Firstly, let me say I think that it is important that people with stargardts focus on what options are available rather than those things that are made difficult or not available to them. My story is one which focuses on the positives as opposed to the negatives. The positives have not arisen out of chance, rather, I’ve deliberately and assertively pursued goals far greater than what I originally set pre-diagnoses of stargardts back in 1995.
At the time of my original diagnosis I was living in Townsville, Northern Queensland where I was competing as a professional triathlete at an international level with an ambition in representing Australia. As one can imagine, swimming in the ocean when one cannot see the buoy, cycling at high speeds sometimes navigating down mountains and running and tripping over every obstacle in front of you does create challenges, thus, leading to an early retirement from the sport. Without any real qualifications on paper or otherwise, I became concerned as to both my immediate and long term employment opportunities. I approached my ophthalmologist (Dr Graham Kelly) in this regard for advice as to my future employment opportunities and to my surprise, his words were so profound that to this day I live with them. He said “Tim, go get yourself a good education and you will always have a good job”.
Almost eight years later, I’ve completed a Diploma of Business (Accounting) and a law degree from Sydney and will shortly be commencing a masters of Laws at the University of Indiana. What I’m saying is if I’d solely focused on what I was no longer able to do I’d probably still be depressed about hanging the goggles, racking the bicycle and throwing out the runners.
I’m not for an instance suggesting living with Stargardts is easy, its not, and such a statement would indeed be insulting to those who are forced to go through their daily routines being frustrated by all those little things that should come easy. However, in my opinion, and let me stress that it is only mine; there are worse diseases or impairments to have, just ask those who knew the late Christopher Reeve or others alike.
About two years ago at my last vision assessment it was found that I have a corrected visual acuity of 20/200 and 20/400. I’ve been told that I’m fortunate because I wasn’t diagnosed with Stargardts until I was 25 years of age. Commentary that I’ve read and people who I’ve spoken to have suggested to me that when a person is diagnosed later, that is, in one’s twenties or later, the likelihood of total or near total blindness is unlikely. In any event major adjustments occur and assistance is required.
People should inform themselves and become aware of what adaptive technology is available. Personally, I use a “Clearview Bright” split screen CCTV with a 20 inch monitor, Zoomtext software set on level 4 and I’m increasingly becoming reliant on the screen reader that ultimately will become a god’s end and hand held magnifiers. I’ve found that it is important when people ask what the CCTV is, whether it’s at work or otherwise, take the time and explain to them what it is, its function and why you need it. The more that society become educated and able to accept these foreign pieces of equipment in the workplace or at school the more willingness will be shown by employers and people generally. Education is the key.
It is important whether you are a parent of a child who suffers with stargardts or otherwise, that you don’t sell your child or yourself short or set limitations towards achieving personal success or obtaining your goals. I personally, fill a greater feeling of fulfillment then what I believe my friends do when they achieve their goals because when I have achieved a goal, I recognize that some things in life are obviously more difficult for me than my friends. It took me many years before I would give myself a pat on the back but now I feel that it is important that one acknowledges their achievements to motivate further advancement in life. Moreover, be sure to ask for assistance from those around you, don’t ever remain a passive bystander because unless you have a guide dog or a cane which most people with stargardts who I’ve met don’t have, people won’t know you are visually impaired or legally blind.
I’ve recently relocated too Indianapolis, Indiana, from Sydney, Australia and would like to talk to anybody who are faced with challenges or concerns towards their future educative or employment prospects, issues or questions related to Stargardts generally.
My e-mail address: firstname.lastname@example.org.