Have Macular Degeneration? Not Feeling Very Grateful?

With Thanksgiving approaching, there’s a lot of talk about being grateful and counting our blessings. At various times along the journey with macular degeneration (MD) and other challenges that life throws at us, that can be a struggle. Yes, we can say we’re thankful for food, clothing, and shelter, but sometimes that just doesn’t feel like enough.

I’m going to be blind, how can I be grateful?

I used the word 'blind' on purpose because this is what people say when they tell me about their fear. No, you are not going to be blind if you mean that you'll have no light perception as is the case with people who are totally blind. My friend Sue has advanced dry AMD/geographic atrophy and is legally blind, so I'll let her explain it. Check out her article 'BLIND, Low Vision, and Legally Blind.' Is this something you can put on your 'list of things to be grateful for'? I hope it is.

Practical things to be grateful for

Let’s talk about some ‘practical’ things we all can be grateful for. Don’t worry, I’m not going to be making you feel guilty that you’re not gushing with positivity. If you are not counting your blessings at the moment, that’s OK. Let’s try this.

Some of the dates are from my article ‘Timeline Part 1: Advances in Treatment & Care for People with Macular Degeneration.' I integrated the dates related to macular degeneration from another article with the dates related to technology that is helping VIPs every day.¹

Less obvious reasons to be thankful

How are you reading this article? Are you on a laptop, tablet or smartphone? Are you connected to the internet or using cell service? Are you reading this on our site or did you see this on our Facebook page?

No matter if you live alone or live with others, no matter where in the world you are, no matter whether you have good vision or not-so-good vision, think about:

• How you are making this connection between us RIGHT NOW.
• How you can reach out to connect with others ‘in the same boat.’
• That you are able to access information to help you make informed decisions for your vision and general health care.

Can we at least be grateful for these things regardless of where we are in our journey? I think so!

Thankful for the internet

If it weren’t for the internet, where would you be getting your information about macular degeneration? Where did people get it before the internet? How did people from all over the world come together to share and discuss MD without the internet and social media? Computer networks were established in the 1960s. It wasn’t until the early 1990s when the World Wide Web (WWW) became available to non-technical users. I was working in the field of computer training then so I was a technical user. I can remember that the WWW really wasn’t easy to use until the shift to the internet which came to mean using web browsers and later apps.²

Thankful for cell phones, tablets, and smartphones

I remember my first so-called cell phone. I don’t remember when, but it was 1983 when they were first marketed. Mine came in a big case that I had to plug into my car cigarette lighter via a long, twisty cord. Finding cell service was tricky.

It wasn’t until 2007 that the Apple iPhone was released, 2008 for Android phones, 2010 for the Apple iPad. With those devices came apps of all kinds, easy-to-use cameras, reliable cell phone access, and navigators. With those features, VIPs can figure out how to do tasks that help use the vision that they do have. There are built-in accessibility options, apps to magnify, identify, and help you get around in your world. You can connect with a sighted person somewhere in the world to help you read the ‘use by’ dates on the food in your refrigerator! You name it - there's an app for that! ::smile::

Thankful for Facebook and social media

Facebook came to the Internet in 2004. Prior to that, there were groups called forums on the Internet, but they were text-based (just words on a screen) and difficult to use. In 1994, I was signed up with several of these forums for various topics. I assure you, modern social media is much easier to navigate! I remember one such networking option was GEnet supported by General Electric.

There are quite a few MD groups not only on Facebook but other sites with various types of members and approaches. Of course, we know that not only do you come to this site but that you come to our Facebook page called MacularDegeneration.net which has the same name as the site. Right? Have you been to our Facebook page?

Thankful for Dr. Google

How many times have you gone to Google (1996) to look up a disease or symptom? That’s a good and bad thing sometimes. It’s good that we can understand our diseases and manage the care we’re receiving. However, it also leads to diagnosing ourselves with something that we don’t have! I’ve done it, I’ll admit it.

If it weren’t for Google and other ways to search the internet, people like me and our advocates couldn’t share with you what we have found that we think will be of interest to you. I remember as a kid having to lug around heavy encyclopedias to get information for a school paper. Not fun, but that’s what we had.

A few obvious reasons to be thankful

I’d be remiss if I didn’t mention some of the obvious reasons to be thankful:

• Low vision aids ranging from the simple to the mind-boggling!
• 2004-2011 brought us an effective treatment for wet AMD/CNV in the anti-VEGF injections. Prior to that, the laser treatments used often damaged healthy tissue as well as stopped the bleeding.
• When people could no longer read printed text, the only option was large print materials that were limited in availability. We now have e-books and audiobooks galore that are easy to use.

Important last thing

I said I wasn't going to make you feel guilty if you weren't gushing with positivity. I won't. I do have to say that the holidays bring on depression for several reasons: shorter days so less sunlight, missing loved ones who are not with us for whatever reason, feeling alone. and of course having a disease like macular degeneration.

It's OK to have 'the blues.' I know from personal experience that it is NOT OK to be depressed for weeks and months. It happened to me. If it happens to you, there IS help available I know that, too, from personal experience. Here are some options:

• Talk to someone about it. Remember, we're here to help support you so use us!
• Our site has quite a few articles about mental health.
• There are counselors that can help. If you can't find any, there is the National Institute of Mental Health which has both educational materials plus a 24-hour-a-day, 7-days-a-week hotline:  1-800-273-8255. You can ask them to help you find services that you can afford - they are available.
• If you have thoughts of suicide, please call 9-1-1 or the National Suicide Prevention Lifeline at 1-800-273-TALK.

Can I get a smile?

Even just a small one? Be thankful you’re not a turkey! ::smile::

Take care of yourself, please.

Editor's Note: As of August 2023, 2 drugs known as complement inhibitors — Syfovre® and Izervay™ — have been approved by the US Food and Drug Administration (FDA) to treat geographic atrophy (GA).