Usher snydrome

How one woman uses her creativity to bring awareness to Usher syndrome.

I recently had the pleasure of speaking on a panel at Harvard Medical School with Molly Watt at the Usher Syndrome Coalition Family Conference. – (Full Transcript)

Molly created a video on YouTube – “Have you?”. She talks about her challenges of having Usher syndrome type 2. She shares how she strategizes the most basic daily activities. I was introduced to Unis, her guide dog and constant companion.

Molly, who recently turned 20, is already an accomplished person. In addition to speaking at Harvard, she has spoken at the House of Commons and many schools. She has also written a children’s book. Moeeover, she is very active on social media through Facebook and Twitter. She shares her experiences and engages with others. Molly states “Social Media is priceless to those with Usher syndrome – isolation can be the worse symptom of the condition.”

Molly is determined to raise awareness about Usher syndrome. Back home in England, she answered my questions.

Mike Walsh: What is your vision like today? How do you explain it to someone with normal vision?

Molly-Jane Watt: Depending who I talk to… to one person I’ll say i have tunnel vision in one eye while the other eye has ‘pretty much had it’. But to another, I’ll go on to explain I have blind spots, and very impaired central vision due to my secondary eye condition as well.

I get flashing lights, blobs and floaters on a daily basis, and depending on how I’ve woken up that morning and how the weather is, depends how impaired my vision is on the day…

So in general, I get good and bad days

MW: Your website [MollyWatt.com] was the first place ANYWHERE to give me the term “glare blindness” to explain my sensitivity to light. Do you wear hats and shades a lot?

MJW: My eyes are incredibly sensitive to light changes and bright light = glare blindness, so yes I wear sunglasses a lot

MW: How does different kind of weather affect your vision?

MJW: Bright days are difficult, dark days are difficult… it’s difficult to find an actual day that is suitable… but with glasses and Unis i cope just fine.

MW: When you were looking at colleges, you kept getting rejected because schools didn’t know how to deal with someone who was deafblind. Finally someone at Strodes College said “we have never had anyone with Usher syndrome before, but we really want to learn and work with you.”  How did that make you feel and did they follow through?

MJW: I didn’t fully believe it until I started the college, I was in doubt and was ready for it to go wrong again! I was always always preparing myself for the worse, as sad as it sounds, I shut myself away from a lot of people and even did from the people at the college when I first started because I was frightened to open up to people and feel let down again.

After some time, within the first term there I started to feel so much more comfortable in my own skin… People at the college knew me no different, and thats what I liked, they accepted me for who I was, and thats all I could’ve asked for!

MW: What do you think the school learned by having a student with Usher syndrome?

MJW: They were already so open-minded, which helped. They told me they had learnt a lot from me and really hoped someone else would come along for them to be able to use the same skills on

They told me there really wasn’t that much that they did, they said they alerted the teachers and hired a note taker who modified all handouts and corresponded with the teachers before lessons… They stressed to me that having me was really not a big deal, which was fresh news for me! I often would fee like too much hassle and a bit of a burden so hearing that from the college was a relief!

MW: You were recently shut out by a restaurant because you had a guide dog with you. You posted about it online. How has the feedback been?

MJW: Everyone I know, people who support me on social networks were incredibly shocked. It brought back horrible memories for me, but thanks to the brilliant support system I have, it didn’t take me long to bounce back to normality. It’s just yet another battle, one of many I’ll face in my lifetime. We contacted ‘Guidedogs’ and RNIB legal team, they are apparently handling things.

MW: Has the restaurant said anything?

MJW: They deny what was said! Of course… We expected that to happen. So i’ve had to write out a series of events that occurred that evening and email [the] RNIB legal team … Small stepping stones I guess!

MW: baby steps. Tell me about Uni. How long have you had her? What does Uni do for you that a cane cannot?

MJW: I have had her 3 years. Uni has a wet nose, a wiggly bum and a waggy tail and a whopping great character that helps me through my lows and never fails to make me smile! As well as being the best at her job, keeping me safe and walking me around obstacles and opening up my world of independence. Since having her, I’ve done things that I would never of done, without the confidence Uni has given me!I never got on with a cane, nevertheless a cane is always in my bag in case its ever needed- worse case scenario. 

MW: How did you come up with the video “Have you?”

MJW: I get bursts of energy sometimes, sometimes I’ll go for a run, other times I’ll get out of the house and see my favourite people or treat someone to a meal! And lastly, other times I will create a video and do one of the things I do best, to raise awareness for those with Usher syndrome

Once i’m in the zone for any of these things, no one will take me out of it. Creating a video takes up a lot of my time, and a lot of patience… I’ll often take tea. l [take] situations that I’ve been in and reflect it into a short video to grasp people’s attention and just hope for the positive feedback

MW: What kind of feedback have you received from the “Have you?” video?

MJW: What I love, is when people message me and say that when they’ve watched a video made by me and they tell me how much they related to it, and how much it helped knowing someone else knew what they were going through… suddenly someone sat on the other side of a screen doesn’t feel so lonely anymore…. And I feel rewarded for that, knowing I can help in that sense

MW: leads me into my next question: How do you use your creativity help spread awareness?

MJW: I’ve had people tell me they can relate to what i’m saying. I’ve had professionals ask me to use my videos in training for teachers working with people with sensory impairments, I’ve had parents tell me that when they first receive the diagnosis of their child having ushers, that my video was the first thing they saw, and just how much of a relief it was to watch my video before anything…

MW: What others ways have you used your creativity to spread awareness of Usher syndrome?

MJW: The other way I’ve tried to use creative to raise awareness, is by my art and also the book I’ve recently produced

MW: Yes, tell me about the book. How did that come about? Did you get in the zone again?

MJW: The book is just a short basic story aimed for 7/8 year olds that i created actually as part of a college project. Once I got the idea that i was going to write and illustrate a children’s book, I definitely got back into that zone because I knew exactly what ‘message’ I wanted in it.

The message in the book is on ‘inclusion’ which was a big one for me growing up, and people I know. Being deaf or deafblind you often felt you were the odd one out and excluded. So i figured to make a story out of that

MW: What’s next for the book? Book tour? Are you looking for a publisher?

MJW: We have 2 publishers that are interested in the book … We’ve contacted 4, and going to wait to hear from more before we make the decision with what to do! I’m considering making posters to go up in schools and perhaps another book

MW: What is the Molly Watt Trust (MWT) and how did that come about?

MJW: In England, we have a selection of charities, there are deaf charities, RP (Retinitis Pigmentosa) fighting blindness charity and SENSE, a deafblind charity, which we’ve done our bit to help out with all throughout my lifetime.

When it came to support in return, we found that people with Ushers were put to the side because they can ‘see a bit’ and can ‘hear a bit’ so therefore are ‘fine’ and forgotten! (Thats just the feeling we got)

And so, we decided too create a Trust to focus just on Ushers, to fundraise for gadgets/projects that can help us in the now and of course we continue to contribute to Usher research. MWT was created initially to raise awareness of Ushers and to help out with people who live with it

 

MW: Who is “we”?

MGW: My family and I decided to create the trust… from the networking we’ve done over the 8 years I’ve been diagnosed, we had a network of people we also wanted to help … My mum and dad are a great help.

MW: Speaking of gadgets, I see the “Access to reading” project that sends Kindles to people. I bet that has been an amazing feeling!?

MJW: Yes it’s been very rewarding getting people to access books again! Small things really do make a massive difference

MW: Are Kindles better than iPads for people with low vision?

 MJW: Everyone has their preferences. I personally feel Kindles for reading are much better. The anti-glare/normal page look works better for me. As well as all the font sizes and contrast you can alter on there … iPads are brilliant, but not for reading a book, I can only look at the screen for a short period of time and struggle reading a few pages on one. Whereas on a Kindle, I can read a chapter no problem without getting a headache. Yeah, we find that most people with RP prefer Kindles! But like I say, some are different

MW: You can’t lower the brightness on an iPad?

MJW: Yeah you can, but you still get the reflections and whatnot across the screen. Isn’t great when you sit in a decent lit room and all you can see is the light bulb reflection … That then forces you to turn the light out and sit in a dark room while plastering your eyes on a small screen, which as we all know, is just unhealthy for the eyes

MW: You are developing quite the speaking rap sheet! What have been a few of your favorite speaking appearances?

MJW: Harvard was definitely an experience! Also, the talk I did in parliament was quite a memorable one!

MW: Tell me about the tactile tour you got.

MJW: It was grand! Having spoken at the parliament they invited me back to explore the place- a tactile tour. This involved access in the House of Commons as well as the House of Lords, where the Queen appears on television.

MW: meaning you touched a lot of things?

MJW: We were allowed (unlike the other group tours) to sit on the chairs and feel the careful carved wood and art that was everywhere. [It] was really quite an experience- never seen so much gold!

MW: Do you feel like your condition heightens other senses?

MJW: My sense of smell is definitely heightened! And not always an advantage I have to say! haha

MW: Who is someone with Usher syndrome that you look up to?

MJW: Through networking we have brought a lot of people together, however i don’t really socialise with them… I do admire all the people with Ushers that are just getting on with their lives and not feeling sorry for themselves!

MW: well said… You mentioned at Harvard your boyfriend feels left out when you do talks and don’t mention him. Here is your chance to talk about him. How does he support you and your journey with Usher syndrome?

MJW: Lol, bless him. I got a big laugh out of that one! Haha! He was the first boyfriend where I felt I could be completely myself around. He was the first person ever to walk by my side while I worked Unis… He held my hand and that meant so much to me. Before then, I hadn’t even worked Uni with any of my local friends… None of them had even seen me with her, because I didn’t have that confidence. Whereas Dan helped me overcome those fears

MW: You also talked about traveling at Harvard. Is there anywhere special you want to go?

MJW: Where do i begin???

MW: top two places!

MJW: Hawaii and Vegas!

MW: ha ha nice! two opposites

MJW: Thailand! I wanna ride an elephant! And Mauritius.

MW: Do you feel a sense of urgency to go places before your vision gets worse? Is it supposed to get worse?

MJW: Yeah when i was first diagnosed I felt like I was in such a rush to do things. But then with my depression, I felt i couldn’t get anywhere in life. But now, I feel that whatever will be, will be. I really do hope I get the financial privilege to travel to nice places in the holidays I get when I’m teaching!

MW: Do you expect your vision to get worse from where it is now?

MJW: I am told anything could happen… When I over think about it and get all upset which I do every now and then, I do get worried. I don’t have a lot of faith in what the professionals have told me. As I was told at 12yrs old that I wouldn’t lose any of my sight until i was in my late 20s… but within 2 years I went from being partially sighted, to registered severely sight impaired- equivalent to legally blind. So already I’ve lost a lot of vision, so whether that stables for a while or not… I don’t know!

MW: What advice do you have for those struggling with the diagnosis of Usher syndrome? What advice do you have for family and friends of those with Usher syndrome?

MJW: Social media brings everyone together! When it’s used correctly, it is brilliant! Those struggling with Usher syndrome, I will advise them to try NOT to hide themselves away from reality. Talk to someone, anyone, whether it’s on the internet or to a counsellor or a friend or a family member. It can be the hardest thing opening up to somebody, but to try and get used to talking about anything and everything definitely helps in the long run

Also to take up a hobby, Keep yourself occupied to prevent negative thoughts. Live everyday like it’s a new day and don’t worry yourself with the internet self diagnosis- because every individual with Usher syndrome is completely different.

The family and friends, just let them know you’re there. Don’t pester them. but just be sure to let them know frequently where you are when they need you. Wait for them to come to you, and wait for them to talk about it to you instead of pressuring the subject onto them

Time definitely helps.

Thank You Molly Watt for taking the time to chat with me. If you would like to learn more about Molly and the Molly Watt Trust, please visit her website. You can also find and engage with Molly on Facebook and Twitter. 

Thank you Molly for the photos and Jason O’Rourke Photography for the picture from Hawaii. Livin’ up your Facebook News Feed with his beautiful pictures!