Elephant Man

So much has happened in the last 6 weeks that I had a hard time deciding what topic to cover first but I figure this is a good place to start.
I have been reminded of the movie The Elephant Man on several occasions this summer. There's that famous scene where he is chased through the railway station by a ignorant crowd and as he's cornered he calls out "I am not an animal". It serves to remind those present that his humanity is no less real because of his physical nature. My AFOs draw stares now and then when people see me in shorts. If I know the person I explain about the muscle weaknesses I have due to my Lyme; to others I just smile. My experiences don't even compare to what others with even greater need for adaptive devices must contend with. Education is the key here, just as it was/is in fighting other instances of discrimination based on physical appearance. I wish people would ask me anything about my health,I have lots of knowledge to share.

There was another thread running through the film that I now understand- the desire for the seemingly mundane. He dreamed of being included in the world outside the hospital, of having friends, of sleeping in a bed. I can really relate to the last one as I had a 2 week period where back spasms forced me to sleep in a recliner. How strange it felt to say good night to my husband and have him retire to our bedroom while I tried to sleep in the living room. After a week the chair was placed in our bedroom and going to sleep in that setting felt more natural to me. My husband is 6'6, moves around in his sleep and is slow to answer his pager but the desire to simply rest beside him was as strong as it had been when we were first married. With the hot weather I missed getting into the lake and cooling off. I couldn't swim or waterski in 2003 and 2004 but at least I could wade. That is not possible now because of my central line. We are getting our granddaughter accustomed to the water but I can't help. I wish I could. I also long to see a blue sky again. My color vision is changing as I have a central color scotoma that looks yellow against certain shades of green, yellow and blue. A bright sky now looks grey or steel grey to me. On cloudy days the ambient lighting looks like the color of the sky before a tornado. I have always reveled in nature's palette, especially at sunset, now those beautiful colors are diminished. I did see a retinal specialist who understood my description of the problem and testing suggests this is a cone problem and not a vascular problem with the macula- my overall vision is not threatened. I take comfort in his assessment but miss my colors all the same. Mundane experiences are elevated when they become inaccessible.
I remain hopeful that I'll regain much of what I've lost but it is equally important for me to hold on to the experiences I gained through my illness. Doing so will help me connect with others who face misunderstandings and losses brought on by illnesses/injuries beyond their control.