Alex Elle: “I’m thankful for my struggle because without it I wouldn’t have stumbled across my strength.”

I have addressed the isolation I experience because of Usher Syndrome on many occasions, how isolation can impact on my mental health and every day life.

Helen Keller described DeafBlindness “Blindness seperates people from things; deafness seperates people from people.”  I would imagine many now being asked to work from home, self isolate or social distancing because of Covid19 are feeling a level of isolation they have not experienced before and finding it difficult and it absolutely is. 

My condition is progressive and whilst described as DeafBlindness the add-ons are often as challenging. 

The isolation I sometimes feel makes me feel depressed and anxious, often claustrophobic, fortunately it doesn’t last but there are often no tell tale signs, no rhyme nor reason as to why and when it triggers itself!

I have experienced this since my early teens which coincides with my Usher Syndrome diagnosis!  Thankfully I have learnt to manage it, however it isn’t always easy.  I have accepted these feelings are all part of the person I am and I have accepted that it really is ok to not be okay.

I have been observing my own Dad who as those who know him will confirm a healthy, happy and chatty person.  His work takes him out and about in his car, he visits his clients in their homes, coffee shops, hotels and occasionally his office.  He attends conferences, seminars and meetings all over the UK.  He cycles daily, he plays squash, loves his sport and above all he loves people, he’s old school! 

I have helped him advise all clients he will, until further notice be available by telephone, skype, FaceTime, email or text for obvious reasons and thank goodness he is still able to get on but he is struggling not having the usual interaction with people.  For him this has certainly been a time to reflect on how fortunate he is that usually nothing holds him back and also to have more of an understanding as to how difficult and challenging life can be for those who are regularly isolated through no fault of their own! 

This whole coronavirus outbreak has made me feel very anxious, also very sad that lots of my work travelling has had to be postponed or cancelled, that I am unable to meet with my clients or colleagues, however it has also made me feel incredibly fortunate that I can and often do work remotely thanks to access to the accessible tools I have access to, the internet, accessible apps and websites.   It has also made me very aware of just how much needs to be done to make online fully accessible.  It also demonstrates how those organisations who have and regularly address accessibility are now in the best position as more and more people have to go into isolation and rely on online services!

It shouldn’t be that a pandemic influences organisations to do the right thing in making online and online services more accessible but that accessibility and inclusion be priority all the time. 

I feel the anxiety of the nation but it has been quite an eye opener (excuse the pun) not only my own father but so many others who ordinarily have no accessibility restrictions no longer able to go about their daily business and are struggling.  I’m hopeful these difficult times will be a time for us all to reflect and think outside the box, that it brings out the better in people, a new understanding and empathy for others who don’t have a choice, isolated by various disabilities or conditions.

I have spoken to my Grandad on the phone, thankful my ReSound LiNXQuattro allow this, wouldn’t be a blog without mentioning him!  He is 80 years old and in that vulnerable group, he lives 200 miles from me.  Grandad was something of a technophobe, however, I have dragged him into the world of technology and told him to keep his iPad and iPhone fully charged and to make FaceTime calls to us all because we want to see him, not just to check he is well but to make sure he doesn’t feel isolated. 

My grandad always checks in on me, now the tables have turned, we all have to try to do the same at this difficult time.

Technology is keeping me connected to work, to my clients and colleagues and big thanks to my family who are keeping me as positive as I can be, I am well.

Jerry Springer always said “Take care of yourself and each other.” 

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..