Adjusting to Blindness – My Own Experience

In my last post, I mentioned that I felt my adjustment to blindness was quick and relatively easy.

In her memoir, Out of the Whirlpool: A Memoir of Remorse and Reconciliation author Susan W. Martin likens sudden vision loss to death and rebirth: One has to accept the death of the former Sighted Self and be reborn, not as a lesser version of that former self, but as a new Blind Self.

It’s not uncommon, according to Martin, for the process to involve significant struggle and grief over the loss of the Sighted Self.

That wasn’t my experience.

This isn’t to say that my transition from sighted to blind went off without a hitch. There were moments of aggravation and frustration, days when I wished I could just put my eyesight back on and go home.

I do recall one terrible night I spent sitting in the living room, crying inconsolably, absolutely convinced that I’d become worthless, that I would forever be a burden to my family, and that they’d be better off without me. Both my sons, one after the other, sat with me and tried to comfort me, but I wouldn’t be consoled.

When my husband woke up that morning, he, too, sat with me and offered to stay home from work. I declined, but I did make him take the key to the gun safe with him. It wasn’t so much that I thought I’d actually do myself harm – I’m not sure I could have managed to use the gun if I’d decided to – as that I suspected that if the possibility were there, I’d spend the day obsessing over it.

I don’t remember what brought on that horrible night, but I’ve never experienced another like it since, and I dont’ expect to.

For the most part, though, I feel as though I slipped into the new blind me about as painlessly as anyone could.

I think there were a number of factors that came together and smoothed the passage for me, and I’m grateful for every one.

My Good Buddy Bob

First of all, there was the whole brain tumor thing. Bob the Brain Tumor very nearly killed me, and when I walked out of the hospital (okay, was wheeled out of the hospital) in some ways I already felt I’d been reborn.

Too, Bob was sitting on the front of my brain, stifling critical thinking and muffling emotion.

As my vision declined, I knew that something was wrong and thought that I should do something about it. But I couldn’t decide what to do, and I was very tired. I couldn’t feel any urgency toward the situation, so I’d resolve to think about it when I was rested and slip into sleep or daydreams again.

After the tumor was removed, even while I was still healing and on powerful medication, my thoughts were clearer than they’d been in a long time. And it was such a joy to be able to feel emotion again! If I regained myself at the cost of my vision, it was a price I was willing to pay.

Finally, my vision loss was very sudden. I didn’t quite lose my eyesight overnight, but the time between when I first noticed my vision becoming blurry and near-complete darkness was less than three months.

And when it was gone, it was gone. There was no lingering, no false hope, no way to pretend that I could still see in the same way I had before.

I was blind, and that was that.

Previous Conditioning

I’ve been extremely nearsighted since childhood, to the point of not being able to function without my glasses. I couldn’t make out faces, could read print only with difficulty, and I certainly wouldn’t have been safe to drive!

So in a way, every time I did something in my former life without glasses – walked down the hall to the bathroom in the middle of the night, poured a cup of coffee, or went for a swim – I got practice adapting to low vision.

I got used to trusting my body to move carefully through the space around it, to letting my hands manage without close supervision from my eyes.

Of course, doing things completely blind took this to a whole new level, but I believe I’d been laying the groundwork for a long time.

World’s Greatest Family and Friends

My husband has told me that the first time he saw me after the operation, he knew he had me back again, and he believed without a doubt that I’d recover.

From the moment I arrived home, the question was never, “Will she be able to do things again?” but “How will she do them?” And MrH and our sons became expert at finding techniques that helped me adapt.

In the early days, when I was so debilitated that I couldn’t stand at the sink long enough to wash out a bowl I’d just used, they stepped up and did everything for me. They brought things to me and took them away, led me through the house by both hands, found outfits for me to wear.

But as I began to recover, they did something even harder: They stepped back and let me do things for myself, even when I fumbled and stumbled and yelled in frustration, they refused to step in and help me unless I asked them to – and then they did it willingly.

Our friends were also wonderful about accepting the “new me” as the strong, competent person I’d always been. Sure, I’d taken some damage, and it was going to take me a while to recover. But they never doubted that I would recover, and that’s a gift I can never repay.

I’ve met blind people whose families refuse to let them do things on their own, whose partners have said, “This isn’t what I signed up for.” and split, whose friends have stopped coming around.

I have to say, I think I hit the jackpot.

A Great Example

When I was in college, I knew a guy who was dating a blind woman from another town. He’d sometimes drive over and bring her to spend the weekend with him.

B. lived in an apartment, and I remember her telling me that when she moved in, her dad marked the stove dials with dots of nail polish so that she’d be able to feel them and do her own cooking. B. caught the bus on weekdays, though I can’t remember this many years down the road whether it was for work or school. She mentioned going places with friends in her hometown.

This same guy had dated another blind woman before I’d met him, and he told me about how her service dog would jump into the front seat and stand on the horn if they left him waiting in the car too long.

I never met this second woman, and B. and I didn’t get along particularly well, probably because I was a jerk at nineteen and also because I was interested in the guy she was dating. But encountering them, even secondhand, gave me a paradigm of blind people who lived independently, went to school or had jobs, and had friends and boyfriends and agency in their lives.

Is it any wonder that when I became a blind person, I assumed, at least subconsciously, that my life could be like that?

[By the way, B., if by some chance you should come across this and recognize yourself, I’d love it if you’d get in touch! I like to think I’ve grown up a bit in the last few decades, and I’d love to touch base.]

Other Factors

I could go on and on.

My parents taught me to face change head-on and embrace it, then adapt. My father passed away long before I lost my eyesight, but I think he’d be proud of how we’ve come through it. I know my mother and her boyfriend are.

My parents also taught me to love arts and crafts and to try as many of them as possible. I think that wealth of experience has made my fingers more flexible and adaptable, especially now that my eyes no longer guide them.

My sister has been absolutely awesome, and knowing she believes in me has been huge. My extended family, too, have been wonderful and have encouraged me and supported me at every turn.

One of the first things my husband did when I came home was to find NVDA, the screen reader that lets me use my computer. This not only let me write down the stories that were crowding my mind and kept me entertained, but put me back in touch with the world on a more or less equal footing.

I know this has been a long post. Adjusting to blindness has been a long process. In some ways, I’m still figuring out who I am, what I can do, and who I want to be.

A lot of factors have made the adjustment easier, but I don’t think anything could ever make it easy. Then again, I don’t think anyone has life completely figured out, and I’m not sure life is meant to be easy.

I feel as though I’ve reached a point where I’m comfortable in my own skin – my new, blind skin. I’m happy with who and what I am, and look forward to seeing what I will become.

I’ve been very, very lucky in the circumstances that have helped me to reach this position, and I’m exceedingly grateful for every one.

Advertisements

11 thoughts on “Adjusting to Blindness – My Own Experience

  1. That’s a great post. Thanks for sharing it. I myself am experiencing a slow decline in sight on account of glaucoma, and I can’t figure out which is worse, an abrupt switch or a gradual decline. Either way, I’m glad you’ve come around to recognizing that life is not over after blindness. And awesome of your family to see your new limitations but open enough to step back and let you discover your real limits for yourself. When you think of it, there aren’t a whole lot of them.

    Like

    1. Joe, thanks! I’m glad you enjoyed my post.

      I’m so sorry to hear of your own vision loss – there is life after blindness, and it can be great, but it’s a heck of an adjustment, and blindness/visual impairment can be really…inconvenient at times! I hope you’re able to find resources, either online or local to you, to help ease the transition.

      Best of luck, and keep on writing!

      Like

      1. Hi, David! I definitely got lucky in my family and friends! We’ve had our share of ups and downs, as every family does, and I like to think that if the roles were reversed, I’d do the same for them. Glad you stopped by, and thanks for leaving a comment!

        Like

  2. Great article. I began to lose sight in 1987 and was only light perceptive by 1988. Looking back, the time of losing my sight was much more difficult than actually being totally blind. Having a very supportive spouse and great family made all of the difference.

    Like

    1. Darryl, thanks! I’m so glad you enjoyed it. I think you’re right that spouse and family can make a huge difference. I wish there were more support for spouses, significant others, and family members of people who experience sight loss. It can be a huge change for them, too, and there’s not a lot of information or support out there. That’s especially true for younger adults – it seems to me that most information focuses on vision loss in children or older adults.

      My husband and I have talked about setting up a social or activity group for blind/vision impaired golks and our spouses, significant others, and families. Maybe we’d go out for dinner, or hold potlucks, or go to a local concert or baseball game. It would be fun to hang out among people who are used to our quirks, and maybe helpful for some who were just starting out on that journey.

      Thanks for stopping by, and for leaving a comment!

      Like

      1. You are so correct. It would be very helpful to significant others to be able to talk with other supportive people. I remember when this first happened to me and my wife attempted to reach out to an organization and was told she was not the one with the problem and needed to just be supportive. Needless to say it left a bad taste in her mouth. Currently we are surrounded by loving, helpful people in our inner circle, but it would be great to be able to expand this circle of understanding.

        Take Care and God Bless.

        Like

  3. Hi Sherry
    I enjoyed your post.
    I already knew a lot of it, as we’ve ‘talked’ via writing forums, but I’m still amazed at how well you cope with your new circumstances. I’m glad you’re surrounded by loving and supportive people.
    I hope you’re finding the time to write down more of the stories that fill your head – I always enjoy reading them.

    Like

    1. Del, so good to hear from you! I’m embarrassed to admit I’ve been more or less in hibernation these past few weeks, mostly reading audio books, and the only writing I’ve done has been on Twitter… I guess I really need to poke my head out, dust off my keyboard, and maybe even visit some of those writing forums I’ve been neglecting.

      Thanks so much for stopping by! Hope you’re keeping well.

      Like

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s