Celebrating Small Victories With Vision Loss
I used to pity myself for not being able to see well. Feeling sorry for myself came easily because I spent a lot of time focusing on what was going wrong in my life instead of what was going right. Before I learned that I get to decide my own perspective and mindset about the hard things in life, I used to mope around basically hating life.
I was diagnosed with myopic macular degeneration at a really young age; I was only 26 years old. I was young, I was pregnant, and I was grieving. Grief, you may be wondering? Yes, grieving the life I had planned for myself.
Besides the threat of total central vision blindness and a visible scotoma, I was also noticing an extreme loss of clear vision year after year. As the years passed, I got more worried and more anxious about it all. How could I not? There was really big stuff that required deep thought that quickly turned to worry.
Things like... Would I still be able to work if things got worse? How would I pay my bills? Do I need to purchase disability insurance? How will I drive my children from place to place? It all started piling up. I remember sitting in the back of my classroom unable to see the wall clock clearly. And… I had to squint sometimes to read my students’ often sloppy or small handwriting on their papers.
Eventually, I got scared enough to visit my doctor before my regularly scheduled annual appointment. My retina specialist said he couldn’t do anything for me for this particular ‘issue’ and directed me to my optometrist to ‘change [my] prescription. I have an amazing optometrist that I’ve seen since I was a young girl. She knows my eyes well.
It’s tricky to get the right prescription for my eyes because of my extreme myopia. I’m so nearsighted that the phoropter, an instrument used to test prescription strength for the eyes during an exam, can’t read my refraction entirely. So, my optometrist does the best she can and does a sort of trial and error process with me.
Trials, errors, and never giving up
She gives me one prescription, I try it out for a few days or weeks, then go back to see her if I need another adjustment. I went back and forth to see her a few times and started really losing hope. I wondered, “Is this just my life now?”
Eventually, she decided to stop trying to change my prescription and was finally able to find a different type of contact lens that allowed me to see better. You see, the problem was that I needed a hard lens for clearer, more crisp vision, but a soft lens for comfort and less ‘wear and tear’ on my eyes. I started to get discouraged each time I saw her, but she was determined and never gave up on me.
Hybrid lenses changed my life
These new hybrid lenses were life-changing for me.
I know the very moment my martyr mentality turned hopeful. I recently ran across an old Facebook post in one of the macular degeneration online support communities I’m a member of. It’s been four years since I wrote this post:
“My dear macular journey friends, I don’t post on here much, but I do read your posts and my favorite are the ones that give hope and strength to each other when our eyesight can sometimes make this life feel hard. I have myopic macular degeneration… Long story short, my right eye is -16 and my left is -16.5. Needles to say, I don’t see well. I never have. Until TODAY.
I have been struggling with my vision this last year. REALLY, really struggling… Like, can’t even grade student papers right in front of my face without squinting. I’ve been to my doctors six times in the last two months and my miracle-working optometrist finally figured it out. I’m wearing a new type of lens and it’s been life-changing. I cried on the phone to my friends and family because: SIGHT! I can see, like really SEE for the first time IN MY LIFE. I’ve been crying and giddy laughing since I got them.
I cried the whole way home as my kids asked me if I could see this or that… And I COULD! I can’t even believe how much I was missing! Like, I can read signs and see faces clearly when I’m not up close and the tree branches are pointy and the headlights and Christmas lights don’t have a halo. It’s NUTS, completely insane! I even look different when I look at myself in the mirror!
Life is beautiful and I’m more than thankful for my literal new outlook on life, for all my people who support my vision struggles, and for the perseverance of the professionals I trust with my failing eyes.”
Don’t give up
Whatever it is you're struggling with today, I urge you to not give up - no matter how hopeless things may seem. I wanted to share this post with our amazing maculardegeneration.net community for a few reasons. First, I think it’s important to be vulnerable and own my past martyr victim tendencies. That was an important part of my journey with this disease. Second, I want to show all of our awesome members here that there’s always something to be grateful for and to never give up on ourselves.
Staying in our ‘stinkin thinkin’ can really be dangerous because it can keep us stuck in our oh woe is me mentality and not give us much space to learn and grow.
Do you still drive?