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Friday, 01 January 2021 16:27

2020 and Me!

I remember thinking 2020 is going to be my year, finally I’m getting somewhere, I’m going places, I had work plans, a diary full of work and travel all round Europe and Scandinavia - many events booked a year in advance, why?  Because clients wanted me!  Yes, I was approached directly.  I cannot express how good that feels.  My hard work, my desire and persistence to make a difference had really begun to pay off my work, my commitment and passion for accessibility, inclusion and positive change noticed for what it is.  The importance of diversity.  Could things really be taking off for me?

I have been self employed for 4 years and my hard work had begun to pay off, things were popping up here and there and with other bits of contracted work, life was heading in the right direction - finally able to save for the first time in years, to move out and be independent. 

The first 2 work trips of the year went according to plan, first to Stockholm and the next to Paris, both went really well and then BANG, COVID-19 struck big time.

Of course I had heard about it but I certainly hadn’t considered the severe impact it would have on everything and everybody.

Lockdown struck leaving us all a little lost. Thankfully I had my work at Sigma IT to keep me going and how important that was, we could continue to work remotely, however then came furlough and along with it routine and structure flew out of the window. 

The nightmare continued:

“You can leave the house once for essential shopping or independent exercise” 

“Masks must be warn at all times”

“Keep 2m distance at all times”

Truth be told I didn’t leave the house, not for a long time. Essential shopping? The thought made me heart race, how could I being deafblind be able to exercise the 2 meter distance rule? Let alone find essential items in a busy shop full of anxious people wearing face coverings: obstructing my ability to ask for assistance!

After a fair few weeks I did build up the strength with the help of my family to go for walks with the dogs from time to time, but even that I did find it tough to keep up.  

Hibernation was something a tad too familiar to me, a bit too easy for me to fall into. I could feel myself falling, I recalled when I first came home from boarding school (for good) all those years ago, all I would do was hibernate - sleep became my best friend! 

My old friend anxiety and his best mate depression swept over me and I just felt defeated, deflated and tired. 

My family and friends allowed me time to reflect and to straighten myself out as best I could and as time went by I did come to terms with the situation. 

This time I was not alone in a world of isolation, the world that many deafblind like myself can live in, in fact more than ever before many had entered our world and they were also struggling.

Three of my closest friends made it their mission to FaceTime regularly, arranging quiz nights and chinwags with a glass (maybe two!!) or wine. This became my routine, became my social interaction and my medicine - seeing familiar faces made my heart warm.  We like so many found a way of following the strict rules of lockdown and socialising.

I became motivated to start the family quizzes as the almost daily calls to my grandad who lives on his own did not feel enough. He has an iPad - the exact iPad I tell everyone I helped set him up on, why not put to good use and keep him in the loop?

Wednesdays became family quiz nights with Grandad, my parents, my sister and I plus my auntie and two of my cousins.  We would join from 3 devices (this household, auntie’s household then grandad’s) to make it a little less confusing for grandad. 

Thursdays became immediate family quiz nights - My parents, sister, brother and girlfriend plus brother and wife (with beautiful nephew of course.) 

We had a routine, that’s when things got a little easier. 

Lockdown eased and we could do a little more, but with precautions. This of course made me very nervous. I struggled with it for a while and again, would avoid it whenever possible!  My friends made the effort to come and sit in my garden or go for walks and get coffee - all at a distance but knowing they could still offer assistance if absolutely needed be, again my nearest and dearest made me feel safe when I couldn’t be sure for myself.

I then braved the train for the first time in several months with Bella, she was keen as ever to dust down her harness and get me back out. We did a short run to Reading where one of my friends lives to see her new flat, she had offered to pick me up and drive me home but I insisted on doing at least one of the trips independently - and I am glad I did.  Bella doesn’t do social distancing but she does safe and Im good with that, we do have to rely on the public realising we can only do what is possible and they must consider we do our best in the most difficult of situations.

Somehow the Molly Watt Trust carried on as best it could with Mum rallying the troops, finding local ladies and gents to come together to make home made accessible face coverings (face masks with a large clear window) whilst we searched for an outlet to buy in bulk.  Those face coverings made life a little more doable for those of us who rely on lipreading, in fact the compulsary wearing of facemasks made so many people much more aware of how much they relied on lipreading and facial gesture even though not knowingly deaf or hard of hearing.

We also continued to work with our friends and supporters, with those at GN Hearing and audiologist Sarah Vokes at Correct Hearing to bring the gift of hearing to two more people living with Usher Syndrome - huge thanks to all involved in making this happen.  Hoping to continue this work into 2021.

Then came another lockdown then Tiers then more tiers... Honestly I am a little lost with it all at this stage. 

All I know is Christmas was strange. My sister gave birth to beautiful baby boy almost 3 months ago and his presence in this household has made life in lockdown/ tiers far more bearable. 

I first became an auntie the day before the first lockdown struck - this was really tough!!

Casper is now 9 months old and an absolutely gorgeous bundle of joy.  It was so hard not being able to meet Casper the first 3 and a half months of his life. 

Living with Noah who is almost 3 months has made me feel almost sadder that we missed those months with Casper, though we were inundated with pictures and video calls, not being able to meet him, to smell him, to cuddle him and listen to his coos in the first few months were precious times, lost. 

Speaking of listening in September of 2020 I began wearing Resound One smart hearing aids that for me was a high point, one of the few, it coincided with me getting to see so much more of Casper and the little man had found his voice.  I got to experience his cooing, gurgling sounds, his raspberry blowing, his giggles, his belly laughs along with his squealing and crying.  I got to play with him with all his noisy toys, boy can toys be noisy!  I didn’t get to appreciate noisy toys when I was little my hearing aids simply weren’t up to it!  I have to say I enjoyed every sound of his, he really is the cutest.

Casper loves a squeaky Hey Duggee toy and loves to watch The Chase, he seems to find the buzzer sound amusing.  So much joy to be had with the gift of hearing, thank you ReSound I’m enjoying the gift of sound more and more.

Back to Christmas: we were thrown into Tier 4 days beforehand meaning the original “three family bubble” wasn't going to happen. To say I was gutted was an understatement. 

Casper and Noah’s first Christmas was something we had all looked forward to - we’d bought matching outfits for the boys and so many presents for them.  Naturally we wanted it to be special but it was not to be!

Christmas was nice but next Christmas will be better!  

So there I was, writing this on 31st Dec 2020, thinking of the many challenges, the sadness, the anxieties, the isolation, the rejections, the fighting back and refusing to be beaten by the monster that is Covid and I've made it - I'm stronger than I thought!

I'd like to see my Grandad soon to see more of Casper and my family members.  

I've also really missed my work colleagues who I really need to thank them for keeping me busy online, always finding the way for us to carry on with our essential work in online design, accessibility, usability and enablement, which over the cause of this pandemic has become even more vital.

I'm hoping 2021 will be kinder to us all, that we can all be a little kinder to each other and that some sort of normality can prevail.

Wednesday, 28 October 2015 06:44

Depression, Dealing with Demons

I was 17 years old, my first year in 6th form, studying for A levels.

I'd been pushed around, made to feel different when I just wanted to fit in, was coming to terms with going from deaf to deafblind, to being a guide dog owner and coping with all the usual things teenagers deal with.

I had an untold number of professionals involved in my life and looking back now only one of those people actually tried to understand me and sadly I only saw her once a term.

At my real time of need I was bullied, not just by my peers but also by the staff.

I have always used my creative ability to make a point and my communication skills should have made me an easy person to support, strangely the staff spent most of their time telling me what my needs were instead of listening to me, they told me I didn't need my guide dog, not because I didn't as let's face it, Guide Dogs for the Blind don't just hand out guide dogs to anybody, but because it would have suited them for me to not have her!  

They told me when I could cope and what I could cope with, strange as anybody familiar with Usher Syndrome knows blindness is progressive and that every day can be different.  There are good eye days and bad eye days so in actual fact the only person who really knew how I was feeling and what support I needed was me and as much as I stood my ground they ground me down to the extent I began to question myself.

It was there that my downward spiral into depression came, I was driven to it by the very people who should have understood.

I had to leave that awful school, I should never have gone there in the first place, I did not fit in, I tried to but you can only pretend for so long, especially when you know it is you compensating for everything including the poor support.

It was exhausting.

I wish I'd been able to stay in mainstream, it was there I had the best possible support as a deaf child, however, sadly there was little understanding of Usher Syndrome.

I always had somebody to talk to, somebody to listen and try to help, I'd never been told who I am, what I needed or how I should behave, although I was deaf and going blind I wasn't unhappy!

On leaving that school I had the comfort of my own home but I didn't want to leave my bed, I  wanted to hand my precious guide dog back, I wanted to be left alone, I was so unhappy.

Nobody came to support me, they came to question me and to tell me what I should do, I didn't need that, I needed help and understanding.

Only my family was there for me, who to this day say that depression was more frightening for them than supporting me with with deafness or deafblindness.

I was ill, but I didn't understand what was happening to me.  

My doctor was very supportive and very angry at the way I had been treated in a school that should have known better and seen the symptoms of depression.

We spoke about counselling but I didn't want it, as far as I was concerned I didn't need it, only people who have lost the plot have counselling is what I thought!

I don't like the term "Mental Health" for me it conjured up thoughts of people in white coats, in hospitals, stereotyping, how wrong was I? It was because of these thoughts that I did not want to consider the help I needed!

Instead I hid away in my bedroom not wanting to do anything.

I was afraid but I couldn't "snap" out of it, I did not want medication I wanted to just get back to my old self.

Unbeknown to me my Mum had put me on a waiting list to see a counsellor.

I remember the day she told me I was going for my first appointment!

I was dragged to the car and literally dragged out of it, I did not want to go, to me counselling meant being mad (Mental Health). I was not mad I was ill, I knew I was ill I just didn't understand what was happening to me.

I barely spoke for the first few sessions of counselling and I won't go into the actual meetings with my counsellor but will say she was not an expert on deafblindness but a lovely lady who listened and gave me back a lot of the confidence that had been taken from me.

I got used to seeing my counsellor on a weekly basis and after a while I actually looked forward to seeing her.

I saw her for two and a half years and I learnt a lot not just about myself but about others.

I am not embarrassed or ashamed to say I've had counselling because of depression I'm actually quite proud to say I faced my demons and can be compassionate to others going through similar issues.

During my two and a half years of counselling I restarted my A levels at a mainstream college.

The college staff and friends also supported and helped me through the darkest days of my life and my two years at college are amongst my happiest.

I was completely accepted as the person I am, I have Usher Syndrome, I am deafblind, I have a guide dog and More importantly I am Molly.

I am happy being the person I am, I don't have to pretend or try to be anything I'm not.  As my Mum says I'm comfortable in my own skin.

I am challenged every day and I understand my challenges, I understand my strengths and my weaknesses and I am very capable, however I need others to understand Usher Syndrome is deafblindness but it is all too often not deafblindness alone..