My inequality challenge – losing my eyesight and healthcare

I thought long and hard about which inequality challenge I wanted to do. I realised that for me and my children the thing that would have changed our lives most would be if we had no access to healthcare to treat a genetic eye condition we were all born with. The kids have had surgery on their eyes and I wear special contact lens. 

So my Inequality challenge is to go without the benefits of healthcare for a week from the 1st-8th April; no contact lens and no medicines like pain killers. The only exception will be if I need to wear my lens for a task at work so that I can do my job but my lens will stay at work!

So what will this mean?

– No driving obviously and no cycling either – my sight is not good enough so I will be walking, taking public transport or taking lifts.
– No computer so no emails (other than work), no TV, theatre or films.
– No social media except a daily update on the impact of the challenge.
– No reading and no writing……. (gulp).

Feeling a little nervous about how much impact this will be and whether I have overlooked anything…..

I would love you to support me in this challenge: 
– You could get inspired and join in with your own inequality challenge 
– You could log into and take part in our worldwide debate with street connected children in Jinja (comment any time but live this Thursday 27th April 12-2 UK time)
– You could buy a monthly lottery ticket for £3. You will be entered into a monthly draw with the possibility of winning £100!

Day 0:

I sit entranced watching the drama unfold on the stage tonight.  Noticing every tiny detail and the expression on each actor’s face.  As they take their final bow I realise that this is the last thing that I will see in detail for the next week. When I take my lenses out tonight then the world will become a blur and remain so for the next week – game on – let the inequality challenge begin!

Since agreeing to take on a health inequality challenge for a week I have started to get very nervous about how hard this will be.  For the last thirty years I have worn special contact lens every single day since I suffer from an eye condition which is not corrected by glasses.  Everyone has warned me that I am likely to get headaches but no paracetamol for me for the next week.

I choose this week because it looked relatively quiet – without driving or cycling travelling is going to be more time consuming and complicated.  But even in the last day or two I have realised that things are not going to be straight forward.  My elderly parents decided at the last minute to come and stay – lots to organise for their visit.   A meeting scheduled for 9 tomorrow has moved from a very convenient mile away to the other side of the city due to a bereavement.  I have sorted out a lift both for myself and a friend I normally give lifts to but at lunchtime today I was asked to lead the meeting – not sure how confident I feel when I won’t have the usual visual clues from the people attending.  Why am I choosing to do this – wouldn’t it be simpler just to put my lenses  in rather than spending ages trying to work out how to make it all happen.

Even before the challenge starts I feel the pressure that without being able to drive I am not in control – my choices are much more limited – what if my lift over sleeps……..

I have tried to let everyone know since reading emails is going to be tricky.  Before turning the light off I realise that on my IPad I can enlarge the print and if I hold the keyboard about 2 inches from my nose I can squint at emails so hopefully nothing critical will get left undone this week.

Nothing more to be done but to sleep and see what challenges  tomorrow brings

Day 1:

Normally I jump in my car – leaving plenty of time to get to the meeting I am leading this morning.  No sign of my lift at the allotted time and beginning to feel stressed that I am dependent on someone else’s time keeping.  Fortunately 2 minutes later they pull up so all is well.  I realise that it will be very hard to read out a passage for the meeting but fortunately persuade someone else to do that for me.

Later in the meeting I pretend to read something off a flip chart page but can actually only see the capital letter clearly and am doing it from memory – all good until I forget what the final B is for and have to move close to see the rest of the word Bookstall.  Realise writing is easier than reading although notice that in the part where we all write down ideas centrally that my writing is twice the size of everyone else’s – presumably so I can actually read it!

The rest of the day passes smoothly – ordering at the cafe is more tricky but a quick squint helps me to find something I can read and am happy to eat.  Much quicker than my usual scanning of the entire menu!

Preparing food has been easier than I thought until I come to chopping veg and apples for dinner.  I realise I am operating at half my usual speed to ensure I retain all 10 fingers intact.  Hard to estimate distances accurately.  I am getting used to seeing everything in soft focus and missing lots of things that other people have seen but actually not been as hard as I imagined although do feel incredibly tired.  Just think everything is taking much more effort.  Almost broke  a plate today when I missed the plate rack and it rolled out of the cupboard and did chip a favourite mug.  Thought about posting photos but hard to take since can’t show what I can’t see!  No TV for me – so off to bed early.  Good night!

Day 2:

Feel like I have failed today but am planning to continue the challenge anyway. I had to make a hard decision as to what was most important today and so chose to wear my lenses for 2 hours. My elderly father drove up from London on Friday but was taken ill yesterday. After lots of thinking I made the decision to drive him and his car back home to London so he could see a doctor who is familiar with his cancer treatment. It seemed more Important to get him home quickly and with as little stress as possible than to keep to the challenge. And that I realise is the real inequality – that I still have choices. I could have got him a taxi or persuaded a friend to drive him home because even without my sight I still have money and a community of friends to fall back on. Before I started I had made the decision to give up if my long term health would be compromised by not having healthcare. I hadn’t considered the possible implications for others and don’t feel it is fair to let my dad suffer.

As soon as the journey finished I took my lenses out. When I inserted my lenses the world seemed to be brighter and more clearly defined than usual – like changing to a high definition telly! But when I took them out everything seemed very blurred. Very quickly my head started to ache – my brain seems to be struggling to adjust to the switch. As the day wore on I felt extremely weary – the concentration required to see things is exhausting!

I was the welcomer for church this afternoon. Needed to concentrate hard so I could greet people by name. Only got caught out once by a floppy fringed young man who I mistakenly addressed as someone else!

Spent the evening working on a newsletter article for work – at 500% magnification I had no trouble editing it!

Have remembered that I need to be up early to walk to work so need to get to bed before I fall asleep at my keyboard.

Day 3:

The challenge moves up a notch today since I am in work and therefore going solo without my supportive family and friends. I have left triple the time I usually need to cycle the 2 miles to work since I am walking today! It is a beautiful day – sun is shining and I hear the birds singing maybe because I am not able to focus on what is going on around me. Only aware of blanking one person who I don’t recognise until they are almost past me – maybe there were other friends that I missed who probably think I am very self absorbed or rude.

Enjoy the walk to work but it takes a good 5 minutes longer than planned and already running a few minutes late when I leave. Finding things in my house takes much longer – no quick scan of the room to see if I left my shoes there or my diary but a concentrated hunt. Am meeting a new employee but fortunately we arrive at the front door together so don’t feel late for my first meeting – even though I am. Start the day with a new employee briefing – quite good since can do this from memory and is half an hour less at my computer. Also add in a tour of the building to find some of the maintenance jobs that need doing – can manage this big scale stuff more easily. At the end of the meeting I sit down at my computer – bit daunting since not sure how easy it will be – I have allowed an extra hour each day to make up for any slowing down and haven’t said a lot to work colleagues – want to see if I can maintain a professional composure even if I can’t see much. Also learnt from yesterday that wearing my lenses for a short period leads to an awful headache so am hoping I can mange…

I realise that in an inequality scenario I wouldn’t have a computer and be able to work at 500% magnification but by doing this and moving my screen right up to my keyboard I am managing – being able to touch type and watching for the red line produced by spell checker helps me to maintain a reasonable rate of work. The only tricky thing is writing up notes from an interview I did last week – my handwriting is not great at speed and the squiggles are hard to decipher without holding the paper about two inches from my nose. Only one person comments on the unusual working arrangements – but I do have back ache at the end of the day – not sure this set up passes the Visual Display Screen regs so glad that Health & Safety checks were last week!

Otherwise the day is uneventful as is the walk home. I am feeling very tired so resort to a “ready meal” – can’t face wielding a knife to prepare veg and there is no one else in. Am missing unwinding with something on TV but friends suggest a walk instead which is great till they try to show me something in the Estate Agents window – need 20/20 vision to buy a house!

So glad to have got through the day without my lenses and without a headache. Slightly amazed at just how quickly I have adapted to this new level of vision. I realise that this is because for most things I am relying on memory instead – only when I go somewhere new do I feel very disconnected and almost fearful and concerned that people will think me strange. Have decided to make up the time I missed on Sunday morning and see if I can do the train journey to a SALVE trustee meeting in London on Saturday – but will take my lenses with me – just in case!

Day 4

Umm not a lot more to report. 1 close encounter with a bike – I turned a corner only to be nearly run down. My lack of vision meant I apologised profusely before realising that actually I was on the pavement and they had just been going much too fast. Continued on my journey a little more cautiously…..

Lots to get done before the boss is back but have got into a routine now. if anything making the tea is the hardest part – haven’t got good at judging quite where the boiling water is up to in the cup so have created a flood or two in the tea room and seem to slop my drink much more as I walk back to my desk – so lots of cleaning up for me.

Day passes uneventfully – walk, work, walk home. Am grateful to have avoided the rain this afternoon! Arrive home but don’t feel like spending hours in the kitchen so cook bacon and eggs – just amazed at how much longer everything takes. Feeling oh so tired so jump in the bath – no vision needed her and straight to bed with the radio. Not missing attaching television because just too tired to notice.

Day 5

So glad that I have the day off today – but spend the first hour trying to work out the best way to get to places. Have struggled with housework this week – not sure hoovering has been very effective since can’t really see the dirt and dusting seems even more pointless so glad that we have a cleaner who will get everything ship shape again. I do need to go shopping though. Normally I jump in my car and drive off to the enormous supermarket three miles away and toy with getting the bus there but finally decide that we will make do with what the local express shops have. Take two bags with me so I can share the load out and walk down the road – it takes me two trips and 3 shops to find all that I need. Well to find the minimum amount anyway since walking round unfamiliar shops looking for specific items is the most frustrating thing I have attempted all week. There seems to be no logic in what is stacked together and I physically have to scan every tin and packet to identify things. Make lots of substitutions when I find something that will do – glad I am not trying a limited budget challenge at the same time since failed miserably. Never find the salad dressing and can’t get a selection of dips for a social tonight. I never thought about what the local shops would stock when I said I would bring veg and dips – everywhere I turn there seem to be a million Easter eggs and come remarkably close to knocking down a display with my basket. Decide that self scanning might be a bridge too far today and wait patiently for the single cashier. It has taken me twice as long to buy approximately half of my normal shop! Not a single assistant asked if I needed help although clearly I did!

Get home just in time for a quick lunch since it will take me three times as long to get to my nutrition/exercise class this afternoon. I choose it based on the timing since I don’t work on a Wednesday without a thought that it is 6-7 miles away – just 20 minutes by car. Fortunately one of the people lives on my route so only have to walk three miles and then get a lift for the rest of the journey. Feel like I have already done my exercise since have not left enough time so speed walk to get there and arrive exhausted. The information at the start is fascinating but can not read a word on the flip chart. Exercises are fine although struggle to read the signs on some of the stations so get corrected more times than normal!

The friend offers to drive me all the way home after the class but feel that isn’t really in the spirit of the challenge so she drops me off with 2 miles still to go. I am very aware that even though I have only known the people in the class for a couple of weeks that everyone is very happy to help me out. I almost have to fight to get to walk for this and the social in the evening. Once again even when doing an Inequality challenge the scales are tipped in my favour because of my social currency – friends and even new acquaintances are really happy to help me out because of who I am. I reflect this in the newsletter article that I am writing for work – it is this social currency that means that I am very unlikely to ever find myself homeless. Even if the worst came to the worst there are always friends and family who would help me out – provide a bed or a sofa or loan me money in an emergency. I have learnt in my job that the sort of bad luck that can lead to homelessness could happen to any of us but those with a community of family or friends have the resources to weather the storms of life!

I take a more scenic way home since it is a beautifully sunny afternoon and reflect that this would have been a different challenge in the rain or sleet. I see a footpath that I have never followed before that is signposted to take me past some local shops where I might get the elusive salad dressing so follow that route. I cannot believe how beautiful the path is – only a mile or so from home but I have never walked it – it follows a small stream and runs past a field of horses. Having lived close to the centre of Cambridge for over 15 years I have never known about this beautiful area running behind houses on a poorly signposted track.

I arrive home feeling relaxed but tired – I have now walked about 15 km according to my phone and done 45 minutes of unrecorded exercise! I slowly and carefully chop the veg for the dips and work out a way to transport everything. I have arranged another lift but first have a 3 km walk to a friend’s house so that they are not going out of their way. A very pleasant but slightly disconnected evening follows – I feel like I am struggling to keep up with the conversation because I miss the visual clues that we are all used to following and struggle to work out when to join the conversation. At the end of the evening my friend drives past their house to run me home – by this point I am too tired to argue so save myself having to do the last walk of the day. This has been the most challenging day both in terms of steps walked – my phone has registered 20,000 and arrangements to get to places. I have spent 4 hours doing journey that would have taken me under an hour normally. On the plus side I loved the stroll home and have enjoyed the beautiful weather and I must be getting fitter!

Day 6

Work again today – need to be early since organising a training course. I ache today but set out in good time for my 2 miles to work. The good weather is holding – I can’t quite believe how lucky I have been. I arrive in good time but the trainer has still beaten me there. I take her down and set up the room whilst she plugs in her laptop. There is no way I can see to enter the password but at the last minute remember that I have it written in my file so am able to pass it over to her. She starts to flick through the slides and I realise that this is the point that I would not be able to take part with out my lenses. I released that thee might be something at work that I couldn’t do and slip out and put my lenses in for the first time at work so that I can benefit from the training.

As soon as it finishes I take my lenses out and then pay the price as my brain struggles to cope with the new fuzziness. I take a few minutes to get some lunch and allow my brain to adjust before settling down to tackling the mountain of emails. If I had not needed to get the job done that day I would have been tempted to go home but instead plough on and try not to be grumpy at a number of small requests. One of my colleagues sees that I am very busy and makes me a cup of tea – thanks Barry – you were a lifesaver – I needed that and could not face messing with boiling water.

As I walk home I hear the strains of an ice-cream van and start to feel very hungry. Am very pleased that in my shopping the previous day I did pick up a ready meal so no cooking for me tonight.

Very relieved that there is just one day left to go and I have nothing I have to do except prepare a meal for a guest who is coming over to work on their CV. Realise that this final task might be quite challenging but have mastered some cheats like “send the document over so I can look at it”. They are probably aware of the challenge (unlike my work colleagues) so should be ok if I have to squint at the document.

Day 7

The finishing tape is in sight – slow to get out of bed and realise just how exhausting the week has been – everything has required more organising, more physical effort and been more stressful because I have been so much less independent. I will tell them at work next week what I have done – wonder if people did pick up more than I realised?

Painfully slow to write this blog – lots of typos and corrections needed but so glad that my touch typing is pretty accurate!

I have missed my bike but not my car so much – only once would that have been useful. Haven’t missed the TV or watching films at all but realise that I would miss reading and love the occasional visit to the theatre – probably my favourite ways to unwind at the end of a busy week.

Most of all I have missed my independence and being able to help others by offering lifts, dropping off food or meeting them for coffee. Not being able to drive has been limiting although I realise that I should walk more – you see so much more of your local community.

I haven’t managed a week without healthcare, I haven’t used any drugs but haven’t managed to do all that is expected of me without using my lenses. Much of my week has involved walking and there is a degree of irony in that since I am only able to walk today because I received amazing healthcare when I was seriously ill 25 years ago. I spent almost a year in a wheel chair and learning to walk again. Without that healthcare this week would have looked very different – in fact my whole life (if I was still alive) would be very different.

I have learnt a lot both about myself and about the impact of Inequality. Start to think about what I will do for the challenge next year and about how what I have learned will impact me longer term. I realise that the biggest inequality of all is that I have choices – not choices that I earned but because of who I am, where I was born and my supportive community of friends and family. Will finish the week feeling very privilidged and very honoured that through being part of the S.A.L.V.E. family I can help in some small way to give back to others who do not have the same advantages.

Thank you for reading to the end – this week I have realised just how much I take for granted the ability to see!

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