In Their Own Words

In each issue of the Journal, we will bring you a column that presents the experiences of our members.  Their stories are presented In Their Own Words by way of letters they have sent us.  We are most appreciative of their willingness to share their very personal stories.  It is our hope that through the sharing of these experiences, we will all learn something about each other and about ourselves.  It is our hope that the stories will help us all realize that we are not alone.  We are particularly grateful to those people with Acute Disseminated Encephalomyelitis who wrote articles for this publication of the Journal.  You may submit your stories by sending them either by e-mail or through the postal service to Sandy Siegel.  Please be sure to clearly state that The Transverse Myelitis Association has your permission to publish your article.

Maria’s TM after Four Years
Massachusetts

I have three daughters.  Gabriella has just turned ten; Maria is seven, and Julia is four.  In 2001, Maria was diagnosed with transverse myelitis at the age of 3 ½, just days before Christmas.

It has been difficult for me to write about transverse myelitis.  I’m not sure why.  It has been almost four years since our world was rocked by this illness, and in spite of all the things that have become easier with time, writing about it has not.  Perhaps it is because I am loathe to give the disease, the condition, the syndrome, call it what you will, anymore than it has already claimed.  Perhaps because I refuse to allow TM to define us, I hesitate to attach my name to a writing about it. But the fact remains, we are a TM family, we will always be a TM family, and while TM does not define us, it will always shape who we are, how we interact with one another, and how we venture out into the world.  What TM has robbed from Maria is huge.  The obvious things are gone, the motor dexterity and the balance that translate into the ability to play soccer safely with her peers.  Something more subtle but equally troubling has been robbed, the ability to be carefree in a way that is unique to childhood.  Instead, every minute of Maria’s day is choreographed to enable her to navigate safely from one place to another.  Her day is planned to allow for easy access to bathrooms, to minimize stair climbing, to remove obstacles, and to maximize precious energy.  Her day can only be as smooth as it is planned.

But as I write on this blustery, sunny autumn day, beneath my window a miracle is taking place.  It is the sight of Maria, now seven, on roller blades.  On a day when the wind’s strength has knocked out everyone else’s power, Maria is empowered.  She is awkward and wobbly, to be sure, padded from head to toe, but behold, she is on roller blades.  Although her balance is precarious, she has allowed the wind, literally and figuratively, to carry her.  And her sisters have flown into the house more than once to alert me to this miracle.  This is just one of the ways in which we have been shaped as a family.  Even the youngest of us, Julia, is astonishingly and uniquely aware of life’s “small” miracles, of the enormity of the moment.  As I watch her sisters applaud her accomplishment today, I am renewed for the thousandth time by Maria’s determination, and I, too, celebrate.  Today, I appreciate the urgency of sharing the wonder of what Maria CAN do.  My prior efforts to write about Maria and TM have all begun with the gory details of her onset, punctuated with descriptions of the paralysis, incontinence and excruciating pain that characterize so many onsets.

 As we come upon the fourth anniversary of Maria’s onset, I realize that little is written about what pediatric TM looks like four years out.  Ample literature states the suffocating axiom about TM recovery:  “If you don’t see it in three to six months, you’re probably not going to see it at all.”  But there is a dearth of literature stating what one might actually expect to see in a TM child after three or four years.  So it is with a mother’s pride and pain that I will share with you what I see.

 Perhaps Maria’s most remarkable achievement is her participation in dance.  Both before and after TM, she has taken ballet and tap classes.  In fact, it was merely one day after Maria’s first dance recital that she awoke paralyzed from her neck down.  When I asked the neurologist in the emergency room if she would dance again, he wasn’t sure.  When I asked if she would ever walk again, he wasn’t sure.  “I’ll wait ten years; I’ll wait as long as it takes,” I said.  “How about with a walker,” I asked.  “I don’t know,” was again the answer.  Maria’s prognosis was bleak.

Yet five months after her diagnosis of C-2 TM, Maria danced on schedule in her ballet recital.  It is true that while her friends sashayed across the stage, she was carried in the arms of her instructor, with few dry eyes in the audience, but it was a day she would not have missed.  After each spring recital, I wonder to myself if this will be Maria’s last year dancing, if she will be able to keep up with the agility of her advancing peers.  Each September, I debate whether to re-enroll her in dance.  Sometimes, it feels like trying to fit a square peg into a round hole.  Each year, Maria makes the decision for me with a clarity that is humbling.  She approaches dance with a focus and concentration that I once thought was reserved only for higher mathematics.  Dancing gives Maria undeniable pleasure, notwithstanding her scrunched plies and wiggly tendus.  The result lacks a ballerina’s grace, to be sure, but it is nonetheless victorious.  Any discussion of Maria and dance would be incomplete without mention of her instructor.  Like everyone else on Maria’s team, including the neurologists, orthopedists, and physiatrists, her dance teacher is selected with a scrutiny that would pass FBI muster.  The job requires a person who does not coddle and yet who is compassionate.  We have found such a person in Miss Raquel.  A quirky lady to some, Miss Raquel is perfect for Maria.  She has a gift for encouraging out Maria’s best.  For example, when Maria says “I can’t balance on my left leg,” Miss Raquel replies, “Then that’s the one we’re working on today.”  When Maria falls flat on her belly during dress rehearsal, Miss Raquel changes the routine for the whole class the day before the performance to ensure her success.

Maria can ski.  Thanks to volunteer adaptive ski instructors at Loon Mountain in Lincoln, New Hampshire who are no less than saints in their patience and perseverance, Maria proudly sports ski passes on the zipper of her winter parka.  Like most sports, skiing at first seemed out of Maria’s reach.  Her first attempts on something less than a bunny slope were disastrous.  Flanked by an instructor on each side, and sometimes another skiing backwards in front of her, Maria looked overburdened by adaptive equipment.  It seemed that teaching jello to ski would be easier.  Perhaps, I thought, we’ve pushed her too far this time.  Perhaps we have set her up for failure. Yet after relatively few weekends, Maria was upright on skis, albeit precariously, connecting one “S” turn after another.  This milestone occurred, of course, only after Maria insisted on stripping herself of the adaptive tether connecting her to her instructors and peeling off the adaptive “outrigger” poles.  I hooted and hollered all the way down the hill behind her.  The challenge in these moments for me as a parent is celebrating the achievements of her able-bodied sisters in equal measure.

Maria can ride a horse.  We are always searching for activities that are disguised physical therapy since Maria already receives formal PT two times a week at school and another two times a week as an outpatient in the rehab center of our local hospital.  During the summer months, we took a break from the clinical setting and enrolled Maria in a horse back riding camp where she happily swept the stalls and cleaned the horses’ hooves.  Her pony, “Dusty,” was a tolerant, gentle creature, patiently waiting for Maria when she stumbled on the unforgiving, rocky terrain.  On top of Dusty, Maria looked graceful for the first time I can recall, with no trace of her lumbering, labored gait.  Although tiny in stature, Maria sits tall on a horse, a feat which is a challenge on an ordinary kitchen chair.
     
Maria can read.  It is difficult to measure the effects of TM on learning and there is little guidance on this.  A few things, however, are certain:  baclofen is fatiguing, getting dressed is fatiguing, traveling to school is fatiguing, walking to class is fatiguing.  None of this enhances learning.  By the time the business of reading and writing gets underway each day, Maria is already spent. This needs to be viewed from the perspective that Maria was already behind the eight ball when she started school.  When her peers were learning their letter sounds, Maria was learning how to walk, to reverse direction, and to wear a back pack over her shoulder without losing her balance.  Learning, then, is no less complicated than tap dancing.  But once Maria started to attach value to reading and writing, she started to catch up.  Today, she is a slow but steady reader of “chapter books.”
    
Maria is continent.  Although Maria’s dryness is an imperfect world, it is a universe away from the days of catheterizing her every four or five hours.  It doesn’t take much to disturb the delicate balance of her bladder.  A minor cold can set her back weeks, causing humiliating bed wettings as well as daytime accidents.  But overall, she has achieved a remarkable degree of dryness.
    
As we approach the four-year mark, doctors are becoming a smaller part of our lives.  It seems that for years, our schedule was weighed down by doctor’s appointments and PT.  There were the well visits, and the not-so-well visits, the second opinions and third opinions.  There were the doctors who said that Maria needed a baclofen pump and the doctors who said she needed less baclofen.  There were those who advocated botox and phenol and those who did not.  Much of Julia’s babyhood was spent being shuttled back and forth to her sister’s PT appointments. While I never wanted TM to define us, it certainly took up a great deal of our lives. 

Then one day, something remarkable happened. Last June, Maria had a school picnic to mark first grade “graduation.”  I volunteered to help out at the picnic, as I had at most school activities up until then, to keep Maria safe. That day, as I watched my daughter from the sidelines, a mother, who I knew only casually, approached me and asked, pointing to Maria’s AFO’s, “Does Maria wear those things all the time.”  “Every day,” I replied.  “Wow!  Simon never mentioned that,” she said.  It was incredible that Simon, her pal, admirer, and dancing partner in the class play, had never mentioned Maria’s disability or her braces to his mother.  “That’s amazing,” his mother said.  “Simon talks about Maria all the time.”  On that day, we turned a corner … TM lessened its grasp.
    
We turned another corner this fall.  I have gone back to work full time as a lawyer.  This has taken an enormous leap of faith.  Until now, I have felt that Maria would not get better if I did not dedicate every moment to her recovery.  A sense of urgency has haunted and propelled me until only recently.  I have tried to defy plateaus and setbacks with just one more PT session, one more physical activity, one more appointment. Maria and I have shared a symbiotic relationship.  But this fall, finally, she is busy being a child, not a child with TM, and I am busy being a working mom, not the mom of a TM kid.
   
And this is what we look like after four years.  I don’t know what we will look like in the fifth year or the sixth.  I am reminded of the Christmas plate that, uncannily, I bought on a shopping spree the day before Maria became paralyzed.  The plate, featuring a whimsical snowman, reads, “Just believe.” Four Christmases have passed, four Valentines Days, four Fourths of July … the plate remains, untouched (I won’t allow anyone to remove it), and I continue to believe in the ineffable power of a seven year old’s will.

Leslie Cerio
(781)740-8421
LCCERIO[AT SIGN]AOL.COM