One Woman's Journey
by JoAnn DeFrancesco
This article first appeared in PXE International's Summer 2008 MemberGram, and in the PXE Chat list in April 2008.
Download PDF "One Woman's Journey"
When I had my first bleed in February 2004 I thought for SURE that I would be legally blind by February 2006, maybe sooner. I was CERTAIN of it. At the time the only treatments available were thermal (aka hot) laser and PDT (aka cold laser). Since my bleeds were well outside central vision I couldn't do PDT. We chased those first few bleeds quite a distance until they were only two or three tiny squares away from the central dot on the Amsler Grid. I felt doomed.
Then I "got a grip"! After four hot lasers my doc and I had a "discussion" (let's just say I wasn't very nice!) about how I wanted to know MORE about my treatments and how I felt like he wasn't telling me the truth because he wasn't sharing DETAILS. I wanted to discuss with him whether we needed to be aggressive or conservative ... heck, I had him blow the Fluorescein Angiogram (dye test) photos of my retina up to a huge size so that he could show me EXACTLY where the bleed was and EXACTLY where he was going to aim that laser beam. He and I now have a wonderful relationship. That was the first part of me "coming around".
Prayer and Meditation
The second part was prayer and meditation. I prayed for my doctor, I prayed for the researchers looking into new treatments, and I prayed for my eyes and the retinas of everyone with PXE. When I meditated I imagined a healing hand coming over my eyes to dry up any blood vessels that might be starting to grow. Sometimes I can actually feel the weight of that hand - and I know who it belongs to :)
Researching Legally Blind
The third part was researching what it "really means" to be "legally blind" -- what could I expect to do? or not? At this time Joanie was making her way through her journey. Another good friend (Bev) has been legally blind for well over a decade. The two of them taught me that blindness is an adaptation process not a death sentence. Both of these women are productive, caring, intelligent people who have inspired me and helped me realize that I'd be just as "important" and "useful" if I were to lose my central vision as I am today - although in different ways.
How Will I Adapt?
The fourth part was to figure out how I, as an individual, would adapt. My greatest pleasures are my hobbies - reading, bird watching, golfing and crafting. I researched reading machines and reading software and now know that I can get any book read to me by a device. I started listening to birds and can now identify quite a number of species just by their calls and songs. And I've seen Julia's craftwork - so I have no worries at all there - I may not be able to do counted cross-stitch but there will be plenty I WILL be able to do. And I've played golf with a woman who is legally blind -- the only thing she asks is that someone stand directly behind the hole and make a sort of target with their feet to help her "see" the hole and help direct the ball into it.
And here I am, four years later - with 20/25 vision in one eye and 20/20 in the other. I have more hope then I've ever had because I've seen how Avastin and Lucentis have helped me and others. And I read about all the research being done. I know someday that even if I do end up legally blind that my dear friends who are already there and I will have the opportunity to get at least some eyesight back with stem cell implants or other bio-engineering.
My dream is to give back as much as I've received, but I'll always be behind in that respect; I've been very blessed in many ways through PXE International and the people I've met through it.