The Hardest Part

There’s a saying among people with Retinitis Pigmentosa: “Being blind isn’t hard. Going blind is hard.” I’m not sure that being blind is easy, exactly, but I do believe that this season, the transition between sight and blindness, will probably be one of the hardest of my life.

Part of this is the basic sense of loss, and loss of control. Something I once had is disappearing, and there is nothing I can do to stop it. I don’t know—can’t know—what I will be able to see next year this time, or five years down the line. It’s hard to literally watch my vision spark and fizzle away. 

But that sense of loss isn’t really the hardest part. The hardest part is just how much work it is to go blind. Because I’m not just losing my sight; I’m losing all of my habits, routines, and processes that rely on it. 

Every time I use my eyes to locate something, track something, or assess something, to organize or to remind myself of something. Every task that relies on even the tiniest bit of visual information-gathering. All of them have to be reconsidered and relearned.

Because of course there are different ways to do most of these things. I can replace my lost abilities, can replace the visual information with information from my other senses or my pieces of assistive technology. But it means changing the way I’m accustomed to doing almost everything I do.

It means adaptation, and adaptation is hard.

Learning—at every turn, in every part of life, every day—is exhausting.

And demoralizing. All of these things I’m learning? They are things you’re supposed to learn as a child, not in your thirties. Actually, they’re things I did learn as a child. I learned them at two months, when I smiled back at faces that smiled at me, at three months when I grabbed a toy and shook it for the first time. I learned them  when I sat up, crawled, took my first steps. When I learned to read the menus on our first computer, and went from there to reading chapter books, novels, and a list of languages stretching back to the dawn of history.

I learned them over the course of a lifetime, one skill building on another. Skills so basic and so foundational we barely think of them as skills at all. Skills that need to be mastered to the point of effortlessness so we can focus our energy and attention on the next, greater height. Now much of that knowledge and skill is becoming useless. 

Many days, I feel like I’m spending all of my energy digging myself out of a hole, or bailing out a leaky boat. Like I’m running as hard as I can just to get to the starting line—never mind the finish line. 

I miss the feeling of progress, the feeling that the work I’m doing is moving me forward, instead of just keeping me from falling behind, or falling apart. 

And when will it end? RP is a long and slow disease. I’ll be living in this process for years, for decades even, weaning myself off of vision in bits and pieces, one task, one process at a time.

It will be hard, grueling at times, but the alternative would be much, much worse. Refusing to face the difficulty head-on and avoiding the hard work would lead somewhere worse than daily exhaustion. It would lead to stagnation and despair, and that’s something I refuse to tolerate.

So I’ll keep working, facing the days when simple tasks become suddenly arduous and stressful, finding new ways to do them, and then not giving up until they are mastered again. And hopefully, with each new adaptation and each new skill, it will get a little easier, until someday I reach that place where I can say “Going blind was hard, but being blind isn’t.”

21 thoughts on “The Hardest Part

  1. Eric, I so appreciate your honesty and openness as you share this journey. We take so much for granted and reading what you are struggling with not only makes me thankful for my eyesight but also better able to pray for you. For me it is so frustrating to not understand how I can help you, but you have been in our prayers and this blog will even allow us to pray more meaningfully. Keep up the struggle and looking forward to the day when you can say: “Going blind was hard, but being blind isn’t.”

  2. I think this is the part of your life I find myself wondering about the most–about the loss, adaptation, work. So glad to hear your thoughts and inner world. You have many strengths to lean on in the process.

  3. This is a great post that so perfectly describes the struggle of losing vision and adapting to the changes. And with each change and adaptation, there is also a grieving process, at least for me. But I hope to also be able to say, “Going blind was hard, but being blind isn’t.” I plan to re-blog this on my own site. Thank you for sharing!

    1. Thanks, Virginia! Feel free to re blog. There is something of a grieving process, isn’t there? Especially with things I really liked. Good thought.

  4. as a Person at the other end of this Rp journey, With only like perception left.
    And in my early 60s think that retraining my brain to learn new technology and all the changes I had to take on really In proved my memory, and think there is Something we can all learn about in neuro plasticity.

    1. I love to hear this! It is hard, but hard work always has benefits. I have always thought that being low-vision as a child helped me develop a good memory. Great perspective—thanks for the comment.

      1. I am reading a book at the moment that may interest you, it’s called the brain that can change itself.
        Quite a phew references to how blind people adapt and other senses take over.
        The author is Norman doidge.

  5. Eric, thank you for your bravery and clarity in speech. Such honesty is highly valued and highly valuable.

  6. So glad to have come across this post (and your blog, as a whole!). As a fellow person with RP, your words really resonate with me here. The extra effort and strategic planning involved with day-to-day activities can certainly be draining. But you’re right, exhaustion sure beats the alternative route of giving up and giving in. Underneath the everyday frustrations, i’ve definitely become more appreciative of my skills and abilities that I once took for granted. I’m looking forward to reading more of your insights!

  7. Hey there–this is awesome! I’m so glad to see you’re so motivated, inspired, and positive despite your vision loss. You really make me happy to see that there’s others out there like myself. I wanted to write to you because 1) I wanted to let you know how helpful your blog has been for me and 2) to discuss options that can help. There’s a company called OrCam that offers smart glasses for the visually impaired. I was just wondering what you thought of them, or if you’ve ever used them? Essentially, they offer talking glasses for the blind that help with reading/recognizing faces/text/etc.–have you user used their product? I’m considering purchasing one myself, but I’d love to hear feedback from you! Let me know if you can. If you haven’t used them, no worries. Thanks for these articles, you truly are an inspiration! Keep it up! 🙂

    1. Hi Gary! Thanks for the comment—I’m glad my blog is helpful. I’ve never tried Orkam, but I’ve heard some about it and it seems like a cool product. Thee are also competitors like Cybereyez, that you might want to check out too. If you do get a pair, please let me know how they work out!

  8. Thank you for your wonderful blog. I just learned that I have RP 5 months ago and I’m 47. No history in my family so really out of nowhere. Your blog has lifted me out of my initial fog of despair. Time for me to get to work! Thank you.

    1. Thanks for the comment, Kate! I’m one of those with no family history too, so I get the feeling.
      Glad to hear it was helpful. That’s one of the main reasons I started this blog, to add to the community of great blind people who are getting down to the hard work of taking control of their own lives regardless of their circumstances. I wish you all the best!

  9. What a brilliantly written piece! Precisely the words to perfectly describe how it feels living and being a working professional with RP. I wish I stumbled upon this sooner because it is also very difficult to describe to others effectively the unrelenting struggles and sacrifices we make adapting to seem ‘normal’ – let alone being exceptional at something. Deep gratitude for sharing and thank you for not giving up.

    1. Thank you! I wrote this quickly and I didn’t anticipate the response it’s gotten. It is the most viewed thing I’ve ever written, so it seems we are not alone in this feeling. Keep up the struggle!

      1. Thanks for the encouragement. If this was written in haste, then it’s even more impressive. Clearly writing is one of your callings. Keep doing what you do to make the world a better place. May I share your post with others on social media?

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