Do you or does someone close to you suffer from Macular Degeneration?

Here I am with my cane!
Here I am with my cane!

I have Retinitis Pigmentosa, a form of Macular Degeneration. After my first shock when I was diagnosed at 28, I filed the information away as if I didn’t have it at all. That’s because my vision loss was gradual. So, in a way, it “tricked” me into complacency. I didn’t prepare for my future as a blind person. Suddenly, I had a huge drop in vision and that’s all I could think of.  I had questions like:

  • God, why me and what now?
  • how can I continue teaching?
  • who do I call to get more help?
  • who knows what it’s like to face these issues?
  • am I going to have to use a cane in front the whole world?
  • what are people going to think? I’m so embarrassed!

Looking back on this period of my life, I sure had a lot to cope with: two new teaching jobs, an unanticipated hearing loss, a LOT of vision loss, how I saw myself. And the unspoken fears!  Fears about fitting into my new work environment,  of change and worst of all, what my future held for me.

But guess what? God got me through it! Not only that, but I became excited about my future again. That’s the  great news!

I didn’t want to “waste” what I went through, or how learning to use a cane dramatically changed my outlook and how God placed people in my life to meet my needs at that time.  I didn’t want others losing their vision to feel so alone or lonely, like I did.

I decided to write a book to encourage others facing what I had at that stage of my vision loss. It’s called Mobility Matters: Stepping Out in Faith. Choosing to pick up a cane is an enormous step for any person who has lost sight gradually. You are announcing to the work, “I am blind!” That pulls you in so many directions–emotionally, socially, physically…

When I started sharing my manuscript, I discovered  that it not only encouraged vision-impaired people, it offered hope to others facing their own problems, whatever they happened to be. It reminded people to have faith, be optimistic, to look for ways through challenges, to share and to problem-solve. It also gave people permission to grieve, to rant and to be human. Most importantly, it sent the message that we need to learn to accept ourselves in spite of our imperfections.

No one has the perfect solution.

I continue to lose more vision and hearing. But my attitude is changed now.

If you are struggling with any kind of loss, not only vision loss, seek out my book. Know that you aren’t alone.  We all have problems out of our control. It is our response to those problems that determine the quality and enjoyment we find in life–regardless of circumstance.

I’d like to share what my readers have said about Mobility Matters. 

I like this comment because it points to my humor and I like to laugh. When I was learning to use my cane, my predicaments often struck me funny and it was good to poke fun at myself–even when my cane was poking me, too!

Her friends remind her to “filter her life through a lens of laughter.  Even during her worst moments throughout the story, humor find its way through the cracks of her fear of the unknown. –Kerry 

Several people shared how they appreciated my honesty. At times I struggled with including my flaws but I knew in order for my book to impact others, I had to share a true picture of my attitudes and faults.

A candid few of the struggles of losing one’s sight. –Shannon Effa
Thank you for being vulnerable, [your] heart shines through loud and clear. –KB          

When I write, I like to be approachable, as if I am talking to a friend. This comment showed me that quality came through my book:

Her style of writing is conversational and I often felt I was right there with her… I found encouragement and inspiration to face my own challenges. I think this is a book I will return to when I’m discouraged and need a friend to remind me how to survive and thrive. –Lindy Teep

I received a lot of positive feedback from vision-impaired people who said, “they’ve been there, felt that, done that.” A few have said it “could be their story.” Others have recommended it as a “must read” for anyone going through vision loss. Even family members and friends of the vision-impaired thought it beneficial:

An excellent book which I highly recommend. The author has deteriorating sight and hearing as a result of Usher Syndrome and the experiences that she shares are a great contribution to understanding how to overcome such barriers.–Roanne

I love that it also has a faith element.

One person’s struggle to accept a life changing condition with a cane in one hand and God’s hand in the other. –Sue V.

This is one of my favorite responses because it’s so cleverly written:

I strongly encourage anyone and everyone to read Mobility Matters: Stepping Out in Faith, no matter where you are on your journey through life. As you learn about Amy’s vision impairment, you’ll indeed find that perhaps we’re all a little more blind than we even knew. Don’t worry; you’ll see life much more clearly by the last page. No bifocals needed!–Brittany Jo James

Are you in need of encouragement today? Do you know someone who is? Let me stretch out my hand to help you move forward in optimism. Physical (and other) challenges need note sideline or stop us. There are ways to overcome. There is hope to enjoy life with the right perspective combined with the right training.


Click on one of the links to purchase your copy today. Mobility Matters: Stepping Out in Faith is available on Amazon (worldwide), Createspace, and my website in regular-sized print, large print, kindle (and one day soon, in audio). You can get signed copies from my website. 
*As of February 1, 2015, all purchases will include S & H.  PA residents must pay 6% sales tax. 

Do you have Macular Degeneration?
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8 thoughts on “Do you have Macular Degeneration?

  • January 26, 2015 at 5:21 am

    I look forward to reading more of your adventures here on #blogboost. It is a great place for you to encourage others who may be facing other challenges and are seeking healing through their writing. Blog on . . .

  • January 26, 2015 at 6:03 am

    Hi Doug,
    Did you read the one about the stove top fire in yesterday’s post? That was a HOT adventure!
    Will be blogging on! =)

  • January 26, 2015 at 10:13 am

    You’ve faced your challenges with courage, Amy. Anyone reading your blog couldn’t help but be inspired to face their own future with optimism. I’d recommend your book to anyone, able or not.

  • January 26, 2015 at 1:38 pm

    What a strong lady you are. I love the fact that you took your unfortunate situation and shared a part of it, the vulnerable and frightened side, to share with those who will be walking the same path. Best of luck and I commend you.

  • January 26, 2015 at 2:37 pm

    Thank you so much, Francene!
    Now if I could only manage to cook without those fires?!
    Have a great day!

  • January 26, 2015 at 2:39 pm

    Thank you, Melody!
    If you meet someone with macular degeneration, remember to tell them about my book!

  • January 27, 2015 at 12:25 am

    Hi Amy,

    I can certainly relate how this disease can “trick us into complacency.” As I’ve lost sight over the past several years, I’ve put off re-training and now I need to play catch up. RP is such a twisted and deceptive disease. But I thank God for Kindle Fire and ZoomText. Without them, I’d be unable to use the computer and read.

  • January 27, 2015 at 5:32 am

    Hey Matt,
    I have ZoomText on my computer, too. But I haven’t used it yet.
    RP is such a sneaky kind of vision loss. Like glaucoma, it comes and takes like a thief!

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