RP Idylls

I’m looking for the mouse again.

Light flickers, patches come in and out of focus.

It disappears.

Has it gone off the edge of the screen?

Or is it in a blind spot?

Or has it changed shape?

Is it hiding behind a letter,

Pretending to be an I or an l?


Real mice too disappear

Under bags into holes

Into plain sight trembling, still

Lie dead in obvious places

Where I still don’t see


Lids and pips and pills and avocado stones

Fall into the holes in my vision


I’ve given up trying to track them by sound

Just tell the others

I’ve dropped a lid

Think it’s under that cupboard

It’s a lid

Not the end of the world


I can look through, ignore,

Or turn off the filter

See lights flashing

Dead patches

Edges and lack of edges

Be aware of just how much

My brain is making up


I wonder whether seeing the world

Differently

Predisposes blind people

To paint it


I leave the house wearing

Navy blue and black together

Unaware until I step into the sun

I used to be good at colours


Now I have to play yellow

Or get my kids to audio-describe

The board game’s intricate

Virtual world


I experiment with the dark,

Challenging myself to walk through the house

By feel and memory

Slowly sensing steps with my feet


I can set up the coffee machine

By feel alone

Quite efficiently

Almost more easily

Than when I look


A winter walk

Is defined by smell-scape

Different types of wood burning

Ash, apple, cherry?

Dark and bitter, salty, sweet

Pomegranate, dried kiwi

As hard to describe

As single-estate coffee.


Winter scents:

Jasmine

Overwhelming

Mahonia.

Leaf mould:

Rich, complex, disturbing

Rotting material in the ditch.


I carry my stick on walks

A third point of contact with the ground

That bit of extra information

About what’s coming next

Which means I don’t always

Have to look down.


The sunset is still there.

I need to stop to take it in.


Each time I leave

The covid-safe exit

At the rear of the Humanities building

I have to wait for my eyes to adjust

And shade them from the light

That confuses and obscures

The edges of the steps.


People watch in bemusement

As I feel my way to the edges

Of the steps and down

In my cycling gear.


With the bike lights on

And the streetlamps

I can see to cycle

At least on my normal route

If nothing changes.


I go slow

Stick to what I know


The sensation of speed

Still gives pleasure

Even if I feel like I’m flying

Into patchy clouds

Of invisibility


The gyroscopic effect

Of bike wheels going round

Connects me with the ground

The world going round


Here I am

Still reading writing thinking teaching

Caffeine-sharpened

But so tired.

So tired.

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Adventures in varifocals

I have recently joined the group ‘Retinitis Pigmentosa’ on Facebook and am taking a moment to reflect on my vision. I’m now 45, was diagnosed at 33 and lost my driving licence at 37. The children are now 16 and 13, and fine human beings (as well as pretty awesome musicians). I can hear the sounds of Assassins’ Creed Odyssey from next door, which Caroline is basically using as a horse-riding game, while Jonathan revises earnestly for his GCSEs.

My eyesight is constantly changing. I am now on my second pair of varifocals. The first pair lasted a year, but my right eye had changed enormously in that period. My left eye seems to be reasonably stable both in terms of RP and myopia/presbyopia. My right eye is changing all the time and is now much less short-sighted but very patchy. I’ve had some nasty shoulder/back issues arising from reading books or doing stuff on my phone without my glasses on and holding the book/phone far too close to my face for long periods of time.

Varifocals are a bit of a challenge but the new pair do allow me to read books again. I can also see the names of tube stations on the other side of the carriage, which I couldn’t do before. However, I’m getting quite a bit of double-vision, blurred vision, nausea and tiredness. I can read my music in band and see the conductor just by shifting my gaze upwards, but I have to be very careful how I angle my head and carry my own light around with me.

I’m still cycling, but I notice that I am increasingly reluctant to do so. It just feels very tiring, whereas walking is fine, although a bit slow and boring. Lugging the bike up and down station stairs is probably more off-putting than people darting in and out of my field of vision on cycle paths. I haven’t yet cycled into the canal.

I frequently fall over the dishwasher or oven doors when someone other than me leaves them open. I also bump into people when walking in crowded places, but not much more than I always have done.

I’m still working full time and workload is going up and up. I used to have a special arrangement to time-table my teaching into fewer days a week so that I could still look after my family in Cambridge while working in Nottingham. But the period I need to be available has gone up from two and a half days, to three days, to three and a half, to four, and now to five, and my husband has put his foot down. So I’ve asked to go part time.

For the last four years, I’ve done two and a half as Head of Department, which can be very stressful. I’ve seen likely effects of stress in IBS-like symptoms and back problems, burn-out and ADHD-like symptoms, where I can’t concentrate at all for more than about a minute or two. I’m now Chair of the Classics subject association, which is a new opportunity to help people and also a new challenge. I’m not really sure how I can go part time: I suppose it will take time and determination to reduce my commitments.

I’m currently on a year of research leave, writing a book on the cultural history of the Argonaut myth. Full-time research is hard on the eyes, because it’s a lot of computer work, but I’ve adopted a number of different tactics. The university gave me a Surface Pro computer, which can convert from laptop to tablet and back, and that is great for reading pdfs in a variety of positions, also for zooming in and out very easily. I have a monitor in my writing shed and my house in Nottingham, a kneeling chair and a standing desk to allow me to change my position as often as possible. I also do a lot of reading on the kindle: pdfs can be converted and old books downloaded in kindle format. I also use audiobooks for leisure reading, so preserving my eyes for work reading.

My husband has to do all the driving and I try to compensate by doing other things (food, shopping, washing, cleaning and tidying, organising) and I think we manage to split things reasonably fairly. When I’m away the children have to take responsibility for themselves quite a lot: cooking for each other, figuring out lifts to get to things. Broadly speaking I think this is good for them, though it probably also influences what they do. They more or less have to do the same activities as each other, so they can get to things, which means they both play in various bands, do Tang Soo Do (Korean martial art) and play tennis.

My daughter is now vegetarian and coming up with food we can all eat is a challenge. I’m tending that way myself too, and increasingly reluctant to fly or buy new things. I would like a more sustainable, simpler life. I am not good at seeing friends or family or organising holidays or days out. Mostly I stay at home in the writing shed, if I can.

So, in sum, I am very lucky. My eyes are not affecting my life that negatively, apart from the tiredness and nausea. I’m still doing an enormous amount (too much). Last year, as HoD, I discovered coffee, which I am enjoying very much, although that too can make my vision feel weird, hyper sharp and in your face. One of my missions for this year is to try and set myself up to survive the next few years. If I could go part time, that would allow me to spend more time with my family (and my cats) and finally do some more of the writing that is building up in my ideas book.

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SAD, CBT and RP

Every Autumn, about November, I start to get very sleepy. The urge to hibernate becomes almost irresistible. I don’t want to get out of bed, and I definitely don’t want to leave the house. Productivity has a tendency to go right down, and this is the time of year when getting up and down to Nottingham seems like an insurmountable challenge. This year I have been investigating Seasonal Affective Disorder: do I actually get depressed due to lack of light? I’ve experimented with light therapy, and also tried to adjust how I think about the seasons.

Evidence for the effectiveness of light therapy is pretty good, and the Cambridge University Library has just invested in a whole bunch of Lumie desklamps. They certainly provide a really good working light, and I think they do make me feel more alert and awake when I use them.

But apparently light therapy is not as good as Cognitive Behavioural Therapy for improving the symptoms of SAD in the long run. People forget to use it, or don’t use it enough. They go back to feeling down. So I started thinking about how I could *think differently* about winter in order to feel better during winter.

The most important thing I noticed is that my emotional reaction to the darkening days is uneven. I feel tense, anxious about using every minute of daylight, and angry with myself for wasting time during the days, but actually better, happier, more productive during the long evenings. I wonder if SAD has something to do with how we perceive time. During the day there is less time, during the nights there is more. Once I noticed this, I just needed to remind myself as I felt the day running out that there would be plenty of time after it got dark, and that most of the things can still get done then.

Another big contributing factor to SAD is the tendency not to go outside in winter. Even on dark days, it is much much lighter outside than inside. Also getting outside is crucial in the process of going to talk to people and do things. So the weather can be rather unattractive: but how often does it actually prevent us from doing things? It’s good in this context to remember the saying of many of my Swedish au pairs: ‘There is no such thing as bad weather, just bad clothing.’ With proper waterproofs and proper warm gloves, base layers etc, even cycling is doable in nearly all weather, let alone walking. If you are getting wet, or are likely to get wet, remember that you will be able to get dry again very soon.

It’s also worth remembering, if you live in the UK, that bad weather can happen at any time of year. So just because it is winter, it may well not be cold, and just because it is summer, it may well not be warm. So no need to be dispirited at the prospect of bad weather: bad weather and dark days are two separate phenomena.

I’ve also been reminding myself that there are lots of things I like doing in winter: sitting in front of a real fire (hasn’t been cold enough yet, sadly); watching films; snuggling up with a book; going to the pub; playing carols; baking; making christmas cards (or other things). There can be more time for doing these things because there is less time for doing outdoor activities.

I think the light therapy has helped. I’ve been using a daylight alarm clock for a while and that definitely helps make the morning less painful. I’ve bought a Brightspark for the kitchen and a Desklamp for the office, and I notice that my very sleepy down-time between 4 and 6pm can be greatly alleviated with a bit of extra bright light. It doesn’t really need to be a proper SAD lamp; any bright light will make it a bit better. But the proper SAD lamps are your best bet. Our new room has *lots* of windows: the more light the better. My OH has also discovered that you can get ribbons of LED lights at very reasonable prices that can easily light up hard to reach corners (shelves, cupboards, above curtains).

Here is where the RP comes into it: too much bright light is particularly tough on RP, so I’ve got to get the balance right between allowing my body to get the light it needs, and not tiring my eyes too much by trying to adjust to massive contrasts between dark and light. What the two conditions have in common, though, is a focus on lighting: get the lights right in your living and working spaces and it can really make a difference to your mood and concentration. I notice this now when I visit other people and can’t see a thing in their houses. If I turn up at your house wearing a head torch, don’t be offended!

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Still here

I’ve been reading through this blog today, and feeling quite surprised to see myself from a distance, as it were. I was really angry, wasn’t I? I am now working on processes of grief, and see that anger, often irrational and not at the things that cause the problems, is quite normal. So, er, sorry everyone. Especially Andrew.

It’s good that I don’t feel so angry any more. I’m still rumbling away, with my many inadequacies. Still taking on too much, rather disorganised, and not good at delegating. The kids are older now, so they can do more, but I watch both of them pick up rather unhealthy habits of thought from me, and cringe. Just now talking to Caroline in the bath about not beating herself up about getting 7 out of 10 in a test.

Still cycling, still taking the lutein, still working (currently on research leave), still playing the tenor horn (!). Still haven’t applied for a bus pass. Not much point now because there are no buses into the village any more. 75 stops in Harlton and 18 stops in Kingston, both of which are only a 10 min cycle (or half an hour walk on roads without pavements) away, but for some reason it just seems easier to cycle in now. Still waiting for the builders to finish the current set of building works on our house (maybe tomorrow?).

Some differences: I have cut off my hair, gone greyer. I think I am better at acceptance than I was. I have accepted that lighting is enormously important to me, print out my papers in large fonts, or speak from powerpoint. I have even started listening to audio books (big advantage: you can do it while cooking and washing up, or folding washing). I’ve started asking for electronic copies of PhD theses and books for refereeing. I don’t run ten minutes late any more; when you live by advance booking train tickets, you can’t afford to do that. Now I run ten minutes early. I sort of miss the comfort of being slightly late.

I think the time may have come to declare a disability at work. I’m not sure what my limiting factor is, precisely, vision or concentration, but think it highly likely that the two are linked. Either way, I can only keep going productively for about four hours a day at screen-based work. Teaching is actually good, because it gives me a genuine reason to be tired, and means I’m doing something other than staring at a computer.

But my kids are still beautiful, even if one of them is nearly a teenager now, and I can still see the landscape, go to the opera and walk.

I just went in to say good night to them. It was totally dark in Jonathan’s room, and quiet. I tiptoed across to the bed, hoping not to fall over anything. ‘Good night, Jonny. Are you asleep?’ Silence. I lean over the bed, trying to make him out, thinking perhaps I’ll give him a really soft and silent kiss. Head erupts from bed. ‘Hell yeah!’ Yup. My son is a teenager. At least he still has a sense of humour.

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Assessing progress

Finally, some six months later, the nice lady at the low vision clinic called me back to look at the results of my visual field test and ask how I was doing. I cycled out to Addenbrookes in a relatively cheerful manner, and felt less of a fraud for doing so: there is a no man’s land between driving and walking, in which cycling is acceptable. I know what my risks are and can compensate: this doesn’t mean that I’m not entitled to talk to the hospital about what is happening.

Anyway, the good news is that the visual field test didn’t show nearly as much deterioration as I was expecting. My right eye has lost a lot of sight at the top and the right hand side, but my left eye is really not bad at all. Not much sign of deterioration in the central parts of the visual field. Either my lutein supplements are making a difference, or it’s just not getting worse that fast.

I know RP is a discontinuous sort of disease, like MS, so that deterioration in the past is no guide to deterioration in the future, but nevertheless I feel mildly cheered. Perhaps I’ll keep going for years yet, like this; maybe they’ll even figure out gene therapy before I go blind. (I notice they’ve now come up with a way of injecting carrier viruses into the retina in order to deliver genetic material into the visual receptors.)

I’ve become quite used to my life without a car and to taking it all into account. I’ve learnt to look forward to cycling to the station, to appreciate a good chunk of exercise, and if I’m feeling knackered to get a taxi and not stress about it. I’ve learnt to adjust font size, screen position, zoom, light in order to read without turning my eyes into glowing coals, and I’ve started to read again. I think I may have learnt to use my left eye more than I did: at least, I’m not noticing that crawling blank spot in the middle of my right eye nearly so much. I’ve booked a holiday within walking distance of the beach and faced up to coping with the kids on the train (better than the car, in fact, since Caroline gets car sick). I’ve learnt to sit quietly amongst the commuters, the small strategic places where I can stash a bag, how not to make eye contact or be pestered. I haven’t had a wibble about needing a particular item of groceries *now* for quite a long time, and I’ve found a good web-site for buying Japanese rice crackers.

Some things are still strange: I go shopping so irregularly now that I find Tesco confusing and overwhelming like a fairground on fireworks night. I still find my husband’s electric car eerie. He seems better adjusted too: he picks me up once a week, accepts that he’s the one who can never drink at parties, takes Caroline to her 9am Saturday tennis sessions with hardly any complaints.

The academic year is nearly over and I am not nearly as grumpy as I was last year. There are still problems, difficulties, uncertainties: will we get enough students next year? How can we possibly fill forty hours of lectures for the Independent Second Year Project? (Should we rename it the Second Year Project?) I have been away more than I used to be: three or even four nights a week instead of two. But there is a sort of productive peace in Nottingham and I don’t feel desolate at being on my own there.

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The spaces in between

[I wrote this in February but didn’t get round to posting it.]

Here I am on the train back from Nottingham, and my eyes are hurting again. Now I’m sure that simply working for too long is what makes my eyes hurt. I suppose I’ll need to limit my computer work to things that are absolutely necessary, and only read what I have to. There is sadness in this: I used to spend all my time reading. Audio books, screen readers. I suppose I did plug away at stuff more or less continuously on Wednesday from 9am until 8pm. Perhaps I could try structuring in more breaks, planning further ahead what I need to prepare by when. And I still have the online shopping to do before I go to bed tonight.

I am taking a course in mindfulness and it is helping me to learn acceptance. I am learning to appreciate being in the spaces in between, rather than always wishing the journey was over. On bad days, everything I do feels like a chore, something I have to get through, before… before what? Before I can go to sleep.

Now I am snatching time for breathing exercises and finding myself better able to cope with delving into the innards of the broken photocopier, or the next stage of whatever has to be done. This is life: each stage leading one into the other. The train is my home, my little room in Beeston is my home, even the Pumpkin cafe in Leicester, complete with long-suffering till-lady being shouted at by her co-worker, is my home.

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Spring and death

Spring and death

I haven’t written for a while, perhaps because I spent so much energy trying to make some progress last semester in facing up to RP that I had just sort of run out of it by the time it came to this semester. I seem to have struck a better balance this semester and got through seven weeks of teaching without my eyes hurting. This may have something to do with the fact that my phone battery is on the blink so I can’t check facebook on the tiny blackberry screen, because as soon as I do, it crashes.

In some good news, I am enjoying talking to our new au pair, who has some problems with her hearing (born without one ear canal), so we can empathise with each other about the imperfections of our bodies and the limitations and social difficulties they can cause.

But worth remembering how much worse it could all be: there seem to be quite a few friends of friends with cancer at the moment. A bad time of year, I think. As I marched back from the bus stop the following was going through my head, and I thought here was as good a place as any to share it:

Soracte without the mountains

Rooks picking twigs in the snow

undeterred by the cold,

birds pouring song from their throats

with a liberal hand

in the face of winter’s stubborn grip,

blossom coming anyway,

daffodils spiking tall;

me walking home as the sun sets

slowly behind the trees.

Spring is the time for death.

Spring is the time for facing death

and never giving in.

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Having a wibble

Every now and again my practice of acceptance cracks a bit. There was a memorable weekend when I was overtaken by a terrible craving for Japanese rice crackers. I knew they sold them at the garage in Barton, but that is a 20 minute cycle along a major road, and at that point I didn’t feel confident enough to do it. My husband couldn’t understand why it mattered to me that I couldn’t just drive and pick up the rice crackers. ‘Why don’t you just order some in the next online shop?’ Well, because Tesco don’t sell the sort of rice crackers I wanted to eat. And they were on special in the garage. And I wanted them now. I had to have a bit of a cry and then let the idea of rice crackers go.

Now I am anally retentive about keeping stores of everything that we eat, and re-ordering whenever supplies run low. Even so I still had to send Andrew out for eggs in order to make the cakes I had promised the children once: I was relying on the fact that some people in the village sell their eggs, but on that day I cycled around the village and there were no eggs out for sale. That time I had a good cry, and Andrew finally caved in and drove to the garage and bought some.

This time Caroline has been invited to a talent day for tennis on Weds after school at the Hills Road Tennis centre. Andrew is working; our au pair isn’t comfortable driving in town in the dark, or to new places; there are no buses that I can find which wouldn’t involve a very substantial walk for Caroline, which is not so great when she then has to play tennis for an hour and a half; last time I got a taxi the price had gone up from £16.50 to £22.50. Now Caroline may or may not be talented at tennis; she’d like to go and see. But do we want to pay £45 to do so? My transport needs are pretty much sorted, but as soon as I have to take the children it gets much more difficult. What if Caroline might have been the next Andy Murray (but female, obvs), and it didn’t happen just because I couldn’t drive?

All the different possible permutations are going round and round in my head and it is very difficult to concentrate as I worry away at the problem and think of potential solutions. How much does any of it matter in the end? Perhaps it would be better if I just stayed in bed.

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Things to do when I’m blind

It’s easy to see that as my sight disappears, I’ll have to stop doing things. I may quickly become unable to clean effectively, look after other people, and at some point I’ll have to stop working. This might free up time for a lot of other things, which I currently don’t have time to do. Here is a list of the ones I have thought of so far:

1. Write a great national epic (cf. Homer and  Milton).

2. Bring my speaking and listening skills up to the standard of my reading, starting with Italian, French and German, and moving on to Latin and Greek.

3. Learn to play the Goldberg Variations, and other exciting things, on the piano, by ear.

4. Take up some other musical instruments. I’m making a start on the tenor horn, but I quite fancy trying the violin.

4. Talk to my friends and family.

5. Walk from John O’Groats to Lands End (cf. George Jones). [He had only a pinprick of sight left when he did this. Pretty impressive.]

6. Campaign enthusiastically for e.g. more rural bus services, world peace.

7. Practise my wine tasting skills. And whisky. Etc.

8. Get really good at yoga. Meditate.

9. Learn to like dogs.

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Visual field test

Another step towards answering my question of how much my sight is deteriorating. I trekked off to Addenbrookes again, cycling the now familiar route from the faculty, and finding that I could get a bus directly home at 12.15, much to my surprise. As ever, the lights flashed and my eyes flashed and it was hard to tell which were the real ones. Unlike previous times I was aware that I saw pretty much nothing from the periphery. The sense of just grasping some at the edge was not there: just the ones squarely in the middle. I guess it is getting worse quite fast.

I still don’t know, of course, because I need to wait for someone to go through the results with me. They will go to Lynette and hopefully she will sort something out.

Maybe I just have PMT, but today I feel quite alone. Generally I like to be independent and self-sufficient, but sometimes it would be nice to have someone to hold my hand.

Of course, I’m not alone: I have the kids to look after, and not make depressed. I have the cat. I have Andrew when he turns up, and is not yet asleep. I have Nanna the au pair, and other Nanna, the au pair’s friend, who is visiting for a week. I have between one and six builders depending on the stage of the project. I have all the parents and other children at Haslingfield school. I have my sister and parents in the West country; my colleagues in Nottingham; my facebook friends all over the world.

But it’s just me peering out from behind the lace of nothingness.

On the plus side, it was a pretty gorgeous day today, and not many kids ate the parkin I made for bun day, so I can eat it.

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