Koji's Story

I met Koji online. We bonded over a passion for ocularistry and the fact that we both grew up in Asia. We've never met in person because he still lives in Japan. He wants to become an ocularist, but unlike me, he has first-hand experience with eye loss. As we continued to exchange e-mails about ocularistry, I asked him to write his story and share it with you.

My name is Koji. I'm glad to write about myself if it helps people with similar circumstances. Thank you for reading even though my English is poor.

My mother told me that she noticed that something white was in the center of my right eye when I was one year old. She was a school nurse, so she was certain about something is happening in my eye. She took me to the hospital immediately. It was a typical symptom of retinoblastoma (an eye cancer, usually in children). Then a surgery took out the whole eye on next day. Since then I've been wearing a prosthetic eye for more than 30 years.

The rate of incidence for this disease is 1 out of 16,000 birth. I'm not sure the recent number, but according to 2007 information, 70-90 children came down with this disease in Japan. It's a cancer, so it has possibility of metastasis. The oldest case of relapse of this disease in Japan is 20 years old. Fortunately, there was no metastasis nor relapse for me.

How I Spent My Childhood

I've been worried about my right eye for many years. It's not about eyesight but appearance. When I saw myself in photos when I was kid, sometimes I found the direction of my eyes are different. I hated to see that. As I got older, the worries became bigger and sometime felt difficulties facing new people.

I was good at sports even as a one-eyed kid. I played soccer until high school. I had many friends and good teammates. In primary school, children are often interested in other people's differences. If it goes the wrong way, it becomes bullying. In my case, I never had such an experience.

When I got older and thought back to my days in primary school, I realized that I was quite a courageous kid. My mother told me that I took my eye out and showed it to friends when they asked. She advised me to be honest about why my eye is different when my friends asked, but she didn't expect that I took my eye out and showed them. Anyway, by doing that I might have helped my friends understand and spent a normal school life.

As might be expected, I stopped showing people my eye when I reaching to puberty. However, the reason why I am quite cheerful person is because of the bravery as a kid. If your child or a member of your family lost their eye at a young age, it's so sad and you might become pessimistic. However, if their other side of eye is good, please do not give them too much protection (other than protective glasses) and do not restrict their activities. Most sports like swimming, ball games, and even martial arts are no problem. Driving, biking, motorcycling in the future also no problem. So please treat them as a normal person. Please do not take away their opportunities. I feel these are important in helping their social skills. One day, these skills will improve various aspects of their lives.

How I Kept Myself Positive

I understand how much we care about own appearance. Recently I was surprised that even my long-time friends haven't noticed that I have a prosthetic eye. I thank my ocularist for making great prosthetic eyes. Having said that, the appearance is a very important and sensitive issue. If you feel self-conscious about the prosthetic eye, I recommend you to become a stylish person and draw attention away from your eye. Clothes are quite fun. To uplift my feelings I care for my clothes everyday. I believe clothes can empower people and allow them to blossom socially. You will find some way to have more confidence in your life.

Can We Be Better Than Normal People?

Are we limited compared with normal individuals? We are NOT. We can play many sports, no limits for studying and we can get various kind of jobs. I've started to train at a boxing gym, and now I'm training with professionals. I'm an amateur boxer due to age limitation, but my record is 4-wins, 3-draws, 2-loses. All the competitors were normal individuals, and I have more wins than loses. There is no big difference in physical ability even though we are one-eyed. Since I've started boxing I've had more confidence in myself.

Meeting With A Great Ocularist

I have a dream now. An ocularist gave me new light for my life. It is to become an ocularist. Last year, I was thinking about getting surgery to make my eye movement more natural, but I was concerned about the risks. I wanted to consult with someone who knows the post-surgical situations very well. When I searched online, I found a name of Mr. Mizushima. He is well known as a great ocularist not only in Japan, but also in other countries. He travels all over Japan for his patients, even now when he is over 75 years old.

On his website, he said "I want to continue this job as long as I can. Because children grow so quickly, artificial eyes are often remade. Traveling cost for parents will be a big expense, so I travel around Japan about 60 times a year to see their children. I put my tools in the bag. I was a hiker when I was young, that's why I'm OK even when there are no buses. However I do have to watch my traveling expenses, because it's from my own pocket."

I couldn't believe it, because we normally visit the lab to get our prosthetic eye made. I was interested in him, and sent him an email about my concerns. Three days later we met at a hotel lobby in Osaka. He made time for me on the way to visit another patient. Actually we live quite far each other. Mr. Mizushima took 3 hours for me and I was not even his patient. I was moved and cried upon hearing his policy and his attitude towards his patients. His reputation and the article on the internet were right. It was my first time discussing my eye and ocularistry in my life. There were so many things I didn't even know. My interest suddenly changed from my surgery worries to the occupation as an ocularist.

My New Dream and Present Situation

After I met him, something changed in me. Who can take over his place after he completely retires? My willingness of becoming an ocularist is getting bigger day by day. It must be my calling, because I understand what people worry about and what they want. Why didn't I think of becoming an ocularist when I was younger? It is a really big regret. By being older, changing to a new job field is quite challenging in many ways. I've started searching for a way to become an ocularist. However it is more difficult than that I can imagine. There are so many obstacles that I have to overcome. I've already been searching for opportunities for one year, but I haven't found a chance yet. Of course, the closest location is to learn under Mr. Mizushima, but it was met with various difficulties as well. Now I'm searching for a chance abroad. Every step I list below were taken within the past year:

After attending the meetings, I started learning on my own. I'm still looking for a teacher.

After attending the meetings, I started learning on my own. I'm still looking for a teacher.

  • Seeking advice on how to become an ocularist on the losteye.com forum
  • Posting "sponsor-wanted inquiry" on the American Society of Ocularists website
  • Contacting a leading prosthetics eye lab in Japan
  • Contacting some ocularists in other countries
  • Attending the Association of European Ocularists congress held in the UK
  • Preparing tools for making artificial eye by myself
  • Writing my story for this blog

Taking these steps were unimaginable for me in the past. By exploring the possibility of my dream, I've been more challenged as a person. I'm not good at English, I tended to choose stable jobs and situations in my life so far. However I'm willing to accept the challenge of becoming an ocularist even if it means giving up my current job. There will be many more difficulties which I must overcome.

Even today I'm facing a big obstacle of entering the field of ocularistry. This job is very specific. No schools exist in the world. The only way we can enter this field is through apprenticeship, which is especially hard for a person from other countries to find. It takes at least five years of apprenticeship to finish the training program and receive certification.

One of my biggest concerns is how to get a VISA. Without specific job or academic background, it's is very hard to get the VISA. It's been a process of challenges and discoveries. I'm connecting with some ocularists all over the world. They are busy, but they've given me great advice and helped keep my motivation going. By exchanging our thoughts, new ideas are coming up. I really appreciate their support.

My Appreciation Towards My Family

I had retinoblastoma when I was one year old. Sometime my mother apologized to me about my disease as though it was her fault. I had many worries and mental conflict when I was younger, but what I've felt towards my parents was only gratitude. I never hated them for my disease. I've received plenty of love and support from my parents.

Recently, I've started thinking that I might be lucky having retinoblastoma. Without suffering this disease, I wouldn't be what I am today. There would be no passion for the future dream, no connection with great people. Now I can completely accept my situation, and can tell other people how I live today. One day if I could become an ocularist, I would like to support people who has the same worries the same way my mother supported me.

At last, it can be said that I'm blessed with my parents' and my wife's support, my friends' and co-workers' understanding. I always thank the people who are supporting me. This is part of my true life story. It surely is not a dramatic one but I'm happy if it could help anyone even a little bit.