Going Blind Sucks

This week we look to keep it lighter and talk about ways that non visually impaired people can make life a little easier for visually impaired people.  Pretty simple.  Almost feels weird writing that short of a description about it, but that’s what it is… So yeah, take a listen.

This week we discuss some good news we received from the eye doctor, talk about the additional stresses of buying a home when you have RP hanging over your head and struggling with enjoying now when you feel like you have to protect yourself for the future.

In this week’s episode we talk about being angry.  It is a natural part of losing anything, but society frowns upon it.   Is it really fair to expect a person to go through hard times and not be angry?

In this week’s episode we talk about how hard it can be to shake off tough vision times.  What is at the heart of being so scared and look at what is the worst that could happen?  And we look at the difference between complaining and letting others know what you are going through.

In this week’s episode Joy tries on the RP goggles again, this time at night.  We talk about how sometimes folks validating how hard it can be can make you feel worse.  We also discuss how hard it can be taking care of someone with a disability and how hard it can be to be … Continue reading Episode 21 – Joy Tries RP Glasses At Night & How Validation Can Hurt Too →

On this week’s episode Joy tries a pair of tunnel vision simulating goggles  and gets a better idea of what it’s really like to  have RP and Dustin explains why closets are for suckers. Here is the link for the glasses.

This week we discuss a potentially dangerous situation that Dustin got himself into and how it gave him a glimpse into what a possible future could be like.  We also discuss a sense of losing independence when traveling gets too hard and how you sometimes have to take care of yourself and maybe spend the … Continue reading Episode 19 – A Glimpse In To The Future →

In this week’s episode we talk about dealing with jokes about your vision loss.  We share a real story of the blind literally leading the blind.  We are baffled by some folks in the UK being mean to a visually impaired little girl.  Finally we talk about if sometimes it is okay to give in … Continue reading Episode 18 – Victory in Losing? →

In this week’s episode we discuss how sometimes things like the remote control move all on their own, or at least that’s the story I am going with.  We talk about why using the wheelchair symbol for people with disabilities can make people uncomfortable asking for help.  Finally we talk about how the volume on … Continue reading Episode 17 – Everything Is Getting Super Sneaky →

This week we talk about hitting the next level of vision loss and how sometimes you need to mourn even when you don’t want to.  We also talk about how to navigate talking to and dealing with all this at work.

Eye Doctors love to shoot strobe lights into your eyes to test for things.  At least mine do.  This week we talk about the joys of the ERG test (and there are many).  Plus we discuss the difference between going to a regular doctor and a research doctor.  There are definitely some trade-offs.

In this week’s episode we talk about how about you can get tricked by traveling along familiar paths.  As soon as you go to the unfamiliar you discover just how little you could actually see before.  Plus I freak out a little bit about my upcoming ERG.

On this week’s episode we talk about the good and bad reasons they had to push off my surgery, vision induced panic attacks, a place to speak with other visually impaired/blind people and fear of being singled out by bad guys when walking alone with a cane

This week we discuss why my eyes totally hate me and are making it so I need surgery in the next few weeks.  Plus, proper bed side manner (or in this case improper), why sometimes it’s better to not know the answers to your questions and maybe, just maybe, a little bit of hope.

So it turns out that the loss of middle vision was a bigger deal than we thought.  This week we talk about our visit to the retina specialist to discover my right eye has taken a turn for the worse, the crazy surgery I might need to have and why my doctor is crazy excited … Continue reading Episode 11 – My Eyes Are A Medical Mystery →

This week we talk about a recent problem I have been having where I will sometimes lose my middle vision and we’ll tell you all about the new improv comedy team I joined and how I am using it to test the limits of what I can and can’t do now.

In this week’s episode we talk about VisionWalk NYC and why sometimes when people tries to show sympathy it can actually make a person feel way worse.  That and Joy gives me a hard time about not vacuuming enough.

A surprising number of people are facing all the difficulties of going blind without the support of family and friends.  That sucks!  In this week’s episode we talk about why that might be, what they might not understand and we try to figure out if there is anything that can be done about it.

In this week’s episode we talk about my most recent trip to the doctor for genetic testing regarding my RP.  We look at what the experience was like, is genetic testing worth it and eventually how it affects those around you.  Let us know what you think. This one gets pretty emotional.

In this week’s episode we try to explain what a person with RP actually sees, we try to decide if I’m getting spoiled by people getting out-of-the-way in the subway and how sometimes the diagnoses can be too much to handle.

In this week’s episode we look at the emotional toll a trip to the eye doctor can have.  Is it better to live with some denial or know everything that’s going on even if it’s bad?

In this episode we talk about the possibility of going completely blind and how it affects every aspect of planning for and even thinking about the future.

In this week’s episode we talk about mentally coping with RP.  A while back I watched an interview with Michael J. Fox where he talked about having Parkinson’s. He seemed so well-adjusted and almost happy that he had it. It totally messed with my head for a while. Should I be dealing with RP better? … Continue reading Episode 3 – Michael J. Fox Is Messing With My Head →

In this week’s episode we discuss making the move to using the white cane. Does it work for the forces of good or evil? Does it really make you feel more independent or is that what people who can see say to make people who can’t feel better? Is everybody who sees you using one … Continue reading Episode 2 – Nice Cane Blindy McGee →

This is where it all begins. Are you ready? I’m not sure I am, but here we are. In episode one we discuss the time I found out I had RP and how it led me to creating this podcast. Enjoy.