I'm a Winner

Our son, Sraya, recently participated in the Pen 2 Paper writing contest held by the Coalition of Texans with Disabilities. Sraya won honorable mention in the contest. Laura Perna, who ran the contest, wrote this to him last week, “Sraya, you were the youngest entrant to the contest, and I want to show people that a person's age doesn't keep them from writing maturely and candidly about their life and disability. I hope you'll continue to pursue writing as a craft!” Here is Sraya’s essay, which Laura wrote to me previously, had a “voice” that she felt was more mature than many other entrants.

I’m a Winner by Sraya Gruber

Hello, my name is Sraya and I am nine years old. I am also visually impaired. I am going to write about my other disability, which is the pain in my feet. I was born with flat feet. When I was little, my parents took me to the doctor. The doctor said that I would not have any problem with my feet. I guess he was wrong.

Last year, in 2009, during the school year, my feet started hurting. I had problems running in P.E. I also had problems walking home from school. I even started limping.

The pain made me feel angry and frustrated. I tried to fight it, but it hurt so much. I always came home from school sleepy and tired. When I would do homework I liked when my mom would massage my feet because they hurt. Sometimes I even liked taking long baths after school.

Before the school year ended my parents took me to the pediatrician. He sent me to do blood tests to check if there was something serious that was causing the pain. I was frightened during my first blood test, but I did not cry. My mom told me to imagine that the needle was an airplane, crashing into my arm. The results came back normal.

My dad took me to the orthopedist. The orthopedist said that I did not have flat feet. However, he said that I have an abnormal gait, which meant that I don’t walk properly, rather I walk on my tiptoes. He thought that I have a neurological problem, meaning I had a problem with my nervous system.

In the summer, I went to Sea World in San Antonio with my family. I had to walk a lot there from place to place. After a while my feet started to hurt. My mom had to give me a piggy back because I could not walk any more.

When we came back home, I could not walk. I had to hang on to walls and chairs. Sometimes I had to crawl in order to get to places, like my room. Baths with warm water did not really help my legs.

During the summer there were some programs in school, called “Book Club” and “Mighty Minds”. I liked going there, but my feet kept hurting, preventing me to walk there. When we went there, we had leave the house thirty minutes before, even though the school was only five minutes from where we lived. We had to walk slowly. We also had to stop for some time so I could rest. Sometimes mom had to carry me there.

I was afraid I would not be able to walk properly. Some days I cried because of the pain. My feet sometimes felt as if they were going to “fall off”. Sometimes I felt that I did not care if I could not walk anymore. I was very sad.

My parents took me to the neurologist. He asked me to do different exercises. He said many different words that I did not understand. He said that I might have a problem with my central nervous system, or the muscular system or something metabolic with the cellular level activities. It meant that something was wrong with me.

For me it meant more tests. I had lots of blood tests and an MRI of my brain and spine. Everything turned out to be normal. I hoped that I would not have to do more tests. I thought I would turn into a human pin cushion.

Then we went to see my pediatrician. He said that maybe I could get skates so I would not have to walk a lot. My mom got me shoes with skates, but it did not work out too well. I was always afraid that I might fall.

I was sent to do an MRI of my pelvis. The radiologist, who checked the image, thought that I had a problem with my bone marrow, so I was sent to the blood cancer center to see another doctor. This doctor sent me to do a bone scan and a bone marrow biopsy.

After my bone marrow biopsy, I was very sleepy, because they used general anesthesia. I had two bandages on my back to cover the places where they took out pieces of bone and bone marrow. I could not even take a bath for few days. Everything came back normal.

On the first day of school, instead of going to school, I had to do a muscle biopsy and EKG. When I woke up, I ate popsicles that the nurses gave me. My dad let me listen to music on his I-pod. My dad said that when I woke up I asked him, when they would do the biopsy. When the results came back, it showed that everything was normal.

The neurologists said that they don’t have any explanation, as to why I can’t walk properly. My pediatrician sent me to do physical therapy and to see a rehab doctor. The doctor said it was important that I walk straight, so I would not hurt my spine.

Doing physical therapy means that I am doing different exercises to help my feet get stronger. I ride a bike, do muscles stretches, lift my legs, and sometimes practice walking on the balance beam. There are some exercises that my mom does at home with me before I go to sleep or when my feet hurt.

My dad took me to see Mr. Spencer, who works at the hospital, to make me leg braces and knee splints. Mr. Spencer put plaster that you make a cast with on my feet, so he could measure how big my feet were. He also traced my body from my hips down to my feet. I have braces for walking during the day and knee splints for the night.

During spring break I got my knee splints and braces. Mr. Spencer taught me how to put them on. I also have special socks for the braces. After you put your feet and legs inside the braces, you have to wrap velcro around the feet, and then wear your shoe on the braces. I did not like wearing my braces at first, because I was afraid the kids at my school would make fun of me.

My mom tried to cheer me up. She said that Alice Roosevelt also had to wear braces on her feet. She also said that I could look like Darth Vader, because the braces are black.

Today it does not bother me to wear them, because they help my feet by making me step on my soles and not just my tiptoes. Some kids have braces on their teeth and some kids have braces on their feet.

I wear the knee splints, when I go to sleep. I must wear shorts when I put them on. It makes me hold my legs straight when I am asleep. There is also a motor inside to stretch my muscles. If I don’t wear them at night, I wake up crying with pain.

I think that PT and the braces have helped me get better. On days I go to do PT, I feel my feet hurt less and they are stronger. I still can’t run, walk faster, bend my feet or back, or pick up things from the floor. But, I can still walk to school and back home on foot. I don’t need a wheelchair, like one of the doctors thought I might.

This summer there is “Book Club” too. This week, we learned the word perseverance and its meaning. The teacher said that I was an example for perseverance, which means that I did not give up. I felt proud of myself, because even if it hurts, I keep doing and giving what I can. It means that I did not pout and say “I can’t do it” and feel sorry for myself. I’m a winner and not a quitter.

The Meaning of Life (With Apologies to Monty Python)

I was recently asked to write a short piece about a short question: What is the most important thing to you in life and why? What a meaningful question to address during the High Holiday season, during which the ancients imagined the deity opening large ledgers of the good deeds and bad deeds of each individual, and pronouncing judgment upon them accordingly! (I assume it is all on large humming servers now…) The most important thing to me in life, at the risk of running head on into a cliché, is to make a difference.

From the scientific point of view, we know that we live on a small planet orbiting a rather minor star in a rather insignificant location on the lower arm of our galaxy, which is in the backwaters of a vast universe. Furthermore, as the great evolutionary biologist, Richard Dawkins, reminds us, the number of potential people that could have been here in our place due to the various possible DNA combinations, outnumbers the sand grains of Sahara (which the British, annoyingly, do not like preceding with a definitive). This could lead us to discounting the potential significance of our lives.

I believe that that would be a mistake. Why? All you need to do is open the newspaper (note to the kids – that is a non-electronic blog written on large flimsy papers), and look for a reference to the last person who won the lottery. Is that person at that moment happy or sad, feeling significant or not so much? Well, we have all won the biological lottery, just by being here, each and every one of us! The question is, what do we do with this fact? The rabbis of old tell us, “Against your will, you are born; against your will you die, and against your will you are to account (for what you did in between).” You don’t have to be a religious person or even a theist to accept that statement. The great hero of the Antebbe (July 4, 1976) rescue (and brother of the current Israeli prime minister), Lt. Col. Jonathan “Yoni” Netanyahu, was by no means a traditionalist. In his letters he talks about his personal desire to be different from others, and live a life of true meaning, not just potential significance, where he is ready to account to himself for his actions at any moment. The only one not to return from that heroic rescue operation, Israel’s current President, then Minister of Defense, Shimon Peres, eulogized him saying that indeed some live long lives with no real significance, but not Yoni; he lived a short life, but what a significant and meaningful life it was!

There is a very powerful scene in Brian De Palma’s second and much underappreciated movie, Casualties of War. The protagonist, played by Michael J. Fox, has just reported the gang rape and murder of a Vietnamese peasant girl by his platoon sergeant and fellow soldiers, only to be ignored, and almost assassinated. His company marches down a dirt road, and he heatedly discusses what he is going through with a friend, and they shoo away the company “nudge”, who promptly falls into a Viet-Cong trap and dies. His friend, seeing this, suggests that since they could die at any moment, then maybe nothing really matters. Fox’s character, sees it very differently, and (this may not be verbatim, but this stuck in my memory ever since) he says, “No. Maybe we got it all wrong! Maybe because we could die any minute it matters more than anything, maybe it matters more than we will ever know!”

We cannot choose our fates. We cannot choose to whom or where or when come into this world. We have little say over many of the challenges we will face in life. We owe it to ourselves, though, to choose our destinies, to live lives of meaning, to make a difference. And, this cannot be in some abstract way. We must make an ongoing positive difference in the lives of our spouses and lovers, in the lives of our children, in lives of our friends, and in the lives of our larger communities. A tall order, sure, but I aim to have a whack at it!

© Copyright 2010 – Rabbi David S. Gruber – All Rights Reserved