Tag Archive for blindness

Loosing Control or rather Rethinking that Control

Loosing control is just two words, saying them is the easy part; actually allowing myself to do them is a whole other story.

Control can mean many things to many people; for me control it is organising, planning and reducing the opportunity for me to feel ‘out of control’ in a situation, because when it comes to my sight and hearing loss I don’t have any control.

It is why I have been known to walk a virtual route of a new area with the help of Google Maps and Google Streetview. It is also how I can appear confident and independent; When actually most of the time I am neither, I am just simply prepared.

And for the most part, this tactic works.

Then……. Then I do something I never expected to feel out of control with and so ensued a moment of vulnerability. (Or rather a good 10 minutes) and I find myself overrun by emotion.

What was I doing? I hear you ask.

I was out for a bike ride on my tandem, something I have done many times before, in an area that I know incredibly well. Which maybe is why it hit me so hard.

We were on a cycle path, not the main road, yet as we approached a set of traffic lights the turn felt wrong, so I tried to stop it, which anyone who has ever been on the back of a tandem will tell you is damn near impossible!

So we wobbled, my feet came off of the pedals as did my pilots and although we didn’t come off the bike completely it could easily be classed as a ‘Near Miss’

Hence my upset and emotion.

Thankfully my pilot knows me well and in the middle of this simply said:

You’re in control of what you get to enjoy and feel relaxed about. You control the route we take, I’ll help with the rest.

We do all this as a team. I’ll brake, change gears and steer, I’ll keep us safe.

The worst part of it for me was that because I had panicked, because I had lost control, my pilot could have got hurt and when I said this mid snotty-sob he simply replied:

But I didn’t…. WE had it covered.

Which made me realise that as a team…. We did.

Because of my lack of sight and hearing, it only goes to follow that my balance and perspective is greatly altered. It was this that had sent me into my moment of panic. And from that point on, on the ride I simply listen to my pilot, pedalled harder on the up-hill and let the bike coast on the down-hill. All while trying to enjoy the view.

And now, back with both feet firmly on the ground I can reflect. And realise that this was an inevitable, because I needed to accept that being on a tandem IS a team effort, No matter how good my sight, even I wouldn’t be able to do it on my own. So rather than look at it as a ‘byproduct’ of my disability it is time for me to rethink cycling. Cycling is something I CAN do; I just CHOOSE to do it a part of a team.

After all, the benefit of being on a tandem is that you are only 50% responsible for getting up those steep hills!

Myth Bust: This blind girl CAN shop!

Today I had a very rough encounter with a shop assistant. A very quizzical, judgemental encounter….. But rather than be negative, this got me thinking; unless you have a visual impairment or live within close proximity to someone who does, this may be a common misconception that anyone of my readers may also hold.

So here in a series of blogs I am going to look at busting some myths and misconceptions. Now as my blog is all about me (selfish I know!) what I write here works for me and is my point of view. Sight loss has a MAHOOSIVE variant in the many that it affects, so what works for me may not work for another. After all VIs (Visually Impaired) are unique Human beings with their own individual characteristics.

I personally love to shop! Muse through rails of clothes, feeling the different texture. I find some shops easier than others, I also have my staple ‘go to’ shops for my essentials.

When I trained with my guide dog (both of them) it was explained to me about how a dog works in certain environments. How a dog works in a supermarket for example is different to how they work in a clothes shop. And most of this is down to how we as humans move around in said shops.

Mostly because of how the shops themselves lay out their stock. A supermarket is quite regimented, with aisles and shelving. Where as clothes shops work with rails, displays and a more ‘hap-hazard’ movable approach.

So, when in a clothes shop I do not ‘work’ my guide dog Fizz. By this I mean I do not hold her harness handle and ask her to guide me around….. Manly because we wouldn’t get past the first row of clothes as the space between rails isn’t wide enough for Fizz to work properly!

So once inside a clothes store I will simply hold her lead, I will keep her on my left hand side and I will use my right hand to feel my way around the store, feeling out mostly for the ends of rails that could cause me issues if I bump them.

The stores I frequent regularly are used to me and Fizz, they even know that at times she will just lay down if I am spending too long looking at a section! After all she is a dog; she has no need or interest in clothes!

But when we go into a different shop (which doesn’t happen often) the other shoppers (as today) and the staff appear amazed by it.

Today’s encounter saw me being asked to leave. And this was because the store assistant believed that I was not VI and that my guide dog was just a pet. (Despite her harness and all her ‘uniform’ stating she is just that)

The store assistant had watched me move around, touching the clothes, but that my dog was just walking behind me. I did explain the main reason for this was because the space between the clothes was only just big enough for me to walk in, let alone Fizz to walk beside me.

I explained how I am trained with Fizz and how dropping harness means she doesn’t have to be responsible for trying to navigate in such an unnavigable space. To which the store assistant became very interested and was then asking questions out of interest not judgement.

Another point to make is that clothes shopping isn’t a rushed affair (not for me anyway) So I take my time, I can focus using what little sight I have left on navigating my way around. It’s not ideal and at times it doesn’t always work. But it is making the best of the situation.

For me, I prefer to shop alone for clothes, not be rushed or concerned with someone else getting bored or fed up with me. So this is how I work around it. It’s a quirk and it is following my guide dog training; which means I can’t be the only person who does this.

After all VIs shop, VIs go out alone and VIs above all else, have their own minds.

Personally I would not consider going clothes shopping using my long cane. As most clothes are hung on rails a cane could alert me to the floor being clear, but won’t alert me to the tops hanging from a rail (if the lighting isn’t right for me to see) And for this reason I do understand why some VIs prefer to shop with others.

So, I hope you have enjoyed this Mythe bust? Feel free to comment below on this subject or other myths you may have questions about.

You can be blind and see true beauty

Today a friend asked me a simple question.

why did you say I looked beautiful when I know you can’t see me?

My reply

because true beauty isn’t seen, it’s felt.

It got me thinking though, I quite often tell my girlfriends they are beautiful, gorgeous and pretty; either in person or commenting on Facebook or instagram.  Have they all thought I was ‘just saying it to be nice’ ?

Facebook and instegram afford me the ability to REALLY look at my friends.  By zooming in or magnifying their photographs (which now also makes me sound like a stalker!) I can sit and looking at them, take my time to move around each photograph. (Which now really makes me sound like a crazed stalker! I’m not – but then that is the first thing a stalker WOULD say)

I am not lying when I say they are beautiful, I say they are beautiful because I don’t need to see them, I know them, I know how beautiful they are as a whole person.  They are my friends for many different reasons, they all give away both verbal and non-verbal cues to their beauty.

So, it is a true compliment when I call you beautiful or gorgeous.  It isn’t a lie, it isn’t an empty gesture or  out of habit.

It is the truth.

it also means that my friends have loan of a ‘blind perk’ – they can turn up at my door with no make up on, with a massive boil on the end of their nose and because of what as a blind person I see……. I will still see them as beautiful and gorgeous.

So, next time I pay you a compliment.  Accept it.  For I do truly mean it.

Would you flip a coin on it?

This is a much more personal and private post.  One that I have thought of writing for some time, yet not found the courage to put it into words.  This is true, raw emotion.  Please comment if you wish.

Sight loss, hearing loss, illness, disability; all of these can affect your mental health and mood.

I have battled with depression for many many years.  It isn’t (for me) something that is fixed by medication.  In addition to being a trained counsellor myself, i have undertaken many various forms of therapy; from CBT to mindfulness and many in between.  Depression isn’t easily or quickly fixed.  It often takes many ‘trial and error’ theories, after all as a human, I am in my own way unique.

My sight is degenerative, and in recent months I discovered that my hearing is also digenerative. This by its nature means that I have not as yet come to terms with it.  With the world around me ever changing (because of how I can see and hear it). I find many of the new challenges upsetting and difficult to deal with.

In very recent months I have found this particularly hard.

I found myself thinking and analysing everything much more.  This found me in a very low, downward spiral.  A spiral that I could find no way out of.

This was compounded from my current therapy sessions I have been undertaking with iTalk.  By looking at many of my demons up close and personally, I found it all too much.

I found myself alone, not able to approach my friends.  Not able to ask for help.  I found myself bursting into tears at ANYTHING. I couldn’t eat without being ill, I couldn’t drink coffee without being sick.  I couldn’t see a way to carry on.

A question Doctors and counsellors ask,

Do you feel like hurting yourself or that you would be better off dead?

I could answer this, my answer was always “No.” not because I was lying to them, but because it wasn’t the right question.  Had they asked:

Do you think everyone would be better without you?

They would have got a completely different answer.

I felt that I was just someone who was in everyone’s way, someone they pitied, someone they ‘put up with’ but not as someone who would be missed if I was no longer here.

I never sat down and thought of it as dying, committing suicide or harming myself.  I thought of it instead as improving others lives.  By not being here they could all get on with living, my children wouldn’t have to worry about me, they wouldn’t have to ‘miss out’ on doing fun things, because I am not able to drive, or run around with a ball.  They would also no longer have to cope with going between me and their dads.  Especially Lawrence, who seems to be particularly sensitive and worried about saying something that may upset me.

That they would be much happier not having to help a disabled mum.

I thought my best friend would be happier too.  Instead of having me bother him with texts and emails, he could live his life, enjoy his children and make a future for himself without me being like a noose around his neck.  Someone he felt obligated to ‘put up with’, someone who had made the mistake of being nice too at a difficult time and getting stuck with.

Without me, he could be happy.  Me not being here would be one less stress for him in his already stressful life.  And I felt similarly about other friendships.  I don’t have any family, they have already told me how they don’t want me.   So I thought I would be making the best decision, I thought I had decided that it was best for everyone if I just  wasn’t here anymore.

I shut myself off, I lied to friends who asked “how are you?’

I kept putting things off, I didn’t walk the dogs, I didn’t do the housework, I didn’t write in my bullet journal.

I did however call Samaritans.

I apologised for wasting their time, I spend just under 3 hours on the phone to a woman who said her name was Beth, she asked me about my family, my home, my children.  We talked for a long time and I can’t remember most of it.  I remember there were lots of tears, lots of apologies from me (anyone who knows me well will tell you how good I am at saying sorry-when actually I don’t need to)

Speaking with Beth, I found myself feeling I ‘needed’ to go to my counselling appointment in the morning.

For each counselling appointment I am asked to complete an online questionnaire.  And for the first time in about 10 days.  When I arrived at my appointment, my counsellor asked me about my questionnaire answers and scores.

She asked me WHY?

And then she did something I never thought I would ever hear, it is most definitely not something I came across in my counselling training  (although, I haven’t yet completed my degree level)

She asked me to score on a level of 1 to 10 how much I wanted to ‘not be around anymore..

My answer was 6.

She asked me how I thought about doing it?

I didn’t know that bit, although rationally I told her I didn’t want someone who knew me to find me, I told her I wanted it to be a doctor or nurse, or someone else who has been trained to see dead people.

She asked me if my children would understand?

No, they wouldn’t understand.  But after the initial upset, they would grow up with their families and be happy without me.

And then, she said this:

You say that you are over half certain that people would be better off without you here? So lets flip for it.  Heads you end your life and Tails you carry on.  Shall we do that? Leave it to the flip of a coin?

In my head I was thinking ” Are you wanting me to do this?’ But what I said, was even a shock to me,

NO! You don’t decide this on the flip of a coin.  That is just stupid, deciding on something so final and leaving it to chance.

She then abruptly changed the subject and asked me what I found relaxing.  And we spoke no more of it.  We didn’t need to, because even though the conversation had been upsetting, the reality of my thought hit me as if i had walked into a lamppost.

Focussing on relaxation and choosing a list to pick at least one thing off each day, made for a much more enjoyable week.  I also had my charity climb to do.  I still couldn’t keep much of my food in, but I had made sure I drank plenty.  And although scared and feeling I was a failure, the climb was not just an event I HAD TO DO, it was the ultimate metaphor….. THE ONLY WAY I COULD GO AND UP I WENT.

It was exhausting, I struggled and feel that even though I did complete it, that I let my friends down, that I failed and that even though I did my best and gave my all, that actually it wasn’t enough (but that’s for another time)

I returned to my counsellor again after the climb, again completing an online questionnaire before going.  And this time my counsellor commented on the reduction of my scores and improvements.

My counsellor asked me to recap on what had happened in our previous session, she asked me what had changed?

So, I told her, I told her how I initially thought the previous week that she had actually been trying convince me that I should end my life, but that when I had calmed down, when I had thought about it and when I had relayed some of it (I couldn’t face telling her all) to my friend, that I had actually realised what the purpose of the direct questioning had been.

My counsellor confirmed that she too had reflected with her supervisor on our session, and how she had been able to tell that although I was upset that this form of directness was actually making me think.  She was never mocking me, or thinking me stupid.  She was simply facilitating me to think.

She also explained that had I answered differently to the question of flipping a coin, that she would have instantly notified her supervisor.  Putting in place several safe guarding options. This is something she had told me about in our very first session, as she had explained that both her safety and my safety were key.

In addition to seeing my counsellor, I have been on half weekly visits to my GP.  I explained my session to her, to which she was impressed and felt that she would take that back to her fellow doctors.

Suicide and the thought of harming yourself or wanting to ‘stop getting in other peoples way’ is not an easy conversation to have, it was not easy for me to admit these thoughts, this feeling, it is not ‘crying wolf’ It is a serious emotional and mental health issue.  One that you should not ever apologise for having, it is not ‘stupid’ it is not ‘weak’ it is simply that you cant see a way forward.

You don’t need to apologise for hounding your Doctor, for calling the Samaritans, turning up at your local A and E Department if you can’t think of anywhere else to turn or even calling for an ambulance.

There are plenty of people who want to help.

And help you they will.







There is no witty title for this one, no sarcasm and no humour; I am without.

This is one of those few blogs where I just open my heart up.

This weekend has been full of emotion.  It was a weekend that had been planned to be fun, full of laughter and enjoyment with my daughter, my best friend and his son; thankfully they appeared to enjoy it, although maybe by the end of the time away my upset began to show.

It would appear; if only to me that by hearing less I am actually not able to see as much either!

My sight has not changed by any great degree, but when I find myself struggling to hear in a situation, I also find seeing more of a struggle too.

Maybe it is because I am not getting the sound clues that I rely so heavily on to fill in the gaps that I miss with my vision.  Maybe it is totally in my head (as some have suggested)

All I know, is that which ever it is.  It has completely thrown my idea of the world upside down and has left me feeling RAW and unable to cope.

I have cried, I have screamed and I have hidden it all from my daughter.  She doesn’t understand, mostly because I am not sure that I even do.

How do you explain RAW to a child?

And if you do know, can you please explain it to me ?

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