My adventures at deaf-blind camp help illustrate the changes and success I've experiences over the past several years. I attended camp in Maryland in 2003, 2004, 2005 and 2009. Each years seemed to be a new chapter in my life. As my health improved and I learned new skills, I was able to experience camp in new ways.
When I attended camp for the first time, I was still in pretty bad shape. This was only 18 months after the illness that left me totally deaf-blind and physically impaired. I was still in a wheel chair. Although I was regaining some feeling in my hands by this time, I still used "print-on-face" for communication. It was a method no one else had ever seen before. I attracted a lot of attention.
By my second year, I was walking with the use of a support cane. I did not even bring my wheel chair to camp. I was also using tactile fingerspelling by this time. I was slow with receptive communication, but I was doing it.
My third year at West River found me walking with a regular cane for the blind. I still lacked balance and control. I needed a sighted guide to help me walk around camp.
I've already posted one blog about restrooms. People are going to get the idea that I am obsessed with toilets. And, yet, it's such a simple and necessary part of life. Not being able to use the bathroom on your own is frustrating and, at times, quite humiliating. For me, independence is often determined by my ability to access a restroom alone.
During those first three years at camp, I could not use the bathroom on my own. SSP's are there during the day to escort campers to the bathroom. It's fine. I don't like needing that help but I can deal with it. Sometimes you just have to accept that you need some assistance if you want to do new things.
It was nights that got me down. I would become very anxious in my dorm room each night. What would I do if I needed to use the bathroom at night? How would I find the restroom and make it back to my bed?
The first two years I had no choice but to wake the SSP in my room. I hated doing it. It made me feel like a little kid on a Girl Scout camp out who needed a chaperone to escort her to the latrine. Nighttime toiletry is a very solitary activity. You slip out of your bed, tip toe to the restroom and make it back to your room without anyone ever knowing you were gone. Having to wake someone up for help just doesn't work for me.
During my third year at camp, I was ready to try it on my own. I had my SSP show me how to get to the restroom before I went to bed the first night. I did it several times but had a very hard time. There's this one place where you have to leave the wall and cross an open area. I kept messing up and getting lost. Sometimes an SSP would find me wandering around and have to help me back to my room. It was embarrassed and upsetting. I felt like a failure.
Here I was last week, back at camp for the first time in three years. My life could not be more different now. I'm walking much better now. I still wobble a bit but my leg braces and forearm crutch help to keep me steady and safe. I'm stronger and have more endurance. I'm struggling with sign language compared to where I want to be, but my skills are improving every year. There's a huge difference between who I was in 2003 and who I am now.
Some things don't change. Nighttime bathroom needs still had me very anxious. Once again, I had my SSP teach me how to find the restroom incase i needed it in the middle of the night. Armed with new skills in mobility and better physical status, I felt up to the challenge.
It happened on the third night. I awoke with the need. I got out of bed and picked up my crutch. Slowly, I moved out of my bedroom and down the hall. All the way, even past the open area and in the restroom, I was absolutely fine. I knew exactly where I was and where I was going. I felt safe and secure.
Back in bed, I heaved a great sigh of triumph. To you, it may just sound like a trip to the bathroom. To me, it was a small measure of success.
(Written on June 18, 2009.)