Lin/Linda here. A year ago this month, Sue and I were discussing how to get together in August when I would be in Western Pennsylvania. We had also been talking about how I might find a job because, to be honest, I really wasn’t challenging myself enough. Plus, I’d just been through several years of one traumatic event after the other and I knew it was time to move on.
On January 31st, Sue had gone downhill skiing. You can read about that in A Perfect Storm. It wasn’t long after that when I knew things had changed. Over the years, we’d settled into a routine of exchanging emails not phone calls or texts – they were reserved for sharing mostly bad news and we both had our share of that. So I knew things had gone seriously wrong with Sue when I started getting texts from her. I got a particularly upsetting one after an appointment with her ophthalmologist so I picked up the phone and called her. “I’m not an old person! This only happens to old people!”
I cannot tell you how hard it was to be 700 miles away at that moment!
There were frantic emails, texts, phone calls. She was having panic attacks. I had panic attacks but Sue was the last person in the world I’d expect to have them so I knew this was a serious situation. She said in an email “I am pretty much sick with dread.” What can I do to help? ::gulp:: I honestly did NOT know.
It was in an email to me on February 13th when she said “Just had a curiosity, have you ever written a blog? I was thinking it might be both good therapy and a way to share some of this ‘nonsense’ and knowledge with other people.“ I told her I hadn’t but that I was sure I could do something.
The rest, as they say, is the history of how the website got its start.
I struggled to get my very-much-out-of-practice brain focused on learning the software I needed to create the website for her journal pages. At the same time, I was emailing with Sue daily, sometimes several times a day, to keep up with what she was doing. I spent half my time in the early days trying to figure out what she meant in her emails when she was trying to learn to dictate them.
I wish I’d saved them all but I didn’t. Two notable ones: she wrote about her neighbor’s ‘brisket ankle’ which was a ‘broken ankle’ and ‘toxo plus Moses’ was ‘toxoplasmosis’. ::big grin::
The website part of the project went ‘live’ with the first of her pages on February 25th. There were glitches but Sue and I we developed a routine that is still in place (you can read about it in About Our Project). Somewhere along the way, I volunteered to do research and create the blog part of our project so that we could provide up-to-date information. We added the Facebook group on May of last year.
Sue wrote about what she learned. As for me, I have been reminded that when it comes to doing the research, it’s as Aristotle said: “The more you know, the more you know you don’t know.” I learned a lot about macular degeneration of various types, of course.
I learned that we know so much more about macular degeneration than we did 10 years ago and that there is a lot of hope for the next 10 years.
And I did learn that my brain does still work – most of the time – after some coaxing and as long as I’ve had my second cup of coffee. ::grin::
What I did NOT learn, because it is not news to me, is that my dear friend Sue, when faced with adversity, has an amazing ability to rise above uncertainly and fear. And she has done this with honesty and humor, two of her most endearing qualities (of course there are many others ::grin::). It’s been a roller coaster year for her and I’ve been beside her on the ride – we both have had enough of that. There’s some comfort taking the Ferris Wheel instead!
written 1/26/2017