And God Laughs
I told God my plans and He laughed. So now I am living, laughing, and loving according to His Plans.

Etiquette Lessons???

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Recently the Christopher and Dana Reeve Foundation conducted a survey of visitors to its website and web communities and published the results of the Top Ten Most Annoying Things for Wheelchair Users. This stirred up a lot of controversy, including debates over whether accessible stalls were reserved for individuals with disabilities or were fair game for anyone at any time and over whether van accessible spots should be saved for those with wheelchair vans who otherwise can not exit their vehicles. I got thinking about my own experiences, and I decided to make my very own list of Annoying Things About Being in a Wheelchair based on true life experiences. I think I may have done this before, but if so it is time for an update. :)

* Pardon me, do these wheels make my brain look small? - Apparently utilizing a wheelchair for mobility immediately divided my IQ into its square root because the moment people recognize that I am in a wheelchair, they raise their voices up at lease one octave like you do when talking to a small child and they oversimplify their voices. If at all possible, they avoid talking to me and instead try to talk to whomever is with me instead as if I can not speak for myself.

* I am not hearing impaired, but even if I was your yelling would only make you look like an idiot. - For some reason I have yet to figure out, people have some compulsion to yell at me because I am in a wheelchair as if because my legs do not work right I must also have trouble hearing. This one can be entertaining because I enjoy watching people make idiots out of themselves.

* Don't pity me, buy me a drink!- Save the pity for someone who wants it or needs it. My life is rich in all the ways that matter and I am abundantly blessed. Don't compare me to some standard that you feel is the definition of normal or "good". If you feel bad about the situation I am in, talk to me; get to know me, ask questions, learn that it is nothing worthy of pity and that I am just a person with hopes and dreams and good days and bad days like everyone else. Learn about my disability, learn about me - understand but do not feel sorry for me. I am too busy living most days to feel sorry for myself!

*Having a multitude of children is not a disability. - When there are normal bathroom stalls open for usage, it is rude to take and use the one accessible stall because you have a brood of small children. Being a parent is not a disability, it is a lifestyle choice. I can not choose to use one of the regular stalls if I wanted to and so am stuck while you allow each of your children a turn to try to go potty and to flush, often more than once because it is just SO COOL! By the time I get the message to my brain that I need to use the bathroom, I do not have time for you to negotiate a potty treaty that would make the Russians proud.

*If you stare long enough I just might do a trick!- I understand that you may not encounter someone in a wheelchair on a regular basis, let alone someone who uses the type of wheelchair that I do, let alone someone who wears capris and shorts that allow for my AFOS to be visible in summer months. I get that the natural instinct is to look. There is a difference between an inquisitive look and a gaping stare. Gaping stares from small children do not bother me; gaping stares from teenagers and adults are just rude. If you are curious ask a question, I don't mind explaining things and would rather educate you than be a side show freak on display for your entertainment.  

*Do Not Pat Me On The Head. - Enough said.

* This is my dance space spaghetti arms!- Treat my wheelchair as your would treat a part of my body and do not lean against it, grab hold of it, or hang on to it in such a manner as to prevent me from moving. My wheelchair is not there to be a convenient place for you to hold on to on public transportation, for you to lean against, or for you to hold onto while engaged in conversation turning me into a virtual prisoner. Respect my space. Never start pushing my wheelchair without first asking and receiving my permission. I don't run around scooping up people who are walking and wheeling them around on my lap so lets be fair.

* Look at you standing there all Homo erectus! - Avoid the temptation to comment on how well I manage to maneuver in my wheelchair like this is some extremely astonishing accomplishment. I do not praise you for how well you stand and walk.

* By any other name would not smell so sweet - I hate being referred to as a wheelchair. I am no more a wheelchair than someone who is walking is a pair of sneakers or high heels or flip flops. I am not the tool I use to access the environment around me.

* I escaped out the back door- Please do not ask me where my parents are or who I am with at a store or other public location, or if someone forgot me there. I am fully capable of utilizing public transportation and also of managing to arrange for transportation. I am almost 29 years old, and while there are days I can not go anywhere, when I do get out I do not need a constant babysitter. I am still capable and coherent.

* Do you have a license for that thing?- yep, it came in a cracker jack box. If I run your toes over I get bonus points.  

I have to say a love this. I've been using my wheelchair sence I was born due too an spinal injury when I was born. Any ways I love the I escaped out the back door. I love the look on peoples face when they realize I'm in changed. I really started to see it happen when I move to a new town. Me and my Very able body roommate went apartment hunting they all start addressing him first but very quickly learned he had no say so in anything. lol. I just love that baffled look and see them try to back peddle their way out of utter humiliation.

You rock!! That's all I got to say! I love the way your brain works! What I hate is that everyone wants my life story when they see me in the chair for the first time, since my degenerative condition made it necessary. I'm like, dude, actually read the blog I sent all my friends, do some due diligence on your own.

I love everything you said, except I have to defend the parents who use the handicap stall for their children. To no fault of the parents most child changing tables are in the handicapped stalls. Blame the idiot who decided the only place to put them was there-not the parent.

OOOOOOOH!!! LOVE THIS!!!!!!!!! The next person who asks me if I want to race, compliments me on going to the big scary grocery store all by my 3y year old big-girl self, managing "so well" in my "Cadillac" (really? the sticker on the frame says "Quickie"), or god forbid asks me more than one time "do you need help?", or even worse pushes me without permission, is gonna get hurt. Bad. I SO agree with a similar comment on another board that we should get the etiquette rules made into a tshirt :D

Love your haircut!

Don't think any of these sins have been written in my book, but I'm not above using the big stall if no rolling women are in sight.


LOL this is actually an old picture of myself from like a year ago - back when I had the "I just escaped from the hospital" wheelchair, and still had the core strength to do things like this. :) I am actually growing my hair out now to donate to Locks of Love...and it is growing so slowly that there have been several days I have stood in front of the mirror holding a pair of scissors and the only thing that stopped me is that I can not cut a straight line to save my soul. This picture is also from the "dysphagic" days and I have regained the weight lost - but the neurologist actually was pleased by that as we now have a safety cushion (LOL or a backup belly) in case the dysphagia gets severe again.

Job 8:21

"He will fill your mouth with laughter and your lips with shouts of joy."

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Wild Olive

Wild Olive

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Creative Victory

This is Me

I am a thirty year old enigma who has defied every expectation ever placed upon me and refused every definition created for me. My greatest passion in life is to make a difference in the lives of children with special needs and their families. As a special education teacher I broke all of the unwritten rules to make sure that my kids received the services they needed and had a right to receive. I have never been so proud to be reprimanded before in my life. Now, due to unpredictable twists in life, I am learning first hand what life is like when you rely upon a wheelchair for mobility. I am a medical puzzle with the pieces slowly being identified and put together, and my medical bills alone could fund a small nation. It takes a village to keep me alive. :) However, I am not defined by the genetic misspellings. I am a teacher, a daughter, an aunt, a friend, a dreamer, a reader, an amateur photographer, a writer, an advocate, a star gazer, a world changer. I am stubborn, situationally shy, quick to use humor and wit to make others laugh or cope with a situation, sarcastic, fiercely independent, giving, compassionate (sometimes to a fault), protective of those I love, defiant of arbitrary boundaries, perfectionistic, self conscious, self assured (yes you can be both!), articulate and occasionally dramatic. And that is just what I could fit in two sentences! :)

Who's On First, What's On Second, I Don't Know! (Third Base!!)*

Simple Vocabulary Definitions for those who may not speak fluent medical :)

Undiagnosed Progressive Neurological Disorder- This is the diagnosis that is believed to make everything else fit together. It explains my frequent infections, my muscle weakness and dystonia, my dysautonomia, my cardiac issues, my inability to regulate blood pressure, my dysphagia, my ataxia, my severe fatigue, my extreme nausea, my gastrointestinal dysmotility and IBS like syndrome, my unbelievable migraines, my sensory changes in my arms and legs, my vision issues, my hearing loss (so much for blaming medication), and so much more. Going back to infancy and childhood, this would explain the severe apnea, the significantly delayed motor skills, the reason why I could never keep up with my peers in physical activities, the neurogenic bladder, the malfunctioning thyroid, and my frequent illnesses and vomiting. This is the diagnosis now being used since the DNA testing for Mitochondrial Disease came back odd and I can not afford the expenses of a workup at the Mayo Clinic. We are treating symptomatically.

Pan-Dysautonomia- "Pan" means that it impacts many different systems of my body, "dysautonomia" is a failure of my autonomic nervous system or the part of my brain that does all of the automatic things that do not require conscious thought like telling your heart to beat, regulating your blood pressure, adjusting your body temperature, maintaining balance in space, digesting food, hunger and thirst, etc. It is believed that I have had this from birth based upon my history of symptoms, including severe life threatening apnea as an infant, but the cause remains elusive at this time

Dystonia- abnormal muscle tone and spasticity, including painful spasms, that primarily impacts my feet and lower legs and is now starting to be a problem in my back

Ataxia- difficulty maintaining balance and coordinating/executing movements

Dysphagia- difficulty swallowing due to any number of causes including muscle weakness and poor muscle coordination

Adipsia- the absence of a sense of thirst

Other Medical Issues- Lupus Anticoagulant (autoimmune disease that causes me to tend to form blood clots and has already caused two deep vein blood clots and one mild stroke), Migraines, unknown connective tissue disorder, abnormal gastric motility, allergies, history of v-tach and severe sinus tachycardia, changes to my echocardiagram that include leaking valves and a new murmur, low blood pressure, ataxia, untreated PFO (small hole in my heart that increases the risk of stroke), chronic lymphadema in my left arm, Hashimoto's Thyroiditis, Narcolepsy/Idiopathic CNS Hypersomnolance (believed to be a result of the dysautonomia and my brain's inability to regulate the sleep/wake cycle), mild hearing loss, malformed optic nerves, polycystic ovarian syndrome, pernicious anemia, vitamin deficiencies

* Title comes from an old Abbot and Costello routine that I chose to memorize in 6th grade and absolutely love.