Last year I launched a message to meet people with FA. I was going to see how fellow FA’rs were finding solutions for every day problems that our desease is causing. Then I’d make an English website so we could learn from eachother.
I was planning/hoping to make some trips & visits around Europe, until…I was asked to come and visit a ranch in the USA.
The owners, Paula & Tom, have 2 girls with FA, Carli & Katie. Each year they organise FA Woodstock, a relaxing weekend for people with FA and their family/friends/lovers..
Kyle Bryant, who serves as an example for me and my hero was going to be there, together with lots of other FA’rs and they have a swimmingpool and (most importantly!) a fishpond!
Reasons enough to empty my piggy bank once more and to travel to Chicago with Danielle.
Travelling is always tiresome, lots of organizing, solving things and make the best of what you got. But it sure is amazing to look back at the funny moments, the culture, the nature and all the unexpected changes afterwards…
We left our house around 8am and more than 24 hours later (for us) we opened the door of our hotelroom in Michigan city. It felt like one week had passed in one day. Overthere it was midnight, 7 hours earlier than Belgium.
We got 2 queen size beds! But they were far from clean… Blood and other stains on the sheets. Far from clean but we were too tired to care at that time.
(First thing to do: clean sheets!)
After a short but good sleep our (borrowed (thank you, Marc!)) GPS in our rental car brought us to the Hook family. It was raining on the way there! So we arrived in shorts and in the rain.. 🙂
When we were saying our hello’s to everyone, they seemed impressed that we came from soooooooo far. 🙂
They asked each of us to make a painting, so they could auction it off afterwards. The total amount of that auction will be used to cure FA). Normally I’d never do this, because my hands are shaking at times and I don’t color between the lines…Now I wanted to do it and that is typical about this weekend; everyone can be herself/himself without being looked at in a funny way.
At the drawing table I saw Kyle for the first time, a very normal guy! 😉
There was also a stand where you could tie-dye your FA Woodstock shirt, that was really nice to do.
After that we drove with a tractor to the fishpond.
The day finished with a group photo and fireworks (in the pooring rain!)
Breakfast at the Hook’s!
Francois was sitting at our table that morning, a 47 year “old” Frenchman. 47! And he was still very well. Just like me he had a manual wheelchair. A really great guy, filled with humor…another example.
I now get why some Americans are overweight.. The food is good, but ooooh so fat/greasy!
Fried chicken, pancakes for breakfast, chips as part of your dinner, icecream, muffins, bacon..
We went to see dr. Lynch at the ranch. He and his team are working nonstop to find a cure for FA. He took blood and saliva samples for testing. For him this too is a perfect event, so many patients at one place.
Afterwards we went to do some pottery and when it got really hot around lunchtime we jumped in the pool and enjoyed a really nice cocktail (or 2…3..)
Since a long time, I’m not really bothered anymore with the fact that I can’t ride fast with my wheelchair. Everyone with FA suffers from that. That is why some had an electric wheelchair or a scooter. One had the e-motion (electric driven wheels) and Donovan had the Wijit.
I tried the Wijit (of course 🙂 ) and it worked! When we joined the group again Brian from Canada told me that he also had used the Wijit but stopped using it. So he told me that he would send it to me and I only had to pay the shipping costs! Awesome!
Still enjoying the good news Francois challanged me to arm-wrestle with him. I agreed and we moved our wheelchairs facing eachother… I started and there was no movement in his arm! “You can start now”, he said jokingly. I did see he was having trouble aswell. Then he went for the attack, but I could stop him too. To make a long story short; after 10 minutes, I had ‘m!
During fishing that day, I arranged with some guys to place a fishing-line over the fishpond, hoping to catch a catfish. In the pooring rain we caught some little fish to use as bait. After an hour or two (with 5 persons), the line was fully “loaded” and across the pond.. Exciting! Then we had to wait for the next day..
FA Woodstock was slowing coming to an end. We all had breakfast and took our time to say goodbye. I purchased a book from Jude called “The view from down here”. He is a writer and writes poems about living with FA in this book.. and living in a wheelchair.
No catfish.. Bummer!
In the afternoon we went to a fish store, like almost everything in America this store was huge! 2 floors, a waterfall with salmon inside the store, electric scooters and… GoPro’s! 100 euro cheaper than in Belgium. So I figured “what the heck” and purchased one. Payed with VISA, so the pain in my wallet will be a month later. 🙂
I was already in the car when Danielle decided to make a quick stop at the restroom. She locked the doors of the car and because of the heat outside, the oxygen in the car was soon dropped to a minimum..
So when I wanted to open the door, this didn’t work. Unlocking the door didn’t work either! I tried to think and not to move as much, so I wouldn’t waste too much oxygen. I started to sweat a lot.. the car horn didn’t work either! And I was just about to break a window when Danielle got back.Fortunatly!
Ride day! Everyone who was there was in some way or the other “attached” to ataxia, an awesome event. We arrived around 8am. I rented a handbike and Danielle was riding on a bike we borrowed from Deauke and Renaat (a great Belgian couple who are living in LaPorte, IN.)
My handbike was a Top End, in good shape, apart from the smallest gear that didn’t work. I couldn’t really strap myself in, but that didn’t seem necessary (at first..).
We left when the sun was already pretty hot, on asphalt. A mile later this turned into a gravel road with ditches and vicious climbs (mainly bridges). That made me lean more and more to one side.. 🙁
During the ride someone infront of me just made a panic stop, I swerve to the side and someone else who was also got out of the way hit my arm… No damage, thank God! 🙂
During our lunchbreak, Doug (an awesome guy who helped me during fishing a lot) made me a seatbelt out of ducktape. It only worked for a little bit..
When Danielle and I got near the finishline, we met up with Kyle and David. So the last mile we were riding with them and that was really nice, we crossed the finishline together while lots of people were giving us a huge applause. 🙂
On with the food! The people from OUTBACK Steakhouse organised a bbq. (really good food!) and there were speeches from doctors, sponsors and Kyle. I also met a friendly 62(!!) year old lady with FA. 🙂
After the group photo’s we went back to our table to finish our drinks.. the tables were gone! Around 2pm we were back in the car to drive “home”. Weird! In Belgium such an event would last longer than this..
When we got back to the hotel we took a nap and relaxed the rest of the day.
From this day on, our own vacation started.. So we thought.. during the days at FA Woodstock we met so many nice people.. that night we ended up at a restaurant with a few of them! A nice gathering, but again; dinner, coffee, the check and going home. According to Deauke this is quite normal in America. We agreed to go fishing on a pontoon boat at ‘Pine Lake’ the following day.
Arriving at the lake, I was a bit sceptic; large, windy, no fish to be seen..and the guy we rented a boat from said; “I don’t think you’re going to catch anything”.
Nice to hear, thank you. 🙂
After two hours of jigging (move up and down with a fake little fish) I felt a bite! The biggest bass I ever saw! I was super happy.
That night we had dinner with Deauke and Renaat. They invited us to their place to ride their huge lawnmower.
I thought a smartphone wasn’t something for me, with my bad coordination that wouldn’t work out. At FA Woodstock everyone had a smartphone, so I kept on trying on Danielle’s tablet. I got the hang of it pretty quickly.
At Deauke’s place it was really nice, she told us the differences between Belgium and Chicago/Michigan/America in general. After that she showed me how to ride the lawnmower. 🙂
We said our last goodbye and finally went on our way to Chicago!
Carli (Hook) from FA Woodstock came to town to have lunch with us and her kids. She had to drive quite far, but you are worth it, she said.. So sweet!
Around 3pm we were at Wrigley Field to watch the Cubs play the Phillies. What an event; thousands of people, the atmosphere. A lady next to us explained during the game what the rules were. All in all a great afternoon. Too bad the Cubs lost with 5-3.
Last day! We had a lunchdate with Leentje and Michael, two people from Sint Amands (my hometown) who are living and working in Chicago. They took us to a Greek restaurant and a pub with its own brewery.
Afterwards our long way home started. It was good to have Jude’s book, there are a few masterpieces in it! I’d like to recap some of it in my own words; ataxia is like a tortoise, slow but effective. If people ask about the future, you think: we’ll look at it one day at a time.. Maybe there will be a strong wind that turns the tortoise on its back (a tortoise dies if he lays on its back).
Back home and my laptop died, dammit!
I am writing this with a jetlag (and a new laptop!). Again, I want to thank everyone who made it possible that I could donate 1.000 euro for a research to cure FA. I thought I had 800 dollars, but during the ride Ataxia someone congratulated me with my high amount, more than 1.000 dollars. Back home I checked and realised that Rotorexpert (that’s my friend Jasper) had donated 250 dollars! Thanks mate!
btw: here are the results