My Imaginary Wingman

It didn’t happen this way, I wish it had but it sure didn’t! Let’s enjoy an imaginary journey back in time. What I know now about macular degeneration is not what I knew 9 years ago. And that’s a huge understatement. I’m going to travel back in time and take a wingman if you will, you can call it an “angel on my shoulder.” What it really is, is me, the guy who knows a lot about AMD, I’m taking me as my own wingman to counsel and advise my former ignorant self.

Old me with my wingman

9 years ago, I made an appointment with my optometrist because I needed new lenses... or so I thought. The only difference in this little autobiography is I’ll take the “smart-me” with me. Ready? Let’s roll.

My optometrist visit

Doctor speaking: “I’m concerned about some dark areas in your macula and I want to refer you to a retina specialist, it could be nothing but we need to make sure.”

Old me: Gulp!! Gadzooks, what is this guy talking about? Oh man, I just wanted new glasses!

Wingman: Be calm, we’ll get through this, I've got your back.

Retina specialist visit

Doctor speaking: “The results of your tests confirm that you have macular degeneration, dry in the left eye and wet in the right eye. See the nurse to schedule some follow-up appointments so we can begin injections on your wet AMD eye.

Old me: Wait! What! Am I losing my vision? Am I going to go blind? You’re gonna stick needles in my eye! OMG!

Wingman: This disease often moves very slowly. It will likely be years, even decades before your central vision declines. The injections don’t hurt, you only feel a pressure but not pain, it’s over in seconds. The injection holds the wet AMD at bay. You will always have your peripheral vision, at worst you may experience a decline in your central vision.

Why don’t they tell you this stuff?

That's a good question, isn’t it? Man! Do they not have a course in medical school about bedside manner and how to deliver bad news? Sheesh! At least throw me a pamphlet explaining this disease and what to expect. But, with my first RS, it didn’t happen. I just know my current RS would have handled it differently and with more empathy.

I’m thinking of hiring my wingman on a permanent basis.

Self-talk

Why? Well, let me throw out a few quotes on self-talk:

• Talk to yourself like you would to someone you love. – Karolina Kurkova
• It’s not what we say out loud that really determines our lives. It’s what we whisper to ourselves that has the most power.– Unknown
• Be mindful of your self-talk. It’s a conversation with the universe. – David James Lees
• Don't forget to drink H2O & get some sun because you’re basically a houseplant with more complicated emotions. – Unknown

An important message to the newly diagnosed

To me, it is very important that we convey this message to the newly diagnosed. Because they are very scared and confused right now. (You remember your own reaction to being diagnosed, don’t you?) That’s the beauty of having a site like ours, a place where we can share our experiences and ease some of the fears of the newly diagnosed.

So I say, never fly without a good wingman! There is strength in numbers and we are stronger together than alone. I wish you all well on our journey.

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 the advanced stage of dry age-related macular degeneration, or geographic atrophy (GA).