Have a H.A.P.P.Y New Year 2020!

Another year will soon be upon us. As you’ve been on this journey with macular degeneration, did you ever look ahead and see the number 2020 as a good sign? We hope and pray that it is. I'm referring, of course, to the fact that 20/20 vision is considered perfect vision.

Many of us review the previous year as we get ready to start the new one. 2019 has been a year of ups and downs for me personally.

My ups

At the end of February, I was asked to join the Health Union MacularDegeneration.net team which was and is quite an honor. I have been writing as a caregiver advocate to share what I’ve learned as a website creator/researcher and a Facebook group administrator for those with macular degeneration. I wouldn’t be here, though, if it wasn’t for my long-time friend Sue who asked me to create the website for her to share her experiences with legal blindness from advanced dry AMD/geographic atrophy. She’s also a member of the Health Union Maculardegeneration.net team. Be sure to check out her articles as well as those of the other advocates.

My downs

At the end of March, I ended up in the hospital unexpectedly. Two major surgeries and 3 hospital stays later (total of 21 days), I am still here to tell the story. I was unable to contribute to this site again until the last part of June.

When I think back on these 2 very different events, I know they have both taught me many things that I’ve been sharing - and will continue to share - thinking that some of it will resonate with you.

Let's look back at some of the articles I wrote in 2019. You may have more time to read over the holidays, and might be interested in some of the topics.

H.A.P.P.Y new year!

I do love acronyms! This one is my gift to you: I hope we can work together to make 2020 a H.A.P.P.Y new year!

H is for hope and health!

Hope!

The year 2020 has been used as a goal by many researchers, individuals, and organizations, to cure blindness. You can read more about it in 2020: Not Only a Date – A Deadline! A Cure for AMD in Our Lifetime? There is a lot to be hopeful for!

Health!

A recent research study showed that those in the study who adopted the Mediterranean way of eating had a 41% less risk of developing late-stage AMD than those who did not. Experts believe that this also applies to those who already have the disease.

We also know that a person's overall health is important. The Mediterranean way of eating has been shown to contribute to that.

There’s more about healthy nutrition, including a reference to the study I just mentioned above, in The AMD Lifestyle: Good Nutrition.

A is for adaptability!

Central vision impairment or loss is no picnic. It makes some things harder to do. It may take longer to do them. One of the characteristics of people who do well despite visual impairment or loss is adaptability. That means to be able to change what you do and how you do things. Some examples with articles:

• Adapt grooming activities such as dealing with unwanted hair (Hair Today, Gone Tomorrow) and nail care (Nail Care with Vision Loss)
• Adapt reading: switch to e-books (The World of Electronic Books) and audiobooks (Books That Talk to Us)
• Adapt hobbies and leisure time activities: (What Hobbies Can People Living With Macular Degeneration Do?)

P is for eat your plants!

One of the most shared bits of advice is to make sure you are eating lots of leafy green and colorful vegetables and fruits.  Kale is a much-hyped leafy green vegetable, but not one that everyone likes. There are alternatives in my article I’m Supposed to Eat WHAT? I Hate Salmon and Kale! You'll also find alternatives to salmon.

P is for plan and prepare!

There's a quote I like by Denis Waitley: “Expect the best, plan for the worst, and prepare to be surprised.” I used it to write about each of these phrases and what they mean to someone with macular degeneration:

• Expect the best/hope for the best: What I wanted to do was to show that there are many people living good lives even with a visual impairment or vision loss. Using the word 'expect' created an interesting conversation in my Facebook group. Some people didn't see how anyone can 'expect the best' with this disease. We agreed it should say 'hope for the best.'
• Plan for the worst: This is about looking at the 'what ifs' and instead of worrying about them, do some planning.
• Prepare to be surprised: The surprise for some may be that there are more services, low vision aids, and assistive devices than ever before! There are travel services for VIPs (Visually Impaired Persons), devices that can enhance the remaining vision a person has, and examples of VIPs who run successful businesses!

Y is for yield to a more positive perspective!

When I was in the hospital and later recovering at home, I had a lot of time to think. For the most part, I was confident that I’d be OK, but there were times when I thought about how awful this whole ‘surreal ordeal’ (my name for it) was. I'd seen this quote before, “If life gives you lemons, make lemonade.” "How very stupid that is!", I thought at the time. "How could I make lemonade out of what happened to me! It would be darned bitter!!!"

I decided to focus on the good things that were also happening: I had the best possible surgeon, terrific nursing care, and loving support from my circle of family and friends.

They were sugar for my lemonade! It made the whole thing less bitter.

When life gives you lemons...

The diagnosis of macular degeneration would make really, really bitter lemonade! It threatens not only your sight but also your independence and way of life. How in the heck do you find ‘sugar’ for THAT lemonade? I made the connection that just like my illness didn’t kill me, having macular degeneration isn’t the end. It isn’t the worst thing that can happen because it won’t kill you! There are more ideas about adding 'sugar' to your diagnosis in When Life Gives You Vision Loss, Make Lemonade.

Happy new year 2020

No matter what has happened in 2019 to you or to me, dear reader, 2020 is a chance to start with a clean slate. No, regrettably, that doesn’t mean either of us can turn back time to ‘before’ the difficult stuff happened:

• I still have a long scar reminding me of what happened. Also, I have almost-constant pain radiating from where the surgeon cut between my ribs (it's called intercostal neuralgia).
• You or someone you love still has macular degeneration.

What we both can do is to make sure in 2020 we are:

H - hopeful and healthy.

A - adaptable to circumstances we can’t control.

P - eating lots of plants for our eyes and overall health.

P - planning and preparing for what might come.

Y - yielding to a more positive perspective.

I’ll see you here in 2020 on the journey in which we are not alone!

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).