Logistics and Isolation.

One of the other biggest challenges I face is not being able to drive and needing support when we do get there. We live and work in a place where public transport is pretty much useless for most journeys. Taxis are expensive. We have recently moved into the local town where things are a bit better, it’s taken 10 years of saving up for us to be able to afford this move, but we have finally managed it and life is much improved for many things, but we are still limited to what we can walk to.

We find it so hard when there is something going on that we cannot get to because of my inability to drive. When you know that groups of your friends are going to something, each arriving with spare seats in cars, but there is no offer of lifts or attempt to help you get there and be included. The feeling of isolation is much magnified by knowing your family is excluded because of your lack of sight and inability to drive. Social media doesn’t help with this feeling of isolation either, when you see and hear about all the wonderful things you could be doing with your friends if only you could just bung your kids in the car and head off to join them.

I’ve had some really big knocks to my confidence over the years, especially when it comes to asking friends for lifts and hoping that we can be included. One person I asked for a lift said to me “you know, you are going to have to make your own friends, you can’t keep asking me!” I’ve had someone pull up to drop me off and when I said thank you, she said “well, don’t think I’m going to make a habit of it”. This kind of thing has happened quite a number of times, so, although people often say, “you should just ask!” there are some good reasons why I fill up with dread at the thought.

There are some wonderfully good people, who will do what they can to include us and help us get to things, but they are few and far between. Life is so hectic for some many, I know it’s not easy for people to fit in just one more thing. People don’t like to commit to doing things and if they’ve offered me a lift they feel more committed to going.

I can remember as a teenager my sisters and I being distributed between our mum’s friends cars as they are rallied around to help us get to things and be included. These days people are so busy and so independent, it would be difficult to achieve that level of coordination.

Including us is also more challenging, because if we do manage to get somewhere we need a bit of sighted help. That makes asking even more difficult.

The inability to get to things has a knock on effect on friendships. Because you can’t get to things you don’t get the opportunity to develop friendships and so don’t get invited to other things that is going on, such as birthday parties or special events.

So, when you combine the challenges of getting to a social event with the challenges of not being able to recognise friends, read or use facial expressions or body language and cope with the constant pain and discomfort that my eyes give me, it’s an absolute miracle we ever get anywhere.

But we have to try, because I want my kids to grow up knowing how to socialise, get on with people and also how to try for themselves to overcome all of these challenges.

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Alexa…

Alexa (Amazon Echo) and similar devices, have really changed the lives of visually impaired people. For me it’s the audible management of the family shopping list that has made such a difference. I’ve tried so many different workaround to managing a shopping list, but this is so simple and easy to add things to and recall from without the need to use sight.

We were crying with laughter! Watching Question Time while sitting in bed and asked Alexa…

“Alexa turn off the bedroom lights”. I don’t know what she heard, but it must have been from question time on the TV! Her reply was “No, the Conservative Party are not a breed of dog!”

Big Decisions…

Hospital visit has presented a very big decision to make on behalf of our little boy. Surgery always presents such risks, but such amazing potential…

I have to say, we have so much to be thankful for. The NHS might be on its knees, but I have to say, hand on heart that every single individual within the NHS is doing their absolute best for those they are treating, at all times. There are times when I just want to hug them all and show them all just how much they are appreciated for what they do.

Dobble trouble….

Yeah, playing Dobble with lots of visually impaired people is hilarious! Mostly my fully sighted boy wins…

“Mum… I keep telling you, it’s sunglasses, not a black bra!”

Image shows Dobble cards, one with black, apparently, sunglasses, but I keep getting into trouble…

Recognising the Issues

Imagine if you will, entering a room where there are lots of your friends, lot of acquaintances, lots of people who know you. Some say hello, there’s lots of talking, lots of hubbub, lots of noise. You make your way through the crowd and greet those you know with a happy, warm smile, which is returned with equal warmth. You catch the eye of those in the distance and acknowledge them, affirming your relationship. You see a group of your close friends and make a b-line for them. As you approach, they turn to greet you and you join them happily chatting. This happens often, at work, in the playground, at parties, at church. Any situation where you encounter people.

Now rewind, go back to the door. You enter the same room, with the same people but you have a white cane and very little sight. They all know who you are, but you can’t see enough to recognise them. Some say Hello, but are gone before you get a chance to say “I’m sorry, I can’t see who you are”

You’re fairly sure there are some of your close friends in the room, but you can’t see them, you wouldn’t see them, and would only recognise them if they actually spoke to you and you knew them well enough to know their voice.

Someone comes and talks to you. They’ve assumed you know who they are and they talk amiably. You desperately try to either engineer a break in the conversation to ask them who they are, or steer the conversation to try and get a clue. You desperately hope they start talking about their family or a situation that will give away who they are. Many people say this happens to them occasionally, but for me it’s every time someone talks to me unless they tell me who they are. You still haven’t found those familiar voices, those who would tell you who they are and are understanding towards you and the unidentified person keeps talking.

Eventually the person talking to you stops and goes away and you never managed to work out who it was.

There has been times when I’ve tried to say to people “I’m sorry, but I can’t see enough to recognise you” and they’ve got all offended or embarrassed and I’ve then seen them much less since. Some remember to tell me who they are, and I really, really appreciate it. Some find it amusing to make me guess who they are, which I find so embarrassing, because all I want to know is who they are so we can get on with a conversation. Those who are fully sighted get that information through their eyes, I just need it through my ears instead, that’s all.

I would say, hand on heart, my inability to recognise people and their non-verbal communication is probably the one thing I find most isolating. I never get those affirmations that distant body language and facial expression bring. People talk about a smile making someone’s day, well my day has never been made by a smile. I often feel that people judge me by my lack of response to their attempts to communicate with me non-verbally. I’ve had people say to me “I smiled at you and you just ignored me!” Well, yes, I am stood here with a white cane!

My inability to recognise my friends inhibits me from choosing who I speak to, from developing that acquaintanceship into a friendship. I try very hard to reach out to people, but if I can’t see them in a crowd then I can’t choose to go speak with them and if they don’t come to me the our friendship cannot develop.

My attempts to overcome this feeling of isolation is to invite people into my home and try to communicate with them in other ways, like little messages, emails, on social media, but that too has its challenges, because it’s hard to get tone of voice or meaning into written language. I am a friendly, warm and kind person, a real people person, and I think that’s possibly why I find this all so hard, so frustrating and so, so isolating.

Inside work it’s called ‘networking’, outside of work it’s called ‘socialising’. What ever you call it, it’s extremely difficult when you can’t see much. Possibly one of my biggest challenges.

A little bit of background…

I’m starting this blog to try and share some of the trials and tribulations of being a busy, working mum of 4 awesome, but lively boys when you have less than 10% sight and 3 of them with the same eye condition.

Life can be hectic, frustrating, extremely isolating, and just unbelievably challenging, sometimes to the point of tears.

I have various reactions when I try to explain about our lack of sight and how it impacts us. I’m hoping to try and bring about some awareness and share some of the amusing things we get up to.

We were all born blind and needed lots of surgery to get us what little sight we have. In recent years I’ve had lots of problems, more surgery and lost more sight. Our lack of sight affects every single aspect of life and there are so many things which are difficult to put into words, such as my inability to understand and use facial expression. I try to use them and may occasionally use natural reflexes, I can sometimes be seen as using facial expressions, but I cannot learn facial expressions in the same way a fully sighted person can, equally, I cannot see them in others. People often say to me that I look like I’m not happy or I’m sulking, but my facial expressions are rarely an expression of how I’m feeling. My eyes are so painful and uncomfortable, my facial expressions are usually just me trying to find a comfortable position for my eyes.