Embrace the Change
by JAN NESSET
A letter of encouragement from Jan Nesset, a PXEer from Canada, to his fellow PXEers .
This article first appeared in the November 2009 eNewsletter.
My own PXE story is not unlike many others; visible symptoms almost from birth, early diagnosis at the age of nine, loss of vision starting at age 46 (11 years ago), then legal blindness a couple of years later. So my life has changed quite a bit, but not at all for the worse. I am a "semi-retired" (on disability due to PXE) engineer but still do consulting work around the world, teach an engineering course (Process Analysis and Modeling) here at McGill University in Montreal to undergraduate and graduate students, prepare and conduct technical courses for industry, am finishing my Ph.D. in my spare time and still enjoy downhill skiing and even squash (the brain can project where the ball will be even if the eyes cannot see it directly).
I would even make a case that my quality of life has actually improved since my vision loss. This is not a cavalier statement. The relatively rapid personal and family changes brought on by vision loss (such as stopping driving, changing career objectives, uncertain income) brought some anxious moments; however, they forced our family to sort out what the really important things in our lives were, and we moved on quickly from there.
The key was to secure a long-term disability arrangement with the insurance company that recognized my capability to do limited work, without jeopardizing the basic disability payments. I now share any extra revenue with the insurer on a 50:50 basis. As a consequence, there has not been a large impact on the bottom line, and I am able to get involved as a consultant in projects that reflect my engineering skills and that I really enjoy. I have several months "off" each year for time with friends and family, and to pursue hobbies and sports activities. My wife, after years as a stay-at-home mom with our two daughters, took advantage of the family changes to go back to school, get a Masters and a Ph.D., and is now a university professor teaching library and information science.
My simple message: embrace the changes when they occur and stay positive.