The First Decade

In the previous installment, I laid a bit of the foundation of my story.

One loose end I do want to tie up concerning my last post. One of the secondary conditions I mentioned, which I ended up diagnosed with, club foot, can come in varying degrees of severity. The turning of the foot/feet can be inward or outward, and can vary from being virtually unnoticeable to being a 90° or worse turn. In my case, both feet turned so severely inward that my toes basically touched.

Also, before I dive in, let me preface with this. My apologies if I sometimes don’t give ages, specific dates, or if I leave large gaps between that sometimes leave you wondering. I’m being as detailed as possible, but also leaving out some of the more minor things.

Now—the building begins.

Depending on the type and severity of Spina Bifida, along with what secondary conditions a person may be born with, any number of specialists may have to make routine assessments, just to make sure everything stays “stable.” In my case, those specialists included:

• Neurological

• Orthopedic

• Urological

Because of the routine specialized care necessary, I was set up with the Commission for Handicapped Children—a now defunct specialty clinic—where all specialists needed would see the patient in one clinic, on the same day. I remained with this clinic until I turned 18, (their cutoff point). Along with this clinic, many, but not all, operations I needed were done at Shriners Hospital for Crippled Children. Most Shriners facilities are stand alone hospitals, but the one located here in Kentucky is now integrated with University of Kentucky Children’s Hospital. Another thing to be aware of concerning Shriners is the fact that some of their facilities are orthopedic care, while others are burn centers. I was associated with Shriners until I turned 21, (their cutoff point).

When it came to the point where most little ones would start walking, a new experience came in my journey. I was fitted with my first pair of specialty orthopedic braces, and given a walker. Over the years, I would wear varying lengths of orthopedic braces, (waist, thigh, and just below the knee), and would transition from my walker to forearm crutches.

By the time I started kindergarten, I had already had multiple operations for my club foot condition, and I had already had to have shunt #3 placed, (for the hydrocephalic condition), as they sometimes clog or otherwise malfunction.

As I have been told, when these malfunctions occurred, I would have to be held, sitting up, as the pressure was so severe that I would be SCREAMING UNCONTROLLABLY, and laying down exacerbated that pressure even further.

Interesting side note here. I still have that third shunt in place to this day, and outgrew the hydrocephalus to the point that I haven’t even been monitored in years. I was told that I didn’t even need the shunt anymore, but as long as it wasn’t causing any issues, we would simply leave it in place.

From there, life went fairly “routinely” until the summer between 4th and 5th grade, in 1991.

I had been told shortly before that I needed bilateral hip surgery, (both hips had been out of place since birth, and they wanted to wait until I got a little older to address it). They would also perform another operation on my right foot at this time. All of this would be divided up into two separate operations over a period of a couple weeks or so.

I turned 10 in February, and I went for this hospital stay in May. Also, my first of two nieces had been born in March of that year, (her sister would come five years later).

I remember arriving at Shriners in the pouring rain. It was more like a large house than a hospital. Along with the appearance, they truly tried to make you feel as though you were being cared for by family members. I specifically remember Terra, a tall, blonde nurse, (yes, 10 years old me smiled big when she came around).

I remember so many aspects of this particular situation—the body cast, (from the chest down to the knee on the left side, all the way to the foot on the right side), I remember the room, the arcing shape of the nurses station, the box of get well cards I received from classmates, the pain from being so stiff when they removed the cast, the two units of blood I had to receive, I remember it all. Two things I remember more than anything. Well, one thing, and one person.

Although I didn’t know what it was at the time, I remember this being the first time I thought/felt, “I can’t do this, not on my own anyway.” But 10 year old me didn’t really know what other choice I had.

Who was the person I remember? A doctor? No. Another nurse? Negative. A therapist, perhaps? Again, no. Now, I do remember people who fall into each of those categories, however, I truly remember Hector.

There were four beds in my room. Two on one wall, two on the opposite wall, the first two were facing the other two. I had two roommates. Henry was from Honduras. I don’t remember specifically what his situation was. Hector, on the other hand, I often wish I could forget. He was a few years older than me, and from Guatemala. Hector had been in a fire, and subsequent explosion. His hair was gone from half of his head, his ear was missing from that side, one leg was completely gone and the other was gone from just below the knee. On the side where he was “only” partially missing his leg, they had attached an external fixator, with pins going THROUGH THE BONE, from one side of the stump to the other. Nurses would come in periodically and turn those pins to STRETCH HIS LEG, INCLUDING THE BONE, so they could later fit him with a prosthesis.

As of this post, what I witnessed with Hector happened thirty four years ago. Thirty four years later, I can still see his face, contorted in pain. Thirty four years later, I can still hear his screams, his pleas to the nurses to make it stop, make it go away. I remember him cursing, because that’s how much agony he was in. Then, when it finally eased up, I remember him apologizing to my mom and myself, because of his language.

Very little of what I’ve been through, (and this is only the tip of the iceberg), very little bothers me. It’s simply been the cards I have been dealt, and I’ve played them as best as I have been able to. Hector…..Hector doesn’t bother me. Hector haunts me. I’ll never forget those screams of torment.

The last time I saw Hector he was on underarm crutches, having been fitted with his prosthetic leg only days earlier, and he already looked like a pro on it.

That’s one of the many reasons you’ll rarely witness me complain.

I don’t deserve your pity.

I don’t need your pity.

I don’t want your pity.

More to come in future articles…..