I am Rebecca. I was born in 1985. In the age of 20 months I was diagnosed with a bilateral retinoblastoma. The left eye had to be removed, since the tumor had grown too big already. Of course that came in as a huge shock for my parents, since even though my dad’s mother and distant relatives had suffered from retinoblastoma, my dad hadn’t.
I don’t remember any of the following steps. My first memories of “day trips” to Essen were in my kindergarten times and those memories aren’t bad ones. In school, I did have small difficulties concerning my prosthetic eye from time to time. Other kids often asked me why I would look cross-eyed, which didn’t hold me back from telling them about the eye. I regularly brought old prosthetic eyes to school and if someone was especially curious, I also took the eye out in front of them. That was a huge step for me, since this way friends knew about it and it didn’t become a problem to see me without one eye on class trips or holiday camps. The way my parents handled the situation was a huge advantage for me: ever since I was small they taught me that my disease was no handicap but something special, that I didn’t share with a lot of other children.
After my middle school diploma, I also took my A-level degrees, since even then I aimed for studying medicine. I started studying in 2004. And, how life goes, and when you would least expect it, there were lots of obstacles in my way this time: among my medical teachers a lot of people shared the opinion that it was hard to draw blood one-eyed, that it was impossible to perform punctures or to operate. But I was living proof again and again that indeed it was possible and that I didn’t have any limitations. That way I successfully completed my studies in 2010 and even got my dissertation at the time. Subsequently, I worked in the internal medicine station of a hospital without having any problems.
In my leisure time, I am accompanied by the same hobbies since my early youth. For more than 20 years horses and riding horses are my passion and I never experienced any limitations here either. Only in one course a teacher saw that my horse walked in a different position whenever on my “blind” left side opposed to my “seeing” right side. However, that’s a natural process that hadn’t caused any difficulties between the two of us yet. Probably though, my horse first had to adjust to me and my specialties, when I got it.
I also liked dancing a lot earlier, but I don’t have enough time for that any longer.
Surely, my first love was the most exciting time of my life. Suddenly there were questions that I hadn’t thought about thus far. I suddenly started to worry how my boyfriend reacted if I told him I had to take out my eye nighttimes or even, if I actually took it out. I can now say that the more natural I acted upon my eye, the easier it was for him. At last I think if it is the right partner he or she will take one as one is, since any other way it’s probably advisable to over think the relationship.
At some point of our life journey, my husband and I also thought about having children. It is definitely hard to give a general advice here, since every person and every relationship is unique. We decided to take the risk and have children, because even a life with retinoblastoma absolutely is a life worth living.
So we had our first healthy daugther Jule in 2012, who didn’t heritage my genetic defect. That was a very moving time for us and with every smile of our daughter we know it was absolutely worth the risk. So shortly after that we decided to have another child. Our second daughter was born in September 2014. Paula does have my genetic defect, but is tumor-free at this point.
As a person and mother affected with retinoblastoma, I can relate to a lot of worries of other affected families. My daughter and I try to be living proof that the life with a retinoblastoma is a very happy life worth living – that’s how I see it. At the end of the day we all are people, with something special, and in our case something special, that not a lot of other people share with us!
01.10.2014 | Leading Spirits