A getaway makes me realize FA has created a creature of comfort
When I don’t have my home setup, I'm dependent on everyone around me
For Thanksgiving break, my extended family rented a cabin in a small town in Oklahoma.
It was a lovely week to unplug, unwind, play board games, laugh, go on adventures, and enjoy nature. We all agreed we must make the trip again and do it regularly.
I truly loved getting away from our routine and making memories with my loved ones, but I would be remiss if I didn’t mention the things I missed from our home here in Austin, Texas, the things that bring me comfort.
Finding comfort and joy
As my Friedreich’s ataxia (FA) symptoms, specifically loss of balance, have gotten progressively worse, I’ve had to start using a wheelchair predominantly, and my family and I have been hard at work on updating my routine to accommodate it. With my accessible minivan, seated shower, grab rails, wide doorways, and door ramps, I’m able to function fairly independently at home.
All of these intentional measures allow me to remain safe as I go about my routine. I’m able to be productive, and I’m proud of my independence.
But when I travel to places that don’t have all of the comforts of my home setup, I again become dependent on everyone around me. In Oklahoma, I needed help getting down the stairs that led to the cabin, and someone had to carry my wheelchair down for me. My husband had to lift me into and out of the tub. My children had to say goodnight to me downstairs before heading upstairs to their bunks.
Since this situation was temporary, I was able to compartmentalize my negative feelings about being dependent and just enjoy the cabin for what it was — a fun getaway with my family. I remained safe and injury-free for the entire trip, and I am incredibly thankful for that.
I was eager, though, to return home to the accommodations that provide me with independence at this stage of my FA progression. I realized that FA has turned me into a creature of comfort.
On our way home, we were singing along with Christmas music when “God Rest Ye Merry Gentlemen” came on, and it got me thinking about the relationship between comfort and joy, both of which are mentioned in the song.
The comforts that I have built into my life open up the space in my heart and mind that had been preoccupied with fear and worry, allowing me to find joy.
In my experience, both comfort and joy can function in tandem and independently. While I was away from the comforts of home, I still found joy. When I am productive at home because of my comforts, I can find joy.
It all boils down to this: Joy can be felt if you seek it. Circumstances don’t have to be perfect to make way for joy, and thank goodness for that. Our circumstances are rarely perfect, with or without FA.
My prayer for this Christmas season is for “tidings of comfort and joy,” despite your circumstances.
Note: Friedreich’s Ataxia News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Friedreich’s Ataxia News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Friedreich’s ataxia.
About the Author
Clester oda
My wife was unsure about us getting a camper. Since they don't make campers wheelchair accessible it made the decision that much more difficult. I searched and searched and finally found one I could make work. I gutted it , put an extra wide door on it , mounted a fold out 8 foot long ramp on it, and put a lift in it . Also made it solar powered .
We started traveling and staying in national forests ( because it's free). It gave us the ability to see many many places we never would have been able to .
If you want evidence of God.....we were camping out in the middle of nowhere at the very beginning of spring .....waking up every morning and getting to see the cold "dead" surroundings come to life a little each day was a real eye opener. From cold and "dead" to green and full of life .....amazing experience that we never would have gotten to enjoy. God's great work and wisdom in your face a little every day. I wouldn't trade that experience for anything.
We since have been living full time in this camper .....7 years now.
Since my wife is so disabled it is our only option....no place has a lift that I've found and it isn't safe for me to be lifting her unless it is an extreme emergency. Both for myself and her Since my back isn't great and I have a hernia that can't be fixed because I am her sole caregiver.
"Getting away" is our life . We've learned quite profoundly that chasing the almighty dollar and "creature" comforts is absolutely not worth it. Does it make things more difficult? Absolutely !! But well worth it....and it's only some insignificant things....like breaking camp and setting back up at a different place every 2 weeks. But once you have a system down it isn't that big of a deal.
In case anyone is wondering about campers...those "toy haulers" with the ramps on back for atv's or motorcycles don't work. They sit up too high which makes the ramp way too steep for wheelchairs. We've tried about every kind there is . Her power wheelchair won't go up them.
The camper I found is really old and sits low to the ground making the 8 foot ramp about perfect. Aside from having a custom camper built the only other options are altering one or using a cargo trailer with the ramp on the back ( they sit low to the ground) and installing all the stuff yourself.....fridge, sink, stove , bed etc.
In all the travels I've only seen one other camper that was wheelchair accessible....a motor home with a lift and larger door installed....big big big money.