Macular Degeneration: A Vision AND Time Thief

I’m just going to come right out and say this because it’s a raw truth about something that I am finding so important lately. Macular degeneration threatens to steal away my vision AND my time, and this is changing who I am (in good ways).

Life is hard

I’m 37 years old and, I think, finally at that place in my life that feels extremely uncomfortable because I’m learning some really profound things. Like, sometimes life is really hard and things can’t be ‘fixed’ no matter how badly you want them to be. Or, sometimes you lose someone or something that you can’t get back and that teaches you the hard way that the small things in life really do matter.

Being present in each moment is important because certain moments in life can be so precious...or so painful...but always life-changing. And, it’s all inevitable. I’ve been asking myself what I’m ‘doing’ with my precious and painful moments because I know that my time with ‘good’ vision is ticking.

Life changes

Some of you may read that and find it negative, but I don’t. Change is never easy, but it’s often necessary, always on the horizon, and impossible to prevent. We can’t stop it. So, if we see change as negative, we will live our lives in struggle.

Are you going through something difficult right now? That’s okay! Rest assured things will change and start to look up again. Does life feel safe and happy right now? Are things going your way? Awesome! Enjoy every second of it! It may not always feel that way (I know, it’s a scary truth for all of us).

Change isn’t an obstacle

I’m trying really hard to stop seeing change as an obstacle, but as an avenue for growth and a better life. And that, my friends, is not an easy task. Something I’m learning about myself on my health journey with macular degeneration is that as the years go by, I’m becoming less tolerant of situations, people, and circumstances that threaten to steal the joy out of my time.

Wanna know why? Because I feel like I’m on borrowed time with the always present doom of possible central vision blindness hovering over my head. Each year I notice changes in my vision and I’m just no longer willing to spend the rest of my ‘seeing days’ in distress.

2019 was a tough year

I just had the most difficult year of my life. 2019 will forever go down in my life’s book as an extremely challenging one. Many positive things also happened to me in 2019, but wow, the difficult things...were DIFFICULT. And many are still hanging on and lingering as they continue to help me grow in the new year.

I’m being forced to learn a lot about change lately with so many things going on. I have no control over these things, but they still affect my life greatly. I’m well aware of the possibility that macular degeneration can steal away my central vision. But what I’ve been less aware of until recently...is that it also threatens to steal away my time. And because of this, I’m not allowing things in my life that don’t align with me living my best life.

My eyes had a good year

My eyes were good to me in 2019. Don’t get me wrong, I still very much struggle daily with my vision and the emotions that like to accompany a diagnosis of macular degeneration. But I can’t complain about my eyes too much as far as last year is concerned. I’m really hoping this continues in 2020 for me (and for you all too!).

I didn’t have any major vision changes (always a yay!), no major surgeries in 2019, and I found some great new contacts that help me to see better while working. In a really positive way, my eyes gave me a great opportunity in 2019 as well. About a year ago, I was blessed to be able to start writing about macular degeneration with Health Union, helping others through their struggle with it. This has been very cathartic and eye-opening for me.

It wasn’t my eyes, directly, that were such a struggle for me in 2019...but my macular degeneration definitely takes a part in the way I handle all the other struggles and joyous moments in my life.

How macular degeneration affects my life

First, I try to find joy in every situation...even the hard ones. Truth be told, I’m not always very good at this yet, but I’m definitely working on it. Second, I just don’t tolerate things I shouldn’t anymore. I may have had a good 2019 with my eyes, but that doesn’t mean that all of my upcoming years are going to be as generous. So, if something doesn’t feel right, seem right, look right or just plain isn’t right...it has to go.

This doesn’t mean I’m giving up on things that are important to me or dear to my heart when they’re difficult. It just means I’m more selective in what I decide is important and dear to my heart.

Since one of my daily worries is losing my sight, every single decision I make feels really big and important. I simply just may not have as much time as most people do to live a ‘normal’ life. And I do not want to spend the rest of my seeing days in anxiety, pain, sadness...or without joy and as much happiness as possible.

Guarantees in life

During my most difficult year, I grew, I evolved, and I changed in such positive ways. I may have gone through it kicking and screaming, crying and not sleeping at night, but I made it!

I know that some years are going to be like that. 2019 wasn’t my first difficult year and it certainly won’t be my last. Difficult things are guaranteed in life. But, so are amazing and wonderful things! How I choose to spend all of my years is entirely up to me.

The only guarantee in life...is change

What I’m finally learning as the days, months, and years pass is that time is not guaranteed. To any of us. And...even when we have time, it’s not guaranteed that all of that time will be filled with sunshine and rainbows. Specifically for those of us who are dealing with vision loss or the threat of it.

What macular degeneration teaches us

Maybe macular degeneration doesn’t have to steal our joy, maybe it is here to show us how to find it and appreciate it. One last thought on all of this...life is a roller coaster for all of us. It is our relationships that help each of us through it all. If you're able to be there for someone while they're experiencing something difficult, please do. You never know when it will be your turn to need support.

If you, like me, need support right now, please reach out to someone who can help. Friends, family, community members here, or even a therapist can help so much. Our unconditional support for each other is what I love most about our community here at maculardegeneration.net.

I'll leave you with a quote from one of my favorite authors and grief expert (through experience), Nora McInerny:

"We're all going through something hard. We don't get to pick what it is or when it happens, but we can help one another through it - however we can."

Stop tolerating things that don't align with your best life,

Andrea Junge