My name is Noldon Starks and I am a senior here at Shaker. When I was born, the doctors diagnosed me with ocular motor apraxia, which deals with eye movement and motor skills. In spite of the diagnosis, my mom and dad insisted on more tests. We finally went to a neurologist, who gave me more tests that confirmed I did not have ocular motor apraxia but Joubert syndrome. Joubert syndrome is a genetic disorder that affects my coordination, balance and speech. This is why I can’t do some things like other people; for example, touching my fingers to my thumb one at a time or flipping my hand from palm up to palm down. I wasn’t able to walk independently until I was 3 years old. Even though I had these differences, I still participated in intramural sports and other activities.
When I was in elementary school, people would ask me why I shook my head and I wouldn’t answer them. I would change the subject. I was too embarrassed to tell them what I had. When I was in the fifth grade, I was walking down the hallway and this boy called me retarded. I told a teacher and the teacher told me that I should’ve called him the same thing. I didn’t do that because I’m not the type of person who engages in confrontation. In middle school there wasn’t much teasing, but people were still curious as to why I shook my head and I would still change the subject when they would ask me.
Here at the high school when I was a freshman there was a particular incident that made me very upset. I was walking down the sidewalk when a senior said, “What’s up?” to me and he started walking beside me, imitating my head motions. The senior tried to play it off, but I knew what he was doing. I gave him a mean look, and when I was halfway home from school, I cried all the way home. I thought that seniors were supposed to set an example for underclassmen, but I guess I was wrong. The next year I was just teased because people could do it without any consequences. I wouldn’t stand up for myself; not because I was scared, but because my feelings were hurt. Last year in the eleventh grade, the teasing seemed to get worse. I was at the lunch table eating my lunch with some friends when a sophomore came over and started imitating my head motions with silliness. At that moment the incident didn’t really faze me, but when I went to my next class, I broke down crying. I was lucky that the teacher turned the lights off; I didn’t want my friends to see me crying. I felt like I was in dark place and couldn’t get out.
This year, my senior year, nobody has really teased me like in the previous years. I guess they’re all used to me now. I also realized that I DO HAVE JOUBERT SYNDROME and I will have it for the rest of my life. I also realized that a lot of people assume they know what I have and those assumptions are false. People think that I have Tourette’s syndrome because of the head jerking. What people don’t know is that they are two totally different syndromes. When I look at people with severe genetic and mental impairments, I think to myself that my case of Joubert syndrome isn’t that bad.
I still thank God for giving me Joubert syndrome now in contrast to what other people’s disabilities are and what they go through on a daily basis. Most people who have Joubert syndrome have severe deformities and have to go through hardship and pain every day, but I don’t have to go through the pain every day, so I call that a blessing. Now that I’ve accepted Joubert syndrome, I enjoy life now and I’m not in that dark place anymore. I’m not embarrassed anymore to tell people why I shake my head. I have to say that the people who helped me through this are my parents. When I was crying excessively all of those times, my mom would quote a Bible scripture to me that I will always remember: “I can do all things through Christ who strengthens me.” My father told me that I should ignore ignorance and negative people. That stuck with me also. I try to live by both pieces of advice. When I get depressed or am having a bad day, I just repeat that scripture over and over and I feel much better.
I wrote this article solely because I want you guys, the readers, to be knowledgeable of Joubert syndrome and know who I am and what I have. And just as important, I don’t want you to feel sorry for me.
A version of this article appeared in print on 21 November 2011, on page 7 of The Shakerite.