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

One Slice of Life, Hold the Pity

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Perhaps it is a result of having literally grown up from infancy with significant medical issues, but one of the fastest ways to witness my honest redheaded German Irish temper is to pity me. I detest the word pity, I detest the connotations of the word pity, and I loathe being on the receiving end of it. To me "pity" is a direct message that my life and existence is clearly less than that of others, and for that someone feels great sorrow. Pity brings to mind images of helplessness, of brokenness, of one step below whatever "normal" is in society. I don't want pity any more than I want the Bubonic plague or head lice or the Swine-dog-bird flu hybrid. My life may have radically changed without anyone bothering to ask my permission, but that does not mean that I have changed. I have never defined my identity, my worth as a person, my value and meaning and purpose by my body. Who I am and what I am is so far beyond my body, my body is just a storage container and a tool. Sure, some people have containers that are less dinged up by life than mine, but are the contents the same? Have they learned just how precious each and every single moment of life truly is? Do they know the joy of celebrating the small things? Can they witness the world through the eyes of a child, full of wonder and amazement? Are they living in a world focused on materialism and "more", on things that do not matter, or a world that is clear on the things that truly have meaning in life - love, helping one another, relationships, memories, the moment, one another? Do they carry with them the education of three years of the world's wisest professors, of children the world sees as having disabilities but who have wisdom, joy, perseverance, determination, faith, hope, and resilience beyond measure? Can they say that they have lived their lives with no regrets?
I don't want to sound like I am a saint, because I am as flesh and blood human as anyone else. Just yesterday I had a moment of sarcastic bitterness that escaped. For twenty minutes I listened to a young woman loudly and proudly describe in vivid, and lewd, detail to her friends how she was actively destroying her life and taking her three year old daughter along for the ride. As she skipped off of the bus and walked away, I could not edit the comment that came out. "And SHE gets the legs that work?!?" I use sarcasm and humor to deal with situations, like people who stare or ask rude questions. I have run into people with my wheelchair because they walked directly in front of me, having made eye contact with me but deciding I could stop for them and I was not about to wear the skin off my hands for them (there is no ABS on my wheelchair, sorry. And the leather on my gloves is expensive too.). But I don't want pity, or anyone to feel bad for me. I do want understanding, knowledge, accessibility, awareness, and some good old fashioned manners. Heck, if a girl can dream I would love to have people stop thinking that handicapped parking spots are also designated for the lazy. But save the pity. My life may be different, it may be hard, but it is so worth every second and so much more than what you see in a body in a wheelchair.

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.

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