That Ain’t Blind

Yesterday, I listened to a woman tell the story of her blindness.  Like me, she has RP and, like me, she has partial sight.  She’s my age, married, no kids.  We have much in common. 

She told her story to a roomful of people like us.  She wept while telling how she’d had to quit her job and stop driving as her eyesight waned.  She spoke of walking independently, then with her cane, now with her dog.  We all felt for her; her story was our own.  We have the bond of a shared disability.

Then she said she can still read her mail.  Read it with the naked eye.  And I thought, “Read the mail?  That ain’t blind.”  And I lost my connection with her. 

Her talk ended.  I shuffled to the bus stop.  I could read no street signs, no bus numbers.  Five years ago I could.  But she can, and she thinks she’s got it bad.  The nerve!

I know my reaction had nothing to do with what I see and everything to do with what I feel.  And my indignation passed as swiftly as my rush to judgment.  Now I feel grief and shame.  Profound grief and pain over what I feel I’ve lost. Shame in my arrogance that anyone whom I judge as having lost less than I has not lost at all.  Arrogance that I discount another’s ordeal as trivial.  From this yardstick, am I then simply a novice, an amateur, to the totally blind?  I, who rail against the divisiveness of separating by differences rather than connecting through similarities.  Am I that much a hypocrite?

I need balance.  I need clarity.  I’m taking my quandary to a friend whose kindness and honesty I find enlightening.  I’ll let you know what she makes of this. Meanwhile, what do you say?

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10 Responses to That Ain’t Blind

  1. Heather Morrison says:

    Let me weigh in from the point of view of someone whose sight is more like hers than yours, Jeff. The losses are all huge, at the time.
    You have lost more. Much more. Isn’t it OK to have moments when you are unable to empathize with someone because of the weight of all your losses? It’s not as if you got up there and yelled at her about it! As I deal with various chronic diseases as well as RP, I’m learning that I have to have compassion for myself as well as others.
    Best,
    Heather

  2. Jenny T says:

    Hi Jeff, I am so happy to be able to read and respond to your words again. Now that university classes have started again, I actually have more free time. I find this somewhat funny and ironic, because, some how, 6 classes, one internship and my job actually take up less time than the two internships and job I undertook over the summer. I think it is human nature to be angry at what others perceive of as hardships, because it is so hard to look beyond our own experiences. One of the things that I am teaching the children I am working with is how to have empathy and how to have compassion for people outside of themselves. Yet, this is also a lesson that I, as a mental health professional in training, still struggle with on a daily basis, as I envy those individuals with even the smallest amounts of vision, because I have none. What I do know is that it helps to talk about feelings and emotions, and as much as you give your readers with your writing, I hope you also have found something like comfort in sharing them. A book that I have started reading is something that you and other readers might want to check out. It is available on bookshare and is titled Until Tuesday. It is about a former soldier and the service dog who helps him everyday with his battles with a traumatic brain injury and PTSD which he received through his recent service to his country. One chapter into the book, and I absolutely think that it is one of the best books that I have ever read. As it is well into the 90s today, Blazer and I are taking the children I work with for cold treats. Our local creamery even has frozen treats for pets, so Blazer will be treated as well. I am interested also in hearing your friend’s take on your reaction; however, if it is too personal, as you already share so much of yourself, do not share it. I have also learned, from the children I work with, that some things simply are never meant to be shared beyond a few people. Thank you for sharing your experiences with all of us. Your words help me more than I can ever say. Hears hoping for some cooler weather and less insects, as Blazer and I prefer cooler temperatures. Jenny and her amazing guidedog Blazer

  3. I also have RP. I lost what little reading vision I had between high school graduation & my freshman year of college — no Braille, no white cane even though I’d been legally blind all of my life. When I could “read,” it was at a great price in time, effort and physical sickness.

    I’ve had similar experiences to this one, and I felt alienated as well as judgmental. I had the sense that the person who wasn’t quite as blind as I was really still talking to the sighted world. I admire your candidness. Perhaps, she just hasn’t had much experience really getting to know other blind people. She is no doubt dealing with some profound field loss, and it seems unlikely that her central vision will go unaffected for long.

    Frankly, though, I have lost my tolerance for those who bemoan the loss of sight and talk about Braille, canes and guide dogs as though they were tragedies. The tragedy of sight loss is when we ourselves view it as a sentence to an inferior or substandard life. It is a loss and, as such, must be acknowledged and grieved, but from a position of strength, especially when speaking to groups.

  4. Todd Keating says:

    Interesting post Jeff. I sometimes think about the cliche of ” there is always someone worse off”. Well there’s always someone better off as well, usually. It doesn’t mean your own circumstances are insignificant. It’s a matter of perspective. Some people have strength at adjusting to the audience when communicating. My sight is better off than many today but know that tomorrow I’ll be one bit worse. I guess we’re all just at different stages…..

  5. Stella says:

    We can’t always control human emotions but the skill comes in learning to keep them in tow and also in perspective. None of us are perfect or we’d all be buddhas! As a “high partial”, I know what it’s like to be in denial of blindness most of my life and its those milestones, i.e. losing a job, not being able to drive anymore or some ability to read albeit through the distortion of magnification, that makes me see the reality. I do hang on to my last threads of vision and have much respect for anyone with less sight than me who can navigate life with courage and grace.

    • Jeff Flodin says:

      Thank you, all of you, for your kindness and honesty. How exciting it is to have this dialogue. I am sitting still with these emotions and the perspective you and my friend have offered. I will write my thoughts and feelings as they coalesce. Again, I thank all of you for sharing.
      And yes, the book “Until Tuesday” is a profound story, a worthy read. In addition to Bookshare, it is available as an NLS digital book.

  6. Jane Thomas says:

    Hi Jeff, I read this a few days ago and had to think about if I should respond and whether my response would make any sense. I have been going to the Guild–Second Sense–for several years. B I can see. And somethimes I feel like a fraud. I have Macular Degeneration and my vision is getting worse. but I can see. I have two white canes I am embarrassed to use; I am taking Braille; I enlarge the font on my iPad, but the font is getting spottier and harder to read. But I can read it. I don’t drive because I am dangerous behind the wheel of a car, but I still have a driver’s license. Because DMV thinksI can see. I have distortion; I have gray spots; I don’t see my friend’s faces clearly so they know they need to tell me who they are when we meet. But…I can see. I am doing all I can to be proactive, to not feel sorry for myself. I am going to buy an iPone with Seri so it will talk to me, because I need a magnifier to use my current phone. So what am I saying? I absolutely marvel at you those of you with guide dogs and canes and who really can’t see. You seem to have no limits on what you are able to do. I sense such bravery as you face and meet the challenges you deal with every day. You are so positive, you joke, you laugh. You inspire me every time I am with any of you. So the woman who told you her story and who motivated you to write this blog, maybe that’s what she feels when she is with you. You are our role models, andI I thank you for your strength and courage. There’s no way I can feel sorry for ME with YOU around to help me see that the joys of life are still there, regardless of the degree of darkness through which you see it.

    • Jeff Flodin says:

      This is beautiful, Jane. As you see strength and courage in we who are blind, we who are blind must not forget those same qualities among those who are just beginning this journey. Everyone’s experience is true and valid.

  7. guidepooch says:

    I’m a little late to the party here but have been reflecting on this for a few days. I totally understand this reaction and I think there are a lot of complicated things going on here. I have been hearing impaired since birth and I get irritated with late-deafened adults who a) try to relate to me when they get hearing aids for the first time, or b) resist getting hearing aids even when they clearly need them because they are too ashamed/proud, etc. Hearing loss is embedded in my psyche and has always been second nature to me. But then I started going blind. And it took me a huge amount of emotional energy to work up the courage to start using a white cane after I became legally blind. One of the reasons being that I felt like a fraud and I was ashamed. But I clearly needed the cane. And eventually, it did become clear to me that it helped. I can still read regular print and I now have a guide dog. I spend a lot of time explaining to people that blindness is not black and white – that it is a misconception that you have to be totally blind/not be able to read print to be worthy of using the cane or a guide dog. I get why people who have been totally blind from birth have trouble relating to me and my struggles to adjust to blindness – it’s sort of like my hearing loss. Now when I talk to someone who doesn’t want to get a cane, I have to stop myself from thinking “just get on with it and start using it”. I think part of what you might be feeling is veteran fatigue. Once you become a veteran of being in a certain state, it is difficult to find the patience because you’re thinking “wait until you go total – then we’ll talk”. I don’t have any earth-shattering answers, other than to say I think what you were feeling towards that woman is completely human.

  8. Pingback: That Ain’t Blind, The Sequel | Jalapeños in the Oatmeal

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