Wednesday, September 16, 2015

My 2nd Time Around - FA Trip 2015


Prior to beginning this adventure, I wanted to make sure I would do one thing, simply enjoy it. Having the experience of last year under my belt, I knew I was not going to die in the wilderness or the river. The three returning members, Will, Tony, and Smiles had my complete trust. I knew my provider, Jared, was not going to let anything happen to me.
I, pretty much, knew the layout of the land, and what to expect during the trip. Going in, I wanted to relax and let things happen. See where the river took me without having that pressure, it was quite nice. This year's trip with SPLORE was not better than the first, but completely different and perfect. How do you compare two trips of a lifetime?

Gary and Judith were not going to be able to make it this year, so I had to find a new provider. Jared and I were good friends throughout high school, but we went our separate ways following graduation. I went to college, and he went to the military. I knew Jared could handle me physically after spending thirteen years in Iraq. I know I'm a lot of trouble, but come on, I'm not that bad. Jared had the most difficult, intensive provider course I could imagine. However, he handled everything with ease and care. With that aside, we were both allowed to focus on the beauty that surrounded us. After nearly fifteen years of not seeing him, our relationship did not miss a beat. I knew by bringing him as well, he would really appreciate the amazing sites and soothing sounds of the Colorado River. Our late night conversations and laughter throughout the adventure led to one of the most remarkable experiences of my life. Jared's involvement was essential to my enjoyment on this trip. I could not imagine a better provider choice.

The 2015 FA Trip was full of new faces. Going on my second trip, I previously knew Katie, Will, Smiles, and Tony. Becky picked me up again from the airport. The cast of characters was new, but the end result was very similar. Our new river guide, Deja, took us down the river with a sense of calmness and confidence. I remember thinking to myself, I was being led by an angel. Since I was looking forward the entire time, and she was behind me. All I could hear was her voice, and it was absolutely beautiful. The FA participants were a pair of sisters, Megan and Melissa. Both girls looked similar, but were totally different. Megan was very sweet and feminine. Melissa was a firecracker, with her stories about "Murderball." I had known Liam from a post I put in a Facebook group about the trip, and really wanted him to go on this SPLORE adventure. His calm presence and demeanor provided a smooth tone during the trip. I got to see how I was ten years ago when watching Liam handle himself. My physical symptoms were very similar at that time. Katie was as sweet as always. Putting up with my drama once again with the greatest of ease. I tend to be a handful. This year, there were four volunteers in total. Everyone was so helpful in different ways. With Judith only with me in spirit, one of the volunteers had to fill some big shoes. Chris stepped up to the plate, and did it as a non family member. Her strength and attitude were out of this world. I would follow that woman anywhere. She was a big reason why this trip was so great. The roster on the river adventure was at seventeen people. It is always cool to see a group of people start down the river as strangers, and at the end of the rapids float down the river as a family.

I felt so fortunate to witness such beauty along the Colorado River. The shadows and sharp angles off the rocks and cliffs of Ruby Horsethief Canyon created a breathtaking backdrop. The smooth, flowing quality of the river passing by brought a soothing peace and the echoes the words of Joe Kittel, "let my past float behind with the river." I'll never forget the sound of the oars and the paddles touching the water, moving us slowly down the river. I kept thinking, I should be sitting in traffic with everyone else. It's an indescribable feeling when you are surrounded by beauty. Everywhere you look there is something awe inspiring. The layover day, or two days in the same campsite, is always my favorite. We were allowed to enjoy nature at its finest without having to worry about the next destination. Of course, more so than last year, I was able to really take it in. I'm a firm believer in the healing power of nature.

There were many moments along the river when I was able to just sit back and realize how lucky I am to be in this magical place. On our layover day, I remember sitting in the river with all the FA'ers and just hanging out. I remember the song, Perfect Day by Lou Reed, kept playing over and over in my head. I think that one song pretty much sums up the entire trip. Thanks SPLORE!


Thursday, January 15, 2015

My First Time Camping - SPLORE FA Rafting Trip 2014

©2014 Judith van Praag
The following may come as a surprise to some, I went on a white water rafting trip. That's right I traveled to Grand Junction Colorado and embarked on the trip of a lifetime with a company called SPLORE last September. 
Yes! I floated down the Colorado River, not for a few hours, not for a day, but for five days. And we camped out in the wilderness along the Colorado river. Imagine that!
No, I had never camped in my life. Everyone knew that, and helped throughout. Prior to the trip, I was worried that I was going to be too much of a problem. I quickly realized that everyone banded together to help. Not just river guides, volunteers, or providers, but even FA participants. I have never experienced such a high level of love and trust from a group of individuals. 
I had seventeen people helping me survive in the wilderness.
©2014 Judith van Praag
Living with a disability brings the need for a sense of independence. I know that I am not entirely independent. Yet, any time I can say to myself, "yes, I can do that," it makes me stronger. There are many things in life that I know I cannot do. Asking for, and accepting help can be difficult, and that can hold you back. I don't want to ask for help if it's going to be a problem for someone.

September 4th was the day of the "put-in" on SPLORE's rafts near Grand Junction, CO. 
That happened to be the 22nd anniversary of my sister's death. Michelle died of leukemia at age fourteen. She was a year older than I, and a great example when it came down to doing new things. It seemed fitting I'd step outside my comfort zone on that day.
SPLORE river guides and volunteers have the ability to make you feel comfortable about asking for help, because they offer assistance without belittling you. I cannot stress enough how important this is.
Joe Kittel posted a poem on the FA Rafting trip Facebook page about floating down the river. The river is always moving forward, you can leave your past behind. I was doing just that.
The landscape was absolutely breathtaking. The sun was so bright it splashed everything in gold. The sky was crisp and clear. The sharp angles of the rocks and cliffs in the canyon were a brownish-red color with green foliage peppered throughout. The sound of streaming water was calming, peaceful. All that combined makes me think of U2's "In Gods Country".
Gabrielle Ford told me that the people she met on the river were like family. I now know exactly what she meant. We began this adventure mostly as strangers, and now this group, or family, will be part of me forever.
©2014 Judith van Praag
I'll never forget the night by the campfirewhen Smiles sang her beautiful version of Bonnie Raitt's Angel from MontgomeryI swear the hair stood up on the back of my neck. Chris fed me a ton of information about wheelchair improvements. In addition, his calm demeanor set the tone for me during the trip. Brona's quick wit and sense of humor was inspiring. One evening Katie let me borrow her walker to stretch out my legs. She went to her tent without, simply so I could keep my feet up. That was sweet. I remember Gabe jumping into the water by her self with a gigantic smile. The obvious joy on her face showed that SPLORE is doing the right thing. Gordo's laid-back attitude and whimsical approach to life makes me not want to take things too seriously. Judith and Gary took care of me and everyone else with a perfect sense of enthusiasm and care. They were the reason I was able to go on this trip. Lindsay and her spunky attitude brought so much life to the camp. Will, Nancy, and Andrew are my heroes because they embody what I want to be in life. On the last day of the trip, Darrell put his arm around me on the shuttle ride back to the hotel, to keep me from falling into the aisle. I was very touched. Kate let me borrow her jacket so I wouldn't irritate my arms while resting on her suitcase. All of these people had such a huge impact on me in a short period of time. 
©2014 Judith van Praag

Thanks to SPLORE!

FYI: I was diagnosed with Friedreich's Ataxia (FA) at age fourteen. FA is a rare inherited disease that causes nervous system damage and movement problems, but does not affect cognitive functions, one in 50,000 people is affected in the US. 
In September 2014 I participated in Splore's 5-day white-water rafting trip.

Wednesday, May 7, 2014

In the Can - The Making of "Everything is Peachy" Documentary on Living with Friedreich's Ataxia

In the fall semester of 2001, I took an editing class. Danish and "Shameck" we're taking the class as well. Midway through the semester, they asked me if I wanted to be in their documentary. 

Over winter break, we started making plans for the production. Danish gave me ten basic interview questions. I added things I thought were important. We filmed the interview first. 
I spoke on camera for a little bit under 2 hours. 

Allan Howell
Papa Frank Howell
A few weeks later, they stayed the night at my house. We surprised my father and grandfather with an interview. I stayed in my bedroom, not wanting to make them nervous. 

Graveside Michelle Howell
Danish shot the video on a tripod and Shameck handled the boom microphone. 

Dad on Horseback

Cool Beans
The following 2 days, they followed me driving to the graveyard, an Indian restaurant, and Walmart. We then drove to my dad's horse stables and got about an hour of footage on him. 

The  last day of production, they filmed me in class and followed me to lunch at one of my favorite dive bars, Cool Beans. 

The actual production took about 3 weeks after that, we immediately began post-production with editing. I was primarily in there as an observer,  but did voice my opinion quite a bit. 

The documentary class was screening the 30-minute documentary projects at the end of the semester during the Spring of 2002. 

We had about 4 hours of footage that we needed to cut down to 30 minutes. That took a long time, about 2 weeks . We were in the editing room for about 4 hours each day. Overall, the documentary was completely finished from start to end in about 2 months. 

We screened ours with about 5 other documentaries. Ours was the final one. In my opinion, we blew the others out of the water. The majority of the audience consisted of family and friends. I had no one present, which was weird to a lot of people. I was and am used to that. 

The guys got an "A" for their work, I ended up getting a special problems 3 hour credit I needed to graduate. It was a huge success.

Sunday, May 4, 2014

Getting Started

Posting a link for a fundraiser for myself on my own blog feels a bit weird, but this is where it starts, getting my stuff together, so I can enter the 21st Century. Been living in obscurity for too long. Here goes: Jordan Howell Wheelchair + Tech Fund. Check it out.
And while you're there Find Other Great Fundraisers at GiveForward