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• People being dismissive of your RP experience(s)?
• Posted: 2008-03-26 13:10:13 By Luis M
• 
  Hi You All,
  
  I hope everyone is doing extremely well, taking good care of themselves (and their loved ones), etc..
  
  Just wondering...has anyone on this board ever encountered family members or/and others who do not have RP/Ushers be so dismissive of your feelings associated with the emotional/physical challenges of having this disease?
  
  I did not want to mention this earlier (via posts) but for years (11 years), I harbored resentment towards my parents and siblings (an older sister and brother). None of them have RP and due to that, I feel that they lack the empathy to understand my struggles dealing with this including going back to graduate school for change of careers, giving up driving/independence, trying to find a position that does not entail/driving, making certain that my husband and I lead responsible, productive lives.
  
  I suppose my resentment has a lot to do with the way how my family doesn't acknowledge this, place no significance on Ushers. And furthermore, because it is not directly affecting them, it makes it easier for them to play the 'out of sight, out of mind' game. Resentment appears to be growing as my vision is deteriorating, encouraged (okay, forced) to make adaptive changes.
  
  I want to mention that I absolutely applaud and RESPECT, in complete awe of parents/siblings who show visible and vocal support for those affected with this disorder, not enabling them to walk through this harrowing, unpredicable and very scary journey alone. Knowing that there is such unconditional, loving support can take a person a million miles ahead...that person is extremely/immensely lucky.
  
  I have to confess that because my parents, more especially my mother (my dad is a little more open about this after 11 years- so I can see how I can grow a little closer to him somewhere down the line)- it will be extremely difficult for me to be close to them, will always be that rift. If my parents need help, then absolutely- I would help them as much possible...but in reality, there would be that boundary, emotional distance coming from me. It's funny- my mom once remarked to me a few years ago that I am extremely cold to her, rarely call her, etc...and just recently via her reminder, my behavior towards her has hardly changed- a classic, superficial arms-length type of mother-daughter relationship. To be frank, what did she expect from me after telling me to get over my Ushers, belittling my anxieties/worry about the consequences of having Ushers? She couldn't deal with it- so talking about RP was/is a taboo with her.
  
  I guess I am trying to find a balance in this whole situation...really struggling/trying very hard to overlook these flaws in my family, etc..And trust me, I know I have my flaws too (don't we all)...but when one denies my Ushers/experiences, that person is essentially denying me. It feels like a slap in the face.
  
  So there, I confessed.....

• Re: People being dismissive of your RP experience(s)?
• Posted: 2008-03-26 20:09:35 By Darran Z
• Hey Nicole,
  
  Been there, done that. This is very typical among family members from what I have observed. I'm no different and still this day, my parents don't fully understand. I'll give you a recent example that was a slap in the face so to speak.
  
  I have somewhat stopped attending Church services, primarily because I don't gain any benefit from it. My wife can't always interpret the whole thing due to the baby. No one else knows ASL to communicate with me. So one day I told my Mom and she freaked out, "You know better than that! Get going!" Yeah, whatever, mother. So it happens.
  
  I have found that my wife is more understanding than of my parents or siblings. Partly because she lives iwth me and sees what I face daily. My children see it too and understand.
  
  If you wanted advice then here's mine: You are married, focus upon your lives (hubby and you) and what is important between the two of you. You have gone and left your parents house, therefore, not required to abide their wishes or doing. So you set you boundries so you know where those limits are. If you stay within those limits, then you shouldn't have any problems. Occationally, this type of stuff will come up but try not to take it too personally. Their understanding is limited and therefore, not experiencing what we are. At least acknowledge that much. But by setting up boundries doesn't mean you love them any less, it just says that you love them enough to create this so that there will be no problems in the future.
  
  You might want to contact HKNC and see if you can go there for training and learn how to deal with these types of things. From what I have understood, and I'm wanting to go myself, quite a few of their clients are Usher people. They have Social Workers that can address this type of thing. There are very few qualified out there to do so. It's just an idea. Even though I grew up with Usher, knowing from when I was 6 years old, and now approaching middle-age, it doesn't make things easier. In the past, I haven't had to face the challenges I face today. And that will always take an emotional drain on you. Taking one step and one day at a time is the way to go. Because once you have adjusted to a certain level, and the RP changes, then you repeat the cycle again, adapt and when you get comfortable, it then changes. So goes the cycle.
  
  Darran

• Re: Re: People being dismissive of your RP experience(s)?
• Posted: 2008-03-27 12:40:53 By Luis M
• 
  Hi Darran,
  
  Thank you for sharing your experience. I am sorry to learn of your mother's comment in regards to ASL challenges and church services. I do wonder if you had an obvious disability/illness (for example, cancer), whether your mother would have refrained from saying anything that appears to be obnoxious.
  
  Has your mother ever participated in events sponsored by the Foundation (and the likes of it)? And also (somewhat changing the scope of the topic), can't your church provide ASL services from the state at no charge? I am not certain how it works in your state in regards to obtaining ASL services.
  
  I guess I was/am trying to get to the root of how family members can (unintentionally) lack sensitivity. Is it due to the nature of our disease, it being so invisible and all? And because it is invisible, it makes it easier for non-affected people to either forget or/and deny? I guess I am trying to 'get it'.
  
  I am convinced that it requires constant education about the disease in order to promote growth for everyone associated with RP. Maybe if I (gently) pushed my parents into attending FFB events, then just possibly, there is hope... Perhaps things would have been different if I (and my husband) lived closer to my family (they're on the West Coast and we're in the Midwest), probably making it easier for us to grab them (hee hee), taking them to local affiliate meetings...hmm, now that is a thought!
  
  In all, I really do not want the emotional rift between myself and family members, all because of denial. Also, I wish they were more proactive in learning more about this.
  
  As of now, enough is enough...it is my mission to address and get rid of the elephant in the room.....

• Re: Re: Re: People being dismissive of your RP experience(s)?
• Posted: 2008-03-27 12:54:15 By Darran Z
• Hi Nicole,
  
  Well, there is a Deaf Congregation that is about 30 minute drive from here. But part of the problem is my wife will have to drive us there. She's in school at the moment and I understand her situation. We'd be going back once she is done so this is only a temporary thing. But yes, my mom's comments somewhat surprised me.
  
  I don't think my family has ever attended an FFB event growing up. But I think part of the problem is as you stated, being away from them as some of these changes take place. My In-laws live close by and se see them often and they see those changes, but are unsure how to support or help me. So they wait until we ask for something. My parents live 2 states away and I see them maybe 2 or 3 times a year but they don't see those changes. They only see how I was growing up which was near normal. I could hear then and attended a hearing congregation and did well. But I'm older, profoundly deaf and the RP progressing so my situation currently is much much worse than my childhood. That I think is the biggest difference.
  
  Plus parents sometimes have their own "denial" to deal with as well. I can see it with my parents. Perhaps guilt is a better term.
  
  I have asked my siblings, if I went totaly blind and needed to communicate in ASL only would they learn? They said YES but I have used ASL as my primary mode of communication since I graduated from HS and still, they don't know ASL. My older neices all know ASL, enough to communicate with me and always talk with me. My sister was an interpreter but she still fails to sign with me. They are pusing the CI issue with me which I'm reluctant to do so at this time.
  
  If you want to chat private about this, you are free to email me. my email is darranzenger(at)yahoo.com if you want.
  
  Darran

• Re: Re: Re: People being dismissive of your RP experience(s)?
• Posted: 2008-03-27 13:00:08 By Darran Z
• Whoops! Wrong person. Sorry Luis, thought you were Nicole when I was typing. :)
  
  Darran

• Re: Re: Re: Re: People being dismissive of your RP experience(s)?
• Posted: 2008-03-27 18:07:00 By Marisa P
• Luis,
  
  You are definitely not alone here. In my family, the topic never comes up and I bring it up the subject is quickly changed. Yes, they all say to let them know if they can help, but they are busy with their own lives and find it difficult to help when you need it.
  
  I recently traveled for a wedding and I was telling one of my sister's about the difficulty I am experiencing getting around in airports and her comment was "You look good...I don't see that you have changed any in the ast 5 years!" As if Usher is going to change my physical appearance.
  
  I have also found myself defending my brother who also has Usher. Some of our relatives think that he somehow brought it on himself. When I explain that it is genetic, nobody wants to claim the gene.
  
  Needless to say, I have given up on trying to make anyone understand. As with Darran, my husband is the only who understands, but he doesn't have much of a choice. Sometimes I will bump into something and he will ask if I saw it. My response is always, why would I bump into it if I saw it. :)
  
  It is easy to be resentful, but that really doesn't help much. Go on living your life and maybe some day they'll open their eyes. Unfortunately, unless they go through it...they'll probably not understand.
  
  Cuidate,
  Marisa

• Re: Re: Re: Re: People being dismissive of your RP experience(s)?
• Posted: 2008-03-27 23:12:55 By Nicole M
• 
  Darren,
  
  You're right...it is me, Nicole.
  
  This website is so bizarre...I was trying to send "free information" to someone...typed that person's name, address, etc...then later on, I just saw that it was listed under Luis M.. (the person who I was sending info. to).
  
  I hope to resolve this shortly...

• Re: Re: Re: Re: Re: People being dismissive of your RP experience(s)?
• Posted: 2008-03-28 15:44:26 By Darran Z
• Oh good. I'm not losing it. I thought I might be sent to the looney bin!
  
  Darran

• Re: Re: Re: Re: Re: Re: People being dismissive of your RP experience(s)?
• Posted: 2008-03-30 23:22:06 By Marisa P
• Hey,
  
  Now I am worried that I am the one going looney?:) Are you saying that this thread was started by Nicole and not Luis?
  
  Marisa

• Re: Re: Re: Re: Re: Re: Re: People being dismissive of your RP experience(s)?
• Posted: 2008-03-31 19:19:12 By Nicole M
• Read the previous post sent to Darran, explaining what happened.

• Re: Re: Re: Re: Re: Re: People being dismissive of your RP experience(s)?
• Posted: 2008-03-31 19:17:59 By Nicole M
• 
  I can assure you that you are not going loony...still sane.
  
  

• Re: Re: Re: Re: Re: Re: People being dismissive of your RP experience(s)?
• Posted: 2008-03-31 19:23:30 By Nicole M
• 
  Yes, you're pretty sane...looks to me that the issue has been resolved.
  
  Also, I will send you future e-mails (the address you sent me) that I feel is not appropriate to be posted, for all to see.

• Re: Re: Re: Re: Re: Re: Re: People being dismissive of your RP experience(s)?
• Posted: 2008-03-31 22:04:23 By Darran Z
• Okay sounds good. Just be sure you spell the name with an "an" instead of "en" in my first name. Many people get that mixed up and often get undeliverable mail or to the wrong person. :)
  
  Darran

• Re: Re: Re: Re: Re: Re: Re: People being dismissive of your RP experience(s)?
• Posted: 2008-04-02 15:09:55 By Darran Z
• I don't know when you plan to send that email, but I haven't seen anything yet (just an FYI).
  
  Darran

• Re: Re: Re: Re: Re: Re: Re: Re: People being dismissive of your RP experience(s)?
• Posted: 2008-04-02 16:52:58 By Nicole M
• 
  Hi Darran,
  
  I apologize for the misunderstanding. I meant that I would send you e-mails to your private account if I feel that they are not relevant for the whole board to view. Right now, I am caught up in professional and personal matters....simply not enough hours in a day, sigh.
  
  Take care for now,
  
  Nicole

• Re: Re: Re: Re: Re: Re: Re: Re: Re: People being dismissive of your RP experience(s)?
• Posted: 2008-05-01 10:31:12 By Darran Z
• Hi Nicole,
  
  Just chiming back in to this thread. Hope all is well with you.
  
  Darran

• Re: Re: Re: Re: Re: Re: Re: Re: Re: Re: People being dismissive of your RP experience(s)?
• Posted: 2008-05-05 17:59:12 By Nicole M
• 
  Darran,
  
  Thank you for thinking of me (for some reason, this response as well as others did not hit my e-mail account- quite strange). Anyway...
  
  I have been reading the other posts on this topic...just noticed that you recently learned of a dip/drop in your vision. I am so sorry to learn of this. What is your current field of vision, etc.. ?

• Re: Re: Re: Re: Re: Re: Re: Re: Re: Re: Re: People being dismissive of your RP experience(s)?
• Posted: 2008-05-05 18:04:44 By Darran Z
• Hi Nicole,
  
  The "drop" is primarily central vision. Apparently my cones are affected. I currently see 20/400 in the left (slight drop) and 20/200 (same) in the right. The Visual field hasn't changed muchin the past few years, at 10 degrees. Opthalmic evaluations apparently look the same as last time except for this slight drop in the chart reading. That's aboutall. I was hoping it was cataracts that were causing the VA to stink but apparently, they are trace to 1+ and too mild to be affecting the VA.
  
  Darran

• Re: People being dismissive of your RP experience(s)?
• Posted: 2008-04-08 14:07:05 By Irene K
• I am on the other side of this, because my son has Ushers and so I'm the family member who doesn't get it. He hates to talk about it and I have learned not to bring it up. I learned very quickly after the diagnosis not to be all weepy and horrified about it, because that is so unhelpful and negative. Sometimes I casually ask him how he's getting around or what he needs, but he is still in early stages. My advice to all of you is to state what you need, simply and directly. We can't read your minds, so you need to tell us. If people don't listen or they respond foolishly, that's nothing new. I have seen many intelligent, educated people respond poorly to my son's needs, no matter how much they were told. Some people are going to get it and some won't. You learn to focus on the ones that do, and ignore the rest. But when it's your mother or someone close to you, it hurts. My son says I'm a very supportive mom, and that's good to hear, but I know I can also be too emotional and worrisome. Perhaps your family members respond poorly because that is their way of avoiding the pain. It's very painful to see your child suffering. But of course ignoring or pretending it's not happening is worse. So I suggest that you tell people what's happening and say what you need. If they respond poorly, tell them it hurts you when they respond poorly. You may not be able to change them, but you can choose your own actions. If people choose to be so unhelpful that they unhelp themselves right out of your life, that is their loss as well as yours. Hang in there, people. It's so easy for me to say all this, sitting here with perfect hearing and perfect vision. I don't know what it's like to be you. But I keep trying to get it, and I will always keep trying.

• Re: Re: People being dismissive of your RP experience(s)?
• Posted: 2008-04-08 15:27:11 By Darran Z
• Irene,
  
  In all my years of knowing various families, there appears to be two groups of families. The one like yours, wher eyou son doens't talk about it and the parent(s) want to learn more to help them and then there are families who are like Nicole's who just downplay any significance Usher has on an individual's life. Having prefaced my post with this, I applaud you for reaching out to others to try to understand your son better and what may or may not work.
  
  I think my parents did the same, until I moved out of the house and on my own, and now with my own family (wife and kids) that they no longer can understand since they are not around me any longer on a daily basis. My wife has learned so much over the past years that she knows how to approach me and sometimes is stuck as well but with no one else to talk to. I can be like your son, and not want to talk about it, especially everytime I hear my RP takes a nosedive (like I learned last month).
  
  Darran

• Re: Re: Re: People being dismissive of your RP experience(s)?
• Posted: 2008-04-10 18:41:05 By Irene K
• Darran,
  
  I'm so sorry to hear about the nosedive. My grandfather lived to be 107, and he could feel the gradual decline over the years. He would always hope for the best and say that he hoped to hang onto what he had and that it shouldn't get any worse. I hope that you live to be 107 and that it doesn't get any worse.

• Re: Re: Re: Re: People being dismissive of your RP experience(s)?
• Posted: 2008-04-11 01:39:36 By Darran Z
• I might make it. I have ancestors who lived into their 90's. My great grandfater was one. My grandmother will be 88 and is quite healthy.
  
  That's normal for RP to "nosedive" at times and then stablize then "nosedive" and stabiize. It's not uncommon for that to happen. It's not always a slow gradual change.
  
  I was diagnosed with this at 6 years of age. I've lived with it all my life.
  
  Darran

• Re: Re: Re: Re: Re: People being dismissive of your RP experience(s)?
• Posted: 2008-04-17 15:32:35 By Marisa P
• Sorry to hear about the "nosedive," Darran. Maybe it was just a bad eye day. You are right, those who live around you seem to understand what it's like to live with Usher. Still, I find myself having to ask for help...It is difficult to say what we need help with because there are so many factors involved. For instance, there are times when I can't see the contrast (or lack of) on curbs but other times I don't have a problem. So, what happens is that it's those times that others think you can see fine when you'll have a mishap. So, our needs vary...
  

• Re: People being dismissive of your RP experience(s)?
• Posted: 2008-05-04 17:11:00 By Keith V
• My mom has been very supportive. Almost too supportive I think. I had to assert my independence. I love her to death, but I need make my own way in the world. My Dad was the opposite. I think he was intent on demonstrating how cruel the world is in my upbringing.
  
  In any case, I can empathize due to my experience with everyone else. I've had one law student recruiter refer to being legally blind as 'no big deal.' Others have also been equally dismissive. I just see it as arrogance born of ignorance.
  
  They fail to 'see' that being legally blind eliminates entire swaths of major life experiences. For example, I could never be a sniper, surgeon, soldier, race car driver, etc. I'd love to and would be able to do each if I was acting alone. But people do not do these things alone. That is, because I would place others at an unacceptably increased risk of harm, I cannot be a sniper, surgeon, soldier, race car driver, etc.
  
  Yet, I look 'normal' to others. I can make my way around without a cane. The only time I need a cane is when I am in an unfamiliar environment or around a lot of people. Then I have to have it. So, they wonder, why is he making a fuss? Some may even believe that I might be seeking 'special' legal status. This is a rather laughable concept by the way...
  
  In any case, although you can try to change people's perception via education, I would be cautious. Resentment can build on their part. Thus, it may actually backfire via ridicule or even greater stonewalling.
  
  Personally, I have decided to not discuss my condition until it affects the other person to the point that they are asking things like 'why can't you see the ball' or 'why can't you drive?' It is at this moment that they seem to be more receptive to an explanation: 'I can't drive a car because I would probably run over your kid' or 'I can't see the ball because it is small.' Then they ask for an explanation and I say 'because I am legally blind.' Then they can extrapolate and comprehend the condition because the condition is NOW affecting THEM.
  
  So, my advice is to just let people be ignorant until they choose to enlighten themselves. Afterall, it is their loss; they lose access to a very big part of your life and the richness of experience that the condition brings. Besides, you only have a few hours in a day. You might as well choose to spend them with more receptive and understanding individuals.

• Posted: 2008-08-26 02:33:17 By Jenn S
• I am one of the people who have recently been diagnosed with RP. My dad has it and a few cousins have it. The problem I'm running into is denial. The cousins that have it, do not admit it. My mom is still in denial by saying that my vision will be better than my dad's. When I try to tell her that it progresses different people even in the same family, she gets upset. My husband is very frustrated in that he can't do anything to help me with this as far as "getting better"

• Posted: 2009-02-23 14:10:51 By Andrew B
• My question would be, what exactly do you want them to do?