Mike is having out-patient surgery this Wednesday. We’ll walk to the hospital together, I’ll stay during the surgery, and once the staff says Mike’s fine to go I’ll walk outside with him and we’ll catch a cab home. That was the plan, at least. But then Mike’s “Patient Information after Surgery” sheet came in the mail, and it said:
- You Must have a responsible party available to take you home.
So now, in addition to the anxiety any average person might have before going through surgery, Mike gets to add another worry. What happens if we arrive on Wednesday and the hospital staff decides his blind wife is not a “responsible party”? Might they delay the surgery?
Here’s an understatement for you: having a partner who is blind complicates your life. Some of the ways are obvious. Others, not so much. For a good glimpse into what it’s really like to love and live with someone who is blind, link to an essay by Lauren Bishop-Weidner in the latest Two Hawks Quarterly. Lauren’s piece is called On His Blindness; the “his” refers to Lauren’s husband Tom.
When we married at the ripe old age of 21, we both knew he had a slowly progressive eye disease, but the potential that he could become blind, the ramifications of living day-to-day with a disability, these were merely Star Trek holograms, no more real than old age or parenthood.
By 1993, Tom Weidner was a full professor and well-established scholar, father of three lively children. And he was blind.
That's Lauren Bishop-Weidner and Tom Weidner.
Being married to someone who is blind puts you in a funny spot. Everyone marvels at what the blind person can do independently. You stay behind the scene, unnoticed. Rather than applaud your efforts, outsiders assume you are a saint. Or a fool. And if you complain about your lot, even just a little bit, you feel guilty. You’re not the one who is blind, after all. Just look at your spouse. What if that were you?
Lauren’s essay is painfully honest. That’s why I like it so much. She describes the tedium of her husband’s nighttime routine (setting the talking alarm clock, painstakingly matching his clothing for the next morning) with such precise detail that you know she’s been watching him carefully — and lovingly — for a long, long time. She describes how Tom uses humor to make outsiders feel more comfortable around him, and admits she likes how her husband still pictures her in her early 30s. But she refuses to dismiss blindness as a minor inconvenience. She doesn’t write about how utterly normal and ordinary her husband is, how their life is just like everyone else’s, how his guide dog gets him everywhere he wants to go, no problem.
She and Tom manage just fine, just like Mike and I do. But sometimes, it’s complicated. Mike doesn’t want any surprises on the day of his surgery, so he called ahead and told them our circumstances. The woman who answered wanted to know what I would do if my guide dog needed to go outside. Mike told her I’d be able to handle that. She put him on hold. When she returned, she asked if they could call his wife when the surgery was over, she could come in a cab, wait downstairs, they’d bring him down to meet her there. He told them his wife wants to stay in the waiting room during surgery, you know, if something goes wrong she’d like to be there. The woman put her hand over the receiver and called out, “He says the blind woman wants to be there!” She took her hand from the receiver then and told Mike it should be okay, as long as he understood he might not be feeling that great after the operation.
If a friend picked up Mike, they’d take a cab–it’s easier than asking someone to drive downtown. The friend would simply meet Mike in the waiting room and ride the elevator with him. That’s what I’ll do. But my being there creates a spectacle and changes all that. I’ve been blind nearly 25 years now. I’m as used to it as I ever will be. Still, being blind creeps into my life — and Mike’s — in ways we never expect. Here in my blog posts, and in the other writing I do, I try to give you an idea of what it’s like to be blind. Lauren does a superb job of telling what it’s like to be on the other side. I hope you’ll read Lauren Bishop-Weidner’s piece in its entirety. It provides…well…a different “look” at blindness.
Hey, I linked to that story — really, really interesting. Lots of things I’d never thought of before. Thanks for telling us about it, gives me a new perspective.
Forgot to add that you are quoted in that other essay — of course you must know that but it was a surprise to see your name there. Do you know that Tom guy?
Hmm, I suppose maybe I should have added a disclaimer in this post. I have never met Tom or Lauren, but Lauren and I have exchanged a number of email messages. A few years ago Lauren heard me on All Things Considered and emailed to ask if she could quote me from that commentary. I said yes, and voila! That NPR essay is quoted in “On His Blindness.”
Hoping all goes well for you and Mike on Wednesday. I am linking over to Lauren’s piece now.
First, I was sorry to hear about Mike’s surgery. I wish him well with his surgery and will say a prayer for
him. and As far as I’m concerned, you (and Hanni) could handle the situation as well as any wife with sight!
Regardless of the ignoramuses at the hospital, I’m certain Mike knows how lucky he is to
be married to you.Please
post or let me know how he is when the surgery is over…..once you meet him afterwards!!!!!????
Anger was my first reaction to this story. Like surgery of any kind isn’t stressful enough. But let’s also add ignorant medical staff! Too much!
A friend once said to me that I could use my visual impairment as an opportunity to educate people. A noble concept. But that idea assumes people WANT to change their preconceptions. (I continue to have hope.)
Well, I spent a day shaking off all my feelings of frustration and outrage at the situation. Now I am calm enough to write…
You are both in my prayers. Pack your patience and your sense of humor in your back pack and know that all will be well.
Thanks, Beth — loved the connect between Mike’s outpatient surgery and my essay. Must admit, we haven’t ever experienced anything like that, but the whole “The blind woman wants to know…” scene makes me cringe. It could happen–does happen–too often. So much ignorance! Funny thought: If you
were truly NOT a “responsible party” because of, say, drug abuse or alcohol abuse or anything else not immediately obvious, the hospital wouldn’t even question releasing Mike to your care.
Weird world, this.
Thanks again.
One more thing. I can’t help noticing the attitude that Mike must be a drooling idiot who needs to be gently reminded that he “might not be feeling that great” after surgery. Good heavens!
Great essay. Thanks for the link.
I hope Mike recovers quickly
I’ve got that essay up to read tomorrow.
Finally added you to my feed so I remember to read your blog more often. 🙂
This reminds me of going with my boyfriend and his friend to the hospital while my boyfriend got a colonoscopy. I think I had been blind a year. The staff were great and the nurse spoke directly to me when I went back into recovery. She gave me all the after care information. As we were leaving, another nurse asked him if he had a ride home and without pausing I said, “yes, I’m driving him home”. I had my cane. It gave everyone a laugh.
I look forward to reading that essay, because I don’t often think about what it’s like for him.
Hope the surgery goes fine and maybe those nurses will learn a thing or two about your ability to take care of your husband.
Oh, wow. People can be so frustrating! Anyway, thanks for the link to the great essay, and good luck to Mike with his surgery.
Like blindness contributes is the greatest issue to you not being a “responsible party.” Clearly they don’t know you Beth! All kidding aside. . . thanks for the insight into your world.
THANK YOU Patricia!! I was waiting for (and hoping that) *someone* would point out how clueless the medical staff is if they think my blindness is the top thing they should worry about.
Anyone who knows me –and you do, Patricia –is fully aware of how self-centered and petulant I can be. Not always a “responsible” party when it comes to taking care of others. Trust me, I was this way long before I lost my sight, you can ask my older sisters, they’ll tell you I’ve always taken my role as the baby of the family very seriously.
If anything, my blindness has made me become more responsible (and careful) than I was when I could see. Mike will be in good hands Wednesday.
My daughter Kyle would have loved this essay, Beth. She often had to hold her tongue when sighted people assumed she had lost her intelligence when she lost her sight at 22. She did her best to educate them and she did it with humor. When a nosy woman in a ladies room tried to direct her to the handicapped stall, she said, “I prefer this one — they have Braille toilet paper.”
Mary,
You know, as a rule I don’t tell blind jokes, they are overused, trite and too predictable. But Kyle’s joke about Braille toilet paper, well, it works. On so many levels! I may borrow this one, it’s a blind joke I have never, ever heard before. Thanks for sharing
Oh, can relate … thank you for sharing. I recall Steve’s last surgery feeling overwhelm just as she states. This is a very validating article – one to share, thank you!
I want to let you know that I’m thinking of you and have Mike and you in my prayers for his surgery today. I read this blog about you wanting to be at
the hospital with him. I hope this is resolved and you can easily be there.
I trust that his surgery and recovery all goes well.
My wife lost her sight ten years ago an I could relate to the essay you linked to here. Do you think spouses of any disabled person experience the same feelings? I would guess so. Perhaps the difference is the onset of the disability. Many people
have congenital disabilities, so when they meet their future spouses, all the cards are already on the table. I think it is probably more difficult when spouses developed their disabilities during the marriage.
You are so right. And it isn’t just spouses – my mother’s blindness started to develop when i was in my early 20s and I have lived through many of the same things mentioned in this post and these comments.
Hi there Beth,
This is Ahnee’s daughter writing. I have so much enjoyed hearing about your classes over the years and reading Mom’s efforts too.
Just really enjoyed reading this…it is so nice to hear your explanation and perspective. I walk into a room, I can see, yet my disability is not visable to others ( I have bipolar disorder that has me feel estranged from the inside if that makes sense ) …thank you so much for sharing in your writing. I think your sharing is a loving and brave gift to others…truely.
I really hope to have the opportuntiy to share more in writing myself…your writing and teaching are so encouraging.
Best wishes too for more future writing projects…I really enjoy your blog! Take care 🙂 Jess
Jess, thank you so much for writing. As you know very well, it can be *more* difficult to have an invisible disability than one like mine, that is so obvious. I do hope you continue to use writing as a way to express yourself and help you feel less “estranged from the inside” — a very good phrase to describe bipolar.
[…] might remember my friend Lauren Bishop-Weidner from a post I wrote two years ago. That post linked to a thoughtful and honest essay Lauren wrote for Two Hawks Quarterly about what […]
Beth–thank you so much for this post, and for linking to Lauren’s essay. I’ve followed your blog for some time now, and I am in a long-term relationship with a fantastic man who is completely blind. Other than your post and Lauren’s, I’ve not found much helpful information or support available about relationships between non-sighted and sighted people (although I may just not know where to look). I sincerely appreciate your honesty and Lauren’s honesty about the complications, the griefs, and the joy!
Thanks for reading my post and especially for linking to Lauren’s extremely thoughtful and well-written essay. And you know, you’re right: I remember when writing this post that I couldn’t find much material on the subject. Anyone out there looking for a dissertation subject….?
There isn’t a lot of organized support and even less information for this sort of relationship. I looked very hard when I was researching for the essay. I contacted government and state offices, talked to people, talked to scholars, read zillions of books and articles, wrote careful letters to organizations whose job it is to help blind people thrive. I spent untold hours attempting to locate information about blind adults with sighted partners. I was looking for things like marriage success/failure, children, household and financial responsibilities and divisions of chores, career and income, that sort of thing. I found very little. But I did discover Beth’s memoir, which was one of my best sources. It is also a lively, interesting read, beautifully written. You can find links to buy “Long Time, No See” on Beth’s website (http://bethfinke.com/books.html). I wish you all the best. Living with blindness is a grind, a challenge, and often a flat-out pain in the butt. The challenges are many and varied and often completely unexpected. But if you take the word “blindness” out of that sentence above and insert “a spouse,” it is still true–so while it is important to go in with your eyes open (tee hee, ain’t I the clever one), it is also important to embrace this man, who, like most of us, has both strengths and weaknesses. Good luck to you both. And thank you for the compliments. One final thing: Don’t take me or anyone too seriously on this issue. Follow your heart. It will guide you.
Lovely post – I too have looked and looked for info about living with someone blind/VI, as opposed to being blind/VI, with virtually no success. In my case I live with my mum who was diagnosed with RP more than 20 years ago. Due in part to the awful way that telling her she had RP was handled – long story, noone’s real fault just some bad coincidences – she refused point blank from the start to go to any sort of blind society or similar. So my father and I had to learn how to cope ourselves, with no help for us either. We did everything from figuring out what sort of kettle she could still use to creating an entire audiobook library system she can use (no kidding, I am especially proud of that one though it has cost me thousands of dollars). Since he passed away 4 years ago it’s been all on me. She won’t use a cane or even a walking stick, in fact anything at all that might signal to other people that she is blind. When people do realise she has a sight problem they often then speak to me as if she isn’t standing right next to me, so though it is frustrating that she won’t get help from others I feel very angry on her behalf so often. We also had a similar situation in hospital when she went for overnight surgery – she was given one of those buzzers so she could call a nurse or raise/lower the bed, and the ‘buttons’ on teh buzzer were all those flat ones rather than raised, with no difference to touch, so she had no way of being able to use them. They also weren’t going to let me stay with her until she went into surgery but they also expected her to sign stuff as she went in even though I now sign everything for her as she can’t read what she’s signing. The hospital staff were individually very kind, but utterly clueless how to deal with someone with limited sight.
Such an excellent post of so much to relate to — THANK YOU!! I can so relate to this from Steve’s last surgery and plan to share with him so he can relate as well 🙂 … wishing Mike well with his upcoming surgery.
Greetings
Thanks for visiting my blog http://pppministries.wordpress.com. I read this post and was deeply touched. Jesus opens the eyes of the blind and is the healer.
I pray God’s richest blessings, peace and angelic prosperity for you.
Sincerely
Mercedes
Thank you for your blog. I can relate to EVERY SINGLE thing you wrote! I have been married for 23 years to a blind man. He became blind eight years before we met. He supports our family on his income. We have been blessed with six very active, wonderful children, ranging in age from 17 down to 3. I deal with every issue you brought up in your essay. It’s amazing how when you’re married to someone who’s blind, you can fill your life with children, friends, activities, but somehow still feel lonely. My life is so consumed with making things comfortable and easy to navigate for him. I feel like I’ve lost myself. However, I am still happy and committed but it is hard. I would love to meet your family sometime. I always feel like there’s not a single person in this world that can understand how my life is, but it sounds like you understand completely. Thanks again, Heather
Wow. That comment “my life is so consumed with making things comfortable and easy to navigate for him, I feel like I’ve lost myself”. That socked me in the gut because it is so absolutely what I feel too.
I read it right in the middle of downloading and burning yet another set of audiobooks for my mom, to be followed by writing her Christmas cards. My life revolves around work (financial necessity) and doing so much for her that I realised the other day I now find social situations very difficult – when I actually get a chance to be part of them, which is rare – because I do nothing for myself these days that isn’t a chore or the 1-2 hours of tv of my own on weekends. So I literally have nothing else to talk about, as anyone who has not lived in a similar situation just doesn’t get it, no matter how kind many of them are. There’s no concept of how it affects your finances, health, even your ability to keep up to date with events and what’s going on in general. Even arranging to catch up with a friend for coffee has to be booked way ahead. It was quite frightening to realise I had reached this level.
I’d do it all again if I had to, and it is a good feeling to know that I really do mean that, it’s not just something I say to make myself feel better. But it would have been wonderful to know where to get advice on what it is like to live with someone blind (and even more so, someone going blind).
I have made one decision – I am going to plan ahead properly. I’ve let my own life float way too long, with the one exception thank heavens that I do own a small condo so I will have somewhere to live when my mom no longer needs my help, or she needs more than I can give her. It may be next year and it may be in 10 years, but I am going to have a plan on hold but in place and make sure my finances are as in order as I possibly can get them.
Noone is going to look out for me; noone really understands that it sometimes feels as though I too have an invisible disability – I hope you reading that understand what I mean – as the original poster said you are in the background and feel guilty if you are the least bit sorry for yourself as you are not the one one is blind.
p.s. in the middle of typing this I had to stop to check out that the leaves she picked in the garden to put into a casserole just now really are herbs and not weeds! But it will be a yummy casserole 🙂
This is Lauren, from the essay Beth linked in her original post. How very gratifying to hear that my descriptions may be helping others in similar situations to mine! If I may add one thing, pertinent to both Madeleine and Heather, I’d say that taking time for myself is a mandatory component of continuing to do the things I need to do to keep our family going. I don’t get a lot of alone-time, but I cherish it. And I never feel guilty. Well, maybe it’s more like I try really hard to remind myself that I don’t need to feel guilty. Because a successful partnership depends on both partners being whole, and without some me-time, I fall to pieces! My two cents:-)
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