It was time to take a load off: Birth – diagnosis

I played tee ball for the first time in the summer between 1st and 2nd  grade. The year was 1984, and I was on the worst team in the Louisville Parks and Recreation tee ball league. My memories of those early events are sparse and a bit foggy, but I’m almost 40, and that was over 32 years ago. I do remember having two young guys, probably just high schoolers that loved baseball, as coaches. They had sweet mullets and let us ride in the bed of an awesome brown Ford truck with cool chrome rims, dark tinted windows, and loud glass packs in the dual exhaust to McDonald’s after our sole win of the season. That was the coolest thing I had ever been a part of up to that time in my young life. My first foray into the sporting world was also when my parents noticed that I had an odd gait as I ran between the bases of that miniature baseball diamond, which was more red clay and mud holes than grass. Of course, I didn’t notice. I was just a little kid having the time of my life.

 

As I grew, though, it became more and more noticeable to me and everyone around me that there was something physically amiss with me. Whenever someone pulled out a camera, I would try to slip away and avoid being the subject of the lens, because I couldn’t smile like everybody else. My attempts were lop-sided, and I couldn’t show my teeth. Eventually, around the 6th grade, it became hard to bend my arms at the elbow. Then, I started walking with a pronounced limp in 8th grade; especially when wearing my favorite slick-soled Dexter loafers on hard floors. Also by then, it had become hard to raise my hands above my head, and I had to really labor to get myself up from the ground.

 

Things were ever so slowly, physically falling apart, but I fought back. I played baseball every summer until 6th grade when I found out at summer camp that I wasn’t terrible at tennis. Then, the summer after 7th grade, I took tennis lessons from Mrs. Boyd at the courts across the street from Louisville High School. I was such a phenom that she bumped me from her beginner class to her advanced class after just one lesson. After just one summer under her tutelage,  and the lack of interest among most everyone at the high school, I and several of my friends in 8th grade made the high school tennis team. (Keep in mind that making the team was no harder than telling Coach Byrd, who hated that he had to coach anything other than football, that you wanted to play.) There was also an attempt at playing center on the 7th grade junior high football team. While I sort of enjoyed it, I spent most of the time on my back watching the nose guard, B. G., running almost unimpeded over me to our surprisingly elusive QB/ linebacker/ kicker. I wisely spent 8th grade as a manager just piddling on the sidelines but getting to make all the trips with the team.

 

Junior high was also, looking back, one of the most miserable times of my life. I was hitting puberty, and girls scared me to death. While my friends were accumulating muscle mass and sexual prowess, I was seemingly stuck in reverse. They were bench pressing 100 lbs while I was starting to have trouble reaching for a glass in the top of the cabinet. Looking back, I’m pretty sure that the early teen years are probably rough for most kids in one way or another. My overriding impression of the years from when I was 12-14 is that kids are cruel. Don’t let your takeaway from that statement be that I was a complete victim, though. I, at times, took pleasure in pointing out other’s flaws to prop up my own damaged self-worth and can think of several people to whom I owe apologies for specific acts of meanness that I committed during that same period.

 

Then in the fall of 1991, my parents and I decided it was time to seek medical counsel to determine what was going on with me. We started out at the Mississippi Sports Medicine Clinic in Jackson. I remember feeling super cool because the doctor’s office had sports in the name, and there was a kid sitting beside me in the waiting room still in his grass-stained football uniform with an obviously broken ankle judging by how his foot pointed off to the side unnaturally. Anyway, the doctor there took some x-rays and referred me to Dr. Carpenter at St. Dominic’s.

 

He was a neuro-somethingorother doctor that ran several tests, which were undoubtedly from Satan’s joke book, on my muscles. The tests included sticking needles in at either end of a muscle, sending electrical shocks of increasing severity from one needle to the other to measure the conductivity of the muscle or nerve or something. All I know is that it hurt like a bunch of bad words. He also performed a test, whose purpose is still unknown to me other than pure sadism, where he stuck a needle in some random part of me, and as he wiggled it around inside the body part, his computer made a sound similar to the snow on old analog televisions when the station was off the air. It also hurt like a bunch of bad words. Once he put away his needles and stopped all my bleeding, he recommended that I go see Dr. (I hope I’m spelling this correctly) Vedanarayanan at the University Medical Center’s Muscular Dystrophy Clinic.

 

Dr. Veda (That’s what everybody calls him.)  examined me and said he wanted to do a muscle biopsy because he had an idea what was affecting me but needed to get confirmation. I was totally down with the idea of getting to have surgery. It was a big undertaking that I could try to parlay into sympathy points and maybe even some cool points with my juvenile compatriots. I remember that the surgery occurred close to Thanksgiving of 1991 because my arm was still in a sling at our annual Thanksgiving Day family reunion. They didn’t put me to sleep for the surgery on my right bicep, and I could see the inside of my arm via the reflection in the doc’s glasses. It was so cool…

 

A few weeks later I suppose,  we went back to Jackson to get the verdict. It was facioscapulohumeral dystrophy or FSH for short. I imagine my parents were pretty concerned about the tongue-twisting diagnosis, but it was a huge relief to me to be able to finally  know what was going on, that it had been diagnosed in others, and that maybe there was something they could do about it. Weirdly enough, I had almost a sense of closure with the diagnosis. Even though nothing had changed other than this guy in a white coat speaking a nonsense word to me, I felt as though a weight had been lifted from me. Little did I know where my future was headed, though.

 

Lots more has happened since then. I’ve had emotionally more ups than downs, and physically more downs than ups. My life has taken turns and gone in directions that my 13-year-old self could not have ever fathomed, and I am completely good with that. What happened up to that point, combined with where I’ve gone since has made me the man I am now. There are old struggles and new ones that are still shaping and molding me; that are transforming me into some future version of myself that I currently can’t predict. But, you know… is that really any different than any one of us? I may have a disease that limits me physically, but we all have some limitation, or gift, or experience that makes us who we are. We’re all just people looking at and reacting to the world through the filters of our personal experience. We’re all just people…

 

To be continued…

7 thoughts on “It was time to take a load off: Birth – diagnosis

  1. Stephen November 17, 2016 / 9:27 pm

    Robbie I remember you in school though I was a few grades ahead. I am now a physician and think this article is well awesome. Never did I notice anything though now I try and notice all. This is just awesome for parents, patients, physicians and all. God bless and good luck.

    Like

  2. Kim moore November 17, 2016 / 12:49 am

    Robbie thanks so much for sharing. Even if you only touch one child what a testimony you have. By the way my family never felt you were different. Can’t wait to read the next part

    Liked by 1 person

  3. Jeannie November 17, 2016 / 12:05 am

    Robbie, thank you for this wonderful look inside your early life. You told us this remarkable story with your usual candor. I know now how you bacame the superhero you are.

    Liked by 1 person

  4. Anonymous November 17, 2016 / 12:00 am

    Robbie, this is so YOU. You deal with your diagnosis with calm, accepting bravery and dare I say humor. You consider yourself quite ordinary, yet to me you are a superhuman superhero. Thank you for the candid and extremely honest look into that time in your life when you were a boy. I know that you are now a true man’s man and an amazing MAN AMONG MEN!

    Liked by 1 person

    • robbievance November 17, 2016 / 12:57 am

      Thank you. I appreciate your kind words, Someone. 🙂

      Like

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