Hi, I have retinitis pigmentosa due to ushers type 2a. Started cane training, still have good central but limited peripheral. Advice about stepping out into public with your cane when you still see and are not sure if you really need it or not? Tysm and wishing you all well.
OddRedd8 points2y ago
I'm from Switzerland and I've been in a similar situation. Always thinking what others will think. Finally found the nerve to say fuck it and since then my cane is never more than 3m from me and I consequently use it always when out of my appointment. I accepted that I can't know if I need the cane in a certain situation because I don't see the possible obstacles, that's the whole point of using a cane. Ever so pften I catcg myself thinking I wouldn't have needed the cane for something and the next moment it saves me from a bruised shin if not worse. If people are irritated I don't see it and if they question me I explain my vision to them. But mostly they will asj what I can see if at all, I've never had someone accuse me of being a hack. And do not underestimate the benefit of having an easily recognized "marker" that explains why you're behaving strangely. Sure, most people will assume you can't see at all, but a lot of people will also offer help or simply go out of your way so you can concentrate on avoiding inanimate objects and children :).
Greetings from Switzerland and enjoy your life with less bruises!
CraftsyHooker2 points2y ago
Cool good to know there are other swiss on Reddit!
OddRedd1 points2y ago
Heh, there are whole subreddits full of 'em :). Greetings from Basel.
CraftsyHooker2 points2y ago
Greetings from Geneva 👋
LadyAlleta4 points2y ago
Honestly, you gotta just take the plunge. Even after I've used my cane for a few years now, I still hate having people stare.
It's gonna make people act differently around you, and you can't really do anything about it. I've had people come up to me and grab/drag me across streets, and have had people come up and tell me I'm an inspiration. And while I can't see them, I know when I hold my cane that I am center stage in the public's eye.
I use my cane because I decided that the attention is better than the broken bones.
Mokohi3 points2y ago
Don't psych yourself out of using your cane cause you're worried about not really needing it or not being "blind enough. When I first started mobility classes, my teacher didn't really think I needed a cane except for maybe at night. So, being new to everything, I hesitated to bring up that I definitely had issues in the day too. I eventually grew more confident and brought it up and started using my cane all the time. I gotta tell ya, it really made travel SO much less scary for me and made me so much more confident and safe.
hysteria6133 points2y ago
My wife is the one using the cane and people always do the same thing when we're out together. She has RP also so her eyes look normal so people always look at the cane and then her eyes and some give the snarkiest looks because they think she is faking in order to make people get out of her way. She's young and her eyes aren't completely white so clearly she's faking, right? The best was when she was pregnant. People got the most puzzled looks, like "can she do that?"
paneulo3 points2y ago
This doesn't directly answer your question, but I recommend the book Care and Feeding of the Long White Cane to any cane user. You can find it for free online. It's a relatively short book, but packed full of great advice from a long-time expert cane user.
AchooCashew2 points2y ago
I have never heard of this book! Thank you for the recommendation.
Sanders_for_Chicken2 points2y ago
I started carrying an ID cane a few years ago, and yeah, it was a little weird at first. I wasn’t sure what my friends or family would think, or the people that I work with who knew me. Not surprisingly, everyone was real supportive. Some asked the basic questions, like “what’s with the cane” or “ when did you start carrying that?“ but never in a negative way.
The fact is, I began reaping the benefits of the ID cane on my very first day of using it. Somebody recognized that I was struggling and offered assistance, unsolicited. I didn’t have to explain that I couldn’t see, which I think is always the hardest part about having to ask for help. By carrying this cane, people recognize and tend to be more sensitive, As compared to when I’m not carrying my cane, and it feels like people think that I’m just in the way.
Truly one of the best decisions I made for myself.
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bigmiracle [OP]2 points2y ago
Tysm for your reply. No meds just vitamins. I'm not alone but in regards to using the cane in m very much alone. Some of my community knows there's something up, a few i told bc they asked me but most have no clue. Wife is nervous about the tsunami of questions that won't stop for a long time. Fact is if you love someone truly most of the outside bother wouldn't be an issue at all.. transitioning without real support around is rough
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bigmiracle [OP]2 points2y ago
Gd Bls You!!
siriuslylupin61 points2y ago
Never too early to start using a cane in public.
bigmiracle [OP]1 points2y ago
I'm using the cane 2weeks now, i feel a chunck of my stress has dissipated and been replaced with confidence. Support from the community has been overwhelming and my family has acclimated nicely. Ty Gd!!
siriuslylupin62 points2y ago
That’s good to hear. That’s great it is going well. It’s often more self then others limiting really.
bigmiracle [OP]1 points2y ago
Any experience w the no-jab cane? The jabs even with the rotating ball are a pain. Tx
siriuslylupin61 points2y ago
What’s a no jabs cane. I do pretty well with a cane so I find lighter ones nicer. Carbon fiber or the slimline ambutech ones
bigmiracle [OP]1 points2y ago
Wife's having major issues accepting the situation as well. No O and M yet together with her but when I asked her to join me for a meeting w my cane instructor, instead of saying, let me know when I'll be there, she said, uh uh I'll need time to mentally prepare myself, What is that! Has anyone else experienced so much unacceptance by core family of your vision loss? Does this sound like someone you would want to live with the rest of your life, unable to accept life's challenges with love and unity. Love conquers all.. supposedly.
4humans2 points2y ago
If she’s embarrassed to be with you when you use a cane or needs to mentally prepare herself to be able to support you she’s not going to stick it out. She need to be supportive and encourage you to learn new skills and strategies to maintain your independence. Best of luck.
bigmiracle [OP]1 points2y ago
She wants me dependent on her , it keeps her in power, hint hint she's a TAD narcissistic.. Tx for the replies, have a great week
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bigmiracle [OP]2 points2y ago
Wow!! TY dear friend for your reply! The vision is unfortunately only a fraction of the issues. Cheers!!
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