all you have to decide is what to do with the time that is given to you

So I said that there was one trip that I was still planning on writing about from this summer, and that trip was our 5-day Ruby Horsethief/Westwater trip with the folks from FARA.  FARA stands for Friedrich’s Ataxia Research Alliance, and this was their 4th year on the river with Splore.  But their background with Splore runs much deeper than that.

The Great Mr. Aaron Kittel

The FA Trip (as we affectionately called it in the weeks leading up) started as an idea of the brilliant Aaron Kittel.  The Kittel family has been running the river with Splore for several years (at least 10, I think), and now their son Mike is a guide for Splore.  Mike has three siblings, two of whom have this disease called Friedrich’s Ataxia.  FA is a genetic disease, caused by a lack of a certain protein in your body that causes the mitochondria in your cells to die, and therefore makes it hard for your cells to reproduce when they need to.  FA is characterized by the gradual loss of control of your limbs, which causes you to have to use a wheelchair.  Eventually, it becomes difficult to move your arms as well, so feeding yourself gets tough.  As the disease continues to progress, speech becomes more difficult and most people with FA feel constant pain to some degree.  All the while, you remain completely cognitively aware.  Mike’s older brother Aaron, and younger sister Allie, both have FA.  And if there is one thing that Aaron loves, it’s the river.  A few years ago he decided to get the rest of his FA community out on the river, and that’s where Splore came in.

The first few days of the trip were amazing in the life-is-just-more-meaningful-when-you-work-for-Splore kind of ways.  (Not to mention, the weather was unbelievable… cloudy and cool during the days, and then clearing when we pulled into camp, with an occasional rain sprinkle after dinner… after spending months in wind and searing heat, it was miraculous that the weather cooperated so perfectly).  This was the longest trip that I did with Splore, and it was great because I got to spend time connecting with the participants instead of having to spend most of my time loading and unloading gear (which I did, too, don’t get me wrong).  The thing about one-night overnight trips is that while it’s great to get to take people out on the river, you don’t really get to know them that well.  With this trip, I was able to spend hours each day talking to everyone.  And in this way, this trip really characterized this summer for me.  When you are talking to someone who is completely aware of the fact that their body is deteriorating and there’s nothing they can do about it, and it’s only going to get worse – it puts a lot of things into perspective, to say the least.

Allie in the kayak

And the most amazing thing that I learned was that every single one of the people on the trip still continued to set big goals for their future, and achieve them: Phil is writing a book, Jamie competed in the Ms. Wheelchair USA pageant a few weeks after our trip, Mary challenges herself daily by living independently, Allie wants to take up kayaking and fly fishing, and Aaron inspires everyone he meets with his positive, colorful, literally tie-dyed personality.

Black Rocks camp

On our third and fourth days on the river, we had a layover at a camp called Black Rocks.  This was a very meaningful spot for this group, and held a lot of history and sadness from the year before.  Last summer, while doing a layover day at this camp, a woman who did not have FA but had suffered some other chronic problems, fell ill and died at camp.  After performing CPR for several hours while they awaited rescue crews, and then rowing out the next day to end the trip early, it was a whirlwind that most who had been on the trip were suddenly thrust back into.  On our second night at the camp, we sat in a circle and those who had been on the trip before shared memories of the woman who had died, as well as of another participant who had been on the trip the year before but had passed away since.  We passed a heart-shaped rock around, taking turns holding it for a few moments and filling it with hope and love.  That night bonded the group even further, and brought even deeper meaning to the mortality that many of the people sitting in the circle were all too familiar with.

The next day we continued down the river, stopping at the ranger station to make lunch (we had WAY too much food for this entire trip… I spent at least half my time off the water chopping veggies), register our permit, and then continuing to Miner’s Camp right above the rapids.  That night, the perfect weather continued with a light sprinkle as we watched a heavy storm pass us to the west.  We woke up the next morning to an orange sunrise, and prepared to take on the rapids.

I’ve talked about Westwater before – a narrow canyon of black rock with about 2 hours of back-to-back class III and IV rapids.  We all made it through the rapids without a hitch, with the sun coming out just long enough to dry us out and then obligingly going back behind some clouds before we got too hot.  We finally got to the takeout ramp, and after spending some time unloading everything and packing up our trailers, we came together at the top of the ramp for a Closing Circle.  This is a Splore ritual at the end of each trip, and even before beginning the trip I knew that this one was going to be intense.  Tears were flowing immediately, with feelings of finally getting closure from the events of the past year, and sharing hopes that everyone would be back next year while knowing the reality that it might not be possible for everyone to return.

So much gratitude was expressed towards the Splore staff, and when Phil’s mom remarked that Splore gives people with diseases like Friedrich’s Ataxia something to live for, I didn’t know how to react.  I did little more than chop vegetables and spend time with amazing people; who was I to be told that I have a part in giving a purpose to someone’s life?

That night we gathered at the Splore house for the traditional Kittel-sponsored post-river after party, with a table full of Thai takeout and a living room cleared to make room for the wheelchairs that I had all but stopped noticing.  My heart was so full of gratitude for the experience I had just had: learning about some amazing people in a beautiful environment, and being inspired by the spunk and ambitions of people who go through more in one day than I have been through in my 22 years.  More than anything, I now know for certain that there is never a reason to give up on anything, least of all yourself.

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6 Comments

  1. Hey dear Claire. What a wonderful article. I’m going to send it to our world-wide support group for FA parents (475) as soon as you have time to make one small correction. The woman (Terry) who died on the trip layover day 2009 did not have FA. She and her husband tacked on to our trip and had their own boat. Terry was parapalegic and had been ill prior to the trip. The rest of your account was wonderful and accurate in my opinion.

    Reply
  2. Wow, thanks for noticing that, Sue – I will change that right now, and I would love for you to send this to your FA network!

    Reply
  3. Norman Simpson

     /  22 September, 2010

    What a great write up. We have been on 2 of the trips with Splore and Kittel family and truly it is an experience. I am at awe at what my son (who has FA) has inspired us to do. We ventured on the river a week after finding out Donovan had Type I diabetes in addition to his FA. That didn’t slow us down, we told the diabetes center and we had a crash coarse in insulin management and we were off to the river. I remember the first post-rafting circle we had, one of guides (who came in to help with rapids) commented that they were very confused at to whose child belong to who because we took care of each other. And to me that is probably one of the more important aspects, we are a FAmily. Its a shame that Splore doesn’t warn the new guides, that by doing this trip you will be bond to our FA family for life. I still remember each and every guide that was part of our trip. But more importantly the look on peoples faces when Donovan casually says, “oh yes I been rafting on the Colorado River” is priceless. Splore has been amazing at allowing people to reach beyond their potential and live (with a big smile on their face).

    Reply
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