Blind and Visually Impaired Community
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Vent: my Mom just can't accept it (self.Blind)
submitted by OldManOnFire
I flew back home for Christmas and spent a few days with my parents. Dad understands. He asks a lot of questions to understand what my remaining vision is like, but he asks to understand, not to try to fix me.
Mom doesn't get it. She's convinced herself Vitamin A will solve all my problems because her own eye doctor - someone who hasn't even met me - says Vitamin A shows promise in some studies.
It doesn't matter how many times I tell her it's genetic, and that Vitamin A doesn't make midgets taller or brown eyed people's eyes turn blue. No vitamin is going to rearrange the order of the proteins in my DNA and make me a kangaroo or anything else than what my genetic alphabet says I am.
I've worked in academia. I know when a paper says Vitamin A MIGHT be beneficial and reports SUGGEST promise or it POSSIBLY helps but MORE STUDY IS NEEDED - they're saying their study didn't prove a damn thing but they want more funding to try again because otherwise they'd be standing in the unemployment office. If it worked, if there was a double blind clinical trial that showed a positive correlation and a peer reviewed journal verified it then every ophthalmologist on the planet would prescribe it. But it hasn't worked. It doesn't work. And it pisses me off that Mom keeps getting her hopes up in an effort to protect her child.
Blindness is like cancer in children - it tugs at the heart strings so funding is easy to get. But when clinical trial after clinical trial shows vitamins do nothing the clinicians keep trying anyway because the funding is easy to obtain. Their jobs are secure because nobody has the balls to cut off funding for blindness research. It seems too cold hearted. But once it goes too far and little old ladies like Mom get their hopes up because her own doctor saw a headline in a journal that mentioned another trial to determine a link between Vitamin A and the progression of retinitus pigmentosa then the pendulum has swung too far the other way. Now Mom has her hopes up and nothing I can say makes her understand this isn't going to help. She's too emotionally invested to be reasoned out of anything, and even if she wasn't wishing with her whole heart that I could see, I don't think she has the science background to understand DNA proteins can't be rewritten by a bottle of vitamins she can get at Walmart.
I don't want her to get her heart broken. It's sad to see. If some snake oil salesman offered her a cure she'd fall for it based on a mother's love, not on the science behind it.
Obviously I'm in favor of medical research. The track record speaks for itself. Our lifespan has nearly doubled since we started. But when clinicians run the same trial over and over and over and don't find anything, but the funding is easy to get so they keep trying some more, they're not helping blind people, they're just protecting their jobs.
And nothing I can say will get Mom to see that.
Anybody got some advice for me? Another perspective? Anyone else tired of the people who love us falling for snake oil cures? Let me know. Help a brother out please, my heart is breaking watching her go through this.
Mom doesn't get it. She's convinced herself Vitamin A will solve all my problems because her own eye doctor - someone who hasn't even met me - says Vitamin A shows promise in some studies.
It doesn't matter how many times I tell her it's genetic, and that Vitamin A doesn't make midgets taller or brown eyed people's eyes turn blue. No vitamin is going to rearrange the order of the proteins in my DNA and make me a kangaroo or anything else than what my genetic alphabet says I am.
I've worked in academia. I know when a paper says Vitamin A MIGHT be beneficial and reports SUGGEST promise or it POSSIBLY helps but MORE STUDY IS NEEDED - they're saying their study didn't prove a damn thing but they want more funding to try again because otherwise they'd be standing in the unemployment office. If it worked, if there was a double blind clinical trial that showed a positive correlation and a peer reviewed journal verified it then every ophthalmologist on the planet would prescribe it. But it hasn't worked. It doesn't work. And it pisses me off that Mom keeps getting her hopes up in an effort to protect her child.
Blindness is like cancer in children - it tugs at the heart strings so funding is easy to get. But when clinical trial after clinical trial shows vitamins do nothing the clinicians keep trying anyway because the funding is easy to obtain. Their jobs are secure because nobody has the balls to cut off funding for blindness research. It seems too cold hearted. But once it goes too far and little old ladies like Mom get their hopes up because her own doctor saw a headline in a journal that mentioned another trial to determine a link between Vitamin A and the progression of retinitus pigmentosa then the pendulum has swung too far the other way. Now Mom has her hopes up and nothing I can say makes her understand this isn't going to help. She's too emotionally invested to be reasoned out of anything, and even if she wasn't wishing with her whole heart that I could see, I don't think she has the science background to understand DNA proteins can't be rewritten by a bottle of vitamins she can get at Walmart.
I don't want her to get her heart broken. It's sad to see. If some snake oil salesman offered her a cure she'd fall for it based on a mother's love, not on the science behind it.
Obviously I'm in favor of medical research. The track record speaks for itself. Our lifespan has nearly doubled since we started. But when clinicians run the same trial over and over and over and don't find anything, but the funding is easy to get so they keep trying some more, they're not helping blind people, they're just protecting their jobs.
And nothing I can say will get Mom to see that.
Anybody got some advice for me? Another perspective? Anyone else tired of the people who love us falling for snake oil cures? Let me know. Help a brother out please, my heart is breaking watching her go through this.
FaerilyRowanwind 10 points 1y ago
As an aside. There is a visual impairment that can lead to blindness that is specifically progressed by vit A. As in Vit A makes it all worse.
That said. I work with children with RP who lose their vision over their childhoods. If there were a cure trust me when I say no one would be hiding it. Sometimes we have to have a heart to heart with parents and tell them that no. There is nothing at this time. Because there isn’t. But also. The retinal death you’ve already had is permanent. You can’t regain that. It’s gone. Those fields are gone. You can’t regrow them. Just as you can’t regrow an arm or a leg. She can keep swimming in the denial or you guys can go to therapy together ( and I highly recommend this) because your mom is currently going through the stages of grief. And you probably are to and so if your father. You are all just in different stages. And it would be good to work on this all together. She has hopes and dreams for you. (All parents do) and when a big change like this happens that can significantly alter those hopes and dreams there is a part of us that goes with that. That we need to let go of and let change. And she doesn’t want to. She’s holding on tightly. She will take any recommendation that could possibly make you better even if it could also hurt you. Because so many people are trained to see blindness as so disabling. It’s not. Go to a counselor. Take her with you when you go talk services with the commission for the blind. They have great resources for families. She might find that outside of driving all the hopes and dreams are able to stay the same. Hugs friend
That said. I work with children with RP who lose their vision over their childhoods. If there were a cure trust me when I say no one would be hiding it. Sometimes we have to have a heart to heart with parents and tell them that no. There is nothing at this time. Because there isn’t. But also. The retinal death you’ve already had is permanent. You can’t regain that. It’s gone. Those fields are gone. You can’t regrow them. Just as you can’t regrow an arm or a leg. She can keep swimming in the denial or you guys can go to therapy together ( and I highly recommend this) because your mom is currently going through the stages of grief. And you probably are to and so if your father. You are all just in different stages. And it would be good to work on this all together. She has hopes and dreams for you. (All parents do) and when a big change like this happens that can significantly alter those hopes and dreams there is a part of us that goes with that. That we need to let go of and let change. And she doesn’t want to. She’s holding on tightly. She will take any recommendation that could possibly make you better even if it could also hurt you. Because so many people are trained to see blindness as so disabling. It’s not. Go to a counselor. Take her with you when you go talk services with the commission for the blind. They have great resources for families. She might find that outside of driving all the hopes and dreams are able to stay the same. Hugs friend
AllHarlowsEve 6 points 1y ago
I've got a neurological condition that caused my blindness that also gets worse with vitamin A.
OldManOnFire [OP] 4 points 1y ago
I'm in my mid 50s and live 2,000 miles away from her. Joint therapy is not an option. I'm in a good place. I've worked through the loss and I'm good. Check the post history on my user profile to see for yourself.
Dad's good, too. He was a geologist. He understands science and even though he's 80 he hasn't lost a chess game in years. His mind is still sharp. He knows I'm taking this well so he's taking it well.
Mom isn't there. As you pointed out she's still in the bargaining stage, she stopped her education at high school and I don't think she'll ever get there because she doesn't want to. My younger brother took his own life 20 years ago and Mom is somehow transferring those feelings onto me. She acts like saving my vision will somehow atone for not saving her other son 20 years ago. She could use some therapy but she won't accept it.
My background is in engineering and mathematics, not medical sciences. But my wife is an RN and she can translate medical terminology into words my little caveman brain can understand. Between my experience of RP first hand and her understanding the literature on RP we know what we're facing - an rare, unnamed, possibly new mutation that causes permanent, irreversible death of the cells in my retina, that presented very late in life and is progressing at a much faster rate than the RP usually found in teenagers. Mom wouldn't understand most of those words even if she wasn't trying to correct her younger son's death by saving my vision.
That's not what's pissing me off, though. I thought it was but I realize now I'm more pissed on the clinicians who are getting her hopes up by retrying the same failed clinical trials over and over. I'm pissed at her doctor for reading a headline instead of the whole paper and giving false hope disguised as medical advice based on it. I'm pissed Mom can't see I'm happy, I'm loved, and that a human being without eyesight is still a human being.
But I like the idea of a friendly hug. Thanks for reading.
Dad's good, too. He was a geologist. He understands science and even though he's 80 he hasn't lost a chess game in years. His mind is still sharp. He knows I'm taking this well so he's taking it well.
Mom isn't there. As you pointed out she's still in the bargaining stage, she stopped her education at high school and I don't think she'll ever get there because she doesn't want to. My younger brother took his own life 20 years ago and Mom is somehow transferring those feelings onto me. She acts like saving my vision will somehow atone for not saving her other son 20 years ago. She could use some therapy but she won't accept it.
My background is in engineering and mathematics, not medical sciences. But my wife is an RN and she can translate medical terminology into words my little caveman brain can understand. Between my experience of RP first hand and her understanding the literature on RP we know what we're facing - an rare, unnamed, possibly new mutation that causes permanent, irreversible death of the cells in my retina, that presented very late in life and is progressing at a much faster rate than the RP usually found in teenagers. Mom wouldn't understand most of those words even if she wasn't trying to correct her younger son's death by saving my vision.
That's not what's pissing me off, though. I thought it was but I realize now I'm more pissed on the clinicians who are getting her hopes up by retrying the same failed clinical trials over and over. I'm pissed at her doctor for reading a headline instead of the whole paper and giving false hope disguised as medical advice based on it. I'm pissed Mom can't see I'm happy, I'm loved, and that a human being without eyesight is still a human being.
But I like the idea of a friendly hug. Thanks for reading.
FaerilyRowanwind 7 points 1y ago
Ah. I didn’t see how old you were. I thought you were closer to my age (30s) I agree with you. I would also be angry at her doctors. In this case it may be better to give a white lie as was recommended in another comment.
Though. There is a chance. Rare chance. That you may have a long period of stabilization. It happens in both kids and adults. It progresses really fast and then you get down to about ten degrees and then it stays there for awhile. No two people are alike. Kids are usually born with it. They know when they are really little. It’s an of condition. Are you intending or already looking into training?
Though. There is a chance. Rare chance. That you may have a long period of stabilization. It happens in both kids and adults. It progresses really fast and then you get down to about ten degrees and then it stays there for awhile. No two people are alike. Kids are usually born with it. They know when they are really little. It’s an of condition. Are you intending or already looking into training?
OldManOnFire [OP] 3 points 1y ago
I was diagnosed and declared legally blind in July, about 18 months after the first symptoms began. I've had O&M teach me how to use a white cane. I have TTS software installed on my laptop. We're out of debt and own property and we don't really need a second paycheck so I'm not looking at more job training just yet, but I'm keeping the options open.
And my field of vision has stabilized. I'm around 12 degrees horizontally and maybe 7 or 8 degrees vertically. But everything is getting darker, even in the center. The radius is stable but the dimness is still progressing.
And my field of vision has stabilized. I'm around 12 degrees horizontally and maybe 7 or 8 degrees vertically. But everything is getting darker, even in the center. The radius is stable but the dimness is still progressing.
FaerilyRowanwind 4 points 1y ago
Ah. That’s rough friend. I hope things go well. Sounds like you have things pretty much figured out. And you’ve got some great resources going.
bannable0ffense 3 points 1y ago
I have Stargardts, which gets worse with vitamin A. Fuck you Stargardts.
FaerilyRowanwind 1 points 1y ago
That’s it. Fit it having such a cool name I always forget the name
KnittingTeaDrinker 7 points 1y ago
My own mom used to make me eat tons of carrots when I was a kid because she thought it would help my vision. 😂
Just say “ok mom, I will take the vitamins”.
Just say “ok mom, I will take the vitamins”.
OldManOnFire [OP] 8 points 1y ago
I really will take the vitamins. A promise is a promise. But that's not the point.
The vitamins won't help. I will lose what vision I still have in another year or so, and Mom is going to drive herself crazy going down the anti-science rabbit hole to find the cure the doctors are hiding from her. She's vulnerable, old, uneducated, and desperate, meaning she could give tens of thousands of dollars to anti-vax scammers to buy healing crystals and essential oils.
I'm pissed that this whole situation exists, that medical misinformation has become a part of American life, that clinical trials on disproven claims are still getting funding. and that grown adults in our country are so scientifically illiterate.
Fuck this. They're taking advantage of my own mother and I'm venting about it.
btw, funny story about the carrot myth. During WWII the English had developed radar for their airplanes but didn't want the Nazis to know, so they circulated the myth that eating carrots was the reason their pilots could see German planes from so far away. It was a lie designed to keep a military technology secret, but the propaganda was so effective it's still widely believed in the English speaking world.
The vitamins won't help. I will lose what vision I still have in another year or so, and Mom is going to drive herself crazy going down the anti-science rabbit hole to find the cure the doctors are hiding from her. She's vulnerable, old, uneducated, and desperate, meaning she could give tens of thousands of dollars to anti-vax scammers to buy healing crystals and essential oils.
I'm pissed that this whole situation exists, that medical misinformation has become a part of American life, that clinical trials on disproven claims are still getting funding. and that grown adults in our country are so scientifically illiterate.
Fuck this. They're taking advantage of my own mother and I'm venting about it.
btw, funny story about the carrot myth. During WWII the English had developed radar for their airplanes but didn't want the Nazis to know, so they circulated the myth that eating carrots was the reason their pilots could see German planes from so far away. It was a lie designed to keep a military technology secret, but the propaganda was so effective it's still widely believed in the English speaking world.
Superfreq2 1 points 1y ago
The funniest thing about that is that the entire carrots help with eyesight myth started because the British needed a way to explain why their fighter pilots in WWII were able to shoot down enemy German planes so well even at night. (it was new radar tech but obviously they didn't want the Germans to know that and look into copying it...)
https://www.smithsonianmag.com/arts-culture/a-wwii-propaganda-campaign-popularized-the-myth-that-carrots-help-you-see-in-the-dark-28812484/
https://www.smithsonianmag.com/arts-culture/a-wwii-propaganda-campaign-popularized-the-myth-that-carrots-help-you-see-in-the-dark-28812484/
Kyrie-belier 6 points 1y ago
May i ask what genetic disorder u have that affects your vision? Thank u
OldManOnFire [OP] 6 points 1y ago
It's retinitus pigmentosa, but the genetic testing of 322 known genes that contribute to RP was inconclusive. Whatever form I have is rare enough that my case doesn't match any other in the genetic database. I'm the only one in the family who has it so it's possible the mutation began with me.
EffectiveYak0 3 points 1y ago
It's extremely frustrating for everyone when doctors can't give you answers other than shrugging and saying tough luck.
I think it's easy to forget that those around us are also going through a series of emotions when someone they care about loses vision. I know that I didn't completely appreciate my wife's reaction, but I try really hard to understand. With that being said, people do need to eventually come to terms with what vision loss means for the person experiencing it. I'd probably just try to have an open and frank conversation with everyone about the prognosis and what it means. That't probably about the best we can do.
I think it's easy to forget that those around us are also going through a series of emotions when someone they care about loses vision. I know that I didn't completely appreciate my wife's reaction, but I try really hard to understand. With that being said, people do need to eventually come to terms with what vision loss means for the person experiencing it. I'd probably just try to have an open and frank conversation with everyone about the prognosis and what it means. That't probably about the best we can do.
OldManOnFire [OP] 1 points 1y ago
You make a good point - this isn't about me, this is about Mom. She's taking this way worse than I am and I'm being selfish by being angry. The right way to support her would be to offer sympathy for what she's going through instead of getting frustrated over what she's going through.
I needed to be reminded of that. Thank you.
I needed to be reminded of that. Thank you.
mossconfig 3 points 1y ago
There are whole swarms of YouTube 'doctors' who recommend this vitamin or that herb to solve any problem you have, sounds like your mom has gotten rabbit holed. Is this information coming from a real doctor or from Facebook research?
OldManOnFire [OP] 3 points 1y ago
A real eye doctor, but I don't know if she's an optometrist or an ophthalmologist. She's been Mom's eye doctor for years.
I don't think Mom has been rabbit holed yet but she's at the edge looking down, being pulled in by her heart strings. I fear what comes next.
I don't think Mom has been rabbit holed yet but she's at the edge looking down, being pulled in by her heart strings. I fear what comes next.
MacaroniGlutenFree 2 points 1y ago
Very thoughtful comments all through this thread. I am the father of a daughter with a genetic disease that includes a retinal disease in the RP family. I am learning everything I can about my daughter’s condition.
At her age, your mother’s capacity to understand and the way she deals emotionally with tough situations is unlikely to change much. This is complex stuff. A short comment from a doctor like « take vitamin A » is not the whole picture!
All the supplements MAY slow down the disease. But with genetics nobody is the same. With a heavy dose of realism, I’m going all in with the supplements for my daughter. Vitamin A, lutein, NAC, Omega 3 and blueberries! With proper dosage and medical follow up. I will never know if this actually slowed down anything, but her ophthalmologist is a Canadian lead in the field and my wife’s doctor actually has RP and she takes the supplements. If It can slow her disease a bit while science progresses, she may enjoy her sight longer. But I understand very well that blueberries won’t fix her bad genes!
At her age, your mother’s capacity to understand and the way she deals emotionally with tough situations is unlikely to change much. This is complex stuff. A short comment from a doctor like « take vitamin A » is not the whole picture!
All the supplements MAY slow down the disease. But with genetics nobody is the same. With a heavy dose of realism, I’m going all in with the supplements for my daughter. Vitamin A, lutein, NAC, Omega 3 and blueberries! With proper dosage and medical follow up. I will never know if this actually slowed down anything, but her ophthalmologist is a Canadian lead in the field and my wife’s doctor actually has RP and she takes the supplements. If It can slow her disease a bit while science progresses, she may enjoy her sight longer. But I understand very well that blueberries won’t fix her bad genes!
OldManOnFire [OP] 1 points 1y ago
Maybe blueberries won't fix bad genes but they taste great in a strawberry/blueberry/banana smoothie!
Seriously, though, saying supplements MAY help just means "We still haven't found anything but we don't want to let this cash cow go so we'll say MAY instead of DIDN'T DO ANYTHING to fund another round of trials." I know - I used the same technique to ask NASA and my university to fund some physics experiments.
How old is your daughter? How's she doing? And since you're in a similar position as my mom, what advice do you have for me?
Seriously, though, saying supplements MAY help just means "We still haven't found anything but we don't want to let this cash cow go so we'll say MAY instead of DIDN'T DO ANYTHING to fund another round of trials." I know - I used the same technique to ask NASA and my university to fund some physics experiments.
How old is your daughter? How's she doing? And since you're in a similar position as my mom, what advice do you have for me?
MacaroniGlutenFree 1 points 1y ago
Don’t get me wrong, I’m not here promoting supplements. They are just a paragraph from the 3-page handout from her ophthalmologist with research that show promise in gene therapy, stem cells , retinal implants and even Rosenfarb protocol acupuncture. His handout also includes blind services and low vision specialist services in the area. He is a coordinator with Foundation Fighting Blindness research projects.
He also made sure I was aware of what her condition meant. And I am. He told me : “10 years ago, I would have told you she’s going blind and there’s nothing we can do. Now there is the beginning of a glimmer of hope”.
Your mother? Hard for me to compare. I am 41 years old and my daughter is 7. We are in solution mode to make sure we guarantee some financial future for her. We try to give her the best education while her vision is still good. All she understands now is that she doesn’t see very well in the dark.
Finding a Facebook group with families living with her condition helped us tremendously to not feel so alone. Connecting with people who understand blindness and accept it.
If your mother had more examples of blind conditions maybe she’d see your grass is greener than most? You got to your 50s. Some kids become legally blind in their teenage years with RP. Some with LHON lose vision very quickly in their 20s. There is always someone who has it worse.
He also made sure I was aware of what her condition meant. And I am. He told me : “10 years ago, I would have told you she’s going blind and there’s nothing we can do. Now there is the beginning of a glimmer of hope”.
Your mother? Hard for me to compare. I am 41 years old and my daughter is 7. We are in solution mode to make sure we guarantee some financial future for her. We try to give her the best education while her vision is still good. All she understands now is that she doesn’t see very well in the dark.
Finding a Facebook group with families living with her condition helped us tremendously to not feel so alone. Connecting with people who understand blindness and accept it.
If your mother had more examples of blind conditions maybe she’d see your grass is greener than most? You got to your 50s. Some kids become legally blind in their teenage years with RP. Some with LHON lose vision very quickly in their 20s. There is always someone who has it worse.
mmouton61 2 points 1y ago
I'm sure a lot of us can understand what you're going through. I do not believe Vitamin A palmitate is the answer either. The risk to one's liver and the fact that it only *may* slow the progression of the disease, does not make it worth it to me. Personally, I feel physicians really just want to "heal" us - this is why they became doctors in the first place. It is hard for mos of them to accept they can't fix us. My mom is totally blind from RP so she hasn't been one to try to fix me. She understands what I'm going through and what my future will hold. I have met so many people that try to give me suggestions on what to take, what to do, etc to help me. They all have my best interest at heart but they do not understand. I feel they ought to provide that funding for other studies that show more promise. Best wishes to you.
[deleted] 1 points 1y ago
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