Category: the Rant Board
Hi, people. I just have to get this rant off my chest, as several recent situations have caused me to think a lot about it.
I'm talking about the medical professions truly lousy philosophy of blindness. It's absolutely unbelievable. I understand it is their job to strive to save vision in people who are losing it, or have the potential to lose it. It is their goal to heal people. To them, it is probably viewed as failure on their part if they're trying to save someone's vision, and that person goes totally blind anyway. I get this...but only up to a certain degree. Where it really ticks me off is when doctors are willing to sacrifice other areas of a patients health, or quality of life, to save a truly miniscule amount of vision.
Let's go back in time a bit for illustration. This happened to me as a baby, though I was too young to remember it. Countless times I've been told the story of my diagnosis with cancer, and the hell my parents went through as they had to make tough choices and watch me endure chemo and radiation. But, about those tough choices. There were tumors in both my eyes: two tumors in one, only one in the other. The doctors wanted to remove only the eye with two, leave the other, and hoped to kill the cancer in that remaining eye. They wanted to do this in order to save what vision they could, even though it would only be very limited tunnel vision. They gave my parents glasses, to demonstrate what kind of vision I would have, which is how I know what it would have been. My parents might have even been persuaded to do this, if my pediatrician hadn't had the common sense, and the ability to see that cancer was worse than blindness, and convinced them that sparing my life was more important than sparing a limited amount of vision. I later was put through many painful reconstructive surgeries for the sake of my looking normal, but that's a whole different topic. Because of my pediatrician, and my parents willingness to see her logic, I was at least alive to endure them. And as I know now from watching other people, that bit of tunnel vision which might have been spared at my expense would have been far more trouble than living my life totally blind.
But not all children have a smart pediatrician to come to their rescue. Years later, when I was22, my ocularist, (the man who makes my prosthetic eyes), told me about a child who was also fighting retinoblastoma. Doctors had left her eyes in, and were putting her through very intense chemo and radiation. The radiation was so much that they were running the risk of permanent brain damage, but still the parents and doctors felt the risk was worth it to try and save her vision, no matter that the amount would be small. I cried my head off the entire way home. I knew that child could have been me. My heart broke for the unknown girl whose parents and doctors were jeopardizing her health and her quality of life because they feared blindness so very much. I had been considering the idea of tubal ligation for several years, to prevent me from having my own children. That day sealed the deal. Not because I feared blindness, but because I feared cancer, and fighting against a medical profession that would put vision ahead of my child's life. Four months later, the procedure was done, and in spite of my family's fears that I would regret it, to say it's given me peace is an understatement. For a number of years, I've heard that the general public fears blindness even over cancer. I've heard many blind and sighted people alike scoff at this statistic, but if the above stories don't prove it's truth, what does? They are the two I can personally point at, but I know such incidents are not isolated.
About that same time, one of my best friends was experiencing a fight of her own against the medical profession's willingness to sacrifice quality of life. She was blinded by glaucoma. Damage had been done to the cornea of her right eye, and she was living with intense pain every day: pain that, on some days, was practically incapacitating. that eye had always been the weaker of the two anyway, and at that point, the limited vision in it was unusable, given that nearly every time she blinked it would cause her to cry. She wanted that eye removed. It was of no use to her. But she had to actually fight to get her doctor to do the surgery to remove it. Now, she is experiencing similar trouble with her left eye. The vision in it is very slowly becoming less usable, and her pain is increasing. It's by no means to the point her other one got to..yet. But I have a feeling it will get there: it seems to eventually with most glaucoma patients I've heard of. If/when that occurs, I'm pretty sure she'll once again have to fight for her own quality of life.
The thing that really caused me to write this was a couple days ago. I know of a woman who is also having to have her eyes removed, I believe also due to glaucoma. The vision in both has become unusable, and she too is in pain. Yet her doctor refuses to remove both eyes simultaneously, even though that is what she wants him to do. He has told her he will remove only one now, and they will, "wait and see," what happens with the other. What the hell does he expect to happen? Improvement, when it has deteriorated this far? He'd rather put her through two painful surgeries instead of one, in a vain hope of saving unusable vision, and in spite of what his patient desires. The friend of mine who personally knows her has advised her to seek a second opinion: to tell her current doctor that if he won't listen to her, then he will lose her business, and her insurance company's money to someone who will. I agree with that advice, and I hope she at least tries. However, I think her search for a new doctor would be futile. Her chances of finding someone who will do as she wishes seem very, very low.
Can someone please tell me what is up with this? I guess I know what is: fear. The belief that when one goes totally blind, life is over. Life is miserable. Independence is out of reach. Make no mistake, I'm not against doctors trying to save vision, when it is possible, when it is what the patient desires, when it could help improve their quality of life, not jeopardize it. I'm definitely not advocating that everyone with partial vision go totally blind. But when doctors are unwilling to listen to a patient's own wishes, when they are willing to risk death or damage over blindness, that is unacceptable to me. It's even worse when the patient is a child who cannot voice their own wishes, and doctors persuade the parents that these risks are worth it. *Screams*.
i have to agree with you on these points, guess i've been kind of lucky. My doctors tried to save my vision at first as they believed it could be done, but they realized that it was beyond their abilities. yeah i did have one eye at a time removed but that was to save my life as the cancer i had had already taken over one of my eyes. I don't like the views people have on blindness myself, which is why if i see people starting to act like it's the end of the world that i react strongly to it. My gf luckily understands that it's just something that's part of me and i fight through it
Sad. Yes I agree with you. I really don't get the general public's attitude toward blindness. Granted I think it has improved tremendously, but there are still so many misconceptions and so much fear out there...
Even in people like my own parents, who have generally had a positive outlook for their 4 blind kids, they still say they can hardly stand to think about us being blind, and shed tears several times a week over it, and are still hoping for some sort of miracle that will cause us to see, even though the 4 of us are very happy and couldn't really care less that we're blind. lol.
My mom had a horrible case of shingles a couple years ago. I mean it was really really bad and the outlook was not good. Chances were she could have been in severe pain for the next 5 years, if not forever. I mean she had several severe attacks an hour. She was in so much pain that we were afraid to have her be left alone, for fear she might try to overdose on her medication or something. Yet even in the midst of that she still said she would rather live with that than being blind! I just don't get it!
I often say I would much rather be blind and have the happy childhood I did than to have endured the abuse and stuff that other people have. I guess people are just much more dependent on their vision than we realize. Anyway, a bit off topic from your original post but I like ranting about it anyway. lol. I completely agree that doctors should come to their senses and realize that life is more important than vision.
Kim
It's sad what doctors will and won't do on a number of issues, and not just blindness.
A synical person might think that doctors like patients tha need doctors visits and medications. While they are in pain, they keep needing pills, and the drug companies keep making money.
A few yers ago I would've said that was crazy talk of conspiracy theorists, now I actually believe it.
In my experience of doctors though, you need to be your own advocate. I have never had a doctor go aginst my wishes, I do Google research on reasons for my visit and al test results, ask questions, consult WebMD and then go back with very definite ideas of what I want, and it's never been a problem.
I could've ad an RB child, but we've gotten lucky twice.
Going through RB is bad for kids, probably a lot worse for parents, but we made the choice that we're willing to go through it, but I wouldnot be afraid of making the decission to rob my child of his/her sight if that felt like the right thing to do for me, and was, in m mind, the only way to save his/her life or avoid lengthy, may be perminant pains and drug treatments.
I've actually had people tell me that they'd kill themselves if it was a choice between that and living as a blind person.
I definitely agree that you really have to self-advicate to get what you want, whether it be for a medical treatment or something else. However, I, too, don't get how anyone could take cancer, pain, or any debilitating condition over blindness. I get that so many people are afraid of living in the dark permanently, but I guess it's one of those situations where you never know what you would do until you live in that situation, and these people aren't willing to see it that way.
Or to even conceive of te idea tat those of us who have never known any other way could be, if not happy then at least reconciled to that way of life and willing to learn to make it work.
Stuff like this makes me sick. In the case of the woman who was in severe pain because of her glaucoma, I can't imagine why a doctor wouldn't take her wish to have her eyes removed seriously. Obviously this asshole has never experienced any kind of debilitating pain himself or he would see that no matter how hard the adjustment period to a loss of sight is, it's not nearly as bad as being unable to work or maintain any good quality of life while living in terrible pain. Being on medication for it is just as bad as suffering through it, because you're so tripped out that you're not living. Taking that kind of stuff on a long-term basis isn't good anyway, it fosters dependency and turns otherwise healthy and resilient people into drug addicts. And dying from cancer at the cost of losing your vision is a high price to pay too. You won't be seeing much of anything once you're underground, excluding the spiritual debate, of course.
I wonder, is it the blindness in and of itself that people are afraid of, or is it the general upheaval and having to adjust to a major change in life. Granted, I've been blind all my life but I'm sure if you have had eyesight than you lose it, it's hard and there's an adjustment period. But see, this is it. Becoming blind will not kill you like cancer does and yet I've heard about any number of studies that prove people fear blindness just about as much as they do cancer or even AIDS. I think people are just hung up on this model of what normal is and think of it as some holy grail, some ultimate way to be.
It's probably both. You'd be surprised, or maybe not, how many people fear the blindness itself. THey get hung up on the blindness itself and don't even consider that adjustment is possible, much less that it may be easier than they believe.
I wonder if people assume you have to have certain strong character traits in order to cope with blindness or do anything as a blind person. I'm discovering that although we might educate sighted folk about what we can do, they might assume we just thought up all the skills and techniques on our own or that you just have to be incredibly driven, ambitious, inventive and strong-willed just to live day to day.
Bryan and Godzilla, I think you've both got points. People think of blindness in the framework of what they think they could handle. And since they don't think they could do it, how the heck can we? Worse, as in the above post, how could someone else, especially their child? Again, I understand that fear. We all see things through our own lenses, and sometimes those are lenses of fear. But when they get really distorted, like cancer over blindness, or constant pain over it...that's when I think priorities get messed up.
I admire what one family who had a child with retinoblastoma did. They sought out resources before they made their decision. They called my state Department for the Blind, and asked if the agency knew of anyone who had been through something similar they could talk to. Obviously the agency couldn't give out names or contact info due to confidentiality, so the family gave permission for their info to be given to anyone the agency thought would be useful. My rehab counselor contacted me, and asked if me and my parents would be willing to talk to this family. Apparently they talked to us, and two others. The parents were stil frightened, of course, but they said it helped them to see others who had lost their vision to RB still alive, and happy individuals.
That family had the luxury of a small bit of time, to seek out other information. Not everyone does. But I had to respect them for doing it.
I think that often we are actually guilty of doing exactly what we are accusing our sighted counterparts of, i.e. viewing the situation from our own perspective.
No-one here is going to argue that blindness is the worst thing that can happen to someone – it isn't. But we can argue that point because we are living with it and we know first-hand that being blind isn't a life-sentence. But if you've never lived with blindness you won't know that, and if you've lived all your life with sight the prospect of having to lose that sight must be terrifying. And for many, even a bit of sight is better than no sight at all.
If you look at it from a different perspective, could you be that blasay about having to have a limb amputated or becoming deaf, or paraplegic or even quadriplegic? Could you say "well, it's only not being able to walk/hear/talk,"? I'd like to think that if faced with a different disability I would take it in my stride and not allow life to get the betterof me, but can I be sure? If I thought I would never hear music again, never be able to talk to people again, never be able to play the keyboard again if I lost my hands, never be able to walk again, I don't think I could honestly say that it wouldn't affect me.
Being blind hasn't given me an awful life, but then I've been blind all my life so it's who I am. But if I could avoid it I wouldn't wish blindness on my friends/children/family, not because it's so awful, but because it's not wrong for them to not want to be blind and not want to lose their sight, even if sometimes it's only a little bit of sight.
I'm sure that being deaf/in a wheelchair wouldn't give me an awful life either, but I wouldn't want to find out.
hmm true, I might choose pain over deafness, I'm not sure... but that's because I'm so dependent on my hearing, you know? And I don't really know any deaf people well, so I don't know how they cope from day to day. But if I could see I suppose I would be more willing to lose my hearing... and I'd definitely choose being in a wheelchair over severe pain, or cancer.
But what I don't get is people like my parents, or good friends of mine, who see how I'm coping with life fine, but still can't imagine being blind themselves and would choose pain or anything else rather than that.
But see, just as you would choose pain over being deaf, on the contrary, deaf people would probably choose that over the pain. so in that respect, Claire has a very valid point. Maybe people who live in chronic pain every day would choose that over blindness because they're used to it. Who knows, really.
Also, keep in mind those who feer blindness feer the fact that they will never see theri kids or future kids faces, never have a job or function as a "normalperson." Heck some do not grasp how some of us use a touch screen bee it with IOS or Android.
that's retarted that people think that being blind is worse than having cancer or being in extreme pain. I suppose people are afraid of things they don't understand, and blindness is definately something that people don't understand.
Retarded or not it's the way people are unfortunately. And what makes even less sense is the belief they have that a blind person shouldn't have a sense of humor, much less about being blind. Because in their minds making jokes about blindness is a sign of low self-esteem or somesuch.
Well Alicia,I will never be able to say I fully comprehend, but I'm with you 100%.
I knew a guy who was both blind and dying of cancer. He'd actually lost his sight, but in a major way, that was the least of considerations: he had a rare kind of cancer which was causing tumors everywhere. I've often puzzled over this, even though I've not dedicated my life to working with people like it seems many on here have. I realize vision is a profound sense, but what my friend was going through, going from an average guy to nothinbg but skin and bones, riddled with pain, was plain and obvious: Loss of sight was far from his most major concern there.
If somebody can ever crack this, figure out what is the problem and why the intense and almost primitive fear here, perhaps then there will be some way to address it in the medical profession and elsewhere. All of my cock-eyed hypotheses have turned out useless over the years, at least when it comes to generating results.
I've often thought about that myself, what it would be like to have some other disability other than blindness. Not in addition to, but having been born deaf instead of blind, for example. I think people do adapt to their circumstances, and yes, it does take a certain amount of resilience and strength, but most people can find that if they have the support of friends, family and/or caring professionals.
Having left a center that teaches independent living skills several months ago, I was often blown away by the things people went through who had just lost their site. Some were older people with degenerative conditions. One young guy about my age was losing both his sight and hearing. I could never imagine what it was like, but I know how hard he was taking it. He dealt with severe depression and was using a lot of drugs while he was there. Honestly, it was a mess, and it lead to him being kicked out. But one thing I will say is that from observing these people, you can tell which ones are going to bounce back and which ones aren't. The guy I was just talking about, sadly, I don't know what will happen to him. He was pretty cool, and everyone was just watching him spiral downward, but he didn't want the help I and a couple of the other clients, and especially the staff, were trying to give him. It goes back to that old adage that you can't help anyone until they help themselves. However, I don't profess to know what he was going through, because I don't.
On the other hand, I saw two people, who are now good friends of mine and who are a bit older, come in and take the bull by the horns and learn everything they possibly could. If anything, because they were older, I thought they would take it harder. These people, however grudgingly at first, learned about technology and how it could help them, which they never thought they would have to do, but they had a good attitude about it. That's more than I can say about some people, such as my dad who thinks computers are destroying society. The longer you live, the more set in your ways you become. Apparently, either that's not always so, or some people are especially resilient. I have great faith in the both of them even though they're no doubt going through a lot of crap that I'll never understand, but they have both asked me questions about what it's like living day to day as a blind person, and I was happy to answer them.
Claire, I get what you're saying. It is a matter of perspective to a degree. I went to college with a girl who was paralyzed from the neck down. The injury occured when she was 17, trying to avoid a head-on collision with a drunk driver. In swerving to avoid him, she rolled her own car, and in landing upside down, it crushed her top few vertabrae.
As I got to know her, I admired her spirit. She was determined to do whatever she possibly could on her own, limited as it was. She knew she had to accept help from others for most things. In time, we started doing for each other what the other couldn't. She would help me read things, I would help her move things, bring them to her or put them away for her, etc. At one point, I helped feed her, which was an interesting experience. LOL.
We talked about our perspectives on each other's disabilities once. Neither of us gave the, "You're just so amazing," speech to each other. We'd both heard it before, and were equally tired of it. But we did have a good discussion. She simply couldn't imagine being blind, and admitted she'd rather be in the position she was. On the flipside, I couldn't imagine being in her position, a prisoner in my own paralyzed body. But as she pointed out, you either live with the hand life deals you, or you fold and take your own life, something she refused to do.
I don't know how I would react to something like paralysis, or the loss of my hearing in particular. I pray I never have to find out. All I can hope is that, should I ever have to deal with some other disability in addition to blindness, I would find the strength to cope with it, and get the most out of my life that I could.
I think with anything though it comes down to how well you can adjust. And in truth I think that as much as it is hard for a person to adjust to their own disability, equally it can be hard for the parent of that person to adjust, especially when you have a child who you expect to be perfect and it turns out that they have a disability or a disabling condition.
I guess often times, parents expectations of having a perfect child piss me off. That's why I was put through all the reconstructive surgeries as a child: because of my parents desire for me to look "normal." Countless other blind people I know never felt accepted by their parents, who were always putting them through painful procedures, or thinking of ways to gain that bit of vision back. Do parents not think about the emotional, mental, and physical consequences this has on their child? Never feeling like their family accepts them for who they are, and are always trying to fix them? Apparently not. In this sense, parents are often the most selfish creatures in these equasions, only thinking about their own short-term desires, not the longterm effects it will have on their child. This makes me about as angry as the stuff I wrote in my first post.
I agree with you entirely on that point. But the problem is that sometimes parents are damned if they do, damned if they don't. Because while one child might have been happy to live life as they were and have no issues with the way they look, another might grow up with resentment towards their parents for not putting them through the surgery at a younger age...
That's true. Me, I'm glad my parents didn't put me through the possible surgery one of my eye doctors suggested years ago. At the time I'd been getting these really severe headaches that always seemed to center themselves over my eyes. So w tought ithad to do with my eye condition. I'd get them about four times a week sometimes and, while they never actually lasted long it sure as hell seemed like it. Well the eye doctor suggested a surgery that could have had one of two possible outcomes. I would regain an amount of vision so small it would hardly be worth it, or I might lose one or both eyes. Neither I nor my parents was particularly keen on either of these outcomes, so the doctor gave me eyedrops to help with the pressure or whatever in my eyes since he suspected that was what was causing these episodes. Looking back my mom and I suspect that the actual cause was childhood migranes rather than anything to do with my eye condition. And the fact that I stopped having them altogether when I was about fifteen would seem to lend credibility to that. Needless to say though I'm glad I had a say in the surgery issue since I'm sure I would have resented my parents if they'd acted without consulting me.
I think it is a few things, most which you folks have stated... Putting yourself in another ones shoes may be alot harder then it sounds, i'm sure there image is not of them walking around with a cane and doing everything they were before they went blind, but an image of them running around in the dark like a chicken without a head. Another thing that may push people to choose cancer over blindness is the fact that they've seen people recover from cancer many times.... How often do you see someone fight blindness? Although I don't agree with risking your life over having some eye sight some peple feel more comfortable knowing that they can actually win a fight without having to accept defeat in one way or another.....