All forms of treatment have either not applied to me or have had unsatisfactory results. These include neurosurgery, the VNS implant, seizure-alert dogs and currently available drugs. As we know what matters is doing what works and not focusing on what does not, a very controversial tool has worked for my rare, hard-to-treat case.
The tool is a wheelchair, which is only used when status seizures occur, so I can be productive, use my healthy working brain, and LIVE! I use it solely to prevent injury and to help me focus on using imagery techniques with progressive relaxation to abort seizures, if possible. Also, lately I have experienced temporary, intermittent blindness, double and blurred vision, hyper-photosensitivity and increased sound sensitivity when seizure-susceptible and even when my pills are "working"! Enjoying the life I've been given, no matter how I manage it, is always preferable to playing the victimized hermit! I know I still haven't answered why I chose the title for this article. When my 3,006 mg. of pills work I stand at five feet, seven inches tall. In my loaner wheelchair I'm about four feet high, and although I'm lower than the average height of most adults, I smile and am "Paulette Motzko". I cruise in my "chariot of fire", smiling, talking to others and hoping to set a positive role model for the disabled community. Sometimes people are shocked that I have the guts to exhibit confidently that I am their "normal equal". By making purposeful eye contact, I have made some great friends. Two heights bring two very opposite perspectives on the world and its inhabitants.
My world is viewed at a different level both physically and also in terms at society's biases, which often "stand tall" when I cannot. Stigmas exist for both invisible and visible disabilities and disorders, but through necessity, epilepsy is made visible and illustrates how it can literally cripple on these unstable days. Missing eye contact, nonexistent ramps, and miniscule bathroom stalls too small for wheelchairs, all amazingly come into view. Places I once walked through easily are now forbidden territory. Breakable things are more fragile, lack of manners and respect become more prevalent, and my astonishment that one of my hands can miraculously do the work of three go with the chair. This fact makes me work harder to enforce the mandatory ADA standards.
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