Camping with Usher Syndrome

July 2nd, 2019

by Kathy Thompson, Ph.D.

I’ll be honest. I did not like tent camping when I was younger and I have never camped in a travel trailer/camper. When my husband suggested we consider purchasing a travel trailer/camper to use for traveling, I was skeptical.

In December 2017, we purchased a travel trailer/camper with a rear bed slide. It is a petite camper but it has all of the amenities we need for camping. Some people refer to this as ‘glamping’. As I write this blog, I am happy to say we have taken the camper out on 14 different trips. Some of those trips include state parks in Alabama, Florida, and Tennessee. We have also taken it for an extended trip to visit family in Maryland. That camper is now one of my favorite places to be and camping is one of the things I look forward to on a monthly basis.

What changed? First, I realized that it was an awesome way for me to travel safely with Usher syndrome. I cannot tell you how many times I have gotten lost in the dimly lit hallways of a hotel or how many times I have been blinded by the white floors, walls, and shower, of a bathroom that is too bright! Having my own space allows me to set it up so it works for me.

Secondly, the state parks in the lower southern states are awesome! There is so much to see and while I have some remaining central vision, I am hoping to visit all of the state parks. My husband and I have visited Fall Creek Falls in Tennessee, where we hiked down to the bottom of the falls on a very HOT August day! We also viewed the beauty of Noccalula Falls in Alabama and experienced the calmness of a biologically and historically unique conservatory at Paynes Prairie in Florida. Due to these experiences and adventures, I discovered that ‘nature therapy’ does wonders for my sanity and helps me with my day-to-day frustrations.

Although camping with Usher syndrome has a ton of benefits, it is not without challenges. There are several strategies that I use to help navigate the world of camping, both inside my camper and outside. One of these strategies is making sure I have enough light. My flashlight is one of the most important items in my camper. It travels with me when I walk to the bathhouse and it is in my hand when I am looking for items in the cabinets. The lowest setting on my flashlight is also used as a nightlight so I can find my way to our bathroom without turning on the camper interior lights and waking up everyone in the camper! In addition to the flashlight, I use solar-powered disk lights to outline our campsite and highlight the steps to the camper. I have a ball cap that has lights in the brim, awning lights to light up our outside space, and mini-lanterns for the picnic table. I like LIGHTS!

The next strategy is organization! I spend a significant amount of time in our camper, working on getting the cabinets and the storage bins organized. As items are taken out and used, they are put away as soon as possible so I can find them for the next time. Is this foolproof? Nope, as I re-organize often and then forget where I put something. This, I believe, is not something that is unique to folks with Usher syndrome though.

While I try not to dwell on the challenges of Usher syndrome, it will sneak in. This is when I turn to ‘nature therapy’ and take in the beauty of the state park. I enjoy the beauty of the natural landscapes and often times, the historical aspects of the state park. For example, at the Old Stone Fort State Archaeological Park in Tennessee, there is a hiking trail that follows a ceremonial gathering place used by Native Americans. The entrance of fort was designed to face the exact spot on the horizon where the sun rises during the summer solstice, the longest period of daylight. How cool is that?!

So far in my adventures, I have not encountered another person using a white cane. I have had a few adults and children ask me questions about it and what it means. I use these opportunities as educational talks and share a few tidbits about Usher syndrome.

Honestly, I celebrate the fact that I do have some central vision remaining and I am working on filling up my mental ‘hard drive’ with memories and pictures. I embrace the laughter when I have the ‘oops’ moments, such as dropping the ice on the outside of the cup rather than inside the cup! I am excited for more camping adventures and looking at the calendar for 2019, we have 7 more trips planned!

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