As a small child I probably had 30-40% vision; Probably because my file disappeared due to an argument between ophthalmologists. Now, at 64, I see 5-10%; the decline is slow but steady. I have ''normal'' -4/-5 glasses. Within my family (including nieces/nephews, via father's/grandmother's line), the OPA1 gene defect has been diagnosed in at least 5 family members. So far I have no 'plus symptoms', not even in my family, as far as I know. I personally experience my life as naturally normal and also privileged because of all the opportunities I have been given to make something beautiful out of it.
Since I started interacting with fellow sufferers, I noticed that not everyone takes my normal life for granted. That gave me something to think about and is a reason to tell something about my life in 500 words. Hopefully I can encourage and inspire others who are in a similar position.
II have learned from an early age to act 'normal', not to see or behave as an exception or as limited; Sometimes the ship threatens to founder somewhere, but at such a moment I always find a solution. I was raised that way by my parents. My father had a similar visual impairment, had a successful business career and never adopted a 'restricted' attitude. I myself studied Mechanical Engineering with this strategy in Delft and then worked at various companies, including TNO and Unilever. At Unilever, I traveled extensively for 16 years to all corners of the world, designing technical installations at factories, supervising construction, solving problems and training employees. The limitations I experienced with all that traveling and working were always solvable. More than 5 years ago I got fed up with this nice rollercoaster job and quit my job to start my own one-man engineering company, which has been running like a charm ever since.
Looking back on my life so far, I am happy with my strategy, because it helped me get a lot out of my life and gave me a pleasant feeling of autonomy. But that this does not always happen automatically, was evident, for example, when I applied for my first permanent job, with an engineering degree in my pocket. The medical examiner (this was mandatory at the time): ''But sir, what are you doing here with me? If a typist stands in front of me with one hand, I wouldn't approve of that, would I? Here you have a brochure with the application procedure for disability and benefits. Good luck.'' After a formal objection procedure, I was temporarily approved for one year; Then it changed to: ''You have shown that you function well and there are no problems; Why would I, as a medical examiner, start causing problems?'' With these and other experiences, I can advise fellow sufferers to firmly stand up for yourself, make good use of all the help and support that is possible, but also take control yourself. and remain critical of patronizing and pampering. And also: follow your dreams and ambitions; Much more is possible than you initially think.
If you would like to know more or discuss something with me, you can contact me through the board.
