Supporting a Friend with Macular Degeneration
We might as well get this out of the way: I do not have AMD... yet. My dad had it at a time when I didn't know much about it. I don't remember how I found out that he had advanced dry AMD/geographic atrophy because I was 700 miles away. My dad was a proud man who never wanted to admit he had limitations even in his 80s. That's a story for another post.
The good ol' days
When I was 22, I started college as an undergraduate student. I went from being married and living in an apartment to being single and living in an off-campus dorm. I had one room with no toilet and no stove. Just a bed, a closet and I think a desk. I had to walk up the hall to the bathroom and shower room. I admit that it was a shock.
The day that started it all
It was Halloween 1976 when I met Sue who at 22 was a graduate student. She was running around the dorm in some kind of a costume carrying a stuffed elephant. There were other crazy people doing similar things. I admit it, they scared me, so I locked myself in my room! Later, Sue took me under her wing (I'd led a sheltered life) and gave me 'firsts': my first travel by jet, first look at the ocean, first time at a frat party, first time in New York! Sue and I have been in touch since then. She was in my wedding, and I was in hers. I just checked - that means we've been friends for 42 years.
Then it happened
We have lived about 700 miles apart for some time. We started out exchanging long handwritten letters. Then email became our lifeline. We rarely talked on the phone, we still don't. Sometime in January 2016, she called me. That itself was a shock, but the bigger shock was that she was sobbing, "Lin, my vision's gone to hell! I can't drive! I'm young, this is supposed to happen to old people!" I never saw Sue cry, let alone sob. She had been diagnosed with macular degeneration several years before and was told, "You don't have to worry about it for 10 years or so." It was NOT 10 years when she called me. We were both 62.
The beginning of her journey and mine
I honestly don't remember much about those first weeks with her on her journey with vision loss from advanced dry AMD/geographic atrophy, the same thing Dad had. We were both extremely upset! At some point she asked if I'd set up a blog for her where she could write about her experiences, partly for her to work out what was going on, partly to help others who found themselves in the same position.
I set up a website/blog with the name she chose: 'My Macular Degeneration Journal/ey'. Or was it 'Journey/al'? ::smile:: In May, I asked her if she minded if I set up a Facebook group to supplement the website knowing that she had no interest in or time for social media. She said, "Fine." The rest, as they say, is history.
Good news, bad news
Good news: I am at Health Union - GREAT news for me!
Bad news: This is all because my long-time friend had the bad news of vision loss due to AMD. That comes to mind a lot!
The new normal
Three years and 600 pages later, Sue is leading a 'new normal' life that includes everything she did before her vision declined except she can't drive. Don't tell her I said this, but she is truly the most remarkable person I've ever known! She cobbled together an intricate system of rides, continues to work almost full time at age 65, travels, skis, kayaks, walks her two crazy puppies. She's also writing for Health Union so go read her pages!
I guess I'm called a "caregiver advocate." I gave my dad what care he'd allow me to give. I helped Sue in the early days, but she certainly doesn't need care from me. Of the 2,487 people in my Facebook group, I don't know how many I have cared for and continue to care for.
Now, what can I do for YOU?
Have you visited our new sister site, ChronicDryEye.net?