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

A Fraternity I Never Pledged

Today I was feeling unusually decent in terms of my energy. I have days where I am capable of rolling myself places, and days when the trip from the bedroom to the couch is a feat of great accomplishment. Whether this is a result of the PSP (progressive spastic paraparesis/paraplegia) or the dysautonomia, or any one of the other alphabetical soup disorders I have is up in the air. I think at this point we could pick any one of them and say that yes it could very well be a cause of the variable levels of energy, of strength, and of functionality. So today was a very good, unusually good functioning day and I decided to take full advantage of it. It is a cool fall day here, with bright sunshine and a crisp breeze that causes the leaves to rustle and washes away any remnants of summer. I first ventured to the local library to get a library card, and found myself there in the midst of their toddler story time. Normally this would be precious to me, but we are entering flu season and I am allergic to the flu vaccines. Thus normally sweet and precious little children now appear as germ factories and virus carriers to me until spring slowly transforms them back again. I stayed on the "grown up" side of the library until the walking germs dispersed. While hanging out at the library I found three books I want to read, which is a very small haul for me at a library but I currently have a stack of books that I am still waiting to read left over from my birthday. Besides, it is a pretty short roll so I can go back on most decent days. Then I rolled myself to the grocery store. On the way from the library to the grocery store I encountered my least favorite feature of engineering- the supposedly accessible sidewalk cutaway that is anything but wheelchair accessible. I spent a good 5 minutes fighting against gravity and poor engineering trying to get up onto the sidewalk from the driveway of a business without either 1) dumping my chair and myself into a heap on the ground or 2) dumping my chair and myself into a heap in the middle of the road. Finally I somehow cut an angle and got traction from the grass alongside the sidewalk and with brute force and prayers got up to the sidewalk. I was more proud of that victory than I was proud of just about any other accomplishment. So I began rolling again and realized that a car had just pulled into the driveway of the gas station, and was going to be obstructing my path. Not a big deal, I would wait for the car to turn. Then the person in the car waved at me. Strange. I am pretty new to this small town, and I do not know a lot of people who would be waving at me but to be polite I hesitantly waved back. Then the window rolled down and a guy stuck his head out of the window. Now I knew I had no clue who he was, and I was not so sure this was a situation I was particularly fond of finding myself in. "Haven't I seen you at the mall before?" He asked me this, and inside I started laughing as I wondered if that was some sort of pick up line, and if so just how pathetic that line was even when compared to old and worn ones. "Um, yeah, maybe." "I'm in a wheelchair too." With those words, the walls fell down and we instantly knew - we knew a good deal of what life was like for each other. There was a connection like finding a brother or sister, like a member of a secret society or a vetran of a war. In those words he told me that he understood what it was like to be struggling with rocky sidewalks and people staring and the joke of accessibility and the frustrations and the stubborn will to not let it define you. I grinned at him and said "Oh, okay!" I know, nice response! What can I say, I am a dork?!? He introduced himself, and I introduced myself and then his turn was clear so he pulled away. With a smile on my face I continued to wheel my way to the grocery store,  no longer ashamed or angry about the battle I had waged with the sidewalk because I knew there were others who had been there and done that. I am a part of a fraternity that I never chose to pledge, that I never signed up for but that life pledged me into courtesy of SPS. Others are pledged in by spina bifida, cerebral palsy, multiple sclerosis, or spinal cord injuries among others. Once you are a member you are a member for life because you never forget your experiences and your life is changed forever. And you always respect another member because you automatically know two things about them when you meet them 1) they are facing obstacles and frustrations that are common to most everyone who uses a wheelchair in addition to their personal challenges in life that we all have and 2) they are chosing to get on with life anyway. It is a sense of not being alone, of not being the only one who curses curbs and laughs at "accessible" entrances and wonders who decided the angle of the ramp and if they were deranged or just evil and loves clear downhill sidewalks without any cracks in them and does not take little things like reaching an object on a shelf, tieing your own shoes, or taking a step forgranted. It is a fraternity you hope to never join, but if you do you are glad to know there are others there with you. Now I just need to learn the secret handshake!
2 comments:

Great post, Bethany (as usual).

I see some new stuff in your sidebar! Like those new quotes on top - nice. Isn't the BlogHerAd new? And, a photo. You are too cute! Love red hair. Brings out my maternal side, and yes, I am old enough to be your mother. ;)


Thanks! Yes, there is some new stuff on the sidebar. I cursed the red hair growing up because it is also naturally very curly and I heard every reference to Little Orphan Annie, and many times all of them within a single day. Now I like it most of the time. :) For some reason I tend to bring out the maternal, protective side of people - I don't know if it is because I look so much younger than my age, or if it is the weird combination of wisdom and innocence I have had since childhood. Odd thing is, I bring it out in people who are not even older than me! :)


Job 8:21

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



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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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