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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..

Tuesday, 30 June 2015 20:31

Just Imagine

Having Usher Syndrome means deafness with a progressive blindness and for some complete blindness.

None of us can possibly know if we will be unlucky enough to lose all sight, however it is a consideration.

I lost so much sight so quickly the thought of any further progression has been scary and something I choose not to think about it unless I have to.

At the beginning of the year I found myself in that position, through no fault of my own, where was I going with my life.

The profession I'd originally dreamt of was gone and now at 20 years old I needed to reconsider what I could do being deaf and already very blind.

Most would assume "Deafblind" what can she do?  Well, you'd be surprised at the things I can do!

I doubted myself a lot after diagnosis, always questioning the whys and how's.

The one thing that never changed was my parents determination to nurture and fight for me every step of the way even though they had to learn as we went.

We all need a chance to achieve what we can but how does that work when you are not given the tools to access what everybody else does?

I suffered a huge amount of discrimination through ignorance and it caused me so much distress and naturally I was "being silly or over dramatic", after all I was only going blind through my teens - "no big deal" accept it was a huge deal and terrifying - just imagine.

However, since I was 15 I have spoken publicly, initially to educate those around me of my support needs and over the past 5 years spoken in some amazing places about all sorts of things.

Life with Usher Syndrome is ever evolving, constant changes but luckily for me so too is technology.

There is always something to learn for me as much as everybody else, I just see things differently to others and how to adapt them because I have to and because I can and do.

I try to share positive and negative experiences and I'm delighted to see there is interest in my blogs and in Usher Syndrome and it's challenges from all around the world.

Also he world of technology who in many cases can hold the key to not just those with my condition accessing the world but for lots with disabilities and also the ageing population who can become isolated.

I know what it's like to feel different, to be bullied, to feel isolated, to have anxiety and depression, I know about denial, acceptance and counselling, I've experienced them all just because I have a condition that few understand, but, I understand and I use my bad experiences to advocate for others.

My path is definitely different, it's been made different through lack of accessibility, something else I'm passionate about.

I cannot highlight enough the difference technology makes to my life.

I'd just like those who need it most to be able to access it, it makes complete sense in every sense of the word.

Imagine being able to read, to write, to walk around safely, to join in, be an active part of society and then slowly these things are taken away as sight loss progresses but that you know of technology to enable you to continue with these things but you simply can't afford it - imagine that!