Alphabet Soup…

One of the hardest parts within my job here in Malawi isn’t the language barrier, or the incredibly large caseload of over twenty kids to treat within a couple of hours.  Believe it or not, it is the kids I affectionately call my "alphabet soup letters".

Reading this I’m sure that sounds strange.  That’s okay, it should.  You see many of the kids I treat suffer from incredible tone issues (from extremely high muscle tone to those limp as a rag doll). Those with hyper-spasticity (extremely high tone) can look very contorted to the point of resembling, yes, "alphabet soup letters".

One little girl whose name will remain unmentioned (along with all clientele we treat at COBT as we highly respect patient confidentiality) really broke my heart the first, second and third times I treated her.  After that my skin got tougher but after the first treatment I had to excuse myself and wipe away tears.  She was the letter "O" the day I met her - so hyper-extended was her body that her feet went round her spine, passed her shoulders and over her head. She was “alphabet letter ‘O’”.

My job is to perform physiotherapy and occupational therapy treatments as fits our program designed by our supervising OT/PT.  Within that program is a stretching component.  In other words, it is my job to "undo" alphabet "O".  Know that even a small child who is constantly being held in this position with such high tone is incredibly strong!  Beyond their strength there are other issues to safely stretching them.  Many of the children we treat are malnourished, a.k.a. their bones are fragile!  Now, put yourself in a wrestling match with an eight year old the size of a five year old as strong as Dwayne "The Rock" Johnson, but their bones are fragile like glass.  Still like the romantic idea of running off to another country to help sick children, knowing that if you happen to slip whilst helping you will have broken their little bones?  It's different in person.  Nothing romantic about it.  It's scary and heavy and real!  No World Vision spokesman with a white beard and rehearsed script between you and the images you watch pass by your TV for the 27,000th time.  This isn’t just an image of someone hurt and in need.  NO.  To me she has a name, and she has a mom who loves her so much that she spends hours to get her here everyday for treatment, and then makes the same trek home, though she has additional family members to take care of once she gets there.

Back to that first treatment, I spent more time working on "O" then all the other letters and rag dolls that day.  It had to be done.  My little alphabet needed to not be an "O" anymore.  After endless, slow, gradual stretching I got "O" into a sitting position.  This took the use of all four of my limbs and my head, also about a bucket and a half of blood, sweat and tears (but only after I left the room).  I was exhausted and so was "O".  We both worked so hard!  After my much needed break I came back into the Level 1 Treatment Room, and there she was…an "O" again.  All of that stretching…but the tone always won.

In moments like that strange and hard thoughts come: “What's the point of all this!?”  “Why aren’t you getting better!?”  “Why WON'T you JUST GET BETTER!?”  “Why are you sick?”

You start looking for a reason. “This has to be someone's fault!” but it's not….   It's no one's fault. Pain is in the world, in fact, I'd say it's an integral part of it.  You can't stop it, and it's no one's fault. No one forced "O" into an alphabet letter, she just was one.

Fortunately, I’m writing about this months after the first time I worked with "O".  We got her some meds to help with her tone.  Praise God!!!!  Something wonderful happened when "O" had her meds…she wasn’t "O" then.  No, she… she became "C"!  With the help of the meds her tone was cut in half.  Stretching "C" was a dream compared to the alternative.  Some days when the meds ran out she returned to her old rounded self, but once the meds where restocked and readministerd again, poof!  So long "O", welcome back "C".

I love all of my little alphabet kids.  "O" or "C" (depending on the day) made the biggest impact the first time I met her and is why this whole post is a shout out to her and her rocking mom who gets her to COBT every week.  But, her story isn’t unique.  That’s why I refer to my alphabet "kids" (not just "kid").  They all have rocking moms who make crazy sacrifices for them which is huge.  Some of them have stories like my adult friend Katumanja, but that is a story for another time.

Jason,

Lilongwe from Home
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