Recently I decided to get my nails done at a salon for the first time ever. After approximately 14 years of not painting my nails, I decided I could handle wearing nail polish once again.
I was not getting them done as a social experiment as it first seemed to be, but more to prove to myself that I have come this far where I could handle any criticism or attention that is drawn to me because of my hands.
I was very nervous when I first walked into the salon. The man who was to do my nails instructed me to go and pick a color of polish from a rack. I selected a very pale pink. I laid my left hand out on the towel and waited for him to start cleaning my nails. He looked at my hands, and started working without any question.
About two minutes later, the man looked up at me.
“So were you born with your hands like this?” he said, looking quite uncomfortable.
“Yes, and it is okay for you to ask me questions,” I replied.
He looked down at my hands once again, seeing how they are very small, missing two nails, and shaped very strangely.
“You look very professional,” he said.
I thanked him. I had played up my age for the day, wearing more makeup than normal, and dressing very nicely.
I do not normally wear nail polish. When I was quite young, I would paint the nails that I did have a bright pink. That short stint when I was 5 or 6 was the only time I ever dared to allow myself to be out in public with painted nails. I stopped when I discovered that painting my nails, or actually my skin, drew too much attention to my hands. Attention that I definitely did not want.
“So how do you live your life around something like this?” the man asked as he paused his work for a moment.
“You just do, and you learn how to adapt,” I replied.
“You look so beautiful,” he said. I thanked him again.
Not Exactly Normal
I was born with a form of Recurring Digital Fibroma of childhood. The condition is considered a rare birth defect. It causes the bone structure in my hands to be underdeveloped, my hearing to be 65 percent of a normal person, and my knees to be hyperextended.
I have birthmarks on my face as a result of the condition. In several places my eyebrows and eyelashes do not grow because of the placement of the marks on my face.
Only 16 cases have been reported worldwide, and the condition primarily affects females. Symptoms start within the first few months of life, and continue to develop for the first few years. When I was born in 1994 my hands looked normal, other than the third bone on both of my third fingers being short.
At that time there was little known about this condition, and what overall effect it would have on my quality of life in the long run. Although these questions were unanswered, I lived my life while learning to work around my disabilities.
I never really considered myself different from other people, so it really struck me as odd when I entered preschool and other kids would just walk up to me and ask, “What is wrong with your hands?” I would just give them the simple answer that my mom told me to give people: “I was born like this.” And then I would move on with my life.
I grew up being treated completely normal by my parents. They never allowed me to feel sorry for myself, and this ended up influencing my adaptation to my condition long term. While they were unsettled by my fate, they knew they still had to raise me like I was just the same as any other child.
My parents first found out something was not right when I was about three months old, and my hands started growing “bumps” on them. Very quickly the bumps grew so it looked like I had golf balls on the tips of my fingers.
My parents took me to several doctors, but after a series of visits it became clear that it was going to be a long time before I received a diagnosis. We went to various hospitals and doctors’ offices, trying to find an answer as to why my fingers had started forming so strangely. Even doctors at the University of Michigan and the Mayo Clinic in Rochester, Minn., were unable to diagnose my condition.
I vaguely remember an experience when we sat in a hospital room for a whole day. It seemed like every doctor in the building that day stopped by at some point to look at my hands. Out of the dozens of doctors, with all their many different specialties, none of them could tell my parents what I had, but they all were truly sorry they could not help me.
My parents came across a geneticist who presented my case to at an international symposium. The doctors there were able to help diagnose my condition.
We came across a doctor who worked in the Grand Rapids area who could offer help. I started out by having several minor surgeries on my hands before I entered preschool. We found another doctor in the Detroit area who had done several experimental treatments on a boy with a condition that resembled mine. Each treatment by these doctors gave my hands some improvement in appearance, but not function.
Further attempts to find treatment led to a meeting with a surgeon in Boston, who had worked with very rare conditions of the hand before. This surgeon was able to put me through two different surgeries when
I was 7 and 8 years old to make my hands more useable. Even though I had these surgeries, by age 7 I had adapted and could easily write with both my left and right hands.
My surgeries took place at the Boston Shriner’s Hospital for Children. The hospital is known as a place where children who have been victims of terrible fires go to have treatment. My condition seemed minor compared to the children there who had parts of their body melted off, and had been there for months receiving all sorts of treatment.
Today when I see the “before” pictures of my hands, I can’t believe how terrible they used to look. While my hands do remain small today, they are workable and I can do almost anything I want to do with them.
When I was 4 years old, I was required to wear leg braces as part of my treatment, both during the day, and locked straight at night to help correct the hyperextension in my knees. I absolutely despised it. I wore the leg braces until I was 8 years old, as well as splints and a steroid tape on my hands at night. Often I would spend half of the night unlocking the leg braces and taking off the splints and tape. They would put so much pressure on my hands and knees…I was undoubtedly not supposed to do this.
When I was in preschool, I came home and announced to my parents that “I got to take the hearing test twice today at school, and all the other kids only got to take it once!” I ended up getting a hearing aid for my left ear when I was in kindergarten. As much as it has given me headaches and ear infections over the years, it has drastically helped me operate on a day-to-day basis.
In school I was treated the same as all my other classmates. My parents continuously fought to find out how to “fix what was wrong” with me. There was always an ever expiring date to when I would be “fixed.” My mom would say to me, “Oh, by the time you are in middle school, you will have straight hands,” or something along those lines.
Gradually, I accepted my fate, because the day when my hands would be perfect, straight, and normal never came. By the time I reached the end of middle school, I had reached the top of Abraham Maslow’s pyramid. I was about 15 years old and I was already in the “self-actualization” section of the pyramid. I already had achieved “belonging” and “esteem,” the places where middle school students tend to be on the pyramid. According to studies, most people do not reach self-actualization until somewhere between their later teen years to mid-20’s.
Overcoming the Expectations
When I was four years old, I started taking dance lessons. I started at a local dance studio, and by the end of elementary school I was studying ballet at the Grand Rapids Ballet Company.
The interesting aspect about being a dancer was that very few people even noticed I was disabled. I never remember a single instructor paying any attention to my hands. Hyperextension in my legs only came as an advantage to me. In the dance studio, nearly no one noticed anything different about me.
I decided that I could care less that all the odds in the world were against me being successful. Regardless of the fact that I had issues with my knees and had worn leg braces as a child, I still was able to dance as a student at a professional ballet company. That meant I could do anything…right?
Toward the end of middle school, and through high school, I eventually retired from ballet, and became involved with theater and music. Even though I was part deaf, I still took voice lessons, and was in an honors choir at my high school.
When people ask me “What is wrong with you?” my simple answer will always be what my mom told me to say when I was little: “I was born like this.” Now I am confident where I should say: “There is nothing wrong with me, I just don’t look like you do.”
One way I used to try to hide my birthmarks was by wearing makeup to cover them. I started wearing makeup when I was 9 years old on pretty regular basis. By the time I reached high school I was confident enough where I only wore makeup because I loved putting it on, and it became almost a recreational activity where I would spend 20 to 30 minutes on myself each day.
Now as a 19-year-old college student, I do recognize that my life has been much harder than many other young adults around my age, but my struggles and my appearance do not define who I am. That is something I have spent a long time trying to wrap my head around.
Especially when I was in elementary school, I thought that my outer appearance defined who I was. As I got older, I realized that I am in charge of my happiness, and that I can actually decide what defines me.
My life is in my own hands, not someone else’s. I can either choose to make this really good, or I can choose to make it really bad. It is all up to me. My disabilities are a part of my identity, but in no way are they my definition.
I found new things that define me: I told myself that I was going to try as hard as I possibly could to make myself better in every way I could. I was going to be so good at everything I wanted to do, that there was no way I could go unnoticed. People were going to still stare at me from time to time, but I was totally ready to make it worth their while. I worked as hard as I could academically, and I graduated from high school as an honors student.
Going to college was a huge milestone for me because I had been in the same school district from kindergarten through 12th grade, and I was finally going to a place where nearly no one knew my story from previous years, or from talking with other people who I grew up with.
I decided that I was going to “do good” with my disabilities. I wanted to show other people regardless of what they might have gone through in their life, and what barriers might be trying to tear them down, they can accomplish anything they set their minds to.
During the summer of 2013, I spent several months living in Vermont. While I was there I made a trip to visit the surgeon in Boston who had done work on my hands more than a decade ago. The surgeon was able to remember me quite well because of my case, and he was very surprised to see how well I adapted to doing everything. He just kept describing how I was performing on a day-to-day basis as “complete adaption.”
The only thing that I dislike about my condition is the attention it draws to my younger brother and sister. They are the ones who are still asked questions by other people. It bothers me that they have to live with those questions when I should be the one who has to answer for them.
Although I have generally adapted in every way that I can, I still have little day-today struggles. I generally prefer typing to handwriting, and I do have difficulties hearing people speak. But I can live with all of that, and my life now is so much better than what the preschool version of myself envisioned her life to be.
Challenges make life interesting. We need to embrace them. Whether it is overcoming an obstacle that you cannot control, or challenging yourself to work harder. Live up to the challenge. Great things never came from sticking to your comfort zone.
This last year as I was making plans with the help of my mom to visit my former surgeon in Boston, she revealed to me that she gave up painting her nails for 18 years because she did not want me to be the only female I knew that did not paint her nails. While I have long gotten over that stage, she still does not wear nail polish because of what I went through earlier in my life.
Even though the man truly did a wonderful job doing my nails that day, it is really not that important to me anymore to have beautifully painted nails.