We All Fall Down
Ring around the Rosies
A Pocket full of Posies
Ashes, Ashes
We All Fall Down
The other title I considered for this post is "London Bridge is Falling Down". I am going to keep this short (I hear the giggles as nothing I write ever ends up being short) because I am so very tired - physically, emotionally, spiritually.
To begin with, the diagnosis of Mitochondrial Disease that the neurologist was so certain about that he had me begin to receive services through the MDA turns out to be yet another wrong diagnosis. The DNA testing came back negative. I made the mistake of believing in a doctor, of believing in hope, of having faith in an answer. We are way back at the beginning of no one having any idea what this is. The neurologist from MDA wants me to be seen at the Mayo Clinic for evaluation, but I have no idea how financially that is possible given the cost of transportation, accommodations during the stay, etc. I am getting to, if not at, the breaking point where I just want to scream enough. Enough being a science experiment and a case study and a lab rat. Enough living my life in pursuit of something we may never find, in pursuit of a name that would most likely change nothing. Enough wasting precious time in this relentless cycle of testing and doctors and false hope and let down and more grief. Enough being defined by what is broken and time to start living and being defined by who I am and all the parts of me that work!
On top of that, last week I thought I had some sort of mild infection - mild to moderate fevers, extreme fatigue, muscle pain, headaches, etc. Instead it appears that the same cluster of symptoms that began this entire nightmare back in oct 2008 is making an encore appearance. I am constantly nauseous, struggling to drink enough fluids to stay hydrated, no appetite, gagging and choking on many foods (dysphagia), severe pain after eating, muscle pain and weakness, headaches, an effortfulness to breathing even though o2 sats are good. There is a good chance this is another episode of the dysautonomia or unnamed neurological disease that caused the loss of abilities 18 months ago, but to be sure testing is being done to rule out anything treatable. Right now I am eating better than I was at my worst but far worse than at my best. My main food groups are soggy cheerios, pudding, jello, super soft noodles, toddler ravioli, and soft bagle pieces. I gag on the last three but not enough to stop me from eating them.
I really want to write more, but it was a long, busy day and I need sleep. Thanks to whoever reads this garbled rambling - I appreciate you more than you know!
No Dreams
No dreams of front porches with wooden rocking chairs
To while away the hours of an autumn in a life
No illusions of grandchildren gathered round and drawing near
To listen to stories of way back when and years ago
No dreams of newborn nurseries with wooden rocking chairs
To gently soothe the restless hours of spring in a life
No illusions of children gathered round and drawing near
To listen to favorite bedtime stories just one more time
No dreams of a world without the presence of a wheelchair
To make accessible the fragile summertime of a life
No illusions of replacing those old hiking boots
To draw nearer to God in his creation once again
No dreams of a world with seamless, endless guarantees
To string days upon days without illness, without winters end
No illusions of youths invincibility, immortality
To draw bravado and contentment with simply being alive
No old dreams remain, those dreams from before
To hold on to them is to grasp at a wisp of a ghost
No illusions of promises but no fear of tomorrow
To live life with passion, to create no regrets
Adaptations
- Justice Felix Frankfurter
This time of year, with so many graduations taking place, I decided to write about the accommodations that I received from Vanderbilt University through their Opportunity Development Center because of my medical issues. The first major accommodation was that I was provided a copy of the professor's lecture notes or power point slides before class began. This was because taking notes is difficult for me; I lack the fine motor skills to write at any speed for any length of time and even typing can become tiresome. The school offered a note taking service, but I found this lacking because of several reasons: 1) Handwriting, 2) the notes did not have to be turned in until a week after a class session making it difficult to study for tests, and 3) what one person needed to note may not be what I needed to note.I was also allowed to tape record class sessions to review at a later date and improve my notes. One professor even allowed me to leave a tape recorder with one of her TAs who would record the class session for me if I was absent.
The second major accommodation was for taking exams. I took all of my exams by computer with extended testing time. I used a computer because of the previously mentioned difficulty with writing. The extended testing time was to allow for the speed of typing and for any glitches such as printers getting stuck. Some Profs had me take the test via laptop in the classroom, some had me use a computer at the ODC, and others had me use one of several computers in a small never utilized lab.
The third major accommodation was transportation on campus. At that time I was unable to walk on the hilly campus from one side to the other (a good mile) in the time allowed between classes. An offer was made to purchase a power wheelchair for me, but I refused because I wanted to maintain as much independence as possible. So after a LOT of problem solving, the university arranged to have the medical shuttles transport me from one side of campus to the other and back again on schedule with my classes. A few times I was forgotten and left stranded some place but overall it worked well.
The fourth major accommodation was student housing. Freshman year I was supposed to have a single (one person) dorm room in a dorm with elevators and washer/dryer. I ended up on the 3rd floor of a walk up dorm. When I tried to talk to my RA about this, she told me that there was no way a change would be made and basically to suck it up and deal. She also told me I would not last through the first semester. I wanted to pin my first semester 4.0 report card to her forehead. So when housing arrangements for Sophomore year came around, I had to meet with the dean of housing. It turns out he had accidentally put me in the walk up dorm and would have fixed it immediately; he even offered to fix it then but it was the beginning of April and school ended the beginning of May. So I was allowed first pick of the dorm rooms prior to the lottery assignment system due to my medical needs, and I chose a single (one person) dorm room with a private bathroom. It was the largest of the 3 rooms like this on campus. I needed special housing because of the need to sleep during the day, the need to reduce germ exposure, and the need to have my own bathroom for bladder problems, I was able to keep this room for the remainder of my time in college.
The fifth and final major accommodation was with the class registration system. Because when I selected classes, I carefully planned out a schedule with time for breaks and rest in between class sessions, I needed to be accepted into the course numbers and sections I selected. So the computer system was given a code with my name that guaranteed I would be allowed enrollment in any course I requested. This way I could not be bumped to another section meeting at another time, or wait listed for a course.
These accommodations did not give me an unfair advantage, instead they helped level the playing field with my peers so that I could perform to the best of my ability without symptoms of my illness/disability limiting my abilities. There are many more accommodations that someone with a disability can request if necessary, including having textbooks on tape, having exams read to them, using dictation for exams and papers, visual door bells for someone with a hearing impairment, braille textbooks, and wheelchair accessible dorm rooms.
And the survey says.....
Every month Vanity Fair magazine has a short interview, called the Proust Questionnaire, that they do with someone famous or powerful or more than likely powerful because they are famous. Seeing as how I have hit a dry spell with topics to write about (be prepared for old teaching stories soon), I decided to interview myself using this Questionnaire.
What is your idea of perfect happiness?
Knowing that I am loved and that I love others unconditionally
What is your greatest fear?
Failure, being defined by my illness instead of my passions in life and my longing to make a difference
What is the trait you most deplore in yourself?
Worrying and Doubt
What is the trait you most deplore in others?
Hypocrisy
Which living person do you most admire?
Sarah from Sarah's Covenant Homes (see link on side bar) - she is doing what I have dreamed of doing and rescuing children who are "tossed away" simply because they have special needs
What is your greatest extravagance?
Fancy flavored coffee for Klaus, my Keurig coffee pot; apps and music for my iPod (I use it for coping)
What is your current state of mind?
Processing and deep in thoughts, wandering within itself
What do you consider the most overrated virtue?
Pride and Independence - the inability to ask others for help when needed
On what occasion do you lie?
To protect someone's feelings (sometimes)
What is the quality you most like in a man?
Love of children, ability to engage with children and truly kneel down to be at their level
What is the quality you most like in a woman?
Being above the pettiness and back stabbing that goes on too often in friendships
Which words or phrases do you overuse?
"suck" a duck - I have no idea where this came from, and it may not seem like it but my kids have taught me a varied and creative cursing vocabulary
What or who is the greatest love of your life?
God
When and where were you happiest?
Walking the boardwalk in Ocean City; Hiking
What talent would you most like to have?
Artistry
What is your most treasured possession?
My journals and books and binders and scraps here and there that contain my writing
What do you regard as the lowest depth of misery?
Celebrating a child's 5th birthday and then two weeks later having her funeral
What is your favorite occupation?
Teaching children with special needs
What is your most marked characteristic?
"No one puts baby in a corner" (I had to get a Dirty Dancing reference in somehow); an odd mixture of fragile innocence and wisdom almost beyond a single lifetime
What do you most value in your friends?
Their willingness to be there through the good and the bad, to never give up on me, and to see me for who I am
Who is your favorite hero of Fiction?
Jonas from The Giver
Who are your heroes in real life?
Children with disabilities who have to work exponentially harder to achieve a goal and who push, who strive, who work and work without giving up and usually do so while still laughing and smiling and just being a kid; and the parents of these special children who serve not just as parents but as nurses, therapists, social workers, advocates and so much more
What is it that you most dislike?
The fact that it is still socially acceptable to use slurs against people with disabilities and that we have yet to achieve tolerance, let alone acceptance
What is your greatest regret?
I try to live life with no regrets
How would you like to die?
So old and well lived that I welcome death with open arms, ready to step into the new eternal life that awaits me there
What is your motto?
I will stand back up. You'll know just the moment when I've had enough. Sometimes I'm afraid and I don't feel that tough, But I'll Stand Back Up! (Sugarland)
Dysauto-what?
Dysautonomia is a term I utilize frequently on this site but have never, to the extent of my memory, really explained in any depth. There is a brief synopsis on the right hand side under "who's on first" but not a lot of detail. Severe non-familial dysautonomias like I have are considered to be extremely rare and therefore not a lot of research has been undertaken in pursuing their causes or treatments. To begin at the beginning, which is usually a good place to start, the word dysautonomia means a failure or malfunction of the autonomic nervous system. The autonomic nervous system is like the cruise control of your brain - it handles all of the automatic functions that your body must do minute to minute, hour to hour without conscious thought. It is absolutely amazing to consider how much our bodies process and maintain without any conscious input from us. In dysautonomia, this auto pilot or cruise control does not work right and so all of those automatic functions are at risk of being compromised. Symptoms vary from person to person, but I will use my particular presentation to illustrate what life with dysautonima can look like.
Neurological symptoms: Ataxia (difficulty coordinating and maintaining balance in space), Lack of proprioceptive awareness (not being aware of where my body is in space), Severe migraines, Difficulty concentrating, Absent circadian sleep wake cycle, inability to feel thirst or hunger, dizziness and near fainting from low blood pressure or low blood sugar
Respiratory: Severe apnea as an infant, Easy shortness of breath upon exertion
Cardiology- Postural orthostatic tachycardia syndrome, episodes of ventricular tachycardia, extremely low blood pressure, arrhythmias
Dermatology: Inability to produce the natural oils that protect the skin
Endocrinology: Inability to regulate body temperature (get fevers for no reason, or when in a hot environment; also drop below normal body temperature for no reason but especially in a cold environment); high risk of heat stroke, absence of the ability to sweat even when extremely hot, frequent episodes of low blood sugar usually from not eating due to not feeling hunger
Urology: Neurogenic bladder, bladder spasms, frequent infections
Gastrointestinal: poor gastric motility, delayed gastric emptying, IBS like symptoms of alternating extremes, abdominal pain, bloating, frequent severe nausea, dysphagia
Others: Dysautonomic crises or what I call crashes when my BP drops radically, my heart rate and rhythm become unstable, I develop a severe migraine, severe nausea sometimes with vomiting, dizziness, personality changes; severe fatigue
Some of these symptoms overlap with the Mitochondrial Disease, so it is difficult to tease out which are strictly from dysautonomia and which are from Mito. But it does demonstrate that it is a disease that impacts your entire body and your entire life. All because somewhere in my brain the messages get scrambled and discombobulated and can not process correctly.
Perspective
This photograph is one that I took of the shadow that I create when I am using my wheelchair. Often it feels like the world views me just as I am in this picture, indistinguishable and defined solely by the wheelchair that I use for mobility. I just felt like this image captured those moments, that experience, perfectly.
- Posted using BlogPress from my iPhone
Speechless
- Posted using BlogPress from my iPhone
I have been playing with my photos on my iPod and decided to share a few creations. Enjoy and I will be back with a real post soon!
Loss
"He that conceals his grief finds no remedy for it." Turkish proverb
"Give sorrow words. The grief that does not speak whispers the o'er fraught heart, and bids it break" William Shakespeare
"If you suppress grief too much it can well redouble." Moliere
"The risk of love is loss, and the price of loss is grief. But the pain of grief is only a shadow when compared with the pain of never risking love." Hilary Stanton Zunin
"There is no grief like grief that does not speak." Henry Wadsworth Longfellow
This is going to be a heart-wide-open, raw and vulnerable entry; there will be no attempts made to dress up my emotions in their Sunday best and tie pretty ribbons around the truth nor is it dressed in rags for dramatic effect. It is real, it is pure, and it is honest.
Lately I have been dealing with a grief I have never experienced before, and a grief that is difficult to process or explain to others. I hurt deeply, ache as though my heart may fall apart, have times of feeling bitter anger, and at times am sadly resigned to the situation. I am mourning the loss of so much of my life, the things that brought me such joy and defined who I was as a person and shaped my existence, and the loss of countless dreams that are now forever out of reach. It is not just a loss of what was but a loss of what could have been, a loss of the past as well as the future. In many ways I feel like some part of me has died. I go on with my life, I have good days and days of laughter and treasured memories, but something is achingly absent like a part of me has been cauterized. I don't want that old self to die, I don't want to surrender those old dreams, I don't want to admit defeat and have to allow this to change my life forever when I was so blessedly happy before. For the past 18 months I was able to lie to myself and hold on to the illusion that there was still some chance that there would be a treatable, curable diagnosis identified and I would be able to resume the life I had been living as if it had just been put on pause for a while. Now that I have a diagnosis of Mitochondrial Disease, I have to accept that there is not only no cure but no treatment. That this is a progressive disorder which may continue to steal away parts of my life, continue to rob me of dreams, continue to deny me of aspects of life that I use to define myself. If I did not live my life full out, living in every moment, living with no regrets, living at 100% with passion I would not have so much to grieve, but then I would not have so much love in my life either. It hurts more because I live more, I push boundaries, I defy expectations and definitions, I play by my own rules and love openly - love life, love others, love God.
Yet I mourn so many losses. I mourn the loss of my independence, for I have always been fiercely and proudly independent. I miss being able to just decide to go somewhere, to go exploring or on a short day adventure and not be limited to the ability of others to transport me. I mourn the loss of my physical abilities. I will never again chase after my niece and scoop her up in my arms as she squeals in laughter. My feet will never feel the rocky ground beneath them as I hike up the side of a large hill, using my arms to pull myself upward. Kneeling on a tiled floor I will never again guide the feet of a child as they take their first tentative steps. I mourn the loss of many of the things that brought me great joy and served as ways by which I defined myself - my work as a teacher and a volunteer, my passion for photography (it is much harder to access places to photograph and the angle is different in a wheelchair), my love for nature and hiking and exploring. I mourn the dreams lost, large and small. Dreams of ever being allowed to provide foster care or adopt children (I long ago understood that I can not risk having children of my own), dreams of hiking parts of the Appalachian trail, dreams of missions trips, dreams of dancing someday at my wedding, dreams of classrooms full of children.
I recognize that I can, and am, creating new dreams and a new sense of self but for now I am still mourning what I lost. The wound where it was ripped away is still too tender and too fresh to withstand the abuses of life without pain. It takes time, it takes patience, it takes growth of those new dreams and that new hope, and it takes acceptance of the grief.
