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Monday, 13 December 2021 20:20

A time to reflect

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15 years since we found out I, little deaf Molly, was going blind.

I am 27 years old and have been registered DeafBlind for 15 years. I keep thinking about the hard fact that I’ve been blind over half of my life. Sighted days and memories are further away from me as the days and years past, as a person it’s daunting as a deaf person it’s pretty devastating. 

I’ve had questions like “do you remember what it’s like being sighted,” “when you dream, are you sighted?” And truthfully I don’t know how to answer these questions because truthfully I don’t know. All I know is that is I remember life being easier. 

I’m not saying being deaf was easy, but day to day I was able to get by without needing to ask for help on a daily basis. I talk a lot about being independent and I thrive to be, but when all is said and done the hardest part of acceptance was accepting I need help, and I’ve noticed as I’ve gotten older I’m less bothered asking for help when I need it. 

That said, this past year I have moved out - my guidedog Bella and I, finally live in our own little home. I’ve wanted this for a very long time, not because I am 27 because it’s of course it's not unusual for anyone any age to still live at home - but I’ve known for the past 2 years especially since lockdown that, I’ve been ready to pursue a life of full independence.  One thing I definitely have learned even just recently, that I’ll never stop needing help. That’s okay. With a progressive condition like Usher syndrome it is, inevitable,  as today reminds me, it was always going to be this way. That doesn’t stop me from doing what I can do, it just means a little help along the way will help me be where I want to me. 

2021 has been a testing year for everybody I’m sure, but for me a few good things happened, the main one I got myself a boyfriend, one who I can whole heartedly be myself with, never not shy away from being Molly - previous relationships I treated Usher syndrome like it was a part time job, I shied away from asking for help at the risk of feeling a burden. But as Usher syndrome goes, it being progressive and unpredictable with the mood swings and seasonal changes, I just cannot afford to treat it part time any more. I express constantly before anything I am Molly, being DeafBlind is not who I am but a part of who I am. 

Even when I was ‘just,’ deaf I never imagined being deaf would in any way stop me from doing life the way I wanted, and that’s one thing I miss most - the certainty knowing that although I was deaf, I coped amazingly with my hearing aids, lip reading and I didn’t resent being the only kid having hearing aids and asking people to repeat themselves constantly.

Now, as a DeafBlind person, there’s no resorting to lip reading, there’s actual things I’ve wanted to do that I’ve not, or will never be able to do for example: driving. I’ve always envied anyone who could get in that drivers seat and drive. “You’ll never be designated driver,” cor how I’ve clung to that phrase, and “it’s so expensive,” but isn’t life? As I am learning more and more since I’ve left home. 

Quite honestly I think I’ll always be a little gutted I’ll never be able to jump in the drivers seat and drive wherever I would like, just because! Times I’ve sat waiting in the car while friends went to put petrol in, or get cash out and I’ve sat staring at the steering wheel wishing, imagining - that’s something I have of course accepted, but it doesn’t make it easier. I am independent, I am able to jump on a train or a plane and travel - but we all know how awful public transportation is - imagining that being your lifeline? Cancellations, delays, inaccessible locations that requires extra Uber’s - and dare I say, the high risk of them refusing you because you have a guidedog - it’s pessimistic to say so but unfortunately it happens more often than not. 

Molly Watt Trust was set up many moons ago to help enhance the daily lives of those with Usher syndrome, and it’s fair to say we’ve done that and continue to. 

Molly Watt Talks was set up almost 5 years ago where I continue to use my voice to fight for a more inclusive planet, one that designs to be more accessible, for all services provided to be more accessible, for attitudes to be more inclusive, environments to be more accessible, workplaces to be more diverse and inclusive. 

Molly was brought onto this planet to be this person, to help others and create positive impact for others living with challenges. I am proud to do the work I do and along with the crew at Nexer Digital doing great things, we’re succeeding.

Times like today, particularly since I’m isolating (I’m fine,) I have been reflecting. 

The very realisation that I’ve been blind over half of my existence has been a bit of a reality hit for me and one that I’ve been thinking about a lot. Which is a crazy thought since I talk a lot about my story at work, and in my day to day purely to raise awareness - I know my story and many who have seen my talks know it back to front, but I’m still a little taken aback at the realisation.

So do I remember things as a sighted person? 

I really don’t know. One thing I know, is I have a hell of a lot of memories that have justified my lack of vision. My experiences will forever be talked about, I will always be an open book since that’s just my personality.  Over the years it’s been hard to talk my Deafblindness, but like it or not, it’s brought me here. I didn't feel overly 'different' as a deaf child but Deafblindness has brought so many experiences I never thought possible and I have accepted never will I experience things as a hearing and sighted person, again. Those words are scary to write, but are my reality. 

I don’t resent my life, I don’t feel my existence is pointless - there were times where these were very things I thought daily. Mental health has and will always play a big part of my growth. But here I am, living in my small pad with my guidedog listening to music to uplift my spirits (big shout out to GN Hearing) and to go along with the mood I’m in, I’ve changed my flat around for the 26364738th time. I love it. This is me, Molly, 27 and Deafblind. Happy and independent.

I’ve always called it a phobia, the way I think about the future - I would avoid thinking too far forward as it would terrify me because I know my 5 degrees window of vision can only get smaller. But for the first time, ever, I am not afraid to think a little further into my future and all I see now, is me continuing as I am, this time with a boyfriend as well as selected family members (who’s family is perfect?) and few good friends - and I can say that with full confidence. 

27 years severely deaf, 15 years blind, 13 years with depression and severe anxiety > 27 years of Molly’s adventures that have not yet finished. Let’s see where the next few years take me.

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