Sight Loss and Struggles

First of, I just want to say, that whilst this post may be a little deep, and sound like Blind life is terrible being blind – it really isn’t, not all of the time anyway :-). Sure, we have bad blind days, but we also have good blind days – just like everyone else has good and bad days.

One thing I have consistently found that makes me feel better in myself is to write down my thoughts, get them out there.  his often gets them out of the way, and sometimes, whilst writing, some of the things make more sense to me, and I have a deeper understanding of why I Amy be feeling a particular way.  Also, if my ramblings help even just one other person who is going through sight loss, then thats great.

It is easy to forget whilst struggling with our sight loss journey that our sighted supporters (Family, Friends, loved ones etc) can have their own struggles coping with our sight loss too.  heir feelings are just as important as our own, and sometimes, they intertwine.  Communication is key – it isn’t always easy to communicate what you are feeling to your nearest and dearest, but to do so, can unburden each of some of the struggles they privately face and have to =fight on their own otherwise.  Helping each other is also to help oneself.

Sometimes, I feel on top of The World, thinking, YES, I have got through that battle – only to have the same battle return sometime later.  So, for me personally, these struggles are of a recurring nature, and can at times be pretty hard and I can become withdrawn as a result.  However, so far, I have managed to conquer them for another day.

Some of the most prevalent struggles, for me are

Lack of confidence

This is a big one for me, massive in fact.  It has taken me quite some time ( putting this in perspective, I was registered as partially sighted on 11th June 2018, and Severe Sight Impaired (Blind) on 10th April 2019 ) So, in reality, it is still fairly new for me, although, I often forget what it was like to be “normal”, to be able to see properly, I often feel like it has been like this forever.

So, I seems like it has taken me a long time to get any confidence since my diagnosis.  Before I was officially diagnosed, I should have seen ( pun intended! ) the warning signs.  Floaters in my eyes, not seeing as clearly as I used to when reading etc, tripping over things often and laughing when people commented how clumsy I was, enlarging everything on screen to around 72pt, generally just not seeing things as clearly as I used to.  But, I just thought, that was me, getting older, but all is good in The World.

At a routine annual eye screening appointment, they noticed that I wasn’t seeing as many letters on the chart, enough to send me to my GP for an urgent referral.  I kind of thought, well, I know I have a small cataract in my left eye ( Had one removed from the Right eye several years ago) so, it will just be that.  I quickly saw the GP, and he said that the difference in my vision warranted an urgent referral to an Ophthalmologist.  I said to the GP who I knew well, it will be ok though won’t it, I won’t loose my sight? smiling as I said it.  he GP said, well, thats why I want you to get seen urgently, hopefully, they may be able to identify what the problem is, and stop it from getting worse, or make it better – BUT, I think you need to know, there are no guarantees.

At this point, I was scared….  the rest is history …. I am now registered Blind.  I do have some vision – there is a huge misconception out there that you are either blind or you are not.  You can see or you cannot.  his is not the case AT ALL.  The vast majority of “Blind” people have some residual vision. My sight loss is total when it begins to get dark, but in good daylight, I can make out some shapes and movement, albeit in a very blurred way – can’t work out any detail, can’t see any colours.

So, back to lack of confidence.  It took me a long time to start to feel confidence in my new blind self.  I spoke to a support worker from Bradford Council over the telephone, and had a very long conversation with him.  I cried A LOT on the telephone, and subsequently when I met him for the first couple of sessions. I was scared silly, he kept talking about using a white cane.  I’m not that bad, said I.  Furthermore, you would never see me walking down the street with one, so, dont even go there.

Suffice to say, several months later, I had a white cane and was learning how to use it. This is where the lack of confidence stems from – the dreaded white cane, the “crip stick?, the “disabled label”, the “blind stick”.  So lovely isn’t it.  I hate the white cane ( I call my cane “Dingle” after Kane Dingle in Emmerdale!” I suppose because, he is the bad boy, but, in time, people can’t help but to love him, whilst loathing him at the same time.  BUT, whilst saying I hate it, it serves me well, and it allows me to do things on my own with minimal injury.  I was taught to think of the cane as a mobility aid and that by using it, people would know that I had a visual impairement, therefore being more forgiving about me perhaps bumping into them, tripping over things, and acting, to use my words, a little weird, sometimes. It also alerts them to the fact that sometimes I may need a little assistance. It took a while, but, yes I agree, it does alert people, and almost every time I go out in public with my white cane, at some point, someone will inevitably ask me if I am ok, or if I need some help.  I find that it excuses my blindness, for example, when I go into a coffee shop, I no longer trip over one of those “wet floor” yes;low floor signs or over a chair – the cane funds them before my feet do – therefore avoiding mishaps.  It also makes sense to the server and people in the queue beside me when they see me struggling to find the scanner to place my phone by to checkout – and by doing so, they assist me with this in a respectable manner.

My white cane also is a great help in Airports, it alerts staff to my visual impairment, and they help me through, and we actually call it my “speedy stick” when at the airport, because, we seem to whizz past people queueing for security etc and get to the plane in double quick time :-).  It helps me in train stations, and whilst waiting for a bus – the staff notice it, and therefore pay attention to my movements, and offer assistance – sometimes I accept it, and other times, I am fine and politely decline.

So, why dont I like using it?  What makes me have a lack of confidence with the white cane

he whole reason for my lack of confidence when out with the cane is people, the public.  98% of the time, I would say that people out in public are amazing, kind, helpful, and respectful.  Yes, they may stare at me, but hey… I can’t see them doing that 0- so, no big deal.  What IS a big deal is the 2% of people that have ZERO acceptance, respect or manners.  Rude people who say things to me like “why do you bother coming out when you are like that?  Wouldn’t you be better staying ion!?  People who park on the pavement and then, when I accidentally touch their car with my cane, shout, harass and threaten me.  People who purposely walk towards me, and at the very last second move, but they left it so late that they bang my arm – thinking I wasn’t really blind, and would move out of the way for them (his actually happens, when I have been out with my partner as a sighted guide, he has seen people almost barge into me, watching me walk towards them, and they continue walking towards me without attempting to move or worse, they watch me walking towards them, and instead of moving slightly out of the way, they stand there and let me walk into them.

People who walk into me and my cane, people who kick it out of the way, or jump over it half frightening me to death.  I have NO sadness about using the white cane, or any cares when. I am with my sighted guide partners s he does t care what people thing, so, in turn, I feel confident when I am out with him…but, on my own its a different story.

Communicating with people
I was always confident when interacting with others, never short of things to say.  However, when you can no longer see those visual cues , like a raised eyebrow, that knowing glance, seeing what someone is pointing at or trying to show you – normal, confident communication is hard.  You miss so much, and can often feel left out, when in actual fact, no one is intentionally leaving you out.  Eating out is another confidence issue, despite having the cane some restaurant staff will try give you a menu, hand you things, tell me when to stop with the. black pepper or parmesan etc.  Then other times , they will talk to your companion, what does he want, does he want this, does he want that.  So many examples.

I work hard at Building g up my confidence, and invariably, I manage it.  However, that ONE incident , that ONE rude, disrespectful person c an completely obliterate all fo that confidence in the blink of an eye.  I then find myself being a hermit for a week or more, trying to muster up the courage to go out of the house again.

It must be terrible for your sighted supporter to see you go through this, especially when they know how you were before blindness,  When they see you struggle, its hard for them to watch this change.

Increased loneliness

I personally didn’t used too have a problem with being on my own, I sometimes craved to have some alone time.  However, the loneliness now is on a whole new level.  Its a strange one though.  It comes in cycles, sometimes I’m fine, other times, not at all.  I often long for the moment when my partner comes  home from work, and often that is the only communication I have on a day to day bases when I can’t muster the motivation to get myself out of the house.

To combat the loneliness doesn’t necessarily need to be a big event.  I dont need to go out to dinner, I dont need to go on an adventure.  A visit to the local coffee shop is brilliant.  I used to be/am a real people;,e person.  I used to LOVE people watching, now its not so much people watching, but, listening to the conversations around me, building up an image in my mind of what they look like, what they do for work, what they do at home etc – totally fascinating.  But the sense of loneliness is often overwhelming, meaning I get stressed, feel sorry for myself, loose all motivation and self worth. I dont mean that I weep and wail all the time, I just feel so so lonely.  But people have their lives to live, and they have commitments that have to do on a daily basis.  My partner has to work etc.

Now, here’s the strange thing, and Im not sure that a lot of people will get this, as it seems crazy and so contradictory – but, sometimes, I feel so lonely, and people will say, hey, well, just ring me, text me and ill come pick you up and we can go do something, or have a long copiable chat on the telephone.  But, I feel so lonely, that I just don’t want to deal with people, don’t want to chat, don’t want to meet them etc.  That sounds really bad, and It doesn’t even make sense to me – but, thats how I feel when im at my loneliest.  It makes me feel bad that people want to make the effort for me to help, but I decline to accept it when I am so lonely.  Whats that old saying?  Theres nowt stranger than folk!  Its very true 🙂

Again, for the sighted supporters, it must be so hard for them to see the blind person going through this, and also difficult for them to comprehend or know what to do or to say.  Dont offer to go out with them, or suggest something, and they may think you dint care.  Suggest something, and be knocked back for suggesting it – between a rock and a hard place.

Fortunately, the bouts of loneliness seem to be and way, cyclic and so far it has remedied itself after a period of time.  So, to anyone who knows me, and makes offers to do things with me, or chat to me when im feeling lonely – dont feel bad if I avoid it, or decline your offer – its just the way I am feeling, and is no reflection on you, at all.  If I felt I needed /. wanted the company, or the chat, I would reach out for sure.  I would say, THE most important thing that a friend / sighted supporter of mine could do at times of my loneliness are to just be present ( which you are ) dont feel like you need to fix me, or suggest things to do to maker me feel better – being there is what matters the most

This is a real difficult one, and one where people could easily be offended – but, thats what loneliness does – to me anyway.

 

Felling like you’re a burden on people

I used to suffer from this feeling so so much.  Occasionally, I still do, but not so much these days.

I remember saying to my partner, when I lost my sight.  You know, I completely understand if you want to meet someone else, and go our separate ways, im not the person I was, and we won’t be able to do the same things we always have done before, and I will need help with this and that – so, im just giving you the “Get out” clause.  I won’t be upset, I will understand .  ( Of course I would have been upset, I would have been devastated – but, I just wanted to give him the option )

I think this all plays into the lack of confidence, the loneliness etc.  We are all a burden at some point in our lives, to a certain degree, but in. relationships/friendships we suck it up and “just do”.  I will often say to my son or my partner, if its easier for me to stay in the car instead of coming into the supermarket, thats ok, or if you want to go to such and such. place on your own, I dont mind.

I am super conscious, that doing anything with me, involves some kind of assistance, be that warning me of kerbs/obstacles, looking out for me, describing things to me, reading menus to me, etc so, I do think about it a lot before I ask someone to do something for me.  Sometimes I will be very belligerent and go out of my way to prove that I can do something on my own, it may take me longer, but quite often, I can find an alternative way to approach things and complete the task :-).  I try to compensate for the burden I am on people, but quite honestly, the people I have in my life seem to, so far, want to be there for me.  I am often told that it is a genuine offer of help, and that if they didn’t want to do something, they just wouldn’t offer.

I do like to give my family, friends and acquaintences some slack.  I think it is so important for the visually impaired person to realise that blind life isn’t just hard for them, its also extremely difficult for those close people around d you.  It has a massive impact on them as your supporter, and they have a steep learning curve too. I sometimes forget this, and get grumpy if someone who I think should know better says things like, look at that over there, or doesn’t describe something to me or what they are doing whilst with me, or if they forget to tell me there is a kerb, before I fall down it.  But, most times, I just laugh and have a good chuckle between us.

The worst time I feel like I am a burden is when we are on vacation for a week or two, or out for the day by ourselves, or with family and friends. I feel like I am taking away a lot of their enjoyment, as I am always in tow, this thing that they need to be aware of and help often.  I know when. we went out for a good night out drinking and partying, we would have a real good bitch about people around us or alert the other person to something by throwing a glance in a certain direction, raising our eyebrows or just smiling. that is all gone now, I dint see smiles, I dont see frowns, I dont see what people are doing, or wearing, or eating.  It must be exhausting for someone who is out with me having to be my eyes, having to almost “audio describe” whats happening around me.  That makes me very sad.

I am working on having more good blind days than bad blind days, and im getting there

Lets end on a happy note

  • After saying all of this, blind life isn’t all bad.
  • I still have lots of fun (often at my expense haha)
  • I still have lots of life to live, and I intend to do so.  Life certainly is NOT over, like I thought it was at the time of diagnosis – far from it.
  • If ever there was a good time to be blind it is now! there is so much help and support out there, and available technology makes a HUGE difference
  • I have amazing friends and family that I can rely on
  • The blind community is in the most part, AMAZING.  Check out YouTube , I have had so much help and inspiration on this journey from channels such as: Blind to Billionaire, Life after sight loss, Lucy Edwards, Molly Burke, Fashioneysta to name but a few
  • I have learned so much about myself ( and others )
  • I am so so excited at being g on the waiting list for a guide dog, and getting lots of my form er in dependance back because of that

 

If you have made it to then end of my blog, I hope it hasn’t depressed or bored you too much, and that maybe you got, as a sighted supporter some insight into blind life, or as a fellow visually impaired person, you got a glimmer of hope that Sight loss really isn’t the end, its just the beginning of the next chapter in your life

As always, lovely to have your comments and thought, questions or otherwise

5 Replies to “Sight Loss and Struggles”

  1. Omg Terry this is so heartfelt and makes so much sense you are a true inspiration and I have been so lucky to meet you xxx Keith and myself look forward to the next time x

    1. Thats lovely of you to say Helen. Thank you. It is from the heart, I think it would be inspirational if I had a choice haha. We are the lucky ones to meet you, it was lovely, and we also look forward to next time x x

  2. Hey Terry, it will be a hell of a lot better when you get your guide dog, I just know that there will be a bond between you that will help you with your confidence and also your loneliness.. I keep saying we must meet for lunch but we never get round to it, we must try harder, I will come and pick you up one day and we will have that lunch out, I will phone you one day but don’t be afraid to say no, I am. very hard to offend!!! Xxxx

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