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

Sometimes Words Do Not Exist

I have opened this journal several times to write only to find that the words do not exist for what I have been feeling. At times it is difficult, if not impossible, to capture in words the countless layers of emotion and processing of this experience. I am also a highly introspective person, which can be both a blessing and a curse. In a memoir of an individual who suddenly became paralyzed by Transverse Myelitis, he described the process of coping and "grief" as akin to a Tsunami - just when you think you have it under control and you have accepted the changes in your life you realize that was just the temporary calm of the tide receeding to prepare to slam back into the shore. You think the first year is the hardest for adjustment, but as the end of year one approaches it is starting to become a deeper reality that even though I continue to undergo seemingly endless medical testing there will be no treatment awaiting me that will make a differnece in the functioning I currently possess. Unless God decides to perform a miracle, this is most likely as good as it is ever going to get again. I have known that but now I KNOW that, if that makes any sense. Words fail me here. I am still living my life, savoring each moment, and refusing to live on any terms other than my own. Yet things that used to sting hurt just a little bit more right now, like my protective skin is raw and vulnerable. The moment every morning when I wake up, before I remember all that has happened, is incredible in its innocence but the smack of reality that follows a heartbeat later seems slightly harsher. I am more frustrated by the fact that people try to make me fit their image of what someone with a disability should be, creating an image of a saint who does what they "could never do" and is "coping so well" and is "so strong". I am human, not a saint, and I don't remember being given a choice about this course of my life, I am just doing what I have to do in order to live the life I have been given and I have good days and bad days and days I debate with God. I am the same person I was before this happened, and it hurts just a tad more to see how that identity is stolen from me as people struggle to see beyond the chair and their own issues with it. If I tried to find words to describe how I am feeling they would be raw, vulnerable, pensive, introspective, and re-cognition. But these words are not sufficient, they lack and miss the emotion and the experience and the journey. Sometimes words simply do not exist for this thing we call life, but we can learn so much even where the words can not travel.
3 comments:

just remember through all these times you have friends that will always be here to listen, cry, and love you no matter what.
give me a call if you need to talk

SM


I often think of you as TEACHER~
of how to manage trials, how to self-motivate,how to grieve with grace, how to be fruitful,and yet how to live with humor.
When I read your posts I find myself floating along with the waves of words, I am never sure if the emotions I feel will be happy or sad, but I know that you WILL evoke emotions, and that I secretly enjoy!


Well, you might be unsatisfied with your words, but Stacey and I are getting a lot out of them. Stacey also wisely reminds us of a very important descriptive for you is 'teacher'. Feeling very grateful for this eventual effort.

I've been wondering if transverse myelitis had been ruled-out.


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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