Christmas Challenges with Usher Syndrome

Dark haired young man wearing a blue, yellow and white check shirt.

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Hello, my name is Josh Parker and I have Usher Syndrome type 3. Most of you reading this probably already have an idea what Usher Syndrome is, so I’ll keep the next bit short to get to the main point of this blog. I wrote a more in depth blog about my full diagnosis on this site roughly a year ago but here is just a quick summary.

I was diagnosed with Retinitis Pigmentosa when I was 5 years old and can never really remember being able to see ‘normally’. As a kid I always found it very difficult to see in the dark and always bumped into and tripped over things out of my field of vision. As I got older my eyesight slowly got worse to the point where it started to affect me in the day. My central vision was not an issue and I didn’t need to wear glasses. Instead it was the lack of peripheral (or side) vision that started to give me problems. Not seeing things that I wasn’t already looking at made getting around a little harder than it would be for someone with normal vision.

When I was 16 I started to lose my hearing and got hearing aids fitted at the age of 17. It has slowly been getting worse since then and I am now severely deaf. Although hearing loss is not a linear decline, by the way it’s going I will probably need a cochlear implant within the next 5-10 years, maybe even earlier. To put the icing on the cake, I had a retinal detachment back in 2012 which means I have practically no useful vision in my right eye anymore so I rely heavily on my left eye which can cause eye styes.

Now to the main point of the blog, how does Usher Syndrome affect me at Christmas? Well I guess I’ll start by saying that I love Christmas time. Getting together with your family and friends and having a great time is what makes it so special (and a few presents of course). As for my Usher Syndrome, the time of year doesn’t automatically change how much I can hear or see, but there are several factors that make Christmas, and winter in general, a harder time for me (I didn’t mean to make a rhyme there but it works).

The first difficulty that all of those with RP can relate to is short days and long nights. Longer nights mean more time in the dark which is exactly what causes the most problems. Although it’s not strictly related to Christmas as such, I have had a lot of trouble recently at university since all but one of my days finish after 5. By this time it is pitch black and I must walk from my lecture to the bus stop in order to get back to the city centre of Nottingham where I live. The trouble is, the area around the bus stop is not very well lit and there are lots of people that are scrambling to get on the bus. People come from all directions and often walk in front of me or stop without me seeing them. In the last month I must have bumped into roughly 20 people just near this one bus stop! I often get some nasty looks even though I’m extremely apologetic, especially from girls. I tend to forget about it until it comes to that time of day again, but I just have to go and accept that I am probably going to have to apologise a couple more times. As well as the problem at uni, it can sometimes be an even bigger issue when I’m out and about in the city. The general population (in my experience) do not tend to be quite as forgiving as most students and I’ve had a few situations where I’ve almost been punched because I’ve accidently walked into someone in the street.

I also spend a good portion of Christmas on nights out with friends and family. Being in dimly lit pubs and dark clubs has always been an issue no matter what time of the year it is. In this case though, I actually think the lead up to Christmas makes the majority of people more relaxed and forgiving so they don’t seem to mind as much if I bump into them or accidently spill their drink. The first thing I do is pull out my ‘sight impaired’ card from my wallet so they know I didn’t mean it and wasn’t just being a *insert rude word here*. I then offer to buy them another drink, which most refuse funnily enough. I assume they feel partially responsible for bumping into me and people often apologise to me instead. There have been occasions however where I have spilt drinks down people and they have had to be held back by their friends whilst I try and explain my condition.

Although most of my Christmas difficulties come from my eyesight, there is one major thing that affects my hearing during winter, colds. I’m not the sort of person that gets ill all of the time and I only really catch them during the winter when they are most prominent. As I write this blog I am still recovering from a cold which caused my hearing to become extremely difficult. Many people suffer from slight hearing loss due to a cold as your Eustachian tubes can get blocked and infected. This causes a negative pressure in your middle ear which means your ear drum cannot vibrate properly. This effect is amplified for hearing aid users and here’s why. For a person without hearing aids, even if the ear drum has negative pressure acting on it from the inner ear a sound can still cause it to vibrate with relative ease due to there being a nice big hole on the other side (aka your ear hole). For a person with hearing aids this hole is plugged up nice and tightly which causes a positive pressure on the other side of the ear drum. This doesn’t allow it to vibrate very well at all which makes it much more difficult to hear. I guess a good analogy is when you leave the back door open. It is much easier to slam a door inside due to the air being able to escape out the back than it would be if the back door was closed. Even better, if you didn’t have a cold it would be like slamming a door when you have the windows and doors open, they slam themselves!

I’m sure there are a few other little things that can cause me a bit more trouble during the Christmas period but they definitely do not outweigh the good times I have with my family and friends!

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