Hi! Greetings from Chaos. I need to just sit and chill for a while and since I am not good at doing nothing, I guess I can write a page.
Crazy time! I not only skied Wednesday, I also went to a preschooler’s birthday party on Saturday and a gospel concert today. (Passing on a little bit of good stuff: go onto YouTube and search Sister Rosetta Tharpe “Didn’t It Rain”. The gospel roots of rock and roll. Learned something today!)
Lin said a topic the Facebook group is going to discuss is how to handle “all that bad news” of vision loss. I thought how I would approach that and did some research, but decided to approach the topic from my own perspective first. Then from the perspective of the professionals. And get ready, because I am going to be the naysayer.
What am I talking about? Oh, just what I have been saying for a while now. Specifically this: vision loss is no picnic but it is not as bad as you think it will be. What you are listening to is your fear talking. Stop listening to it!
As I have said before, I was initially told I was going ‘blind’, but I am not. I am losing my central vision, not all my sight. I may be ‘legally blind’ but I do not live in darkness. Huge difference!
The second thing about dry AMD is it is slow. It has been two years, guys, and I am still functional. Remember the commercials about waiting for the ketchup to leave the bottle? That is what it is like. If you have dry AMD, you will not be blind by next Tuesday. [Lin/Linda here: dry AMD can turn to wet AMD in 10% of those with the disease. Please make sure you check your vision regularly with an Amsler Grid or another way as recommended by your retinal specialist.]
Bringing me to my third point. A slow-go process like dry AMD leaves you plenty of time to adapt. You will not have to learn how to function as a ‘blind’ person overnight. There will be weeks and months and – yes – years until you will be significantly impaired. There is more than enough time to get yourself adjusted.
What have I given up? Driving. That is pretty much it. Oh, and a lot of reading. I used to read mystery novels. Now I listen to them. A couple of pages to be read can be read with the help of a magnifier.
Don’t panic
What would my advice be to those with a new diagnosis? Don’t panic would be the first thing. You will grieve, of course, but don’t panic. The life changes may be not be as significant as you think.
Take care of your physical health
Beyond that? Advice I would give everyone everywhere. Take care of your physical health. I stay sane by being fit and strong enough to be active in life. I can walk down the road to catch a ride on the street corner if need be. I can carry all my own ‘luggage’ for the day. CCTV, briefcase, lunch, gym clothes all go out with me in the morning. And who is lugging all this stuff? Yep, me. All by my lonesome.
Foster social relationships
I have the best group of people supporting me that you have ever met. People want to keep me involved; bless them. People actually text me and ask if I am ‘good’. They invite me to go along. Get out there. Foster the right attitude. You will meet the best people in the world, too.
Don’t be afraid to do things differently
And lastly, don’t be afraid to do things differently. Learn how to use a CCTV. Apply for BARD and listen to you books. Don’t be so pig-headed and ask for help, for crying out loud! Lots of problems happen not because of low vision but because we refuse to try a different way.
There it is. Me telling you it is not all the bad news you think it is. Believe me. Revile me. Put me on a pedestal as someone who does amazing things you could never do. But in another few years, when you are functioning just fine as a VIP? Remember who told you it is going to be okay.
Written 2/21/2018 Continue reading “My Advice to Those Newly Diagnosed”