3 July 2021, René van Gerwen

As a small child, I probably had 30-40 % vision; it is probably because my file disappeared thanks to arguments between eye doctors. Now, at 64, I can see 5-10 %; the deterioration is slow but steady. I have ”normal” glasses. -4/-5 glasses. Within my family (incl. nieces/cousins, through father’s/grandmother’s line), the OPA1 gene defect has been diagnosed in at least 5 relatives. I have no ”plus symptoms” so far, not even in the family, as far as is known. I experience my life as normal and privileged because of all the opportunities I have been given to make something beautiful out of it.

Since I have contact with fellow-sufferers, I have noticed that not everyone has the same view on what a normal life is. This gave me food for thought and a reason to tell something about my life in 500 words. With this, I hope I can encourage and inspire others in a similar position.

I was taught from an early age to act ”normally”, not to see myself or behave as an exception or as being limited. That’s how my parents brought me up. My father had a similar visual impairment, had a great business career and never set himself up as ‘limited’ either. With this strategy in mind, I studied mechanical engineering in Delft and then worked for various companies, including TNO and Unilever. At Unilever, I spent 16 years travelling all over the world to design the technical installations at factories, supervise construction, solve problems and train employees. The limitations I encountered during all that travel and work were always solvable. Over 5 years ago, I got fed up with this beautiful rollercoaster job and resigned to start my own one-man engineering company, which has been running like clockwork ever since.

Looking back on my life so far, I am happy with my strategy, because it has helped me to get a lot out of my life and has given me a pleasant sense of autonomy. But that this does not always happen automatically became clear when I applied for my first permanent job, with an engineering degree in my pocket. The medical examiner (it was obligatory in those days): ‘But sir, what are you doing here with me? If a typist stands in front of me with one hand, I don’t approve of him either, do I? Here is a leaflet with the application procedure for incapacity for work and benefits. Good luck.” After a formal objection procedure, I was temporarily approved for one year; then it turned to: ”You have shown that you function well and there are no problems; why should I, as an examiner, start making problems?”

With these and other experiences, I can advise fellow sufferers to stand up for themselves, to make good use of all the help and support available, but also to stay in control and to remain critical of patronising and pampering. And also: follow your dreams and ambitions; much more is possible than you initially think. If you want to know more or want to discuss something with me, you can contact me via one of the boardmembers of the Cure ADOA Foundation.