One Woman’s Journey – PXE

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”.

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 🙂

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.

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.