Blind and Visually Impaired Community
↑
15
↓
Feeling down- recently told I could not drive anymore (RP) (self.Blind)
submitted by ugly-olive
I (37M) have been having some vision issues in the past year or so, and was diagnosed with Retinitis Pigmentosa in January. Based on results of my recent field vision test, my ophthalmologist told me last week that I should not drive anymore. Of course, due to my condition, this means I will not be able to drive ever again.
Up until today, I’ve been dealing with the news surprisingly well. My family has been super supportive and my wife has been just awesome, driving me to do errands, groceries, the essentials. But today, I’ve been realizing all the little things I won’t get to do anymore. Things I love to do on my own, to get away and escape a bit: driving down to the river for my daily morning 5K runs, driving to treat myself at my fave coffee house, just going for a car ride to see new places while listening to music and podcasts...I know how silly this all sounds and I know I will eventually find other outings I’ll love that don’t require driving. But It’s just really tough to adjust right now, you know? I’m an introvert and those little moments alone are important to me. That’s where I get sparkles of joy, and it just feels so much like that’s being taken away from me.
Since RP is a progressive disease, what hurts is I know that this is really just the beginning of a series of life adjustments. Eventually, I won’t be able to fully take in the beauty of nature, sights, when we travel. We don’t have kids yet, but I will progressively be unable to see them as well as they grow, which is heartbreaking. And I’m afraid of being an inconvenience or a burden to my family one day. I know I’m compounding my anxieties here, but this no driving thing really hit me hard today, so I’ll be speaking to my therapist about this next week.
I guess I am sharing this to get some advice and help me get through this rough patch a bit. I know a lot of you have lived through these tough adjustments because of sight loss, so I am grateful for your guidance and support. Thank you!
Up until today, I’ve been dealing with the news surprisingly well. My family has been super supportive and my wife has been just awesome, driving me to do errands, groceries, the essentials. But today, I’ve been realizing all the little things I won’t get to do anymore. Things I love to do on my own, to get away and escape a bit: driving down to the river for my daily morning 5K runs, driving to treat myself at my fave coffee house, just going for a car ride to see new places while listening to music and podcasts...I know how silly this all sounds and I know I will eventually find other outings I’ll love that don’t require driving. But It’s just really tough to adjust right now, you know? I’m an introvert and those little moments alone are important to me. That’s where I get sparkles of joy, and it just feels so much like that’s being taken away from me.
Since RP is a progressive disease, what hurts is I know that this is really just the beginning of a series of life adjustments. Eventually, I won’t be able to fully take in the beauty of nature, sights, when we travel. We don’t have kids yet, but I will progressively be unable to see them as well as they grow, which is heartbreaking. And I’m afraid of being an inconvenience or a burden to my family one day. I know I’m compounding my anxieties here, but this no driving thing really hit me hard today, so I’ll be speaking to my therapist about this next week.
I guess I am sharing this to get some advice and help me get through this rough patch a bit. I know a lot of you have lived through these tough adjustments because of sight loss, so I am grateful for your guidance and support. Thank you!
mayfness 5 points 2y ago
Hey there! I (23F) have RP as well and I never learned to drive or at least I haven’t yet. Not for anything in particular pertaining to my vision or being told not to. But it has been because it has always given me anxiety to think of driving, I think it’s a combination of knowing what my vision will be like eventually and also a combination of bad road experiences. But I’m here to say you shouldn’t lose hope, there’s clinical trials with gene therapy and other research coming up every year.
While we might not be able to get back whatever damage there has been to our sight, as long as we make sure we can retain as much of it as possible is what matters. RP is a bit weird and complicated since it doesn’t affect all of us the same way. My mom was diagnosed with RP back in 2006 or so, her vision with time has getting worse BUT it’s been really slow. She lives in NYC, no need to drive and light changes are rough for her but she has retained crucial parts of her central vision and that hasn’t changed much in the last few years and it has helped her keep without many limitations.
I know it’s scary, I also worry about the future. I have no kids and sometimes I question if it’s the right thing for me given that I don’t want them to go through any of this… I have been lucky to have a partner that supports me through all the hoops that RP has brought into my life and I think that’s what we should focus on. I have been learning that I can only control what’s currently happening and it would be devastating to lose my sight and knowing I could’ve enjoyed the moments with my loved ones a lot more if I hadn’t worried about the future.
Sorry it’s a long response, I relate quiet a bit. It’s also awesome to have a community like this where we all help each other and cheer each other up because it’s hard to explain to those who don’t know what it’s like to go through these things.
While we might not be able to get back whatever damage there has been to our sight, as long as we make sure we can retain as much of it as possible is what matters. RP is a bit weird and complicated since it doesn’t affect all of us the same way. My mom was diagnosed with RP back in 2006 or so, her vision with time has getting worse BUT it’s been really slow. She lives in NYC, no need to drive and light changes are rough for her but she has retained crucial parts of her central vision and that hasn’t changed much in the last few years and it has helped her keep without many limitations.
I know it’s scary, I also worry about the future. I have no kids and sometimes I question if it’s the right thing for me given that I don’t want them to go through any of this… I have been lucky to have a partner that supports me through all the hoops that RP has brought into my life and I think that’s what we should focus on. I have been learning that I can only control what’s currently happening and it would be devastating to lose my sight and knowing I could’ve enjoyed the moments with my loved ones a lot more if I hadn’t worried about the future.
Sorry it’s a long response, I relate quiet a bit. It’s also awesome to have a community like this where we all help each other and cheer each other up because it’s hard to explain to those who don’t know what it’s like to go through these things.
ugly-olive [OP] 2 points 2y ago
This is immensely helpful. Just knowing that there are others like me who are going through the same thing is already helping. Thank you for this great advice. I have been really trying to not get caught up in the “what if”s of the future and focusing on the positives of my current reality. That’s sometimes hard since, like you say, RP is a weird condition and you don’t really know how fast and how severe the decline will be. And these moments of change, adjustment and grief make it harder. But I will take your advice as much as I can, and will probably keep checking in to this sub when I need some support (or to give advice and guidance of my own!)
Thx again. Really appreciate it.
Thx again. Really appreciate it.
mayfness 3 points 2y ago
I’m glad that helped a little! If you ever need to talk or something my dms are open and I hope your journey gets better!
ugly-olive [OP] 3 points 2y ago
Thank you! I might take you up on that offer, just for some more RP-related questions and about your experience with RP.
fainting-goat 4 points 2y ago
There are a few things to unpack here, and the grieving is a very significant one. Loss of mobility is difficult. From what you've described, driving yourself to activities that allow you to recharge as an introvert has been important. Likewise, not burdening those around you, and the feeling of being able to just go and vacate the premises at a moment's notice is big. I feel like, with modern car services you can likely still have the freedom to go and enjoy the activities (minus the driving, which is a loss, but not a total loss) with the same freedom of not having to rely on loved ones to do it.
ugly-olive [OP] 3 points 2y ago
Thx for this. Yeah, I tend to compound my problems so there is a lot to unpack! Lol sorry. Modern car services are def an option. But those driving activities were almost daily ritual for me, so just not sustainable or affordable with Uber or Lyft. And asking family or friends to do that daily is just not an option (and would be burdensome, and annoying to them I’m sure). But I know it’s just a matter of eventually finding other avenues to get my introvert “recharge” that don’t involve driving. I’ll get there, and it helps to have support from this community. Cheers.
B-dub31 3 points 2y ago
I feel you. I experienced vision loss at age 37 and can no longer drive either. I had to take disability retirement because my previous career required me to drive. Like you, my wife hauls me everywhere. I miss the drive to and from work, just listening to music and thinking. It’s so frustrating because I live in the middle of nowhere. Wish I could offer you some constructive feedback, but at least we can comiserate...lol.
ugly-olive [OP] 2 points 2y ago
Haha! Thanks. Hey it’s helpful to just know I’m not alone and that others have gone through this and are still ok.
B-dub31 2 points 2y ago
I did want to say that it’s normal to grieve these types of losses. I had a heck of time adjusting and it definitely affects your mental health. Don’t hesitate to seek counseling because it’s a huge adjustment. Definitely reach out to a low vision specialist to get hooked up with assistive tech and accommodations. I’m not sure what you do for a living, but you shouldn’t hesitate to seek accommodation if necessary.
[deleted] 3 points 2y ago
[deleted]
xmachinaxxx 3 points 2y ago
I’m sorry this happened to you. I’m 2 years out from being told I can no longer drive at 40 years old so I’ve been there. You will grieve your vision loss, the entire experience of driving, and sense of independence. The best advice I have to give is allow yourself to grieve. I was fine mostly too but also cried a lot the first year. Good luck to you and we are here to vent with.
Edit added words
Edit added words
ugly-olive [OP] 3 points 2y ago
Thank you. I was def in denial when I was first diagnosed, thinking/hoping that RP will only really affect me years from now. The no driving verdict last week made it all too real, very fast. So you’re right. I gotta take the time to grieve and accept it eventually.
Blind-bigfoot 3 points 2y ago
You might not be ready to let yourself hear this. I know I wasn't when I went through Something similar. You are not a burden. I have a feeling you have a pretty great wife who loves you and a family who cares about you. It took me awhile but you will find your way.
ugly-olive [OP] 2 points 2y ago
Thank you for this. My wife is pretty fantastic, and I wouldn’t be able to go through this without her.
snow671 3 points 2y ago
I am so sorry you're going through this.
Is there a train or public transit in your town? You'd be limited to the transit schedule, but it would be one way to do things on your own.
Is there a train or public transit in your town? You'd be limited to the transit schedule, but it would be one way to do things on your own.
ugly-olive [OP] 3 points 2y ago
Thank you. There is public transit. Thank you for the tip. I think I first need to detach myself from my driving activities and putting so much importance to them as there are other ways (like public transit). Thx again
DevelopmentJazzlike2 2 points 1y ago
super late but i feel you. Im 20 and was diagnosed with RP a few years ago and never really got a chance to drive and I share your anxiety about not being able to see nature sights in the future. Personally ive used it as an excuse to do some of the things on my bucket list as soon as possible and learn things i will still be able to do once my vision starts to be in really rough shape (in my case this is guitar). It also really helps to do a little googling every once in a while to see what research is being done because real progress is being made generally and even more progress is being made on specific genes (you can get tested for which gene your rp is on but its pretty expensive). ITs also a great excuse to take walks to go places! Its a nice way to walk around and appreciate local nature with whatever vision you still have. Sorry if this is a bit disjointed, just wanted to share whats helping me/my outlook on RP. Take care!
[deleted] 2 points 2y ago
[removed]
ugly-olive [OP] 1 points 2y ago
Thanks! Sorry to hear about your own vision issues. The added bummer for me is that my RP is linked to Usher’s Syndrome. So I actually have hearing loss too...lol It’s only in one ear so far, and I wear a hearing aid, so it hasn’t been that bad. But you’re absolutely right that sight loss is more devastating. That said, having a platform to talk about it and to get support from others is immensely helpful. Cheers
This nonprofit website is run by volunteers.
Please contribute if you can. Thank you!
Our mission is to provide everyone with access to large-
scale community websites for the good of humanity.
Without ads, without tracking, without greed.
scale community websites for the good of humanity.
Without ads, without tracking, without greed.
©2023 HumbleCat Inc • HumbleCat is a 501(c)3 nonprofit based in Michigan, USA.