I was born with neurofibromatosis, NF for short. Doctors noticed a tiny tumor on my eye, and then on my heel. Later, they found a small tumor on the roof of my mouth. Mom thought nothing of it. But when she tried to put shoes on my feet, she noticed it was more difficult to put my left shoe on than my right shoe. I’d cry when she’d try.

When I was eight months old, my aunt Madie "Sue" suggested that my mom contact the Shiners Hospital. Shiners doctors told her that I had Von Recklinghausenís disease, another name for neurofibromatosis. It is incurable; there was nothing they could do.

My mom asked, did I cause this? The doctors assured her that she was blameless. She is a carrier of the disease. She has one or two negligible tumors on her hands, symptoms of a minor case of the disorder. I am the youngest of six, and none of my brothers or sisters showed outward signs of neurofibromatosis at birth.

The first time I recognized that I was different was when my siblings and playmates made footprints in the sand. One foot, two foot, one foot, two foot. All of the other kids had footprints that were similar in size and shape but my two feet were very different.

My mom and dad were divorced when I was a teenager. My dad stayed around us when I was young, and then separated from the family. He lives in Sugar Land and works in construction; he still comes to family events like birthdays and holiday celebrations.

I don’t think it was my disease that caused my parents to separate; they just did not have a good marriage. Sometimes I thought that my dad treated me differently from the other kids. He told me to go back into the house a lot. I don’t know whether he was embarrassed by me or I was just being naughty.

I liked going to the hospital when I was little. Everyone was nice and I felt like I was being helped. Shiners hospital is an amazing place. I went to MD Anderson Hospital in 1978 at the age of 13, and have been going there ever since. I am also a patient at the eye clinic at Hermann Hospital.

Tumors grow faster during adolescence and as I grew, the tumors grew along with me. As a teen, I had many surgeries. Doctors tried procedures that relieved the pressure of the disease on my body. For example, my left leg grew longer than my right leg, so I had knee surgery to make the leg stop growing. Surgeons took a lot of tissue from my leg. Since then, all the tissue has grown back.

Going to school was difficult. My brothers and sisters were always there to protect me, and I needed protection every day. My family was aware of how other kids reacted to me children tried to hurt me. Even neighbor kids protected me. One day I was walking home from elementary school and a fight broke out behind me. I turned and saw my neighbor Dale, a junior high kid, punching an older boy from outside of our neighborhood. I approached the fight and asked a girl what caused it. She said that Dale was mad because the other boy was saying mean things about me.

I stopped attending my neighborhood elementary school, Virgil Grissom, because I was in and out of the hospital so much. I transferred to West University Elementary it had a program for students with medical problems. I attended Pershing Middle School and then a high school for the handicapped that is on Pershing’s campus.

Most of my teachers at Pershing were nice to me, but one incident haunts me still. I was waiting for the bus when I was 15. A teacher walked towards me yelling, where did you get that thing? Take that thing off! I He was accusing me of having a mask on. It was no mask, it was just me. When he realized what he had done, he simply turned away. never mind, he mumbled.

I did not know what to say or think when he first said that I had a mask. I realized then that I was angry. He knew better at least he should have known better. I had been going to the school for years. How could he be so unobservant? Even if he thought I had a mask and suddenly realized that I did not, his attitude was still offensive. By turning away from me with no apology, he did not acknowledge my humanity to him, my humanness was hidden my face was like a mask to him. If he had looked into my eyes, he would have seen a child who was hurt; he would have felt repentant. But he did not look at me long enough to see anything it wasn’t worth the effort.

My friends who were also waiting for the bus felt horrible for me, and I felt a deep shame. I hate to make the people with me uncomfortable. Even now, when someone embarrasses me because of the way I look, I am also embarrassed for the person who is with me. Thoughts go through my mind about how to keep my friends from feeling like they are on the spot.

what can I say to make them feel better about being with me? I think. I don’t like to believe that my friends feel sorry for me. Sometimes, we just pretend that u NFortunate incidences don’t happened don’t say anything and they do not either.

Sometimes, I handle attention well; sometimes, I don’t. In some situations, people’s staring makes me feel great am famous like the President of the United States. Other times, staring really bothers me.

Now that I am more than 40 years old, I have defined some boundaries for myself. I feel safe going to some stores or being in some parts of town I do not feel safe in other areas. I make decisions, this is not a store I should go into I will not fit in. People will be afraid of me. I don’t go into these stores.

At times, I am not aware of people’s reaction to me. One guy who drives a wrecker at my brother’s place of business, a garage, says, when I first met you, I was shocked because no one told me anything

I like it when my friends prepare their friends for what they will see before I meet them. I want my friends to say, I have to tell you about Reggie, he has a condition that causes his face to be disfigured. Then, I can relax when I meet the new people because I know they won’t be afraid.

Some of my friends are so accustomed to the way I look that they want to take me everywhere. They think I am strong and can handle whatever comes along; they forget the effect on people who see me unexpectedly. They are so accustomed to having the freedom of going anyplace without thinking it through. I hate to disappoint my friends, but sometimes I am afraid to go with them.

We live within a block of an elementary school. At 7:30 in the morning, the street is packed with walkers. When I was a little boy, I dreaded walking outside to board the special-ed bus that picked me up. The bus driver pulled up on the opposite side of the street and honked the horn. I stared out the window wishing she would just pull up in the driveway. I examined the street as best I could to see if there was a chance for me to leave my house unobserved. If I could see a break in pedestrian traffic, I grabbed my books and raced to the door of the school bus. Sometimes I wasn’t so lucky. I’d have to go to the bus during a busy time and walk right in front of the normal kids. It was bad enough that I scared them, but I was embarrassed that my friends on the bus saw the walker’s reaction to me. A special-ed bus full of nine-year-olds is not known for its sensitivity. My friends would point out to me all of the kids and made it seem like they had horrified expressions.

Because I have designed my life around my disability, I am not as adventurous as I would like to be. My disability keeps me from complete freedom. Some places, I force myself to go in. My friends ask me to come in with them, so I go.

They expect me to go in with them. So I have to go in, even though I don’t want to. A lot of times I go into places because other people expect me to do it. I wonder if they tell their other friends about me before I arrive. I actually want them to because I don’t want any surprises either way.

Some people lock doors when they see me coming. Once, when I was 13, my mom and I tried to enter an electronics store near Sharpstown Mall. Just before we touched the door handle, a guy inside locked the door. He motioned for us to leave, but we thought he was telling us to go to a side door. There was no side door. When we came back to the front door, a different man, maybe a manager had opened the door to let us in. We did not see the guy who locked the door; he was probably in the back room.

During high school, the Texas Rehabilitation Commission (TRC) sent representatives to our school to assess us for job opportunities. TRC introduced me to Dr. Vincent Riccardi, the only doctor in Houston who was actively treating NF patients. He told me about the Texas NF Foundation.

The doctor also told my mother and I that he was treating a young pregnant woman who had the disease. He shared with us that he was worried not only about the young woman, but also about the baby she carried. He was trying to do all he could for her. We soon discovered that the young woman with the disease was my older sister, Portia. Until that time, we did not realize she was affected. Portia was pregnant with Coty, my mom’s first grandchild. Coty, who is now in her mid 20s, has a very mild case of NF; she carries some café au lait spots.

Although my brother Ronald and my sisters Lisa and Portia have NF, my brothers Kelvin and Byron do not have it. Byron is children show no signs of NF. Lisa has one son with café au lait spots and one nodule, but none of her other children have NF.

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