|
 E-interview with Sue Sanger
Sue Sanger is an active member of our Northern Lights Chapter. We wanted to share with you the opportunity to get to know Sue and all her tips and tricks about living with RP. The following are her responses to a series of questions.
When was I diagnosed? How is my sight today?
In my early 20’s I began noticing that I couldn’t see at night as well as others did.
During the next 4 or 5 years, I went to several eye doctors and they all told me not to worry because everyone has trouble seeing in the dark. Finally, when I was 29, a new ophthalmologist diagnosed me with Retinitis Pigmentosa (RP). This was both a great shock and a real relief – I hadn’t previously heard of this disease, but at least now I had an explanation of my sight limitations. When I called my parents with this news, I learned that my mother had two cousins who also had RP. Since then my sight has gradually deteriorated. Today I can see ahead pretty well, but my peripheral and nighttime vision is significantly limited.
How difficult was giving up driving?
About 25 years ago I voluntarily stopped driving at night. Frankly, this was both a nuisance and a challenge to my sense of personal independence. I learned to ask others for rides, and they generously complied. Since then, I have voluntarily put other limits on myself, such as not driving on freeways or in unfamiliar and distant locations. I began taking the bus or walking whenever feasible, and occasionally take taxis. Two years ago the state actually declined to renew my driver’s license because of my RP. While this has certainly increased my transportation hassles, not having my driver’s license has actually reduced my stress level. Driving had become uncomfortable because I knew my sight limitations might cause potential safety issues.
How did RP affect my career?
My RP didn’t have any impact on my ability to handle my responsibilities as a lawyer, but it did affect my working hours. Once I stopped driving at night, I left work early during winter months, and finished my work at home. I never told my manager about my RP, but he knew that I didn’t drive at night. Because of this, my manager allowed me to take taxis to evening meetings at company expense.
I retired a few years ago, and now spend a significant amount of time volunteering within the community. My inability to drive has placed some limits on where I can volunteer and what events I can attend, but others offer to drive me places.
In particular, I am actively engaged in positions where I can influence public policy. My work includes advocating for well-planned and well-funded mass transit. I urge other FFB supporters to participate in community efforts to ensure comprehensive and accessible transit services, which are essential for persons with vision impairments (and others) to maintain independence.
Do I use special technology to cope with RP?
I always carry a flashlight, but do not use any special software or devices.
Tips for others:
-Cultivate a relationship with one taxi company – frequent customers get better service.
-Be prepared to explain your eye disease in non-technical terms. It will help others to understand why you may bump into things or ask for assistance, so they won’t assume you’re just drunk. This will also be useful preparation for when you ask them to contribute to FFB!
-Participate in FFB events – it helps to feel “normal”. Also, bring others with you, so they will gain a better understanding of your impairment.
-Speak up! Don’t be afraid to ask for a ride, or to hold on to someone else when walking in the dark.
-Learn as much as you can about current research efforts and clinical trials. This gives me enormous hope and optimism for future improvement in my sight, as well as encouragement to help raise money for FFB.
-Embrace black and blue! Learn to laugh when you bump into people or trip over unseen objects.
|
