Recently we had someone ask what to expect when you are expecting…vision loss. (Sorry. Couldn’t resist!) Although I do not have children, I would imagine there are parallels between the two forms of expecting. They can tell you what might happen. They can tell you what typically happens. They cannot tell you what is going to happen. That awaits to be seen.
The truth is, few of us are normal, statistically speaking. I was told my vision loss was going to be a very slow process. Yeah, right. I “lost” my second eye seemingly overnight. I was told rapid progression like that only happens in the very old. I was 62. So much for statistics!
We are all on very individualized journeys. No one person can say her disease will progress in the exact, same way as the next person. That does not, however, mean no one has ever walked that particular section of path before. Someone in the AMD community has been where you are now. Native guides are available.
The person who wrote was just starting the journey. The expectation of something terrible happening – and not knowing when – is very anxiety producing. I am going to take a liberty and assume the writer was feeling that anxiety and worrying when she asked for guidance.
First of all I would suggest you be mindful of your life just as it is.
We cannot rescue the future by worrying about it but that worry can destroy the present. Always remember to focus on what is good in your life. You have sight now. Enjoy it now. Don’t let your AMD rob you of any more than absolutely necessary.
That said, now is the time to prepare.
Do you have a good retinologist you trust? No? Find one. Do you want to get all sorts of “freebies” in technology and services? Don’t quit your job just yet. The agency I got my “toys” from has a mandate to help people stay in the job market. Those who are not working receive a fraction of the funding I received.
Working or not, I would suggest you start contributing to a “war chest” as soon as possible.
Disability is expensive! Even if you get services there will be things that do not get reimbursed. If you don’t get services, things are much worse.
Check local resources. The day is coming you will not be able to drive. How do you get places? That was my big one but there are others.
Get used to asking for help and accepting it graciously.
Don’t be afraid to tell people you are visually impaired. Admitting weakness is a sign of strength. People like to help, but be careful not to give the “honor” of helping to one or two people. Spread the wealth.
Look for opportunities to participate in the helping cycle as well.
What goes around truly does come around. Just because you are visually impaired does not mean you can’t be of benefit to others. People still need what you have to offer.
Those are the thoughts that came off the top of my head. Comments? Anyone have any other thoughts for the “new kid”? Hope we helped!
Written January 7th, 2019