I have adventures. Physical, metaphysical, ethereal. Some might call them an odyssey. I call them my Twenties. I am glad you are here.

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    Monday
    Jan102011

    Nooks and Crannies of the Cranium

              Contemporary science identifies the cerebellum as that part of the brain responsible for the coordination of movement and fine motor control.  It is the nexus of grace, the precise operations of which are still steeped in mystery and wonder.  Each new revelation carries with it the concurrent, humbling recognition of the limits of human knowledge and understanding.  Perhaps this gradual accumulation of insight is for the best: it prevents the adoption of an idealized corrective model of human health that marginalizes those persons with malfunctioning parts.

              My wacky cerebellum falls into that category.  At birth I was diagnosed with spastic diplegia, a form of cerebral palsy characterized by a high degree of spasticity and lack of coordination in the lower limbs.  I was born a fraternal triplet, three months premature, and my brain did not receive the proper amount of oxygen needed for standard development.  That theory is the most plausible explanation for my condition, though it cannot be proven conclusively.

              My diagnosis is itself a bit vague.  Cerebral palsy has infinite manifestations: no two cases are exactly alike.  Some folks with spastic diplegia are able to walk, still others have speech and cognitive difficulties.   This condition can be diagnosed at birth or occur after a traumatic brain injury or a stroke.  I've never been able to walk with any fluidity or consistency,  but I can talk (though sometimes my speech is ever-so-slightly slurred).  I have nearly full range of motion in my upper extremities, though I lack fine motor skills and heavily favor using my left hand in daily activities.  I have a slight cognitive limitation related to my depth perception, but otherwise my higher level functions remain intact.  Age has increased my muscle tone, decreased my muscle control, and caused me to develop a host of cosmically humorous and frustrating secondary symptoms that I did not expect.

              I have developed severe osteoporosis.  I have stiffness in every major joint in my body.  My hamstrings have tightened to such a degree they have pulled my spine out of its proper alignment.  Years of poor posture have left me with scoliosis.  Sitting in a wheelchair for most of my waking hours has left me with the squarest ass imaginable and has had funky effects on my circulation.  In my favorite bit of medical voodoo, my out-of-the-socket hips literally touch the bottom of my ribcage.  Doctors always cheerfully explain the sterling logic behind each new development and I am left wondering what new (but fully explainable, of course) surprise awaits me.

              It occurred to me somewhat recently that I have my lived my life in spite of my disability, or perhaps in denial of its reality.  Since I did not want to miss out on valuable classes or social time with my peers, physical and occupational therapy was an activity that only happened between classes in high school and college.  I had approached my disability abstractly, relishing in its  mechanical minutia and the philosophical and socio-political consequences of the ongoing Disability Rights Movement, but I had yet to confront it personally.  Instead, I completed my Bachelor's Degree in English and Philosophy and spent several months floundering aimlessly in the corpse of a job market that awaits all humanities majors.  A fair number of my (able-bodied) close friends from high school and college were moving away, getting married, starting careers, going to grad school, and attaining the seductive autonomy of adulthood.

              Meanwhile, I was stuck at home with my parents, floating from odd-job to odd-job, wondering how the hell I had become stranded in the abyss of stagnation.  My parents have supported me in every way, and made sure that they tended to every detail of my physical care so that I could get an education and have a social life that was as fully realized as possible.  I was concerned that we were all becoming dangerously complacent.  They cannot care for me forever: lifting me and helping me dress, toilet, and shower will eventually become a logistical impossibility.  Even if the current arrangement were sustainable for the foreseeable future, I realized that I needed a change.  Having a parent see to all aspects of care for an adult child can be incredibly infantilizing.

              There are times when I have to remind my parents not to do everything for me, but they are so accustomed to doing everything (or are afraid of the consequences if I fail to do something on my own) that it has become an automatic reflex for them to do it all.  This includes the little things: cutting up my food, pouring me a drank, grabbing me a book or DVD from a shelf, and picking up dropped items.  The intention is understandable, but the execution can be oppressively annoying.  My frustration with those unalterable daily living tasks with which I do need significant assistance is even more profound.  Frankly, it is inherently emasculating to have your mother or father wipe your ass and assist you with showering everyday.  Try to imagine yourself as a sexy, vital individual, under those those circumstances.  It is not easy.

              Since my job prospects were (and remain) non-existent, I decided to enroll in a vigorous physical therapy program.  I was determined to stop the cycle of passive decomposition and turn it into some sort of active progress.  Eight weeks later I hit the wall.  It became apparent that without some sort of medical intervention, I would not be able to reduce my muscle tone and increase my muscle control sufficiently to perform the types of transfers and activities I need to become more independent.

              My therapist suggested I get evaluated for a basic botox procedure in which botox would be injected into the most tense areas of my muscle core (e.g. my adductors and hamstrings) to reduce tone and give me more flexibility and control.  My time in therapy suggests that I have the muscle strength to stand, pivot, and transfer (maybe even take a half-step or two) if my tone were reduced.  Maybe.

              The evaluation for the procedure went as well as I could have reasonably expected.  The specialist who will perform the procedure warned me that my contractures  might be operatively limiting movement as much as the muscle tone; he expects any improvement to be moderate at best.  Additionally, I will undergo 5-7 weeks of serial casting after the procedure to keep my legs at the highest point of tolerable flexibly and retain the greatest possible effect of the procedure.  Five weeks of full leg casts for a procedure that may not even work is a pretty significant investment of time, but it's a gamble I'm willing to take.  Failure does not scare me and complacency is an indulgence I can no longer afford.

              The procedure will happen in about a month.  I figured launching this website could be a useful way for me to force myself to be constructive and active during my recovery.  This space won't be an active accounting of that recovery.  I intend it to be a place for all kinds of adventures.  You will be privy to the books, films, music, television shows, current events, and people who captivate me.  I'll be digesting a lot of stuff as I grease the wheels for my hopeful entrance into grad school in the fall.  I'll share the things which interest me here.  I suspect at least some of the material will be geared towards ruminations on life with a significant physical disability, but not all of it will be.

              The name of the blog is "Dave's Cerebellum" because I wanted a sly way to reference that thing which informs (but does not define) my existence.  It is also source of endless amusement to me that word "cerebellum," translated from Latin into English, means "little brain".  Depending on the context, that translation can either be a clever description of the function of a certain lobe of the brain or an ironic pejorative.  Since my intellectual reach often exceeds the precision of my grasp, I think the "little brain" subtitle is particularly apt.  It will remind me to keep my massive ego in check and to weigh my words carefully.

     

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    • Response
      Cerebral palsy has many different clinical presentations. It all depends upon the part of brain being effected and also upon the magnitude if effect. Cerebellum is responsible for coordination and control. If this part is effected than person might find movement as difficult.
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      Response: msqrd app
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      Response: botulinum
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    Reader Comments (18)

    Dave, you are without doubt one of the most extraordinary people I know. I am proud to call you my friend. I wish you all the luck and good wishes I can muster for this course in your life.

    January 13, 2011 | Unregistered CommenterAdrian

    Echoing Adrian, going to keep all the good vibes I can heading your way. Looking forward to reading more. Also, I knew you had a twin sister, didn't know you were born a triplet.

    January 13, 2011 | Unregistered CommenterRyan

    Great post Dave. Best of luck with this procedure and you know where I am if you need anything.

    January 13, 2011 | Unregistered CommenterJessie

    Good stuff, bro. Proud of you for taking the time and putting this all down "on paper." I expect big things from you and this.

    January 13, 2011 | Unregistered CommenterKevin

    I look forward to reading your musings on the road of recovery Dave. Realize that lesser men would have given up long before this. You are a testament to the strength and resolve we all should have. Godspeed good man!

    January 13, 2011 | Unregistered CommenterPaul

    I could meditate for two hours a day for the next ten years and still not end up with an attitude as good as yours. You make me feel like an alien anthropologist; I have no idea how you do it.

    January 13, 2011 | Unregistered CommenterJimski

    David, you are so brave. Not for having a disability--you get no bonus points for that--but for making difficult decisions, for choosing the harder path, for facing all of these things head on and for being so open about the process. You impress me and when you aren't doing that, you inspire me, and when you aren't doing either of those things, you just make me smile.

    PS: The first items for the Official Dave Carr Recovery Care Package were purchased this weekend!

    January 13, 2011 | Unregistered CommenterMegan

    I really admire your courage, both in your drive against complacency and in your candor as an essayist. I'll be watching this blog with great interest.

    January 13, 2011 | Unregistered CommenterPaul Montgomery

    Wonderful post! You are a lovely writer--engaging, clear, informative, amusing. Write some more, please, so I have good things to read.

    January 13, 2011 | Unregistered CommenterCelia

    This is an extraneous note, but I like the format of your page--subtle, clean, uncluttered.

    January 14, 2011 | Unregistered CommenterRyan

    :]

    January 14, 2011 | Unregistered CommenterJessica

    "floundering aimlessly in the corpse of a job market that awaits all humanities majors" You have such a way with words Dave. I expect nothing less.

    January 14, 2011 | Unregistered CommenterPete

    Dear Dave,

    From the first day I met you I knew that you were going to great things. Things that will shape the face of man kind in some way or another. I am really proud of you for taking the road less traveled. Stay stong and make it happen. I know you can do it.
    I hope that someday, after you have all of your adventures, that you write your memoirs. But I have one request, please do it in a series. I want to have more than just one Dave Carr first edition. Maybe even signed.
    In the mean time please keep us informed with how you are doing.

    Best of luck,

    Steve

    January 14, 2011 | Unregistered CommenterSteve

    Dave Carr!

    Since our little "run-in" in 8th grade, we've been the best of friends. I'm excited about this website and look forward to reading all about your adventures! You are truly a brilliant writer and a wonderful person. I feel so lucky to have you in my life! You're always in my thoughts and certainly will continue to be with what's coming your way... I'm excited for you!

    January 15, 2011 | Unregistered CommenterAmanda Wagner

    Dave,

    This first post is as unassuming, eloquent, honest, and therefore gripping as I have come to expect from you. Have you ever considered journalism as a career path? I (and many others I'm sure) would read your work. Let me know if you ever need someone to bounce ideas off of or to help edit, I'll always be more than happy to aid you in this worthy endeavor.

    Looking forward to reading more, and best of luck with the procedure,
    Care

    January 15, 2011 | Unregistered CommenterCarolyn

    This is a fantastic first post, Dave, and I'm sorry it took me so long to read it. You express yourself so incredibly well, and I'm in awe of your positivity and ability to spread joy and love to everyone you meet. If karma is real, you've got more than enough to bring you a speedy and effective recovery, but I'll be sending all my own vibes, too -- and, of course, reading whatever you write.

    January 17, 2011 | Unregistered CommenterJennifer

    I wish you the best possible outcome.

    January 18, 2011 | Unregistered CommenterErica McGillivray

    Go west, young man. Go west.

    February 8, 2011 | Unregistered Commenterdon boody

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