Man! I feel like a woman…!

A few years ago we went to Dubai for a holiday. Normally when I am on holiday with my family in a hotel I would not use my white cane because I have them to help me; guide me; and steer me when needed. But when we booked this holiday I was very conscious of not offending any cultural differences.  I was concerned that in a country where public displays of affection are not the norm that holding on to my wife or bumping into someone else’s wife (!) might cause offence so I decided to use my white cane all the time on holiday.

This wasn’t a problem to me and to be honest wherever I am with my cane these days I tend to forget about how it looks to others. Such a change from when I first used it when I could not think of anything else!  But using it all the time did teach me something which I was not expecting. It taught me, a little, of perhaps what it must be like to be discriminated against or ignored as a woman. The reason I say this is that wherever we went, the restaurants, the bars, the hotel breakfast or the pool, the staff spoke to my wife not me. If we needed to be seated they asked my wife. If there was a food order to be taken or wine to be poured they spoke to my wife. When we checked in they clocked the white cane and then spoke to my wife. 

This wasn’t an issue to me, my wife is perfectly capable of doing all these things, but it was a surprise and a change for me because, even in Britain in 2018, if you are a couple in a restaurant, or a hotel, staff still (wrongly) direct the initial conversation to the man. On this holiday people saw the cane and it was like I didn’t exist to speak to. I can hear all the ladies saying “welcome to our world!” Well I would respond that I get it more now! I know how that felt and, whilst not a problem for me in the circumstances of a one week holiday, I know it would become annoying it I had that treatment all the time…..


Glamping – unexpected freedom

That positive feeling you get from independence of action, that I have written about previously, can come from some unlikely places. The sort of thrill you can get from a quad bike ride or a kayak is fairly obvious but perhaps less obvious is a glamping holiday.

I have been meaning to write about a glamping holiday I went on near Hay-on-Wye, England for ages. It is now nearly three years since I went…

Now this isn’t a special glamping site for visually impaired people. It is just a normal glamping site set up in the hills above Hay-on-Wye. It is owned by Paul and Kesri and they have made a beautiful campsite on their small holding. When I went, there were six safari style glamping tents laid out to one side of the field, running in a row uphill from the farmhouse. This was not roughing it camping though. These are seriously well equipped tents with proper beds, wood burner, sofa, and kitchen. The showers are in a dedicated private bathroom (not shared) in the farmhouse buildings. It is the height of luxury camping and they really have thought of everything.  It is the perfect place to escape from the rush and stress of normal life and my daughters thought the place was amazing. The experience was further enhanced by the welcoming hospitality that Paul and Kesri showed so there were farm tours for the kids; BBQ and curry nights with the other guests; and an honesty bar with indoor area in case you wanted to escape to solid walls for a change.

So I suspect you may being thinking well this all sounds like a lovely place but this is not a travel blog so why is he telling us and what has it got to do with independence of action? Well completely inadvertently, in trying to think of everything to make the campers life easier and more comfortable, Paul and Kesri had actually created somewhere I felt safe to have independence of action at night. Being completely night blind that is a rare thing for me. Ours was the last tent up the hill but from there I could just make out the various dim lights of the farmhouse and the path lights at the bottom of the hill and I knew if I walked in a dead straight line down the hill I would hit the farmhouse and nothing else (apart from maybe a stray chicken). The layout of the field meant that there were no guide ropes to avoid or awkward routes to follow – it was a dead straight line with no obstacles, no steps, no knee height walls, no ditches – nothing. This meant in the evening I strode off happy in the knowledge of where I was going and how I was going to get there. This is not to say that I wouldn’t have coped if the layout had been different. I would have, and do when I go to other campsites, but being able to do it without really thinking without having to plan or use endless torches – to feel that ease of freedom – that was independence of action and that made the holiday feel that little bit more special.

Regardless of who you are I would thoroughly recommend Paul and Kesri’s place.

The importance of being independent

I have written before about the importance of having independence of action. In its simplest form I just mean the ability to do something yourself without help. This makes you feel independent. This makes you feel good. It is a sense of freedom.

Obviously for most adult people that sense of freedom; that independence of action; is normal in respect of day to day tasks and life. But I think people underestimate how much of a positive psychological effect the normality of that independence of action actually has on you, it is part of what makes us feel good.

One example of that feeling, that people might be able to relate to, is driving. Because of my deteriorating eyesight I had to give up driving when I was in my early twenties but I remember passing my test at 17 and the first time I drove on my own. That independence of action that driving gives you,the ability to go where you want when you want, that is freedom. I can remember the rush it gave me to have that freedom. The pure pleasure.

But like any high once you have had lots it becomes normal and the high is no longer so pronounced. So once you have had your own car for a while you forget that initial rush of freedom, and the independence, that having a car gives you and it just because normal. It is though still part of your positive psyche; a part of what makes you independent. If you are a driver just think about the last time your car broke down, or you left your car at home because you wanted to drink that evening, and you had to use public transport. I would put money on you not getting a rush from having to follow a timetable and only being able to travel at a time someone else dictates. So conversely, to the positive feeling that you get from having independence of action, there is undoubtedly a negative feeling from the lack of it. This is why people struggle so much when they get told they can no longer drive when they are older. That independence of action is brutally taken away and it has a massive effect on a person’s psyche.

Driving is just one example of this positivity that people get from independence of action but, as I have written elsewhere, for a visually impaired person it equally applies to much more seemingly mundane things such as being able to find the TV remote or find the toilets in the pub.

As a visually impaired person, the biggest rushes I get are probably from the more extreme situations when I get to control my movement at speed without fear of something going wrong (in other words crashing into something!). Much of a visually impaired person’s movement is done slowly, for obvious reasons, and often you are being controlled by the environment around you as you try to navigate it rather being free to go at will.  So, for me, opportunities to reverse that feeling, to move quickly and be in control, are rare and an immense pleasure to enjoy.

One example for me came about because I am lucky enough to have a brother who owns both a quad bike and a field. I am also lucky enough that he was prepared to take the risk of letting me drive his quad bike round the field. The theory was that it was a such large field, with nothing in it, so even with my very limited sight there was no harm that should come to me. For those watching me do it I know the reality was a little scarier than the theory but for me the thrill was immense. I could drive as fast as I wanted from one end of the field to the other end knowing that I wasn’t going to hit anything at all. The rush was like driving a car on your own for the first time. 

Another slightly more sedate example is my kayak. I take it out on a very wide, quiet(ish) river near where I live and, mostly, keep to the shallows so the chances of me hitting somebody, or something,is pretty slim (famous last words but I have not hit anything yet!).  I cannot paddle as fast as a quad bike but the theory of being in control of your own journey; that independence of action; that sense of freedom; is exactly the same.

Independent action is about the sense of freedom it gives you. That sense of freedom is like a drug, inducing wellbeing and positivity, it makes you feel good.

Sorry is the easiest word

I use a stick when on my own but try not too when I am with family or friends who know about my condition. In reality this is partly vanity on my part and I should probably just use it all the time. If only so people know I have some sort of visual impairment. Whilst I think I can pretend quite well (particularly in places that I know, or get to early and case out, and therefore have mapped out in my mind) I still get caught out by things in the wrong place or dark rooms where I have no idea where to go. People are then baffled when you fall over or freeze scanning the room urgently whilst your eyes adjust, so probably kinder just to highlight the issue to begin with then they know what they are dealing with!

One thing you seem to accept though as a visually impaired person is that you are always wrong. If you bump into someone it never occurs to you that they may have walked into you. You just automatically assume that you must be at fault. This was highlighted to me recently by a friend who watched me walk up the road and collide with someone coming from a side passage. I immediately went into profuse apologies as normal but when I reached my friend he asked why I had apologised because it was clearly the other guy’s fault. The reason was obviously twofold firstly I am British and that is what we do – we apologise profusely at bumping into people regardless of fault – and secondly because as a visually impaired person I always assume it is my fault.

Assumptions are interesting, and obviously dangerous, being often based on stereotypes or expectations rather than realities. When I am walking with my stick it is truly heartwarming how many complete strangers will go out their way to offer assistance. Are you ok? Can I help you cross the road? Or most common, well up north, – it’s safe to cross now mate. One gentleman even guided me round some roadworks in Birmingham which is just as well as it was pitch black and I had not noticed that the pavement was about to run out. The awful part was that when he first approached me I really was not sure his intentions were good. In my mind I wasn’t sure whether it was just a ruse to distract me whilst someone else took my wallet. A sad reflection on me and my assumptions!

You can’t assume you are always wrong, no more than you can assume that you are always right. Not all disabled people are nice and not all disabled people are honest. Not all able people are nice and not all able people are honest. But if we have to make any assumptions it should be that in a world where the media only tends to report the bad we should not forget to assume that most people are decent and honest, particularly when needed.

Luck…possibly a bit too political??

The question of luck is one I want to revisit. I am great believer in what you do with your luck is up to you. The world can give you opportunities but often it is up to you as to whether you use them. You have to get up and take them. But to ignore the role of luck in what opportunities you have is to ignore the whole lottery of life. If I was religious I would equate it to the concept of “there but for the grace of god go I”. Where you are born. To whom. And when. It’s life’s big lottery.

A well-known British millionaire is apparently quoted as saying “if you don’t like your job either change your job or change the way you are doing it”. On the surface reasonable words but actually not very realistic. People need to pay their bills. Not everyone has the luxury of changing their job or the way they do it. Financial necessity dictates the job and the terms on which it is done.

There is a risk when talking about making the most of opportunities that it becomes a rather self-satisfied and smug dialogue driven by already successful people.

I have never understood the sense of entitlement that some people have. The real belief that they are entitled to a certain role or life more than another person. Sadly it is a very British (or probably more correctly English) disease. A belief that somehow you are destined to be better placed than others. You weren’t. You aren’t. You got lucky.

What is critical though is that people have the same opportunities to grab. The concept of the “American Dream” was always a bit of a mystery to me. The Hollywood interpretation seemed to be saying that everyone could come to America and become a millionaire. Then I watched a TV programme about a citizenship ceremony in America. An immigrant was being interviewed about the ceremony he was about to go through. He was so animated and excited it was infectious. He was a true believer in the American Dream. But, to him, the American Dream was about having the opportunity to succeed. There was no guarantee that he would actually be successful. There is no entitlement to the dream itself but you are entitled to have the opportunity to achieve the dream. Ignoring any debate about whether that equal opportunity actually exists, that is an American Dream I can understand.

To bring it back to this blog and without getting too political. In the case of disabled people I do not believe that they are all entitled to achieve the same as able body people, that is up to the individual to achieve, but I do passionately believe that all disabled people, in fact all people, are entitled to the same opportunities.

Not something we have achieved…

The journey to the lows and back – Part 3

The final part of the journey is recalling, logically and rationally, how my glass is half full and how even having the opportunity to aim for any achievements, whether blind or not, is a privilege.

So how do I see the glass as half full when it comes to pulling back from a low moment.

Well this is all going to sound very cliched; pretty trite; slightly smug; and definitely nauseating. I only write it to complete the journey and in case, however unlikely, it might help someone else.

First though, I have to make a confession. I am a well educated, professionally trained, man living in Britain in 2018 with a job that, by any relative standards, rewards me well. I have loving family and friends. I am in a position of immense privilege. That makes any starting point of trying to see a glass as half full when life throws you a few punches considerably easier. My glass is already half full just from all that.

I could have been born in a different century, or in a different less wealthy country, in which case I would not have hearing aids; contact lenses; IT technology or any of the other medical and technological advancements that support my existence and lifestyle. I could have been born into a different century or country and discarded as a deaf and dumb idiot and then later a blind, deaf and dumb idiot. The history of Britain is littered with examples of the poor treatment and persecution that disabled people have faced. Some not that long ago. In other countries this still goes on today. To have lived in a less enlightened time or to live now in a less enlightened or poorer country would have inevitably have resulted in a very different life for me. I have had many opportunities which are not open to all people, disabled or otherwise. I could have been born into very different circumstances.

So I got dealt a bad card in my hand for the game of life. I have RP. I am already blind and will, in all likelihood, go totally blind. But when I look at the other cards I have been dealt it can still be a winning hand. You show me a person that has not been dealt one bad card in life. You show me a person who does not have a cross to carry. Everything is relative.

The punches in life can come thick and fast. You can get caught off balance occasionally. You can even feel anger and frustration at the bad card you have got. Sometimes I do. It is fine to feel that. You wouldn’t be human if you didn’t. Equally the fact that it could be worse (which is essentially part of my glass half full argument) cannot always immediately make you feel grateful for what you have got. It also depends massively on what you do actually have to be grateful about. (For example, people who say money doesn’t make you happy generally have money. Money helps you have opportunities. That is not materialistic that is just reality. Money may not guarantee happiness but it makes life a lot easier.) You cannot judge your world by walking in another less fortunate person’s shoes the whole time and seeing the world through their eyes. It is not realistic. Our immediate world; our immediate concerns; our personal challenges are the parameters that we use to reference our mental contentment or otherwise. But, for me, although it is always something deeply personal and relevant to my world and my parameters that initially triggers the bounce back, and although it will not work for all people, part of the process, part of that journey of climbing out up the slippery slope, is remembering that actually having to deal with the challenges that I face in the circumstances I face them is easier than it has ever been. I have the luxury of resetting my goals. That is something to be very grateful for. That is luck.

The journey to the lows and back – Part 2

To understand the journey you have to understand the punches that got me down in the first place.

1. I read an article about a man in his fifties with RP who had gone to bed one night with useful vision and had woken up the next morning without any useful vision. He had gone from tunnel vision to totally blind overnight. I think I was vaguely aware that this was technically a possibility but I had always assumed that I would lose it all more gradually. I had not prepared myself mentally, financially or practically for this outcome. But it was unlikely, wasn’t it?
2. Then I met a lady in her sixties who had RP. The exact same thing happened to her. She went to bed with some residual useful vision (still using a stick not a guide dog and reading with her eyes not braille or speech software) and woke up with basically nothing useful in the way of vision. She was inspiring in how little she had let it change her life but meeting her so quickly after reading about the same scenario with the man in his fifties did make me think. It made me think in a way I had not thought before;
3. Then my eyesight got considerably worse. Losing your sight because of RP is not a consistent process. There are periods of stability; periods of slow loss; and periods of rapid loss. For the last few years I have had periods of slow loss coupled with stable periods. I always knew that another period of rapid loss would come but that does not make it any easier when it does. Initially you notice it because you walk into walls or doors in your own home or office that you wouldn’t have before because you had a learnt a route but now that route doesn’t work anymore as you can’t see the markers you previously relied on. Then you realise that the extent of things you can see as a whole has got even smaller. An easy test I have always used with myself is my hand. If I spread my hand out on my desk in from of me and look down I can now choose to look at the top part of two fingers at a time. Or part of my thumb. I cannot look at part of a finger and my thumb at the same time. I used to be able to see the top part of three fingers at the same time;
4. Then I realised that I was not losing the vision in each eye at the same rate (another naïve assumption I had made). If I put my left hand on the side of my nose (palm flat with the side of my nose) I couldn’t see anything at all. Whereas if I did the same thing on my right eye I still had some vision down the side of my hand. The vison on my left side had reduced dramatically;
5. Finally I heard a very eminent and inspirational Paralympian with RP speak about his journey so far and found myself laughing with empathy and slight awe as he told his experiences only to have that moment when you realise that he is you. Not in the sense that I am a Paralympian athlete. Those that know me know that I would struggle to win a primary school sports day race let alone a Paralympian event. Nor do I mean that I could be the inspirational and “can do” man that he so clearly is in his life. I mean that this man in his early 60s standing up with his guide dog is going to be me.

Obviously I have always known that the Paralympian’s situation is where I am headed, in my 20s I was told by the doctors I would be there by the time I was 40 (I am now 42 so that was wrong), but because my mind was full of thoughts of losing my eyesight overnight, punches 1 and 2; and then a rapid period of sight loss, punches 3 and 4; punch 5 hit me in a way that it had never done before. It wasn’t the fact that I am already blind and going to be totally blind that caught me off guard. I know that. Okay it did wake me up to the fact that I was not preparing for the long term practicalities of the change as well as I probably could, but that was more of a “note to self” rather than a slippery slope to the low moment. No, it was the fact that the five punches together were the catalyst for me questioning myself that was the problem. My achievements. My goals. What did I want to achieve both before and after I lose all my sight? It made me question this in a far more fundamental and raw way than I had ever done before. A sort of bog standard mini midlife crisis but overlaid by the ticking clock of total blindness. It took me to a place of rather pathetic self-absorbed navel gazing.

As I write about it I can find myself disliking myself for being taken to that place. The sort of self-pitying woe that I have always found slightly contemptible. But that is the problem with the slippery slope. Once you are on it is hard to go anywhere but with it until you find the way back. Just saying pull yourself together and get on with it doesn’t always work. Well not for me. Not in this case. It sounds so ungrateful but I have to have a trigger that makes me realise again how lucky I am. I have always known how lucky I am but sometimes, however rational and direct you are with yourself, you momentarily lose the ability to believe that. It is not a nice mindset. It is the absolute epitome of selfishness and you have to hope you can turn it around again before life throws the next punch.

My trigger, this time, was attending my daughter’s parents evening at her secondary school. She had a slightly rocky start adjusting to the change of “big school” but that evening she was confident, quietly proud of her school, and at ease. It was a great feeling to see it, to see her resilience and achievements, and suddenly it was like a switch had been flipped in my head. I could see how unattractive and destructive the self-wallowing was again. I could start to climb back up that slope again. I could bounce back ready to set new goals and to take the punches again.

The journey to the lows and back – Part 1

So, it’s been a while; again.

I always seem to start writing again when I have a negative piece I want to get down. I guess this confirms that this blog is indeed some kind of therapy for me!

I have to be honest I have had a low point recently. Not off the scale dangerous low but difficult.

I have observed a number of people coping, or not, with low periods and I have concluded that to some degree how far you are pushed along the scale is luck. I don’t know if you had, or can picture, one of those inflatable children’s toys that is essentially a punch bag with a weighted bottom which you sit on the floor. You punch it and it falls back but then immediately bounces back up, often they are clowns grinning inanely, although I have a vague recollection of a policeman one (not sure punching a policeman was a great lesson to teach kids unless it was supposed to be some subliminal message that the law always wins…). If you hit it once it generally always bounces back. If you hit it quickly in succession you can get it to stay down for a while. If you absolutely smash it with a single knock out blow then you can knock it off balance completely. To me this is like life. Most of us can cope with the odd punch of bad news or pressure but give us a knockout blow with an overwhelming piece of bad news or a sustained volley of bad news and pressures then we all have our tipping point. If the same volley of bad news had been spread out over a longer period we would probably cope in our normal fashion but throw it at us all together it can become more difficult to avoid feeling a bit weary and knocked down.

I have written previously on this blog that one of the difficulties about having a degenerative condition is that it can be like a continuous grieving process. You can be grieving for the sight you have already lost, or dealt with it, only to find you have lost more and have to grieve again. This can make it a lonely process too because to the outside world little is changing. It is hard to suddenly talk about it as a “new issue” as however good your family and friends are, and I am lucky to say that both mine are very good, they are dealing with their own punches that life has thrown them, and often they are more immediate and visible punches, so to say “actually can we talk about me” just seems incredibly arrogant and self-centred. You don’t want to be one of those people that can turn any conversation into a conversation about themselves; they are the ones to avoid.

Much more relevant though, for me personally, is that I am not sure that talking about it would help. There is nothing to say. One of my grandfathers used to say that a boring person was one whom when asked “how are you?” actually told you. Not really a sensible attitude to other people’s problems but the reality is that most people are not that interested and don’t know what to say anyway. So generally I do not want to talk about it. There were quite a few moments during the last few months when I just wanted to press pause though. That would have helped. If you could put everything else in life on hold for a while, to give yourself a chance to process and deal, that would be amazing (possibly, or maybe it would just be more time to wallow?). But back in the real world, where most of us have obligations and responsibilities, you just have to present as good a front of yourself as you can and get your head around it again in your own time. Harshly, and very unfairly, this often translates as managing to present a relatively normal face to people you are not that close to or don’t know very well and relying on the fact that those people you are close to will forgive you for being a bit unhappy for a while whilst you find that way to bounce back.

Everybody has their own way of dealing with their low moments, it is a very personal thing and there is no right way, but for me I have to go on a journey and accept that life is now what it is but it is still a good life. It is always the same journey for me, and I have probably travelled it three or four times in the 20 plus years since I was diagnosed, so I do sometimes wonder why I can can’t just skip to the end and come to acceptance again. But it appears it doesn’t work that way. I have to do the journey.

Where is the remote….!?!?

I think I have always been a little bit OCD. But losing your peripheral vision, having tunnel vision, makes you OCD. You have no choice.

If I do not place my coffee mug in exactly the same place when I sit down to work at my desk, every day, then I will knock it over. I used to get cocky and think “oh it’s fine I’ll remember I put it on the mat by the phone. By the keyboard. Wherever”. I won’t. I didn’t. I don’t.

I will knock it over.

So every day I place my coffee mug on the window sill next to my desk. If I want a drink I lean over to the window sill and take a drink. Then I place it back.

On my desk the stapler is always in the same position. The same for the hole punch. The pens and so on. When they get moved by well meaning people or borrowed and returned differently I have to spend time rearranging it. If I don’t when I want to do something quickly later in the day I won’t be able to.

At home I have the same philosophy. The same obsession. It is not just that the tin of coffee goes on the first shelf in x cupboard. To me it is – it goes first on the right on the first shelf in x cupboard. Someone with full sight can scan the shelves in a second. If fact they probably don’t even scan. The whole shelf probably falls in their field of vision. To be honest I have forgotten what you can see in a normal field of vision! What one person can see in an instant becomes a five minutes scan to me.

To the right of the washing up sink in the top right hand corner of the draining board is the container with the washing up liquid in. If it is not there. If it is on the other side of the sink or worse. That is another five minutes scan.

Imagine standing in the middle of the lounge trying to find the TV remote but you have to look through a very very small letter box. You can only look at a small area straight ahead at any one time. Trust me it takes forever!

In that scan I feel frustration. Not at the person that moved the item I am looking for (people are not untidy out of malice it is just their nature; in fact logically it is not even being untidy, it’s just not needing to be OCD!). No, I feel frustration at the fact that I am not in control. If you find something exactly when you want it then that gives you control over your sight loss. If you stand there scanning like a headless chicken or feeling around then you are not in control. It is noticeable. People want to help. You have lost that control. That independence of action.

The glass is always half full…

Great quote:

Being happy doesn’t mean that everything is perfect, it means that you’ve decided to look beyond the imperfections.