Disease, Community & Adventure

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.

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.

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.

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.

photo credit: Woody Barr

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.