Melissa drove us to the mall. We got out of the car and started walking towards the mall from our parking spot. That is when it hit me. I was so vulnerable. I had to be extra careful watching out for cars and people. I was feeling a little anxious. I felt sort of helpless walking around amongst other people. It is not like the Short Pump mall is dangerous or anything but my whole adult life, I always felt pretty confident no matter where I went. I always had a great defense against wrong doers who might want to confront me for whatever reason. If someone wanted to bully me, fight me, intimidate me, or otherwise mess with me, they would have to catch me first. I have always had pretty explosive speed. I could go from resting nicely to running and jumping at full speed in an instant. I did not have to warm up or anything.
But now, explosive speed was not an accurate phrase to describe my current ability. As I made my way through the mall, I had to keep looking around and pick my way through the obstacles of the outdoor mall. I never thought of directories, trees, signs, thrash cans, etc as obstacles but that is what they had become.
It dawned on me that my brother John must have had this very same feeling his entire life. John was born with Spina Bifida. Spina Bifida is a birth defect. I have pasted in the Wikipedia definition of Spina Bifida.
Spina bifida (Latin: "split spine") is a developmental birth defect caused by the incomplete closure of the embryonic neural tube. Some vertebrae overlying the spinal cord are not fully formed and remain unfused and open. If the opening is large enough, this allows a portion of the spinal cord to stick out through the opening in the bones. There may or may not be a fluid filled sac surrounding the spinal cord. Other neural tube defects include anencephaly, a condition in which the portion of the neural tube which will become the cerebrum does not close, and encephalocele, which results when other parts of the brain remain unfused.
When I was a kid, we just said "born with an open spine." Nowadays Spina Bifida can be treated while the developing baby is still in the womb. But 40 years ago, when my brother was born, this was not the case. Most people born with Spina Bifida during this time period were confined to a wheel chair. However my brother was rebuilt. By the time he was 12, he had had 24 major surgeries. That is an average of 2 a year. And these surgeries were not arthroscopic knee surgery, thumb surgery, etc. There were serious, long operations. Open heart surgery, open head surgery, bones rotated, muscle taken from one part of the body and transplanted into another, pins in the bones, steel rods in the back, body casts, etc. After all his surgeries, John is now able to walk with a crutch and he works full time at a credit union in Vienna, VA.
John is an amazing dude. He has put up with so much physical pain but still has a great attitude and is a really nice guy. He wears his heart on his sleeve and is a very compassionate person.
Whenever I have been going through an injury or having a tough time during a race, I just remember how lucky I am. Even now, I can walk pretty darn well. I can balance on one foot. I can take my wallet out of my back pocket without having to lean on anything. I can easily pour a bowl of cereal and carry it downstairs with a glass of apple juice in the other hand. These seemingly simple things are not so simple for my brother.
Lately most of the pain I have in my left knee is experienced while dressing and undressing, taking my shoes on and off, getting in and out of the car, and other simple things. John has always worked hard at these tasks that most of us take for granted. And I have always remembered that fact during any of my injuries. One time when John was in his second or third body cast I asked him if it hurt. His response was, "Yeah. But it will eventually go away." I always keep that in mind.
But this trip to the mall after my surgery really struck a chord with me. John and I used to go to Tysons Corner and crowded movie theaters in Northern Virginia all the time. John would hold on to my belt loop as I lead him through the sea of people that are always out and about in Northern Virginia where I grew up. Young kids would often stare at him and his wobbly gait. Sometimes John would whip them a face that said, "what are you looking at, punk." These trips must have been a little stressful for John. I was confident that nothing would ever happen to him because I was not going to let anything happen. We were very close growing up and spent lots of time together hanging out, throwing the football around, and even kicking the soccer ball around. But looking back at it now after my trip to the mall, I never realized that these simple trips to the mall were probably not only physically taxing on John but also mentally exhausting as he had to navigate all the obstacles and deal with the feeling of vulnerability.
Well I did not last too long at the bookstore that night before my knees started hurting and I had to get back to my couch and my ice. But it was a great idea to get me out of the house and jump start my system with some anxiety. Sometimes a little anxiety can be ok.
Next time, I will give you some more details about my recovery and follow up doctors visits. Soon I will have you all up to date. I imagine that once you are all up to date, the vibe of the blog might change. Maybe not but possibly. I hope you will still stay with me through out. I already know that I have another great story to tell that is unrelated to my main topic but I will have to wait until the time is right.
1 comment:
Your account of John’s Spina Bifida was both moving and revealing. We take so much for granted with our good health and rarely think of the severe difficulties others experience even on a daily basis! Twenty-four serious operations is quite something!
Your own rehab seems to be rolling along pretty well. Hopefully by spring you’ll be back to full throttle.
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