindness and scoliosis
so that severe steel rods need to be surgically implanted to prevent the
impairment of vital organs. Finally, people with FA often die of heart disease.
There is no treatment. There is no cure.
I am a late comer to what people with FA and their loved
ones call FAmily. Once I did become active in the FAmily, I was welcome with
open arms and felt immediately at home. But I have to admit that the little
cynical voice in my head whispered: “FAmily, really?” I think that cynical little voice has not been in my way as I’ve met
my new friends. I know that cynical
voice didn’t grow out of anything my new friends did. It was there. I am
working on losing it. After our adventure experience I say: “ FAmily, true
that!”
Our experience was masterfully led (as I expected) by Bill
Cuff, Tim Churchard, Nate Folan and my brother-in-law Yew Cheong Tham. One of
our first initiatives was Star Wars or Mergers. I zipped my lips as the
familiar rope circles were laid on the lawn. As Tim sent us on to our first
round, people started applying what I have typically seen as the solution right
away. I found this pretty amazing, because, having witnessed this initiative a
lot, a group of 25 taking up to and over 45 minutes to come to a solution for the
diminishing resources of Star Wars while following the rules seems typical. Maybe
people with diminished physical resources intuitively think outside the box for
how to accomplish things physically because we are always solving problems of
that nature? I don’t know. It was cool to witness though. Couldn’t help but
feel proud of my FAmily.
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| photo credit: Woody Barr |
Another thing that happened right out of the box was as we made
our switches and our resources diminished, it wasn’t each person to his or
herself ensuring his or her own access to a circle. (This, in my experience, is
typically a race for the remaining circles. I have often seen facilitators
limit participant speed so collisions and bodily injury don’t happen.) We came
together as a team figuring out how everyone could best accomplish the task. It
definitely was not each person for his or her self or, even, subgroups (like
some of the nuclear families that were there) working within their subgroup to
make sure their own were taken care of. There was a palpable sense of doing it
together. FAmily.
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| photo credit: Woody Barr |
I know this is true for me. I am a capable person. I usually
know what I want to do and how I want to do it. So I really hate it when
someone grabs my wheelchair and takes me somewhere without asking me first.
This happens a lot. I am not a baby in a carriage. I am a grown #$% woman. I
don’t know that every person with FA there that day hates this like I do. I do
know I didn’t see it happening. I saw communication even within the urgency of
getting a circle. Communication. Respect. FAmily.
As I said earlier, FA causes people with it to slur their
words and have great difficulty speaking. One of my friends there that day has
a problem with this and works hard with a speech therapist to lessen his
impairment to communication. So, as Bill led us into Zoom with its dependence
on verbal communication, I was worried for him. (I know, I know, he is a grown
#$% man. I need to give him the same respect I ask for. I know he is capable.)
I did see people asking him what he wanted to say about his picture/piece of
information and saying it more loudly than he is able. I didn’t see anyone
looking at his picture and taking over for him. He was trusted to share what he
needed to and ask for the help he needed. Trust. FAmily.
At the end of the day, we moved on the high elements.
Watching everyone participate was such a high for me. Because PA made a video
of one of our group doing the Swing Shot, I get to re-live the experience
whenever I need a lift, http://youtu.be/75gWoZ1oap8.
Check it out!! Two members of our group on the high elements stood out for me
in particular, but really all of us were amazing. One participant who is an
adolescent as well as a fairly new diagnosis is very shy. I have known her for
a couple of years and haven’t really talked to her. (Not that I didn’t want to.
I have been trying to give her space from my more advanced FA self. I wanted to
talk to her when she was ready.) First of all, she started opening up even
before the high elements. But to see her grin as she did the Swing Shot was yet
another amazing moment. Nate made everyone doing the Swing Shot feel physically
and emotionally safe in his calm matter-of-fact way. Some of us remained at the
Swing Shot while another group went to the Flying Squirrel. A friend of mine
who is a tough fighter against some of the more serious FA symptoms did the
Flying Squirrel. I don’t know how Yew Cheong did it, but he managed to make my
friend and his very cautious mom feel safe. I didn’t see it, but I did see
pictures of his ear-to-ear smile (thanks Woody Barr). Even more precious to me,
he told me that he loved it. Finally it
was chilly up there on the Challenge Course. Because people were starting to
get uncomfortable, we ended before some of the able-bodied participants who
wanted to were able to do the Swing Shot. No one complained. Everyone was just
genuinely happy to have played a role in helping those of us with FA
participate. Graciousness. Kindness. Joy. FAmily.
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| photo credit: Woody Barr |
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| photo credit: Woody Barr |
I could really go on about our amazing community/FAmily and
how that day allowed me to truly experience it. My key take away is that while
I am surely unlucky to have FA, I am surely lucky to have these people in my
life. While FA needs to go away (the sooner the better!), our FAmily has
created a community a million times more powerful than FA.
Find out more about Friedreich’s Ataxia and, if you like,
donate to help us end it at the Friedreich’s Ataxia Research Alliance’s (FARA)
website, www.curefa.org.
