I am going to celebrate the wonderful friends I have made since being diagnosed.
It’s almost seven years now, and seems like an age ago. Like everyone else, I had no idea that there could be a growing community of people living with dementia who were going to disrupt the established rules and behaviours around the disease.
Why was I unaware? Because no one in the establishment knew…or cared to find out. Because they did things how they did them. And after diagnosis there was really no hope.
They gave each of us a riskerectomy and told us to prepare for death.
But then, well, somehow, by chance, I found out about a ‘conference’ meet up in Llandudno, where I met some of the most wonderful people in my life. No names; they know who they are.
Actually, one name. Chris Roberts. It really was him that lured me into his den of friendship and disruption. And the DEEP network.
From that weekend flowed my stream of activity, meandering wherever it took me. London, Manchester, Birmingham, Sheffield, Cardiff, Nottingham. Every event brought a few of us together for a shared day or two. We often wound up near/in a Wetherspoon. Or a pizza restaurant. Remember that amazing tenor, Damian, drowning us all with his beautiful voice in Doncaster?
Conferences, training events, consultations, planning days. Speaking truth to the establishment, hoping to influence change. Often telling others starting their journeys what is possible, encouraging, mentoring…leading.
But we met only occasionally, and often by chance.
Our networks expanded. More people living with dementia became involved in the work. We shared the load, broadened our backgrounds and skills, developed trust and togetherness.
Then came Covid. All our travel and meetings stopped. Abruptly.
And thus erupted…ZOOM.
For a year many of us have had weekly zoom meetings. Chats, jokes, catch ups, sad moments.
We’ve done serious work on research and ethics, dementia pioneer projects, dementia diaries, and craftivism.
We’ve helped each other, led creative craft sessions, made films.
We’ve shared our blogs about our own lives and our work together.
Above all this though, we have grown wonderful friendships. We look forward to the sessions that mark our weeks. And God we have fun. Stupidities (and crudités) that might never happen face to face in a busy day.
We have sorted out into groups that mix well…naturally. Some leave, some join…just like any other friendship group system in normal times.
We have missed our families, and our hugs…Oh our HUGS. We’ll have to hire a secret venue in the summer so we can just hug, unseen. (20 seconds for trust…remember.)
When days are miserable, or pain is unbearable; when loneliness hurts and there seems no point…we can look into our diaries and…there…next Monday…there’s the next Monday Madness, or Tuesday Tonics. A DEEP group facilitators meeting, or the dementia diarists.
There’s always some crafting that we can do, painting or carving or taking fabulous photographs of barn owls or teal. The moon wins for popularity just now.
There’s the allotment or garden. The lanes and hedgerows. The park.
But as evening draws in, and for many a long sleepless night, we can always remember the next meeting to look forward to.
That, my friends, is what the last year has given me. Your friendship and trust and fun.
The old activism has been squeezed from my arteries, as my world has closed in.
The desire and drive to make change happen and to address unfairness have diluted, and I more and more watch from a distance.
Meetings and conversations used to trigger thoughts and reflections, and blogs.
Now, listening to the radio’s many really interesting programmes lead me to write from time to time.
But I just looked at the Pathways young onset dementia facebook page. I saw that many of my dementia friends use it, or are mentioned there. I find Facebook very hard to use. With only occasional visits, I have never quite got the hang of it, and unlike some apps, the logic of navigating the site just does not work for me. It’s mot intuitive, at least not for the way my brain works.
I also have found that much of what gets posted on many pages is, well, plain boring and of no interest to me.
So what should I write about?
It occurs to me that not meeting people frequently, just in the daily trivia of living, means we have lost the opportunities to loose out our frustrations with what we read or hear, in the course of those ‘morning…you all right?’ type casual conversations. So we can be tempted to let off steam in blogs or tweets, or Facebook posts instead.
I enjoy playing around with words, and creating sketches out of the absurdities and sheer hypocrisies I witness, in government and in wider public life.
This morning I listened to Ghislaine Maxwell’s brother speaking in the silken tones of arrogant, self satisfied wealth, about the conditions of his sister’s custody. Torture? I don’t condone such detention, but let us not forget the appalling reasons why she is in custody.
And yesterday a Lord health minister spoke about nurses being well paid and in secure jobs, so they don’t deserve a pay rise.
We are governed, both directly by government and indirectly by the ‘establishment’, by people who are in a different universe from 95% of us.
Remember the apocryphal image of Chancellor Lamont lying naked in his bath, singing ‘non, je ne regret rien’…after the ERM disaster in the 80s.
Covid has increased the wealth of a few, and wrecked the lives of many. Covid has also distanced decision makers from the reality of our lives, and from face to face challenge.
And yet, and yet…test and trace has 2,500 ‘consultants’ paid on average of £1,100 a day, for at least a year, ie continuously, as if employed. They’ll be paying tax at company director rates on their ‘dividends’, rather than the PAYE the rest of us pay. £250,000 a year; effective tax rate probably less than 20%.
What is going on? The world of cash machine government and financial services has gone mad. And they just go on taking and lying, because they can!
There’s always another fiasco round the corner to take focus away. The royal ‘family’, that increasingly appears to be totally dysfunctional. Another pointless press conference. The daily PR shot of our prime minister smiling and glad handing during a 5 minute drop in. Funny how he has an hour or two for a trip to a hospital, school or dockyard for publicity. Keep the good news and smiles on front pages.
And there I go again…You see how easy it is?
My reality is walking around fields and meres, along canals, spotting emerging signs of spring, hearing birds returning in a week or two, and preparing the garden for summer.
My reality is carving shapes into wood, standing at my bench, and working out how to create something. Carving is taking away, rather than adding. You have to think in reverse. What will be left after I cut this? And every time that intense focus slips…you make a mistake.
My reality is talking to, and seeing, the wonderful friends I have through DEEP and Zoom.
And all the rest is just noise which I can choose to turn off.
Spring is coming. Some movement around the country may be allowed by April. But the virus will come and go and come back again, as it mutates and moves around. At some stage we are going to have trust our vaccinations and meet again.
I have laid off government and NHS organisations in England for a year. I’ve given them a break to sort themselves out. They’ve had Covid to deal with, although an awful lot of that went straight to private companies with zero experience of healthcare. They’ve had to deal with merging CCGs and starting to form Integrated Care Systems. They’ve probably had to deal with demands for cost savings from the centre.
But I (and others) are impatient again for change.
I have just read the Scottish Government’s plan for post covid dementia care. It is an admirable document, with 21 firm ‘will do’ commitments.
Now I am not completely stupid, so I know that not all of every commitment will, or indeed can, be completed. But it is a great credit to them all in Scotland, that between all the organisations and many plwds and family carers they have managed to agree to implement a real plan for continuing their work to improve living with dementia.
I would bet that in Wales there is similar work going on.
The common thread is that both countries have single health and care systems rather than fragmented, quasi autonomous commissioning groups and NHS Trusts. And NHS England has little or no power to tell them what to do. I know this because Simon Stevens told me a few years ago!
So no one at the centre is able to force or influence a single, unified approach to dementia in England. We all know this: the post code lottery is evident everywhere.
I am missing telling truth to power, or at least being a voice among many shouting from the stage.
I am missing being able to influence.
I am missing social and professional contact with dementia professionals and healthcare decision makers.
But always I hear that other voice telling me that ‘we’ have been doing this for many years, with increasing presence and volume, but have had little or no effect. CCGs continue to ignore us and dementia if they choose. The government makes occasional nods in our direction but makes nothing much happen. Local memory services tweak a little here and there, often in response to budget reductions, leading to reduced not increased services. GPs’ interest in change is sporadic, and usually driven by individual interests or experience, rather than evidence based and values driven medicine.
We will not get our show back on the road by just talking to ourselves on zoom. (Although that is the source of all my joy…talking with friends)
We will not get much done by shouting about injustice and unfairness.
What we need is real, face to face engagement with decision makers and influencers.
And we need to use evidence.
For example. Dementia UK has solid evidence of the social and economic return on investment in Admiral Nurse seevices, gathered about three years ago. This demonstrates that the return is at least £1.50 for every £1 invested (and often more) plus much unmeasurable benefit in terms of wellbeing.
And yet around three quarters of the country has no admiral nurse services. They are growing, yes, but many thousands of people severely affected by dementia do not get their face to face help.
The GOV.UK list of what we should expect after a diagnosis of dementia is a good starting point, but it is not mandatory. In fact experience would suggest it is ignored or even unheard of.
A small chink of light in the tunnel is the introduction of dementia specialist staff into Primary Care Networks, another new structure in the NHS. (Or, rather, on the edge of the NHS, since GPs retain their status as private contractors so they cannot be told what to do; just what they will be paid to do.)
I hear that these new dementia specialist staff are bringing renewed interest and knowledge into practices/networks, and hopefully they will be everywhere within a year.
Nothing ever changes overnight, I hear you suggest? We have to wait, accept the tiny changes as they happen, and hope that in 20 years’ time the system will be better and consistent.
Trouble is, many of us will not be here in 20 years. And while it is good to work for something that we will not directly benefit from, it is also incredibly frustrating.
And there you have it: the scales are finely balanced. Do I/we campaign and get frustrated by lack of progress, or do I/we sit back and get frustrated by not engaging in campaigning?
I walk the dog every day.
The postwoman comes every day.
Zooms happen every week.
Groceries come every fortnight.
I still get fishing phone calls which annoy me beyond all understanding.
I haven’t written for several weeks. It’s been Christmas and I’ve been waiting for my head to clear.
Having family here, in segments other than on the actual “day”, was lovely but long winded. And I did withdraw much more than in previous years. Having spent so many hours on my own while others talked, spoke, laughed, drank, it was impossible to switch on joviality for an hour at the table.
I remember with shame one particular and hurtful comment I made, blurting out a rudeness wholly unnecessary. I don’t know what made me do it.
Now I am beginning to get the pre-spring surge of new growth in my blood. Pruning roses and thornless blackberries. Digging out dahlias and gladioli for replanting in March in the new year’s plan.
My friend Dory is getting out in her still new allotment too. I like to think she is digging while I am, working side by side in our favourite places. As lock-up goes on I get more and more warmth from my DEEP friends. Meeting each week, often twice in different groups, chatting, joking, laughing…they are the light in the darkness when I close my eyes.
Last week I joined a meeting with a different DEEP zoom group. All lovely people, but with different things to talk about. Diverse, divergent thinking is good: it corrects the course you can veer onto when only talking to those you know well. Like always reading the same newspaper, you need the other perspectives too.
I was jolted back into my previous world of campaigning, of anger and frustration, this time over diagnosis variation. A person had been diagnosed with Alzheimer’s four years ago, then told last year that it was wrong…he did not have dementia, just anxiety and depression. One consultant might say dementia, another depression. A scan might show change, but tests show nothing.
Two streams of thought flowed into me during this meeting. First, that I ought to be still campaigning but just don’t want to do it any more; second, that diagnosis of dementia is incredibly complex and still quite subjective. The more I read the more I understand this, and the less I feel I should judge. On services’ capacity, support and understanding across health and social care…yes, I will gladly express my criticism. On individual diagnosis, maybe less so.
Getting back to campaigning, I simply no longer want to feel angry and frustrated. I know I should be trying to bang heads together to get change, but it has been such a thankless, fruitless and upsetting task that I simply cannot restart that engine. Hence my withdrawal from dementia friends and communities engagement. It’s like a third and final stage retirement. The first was stepping down to part time working, the second stopping paid work altogether, but doing lots of unpaid stuff.
This is the third step, into letting the world go by, being a commentator more than an activist, and just living in my world of friends and outdoors. I love my new carving hobby, and I’m ready to start sowing seeds in February.
But more than all this, I love my zoom meetings with my bestest friends. I love to take the piss and see them laugh. And I love to feel loved by them. You know who you are.
As I hinted earlier, there are drawbacks to zooming only with chosen friends. Yesterday a local villager called to talk, outside (bloody cold), about her recently dead husband. Of course I listened sympathetically, knowing she just needed to vent, to replay, to reorganise her thoughts and feelings…
But I also thought, I really do not want this. She is not and will not be a friend, just a local acquaintance. We do not share similar views of the world, and I now find it harder to withstand being shaken around by people I don’t agree with. It’s like I want to just be in my own cosy and probably prejudiced escape room on my own. And invite in those who will not disturb my comfy, comforting thoughts.
That, I think, is a side effect of this isolation. But should I worry? Probably not. Firstly because there is nothing to be gained from worrying. Secondly because we should all ignore those ‘shoulds’ and ‘oughts’ and just do what we choose and want to do.
I watch the action developing, listen to the speeches, the arguments, the drama.
Some of it is about me, some about others.
Some, indeed, I have no clue about.
And then I snap out and come to life…but without my lines.
What should I say? When? How? Where?
My fellow actors say just be in role, just ad lib with whatever seems right.
…and that, my friends, is how I view my life, or my role, at these times when things scramble.
….
Yesterday someone said something particularly nice to me, complimentary.
(You know who you are.)
And when I later walked in the rain filled field with Lupin I knew I would not sleep easily that night, because my head would be filled with what ifs, and if onlys, and replays…and then I would dream of something, probably not pleasant.
And so it came to pass.
And here I am, reflecting on the roles and games we play in our lives.
We have visible, outward facing roles, which we develop when we have to fit into new situations and dynamics. They change as our work and family and leisure lives change, as we live and the years pass.
(I think we don’t grow old; we LIVE. Years pass, and we change as lives around us change, and the world changes. Mechanically we wear out but we still think and feel, often as if we were still 21.)
We have invisible personae, our inner thinking and feeling selves. thoughts, fears, dreams, hopes, desires…most of which we hide inside, away from risk of exposure and hurt or disappointment.
A person might be seen as a happy, cheerful, jokey type, but inside be quite different.
One who looks less relaxed, more of a lonesome type, or just quieter, might inside be happier and more at peace.
You just do not and cannot know…until you actually get beneath their skin…till you take the time to listen and hear and understand them.
….
The link with dementia?
Is that brain disease is no different from any other disease, except you cannot see it or stop it. So it is inside, nibbling away, and we can only imagine what it must be like. We cannot say, yes, you limp because of your broken leg. Or you cannot get up because of arthritis.
Nope. With brain disease you look just, well, ‘normal’. At least until you develop tremor or rocking, or you mumble to yourself. Or any number of other ‘ticks’.
If others don’t know that you have brain disease they cannot see it. They only see what you show them. If you look and sound in control and ‘normal’ but they know you do have brain disease they don’t really know what to think. Or expect.
Completely understandable, and I don’t criticise it. Because until they talk to you and listen and hear you, they don’t know you. They only know their expectations.
Doctors who don’t ‘get it’ ask: ‘do you really have dementia?’.
Most people express surprise and admiration.
But actually it is just us playing one of our roles. We don’t have a script. We just say and do what seems appropriate at the time.
And, believe me, it is not always appropriate! (As some of you know.)
Later, though, we go internal and think. And reflect. And those are the days that are followed by the curious and uneasy dreams.
(Facilitated by donepezil in my case.)
You don’t know a person until you have walked a mile in their shoes.
(Thank you, Harper Lee.)
What to me may seem just normal and just being me, may seem surprising or unbelievable to another. But that’s only because you don’t know me. You may think you do, but you don’t. Not till you have walked that mile.
We are all learning, all of our lives, sometimes knowingly, sometimes not. We change. We learn new character roles to play. We learn new scripts. We find ourselves in new places. We adapt.
We do not grow old.
We change. And we wear out.
But inside we still think and feel and dream, looking behind us at our past, and ahead to our future. You just don’t see that.
Many assume that Shakespeare wrote that old age is like childhood, dependent on others, muling and puking. (As You Like It.)
We do not grow into children! Our bodies my fail but our minds do not. Our brains may not send the right signals but our thoughts are still intact, inside.
We do not want to play children’s games when our minds are wise and still wonderful.
….
Personalised care?
Walk a mile in my shoes before you tell me what’s good for me.
It’s a funny thing. This old disease, eating away my brain.
I can’t see it. I can’t feel it. I don’t know where it is or what it’s doing.
It’s been inside for decades. Whatever caused it to start, whenever it started, I hadn’t a clue. Still haven’t.
Well, perhaps I do have a few clues. But they don’t tell me what it’s doing right now. And what I can expect next month or next year.
The first we know about dementia, is when things begin to just not quite work right. Names. Words. Trips and slips. Hesitation. Writing the wrong words. Swaying in the shower. Misjudging distance, or time.
And by then it’s too late.
Well, actually it was probably too late thirty years ago. And anyway, too late for what?
Healthier living? Less alcohol? Less fat and salt? More exercise? Less stress?
I ate all the ‘wrong’ things as a child. Butter, sugar, syrup, fatty meat and gravy, cakes. Sweets of course.
I drank alcohol from around ten. Following the family tradition. Habit. Escape from unhappiness.
I lived with numbing anxiety all my life. Anxiety about what others thought of me. Did they like me or think I was an idiot. Probably the latter, as they showed it in their bullying early on.
If I avoided the cracks I might escape.
If I always did things in even or round numbers, or fives, I would be ok. Blinking. Coughing. Repeating things in my mind. Everything in even numbers, in fives, in tens. Touch one finger, touch them all.
I always looked at people’s faces and eyes. Were they looking at me? What were they thinking? Did I look silly? Or was I unnoticeable?
I wore colourful clothes because I wanted to be seen, to be different, unique. Yet I couldn’t stand making mistakes, or doing something stupid in public.
Yes, I had a yellow suit with red buttons!
I know that I strived to be the best in non contact sports and music to prove that I really could do something to be proud of. And to prove that my parents really should have loved me.
I was sent away to board at 11. Hated school. Was bullied and called names. Couldn’t stand up for myself. Was frightened all the time. And found escape tricks.
I went up to a little pub in the summer for a couple of pints before tea. If you went on your own no one cared.
I learned to love picking wild flowers in the grounds and putting them in a glass on my desk.
I drank sherry in my study. On my own.
And that set the pattern for my life. And my brain.
The reason I got through my life was a year’s psychotherapy with a wise old man in my mid twenties. I learned a lot. And what you know and understand you can live with.
Most of the time.
I have had two breakdowns. The first was towards the end of a three month solo camping journey around France when I was 24. One day I could not leave my tent. Could not be seen. Could not meet anyone. I was frightened into mental paralysis.
I loved my Citroen
The second finished my teaching life. I made one of my bad choices, to get promotion by joining a rough school. It was out of control, and I was totally unsuited to it. After a year of indescribable anxiety and stress, and long long hours of work, I went to pieces. My bodily and brain functions began to shut down.
I was eventually diagnosed with chronic fatigue, and that was probably right. The fatigue that fighting a losing battle with your mind leads to.
I know now that cortisol is released in fight or flight situations. Stress, anxiety, self defence, escape…
I believe that excess cortisol over a lifetime has attacked my body. My brain and my organs. My joints. My muscles.
I believe that stress over a long period causes the body to attack itself.
My first real disease was in my back, aged around 20. I played hockey (badly) and developed pain when playing. Xrays showed parts of two vertebrae had stopped growing or were dying away, leaving unstable joints. There was no known cause.
That was the start.
So why am I telling you all this autobiography?
My diseased brain is real. It is not imagined. It is clinically evidenced. But the causes are not known.
I spend a lot of time nowadays back in the past, reliving situations, decisions, feelings, even calling out in embarrassment or anger. I can see that my horrid self doubt and anxiety have caused a lifetime of illness. A GP once said to me that having three different conditions at once was just not possible. Hence, he failed to diagnose several in me.
Apparently I hold the record currently for the number of pills taken each day in my local town!
That is not chance.
I don’t want you to feel sorry for me. Life is what it is. And I have had a lot more luck than many. Now I am retired, and can choose to do only what I enjoy, and I live in a beautiful, quiet place, I am happier than ever before.
What I am trying to say and show is that love, and showing love, touching, hugging, knowing you are loved unconditionally…they are the big things in life. Without those, well, life will be pretty bleak.
I feel my little grand children are blessed, when I see how their mothers unconditionally show their love for them. They will feel loved and feel strong.
There is no medicine that can make up for lack of love, for lifelong mistrust of people, and for paralysing anxiety.
So as different symptoms appear, as they do, and as my body and brain gradually degenerate, as they do, I will take comfort from believing that what happened to me will not happen to my grandchildren. And I will hope that I have not done harm to my own children.
Acegi lived in a faraway country known as Aipotuland. He had lived for many years and had seen his children grow up and move away to distant places he only knew of from maps. Acegi’s wife had died five years ago, too soon.
Acegi loved a simple life, tending his garden, walking through the woods, and talking for long hours with his friends and neighbours. But Acegi had recently begun to forget things, and to wander off for days.
2
One morning Acegi received a letter written on parchment in large, clear writing. His daughter said she expected to give birth in three weeks, and hoped he would come to see and bless the new baby.
Acegi wondered how he could possibly journey so far on his own. How would he find his way? How would he eat and sleep? He would ask Alexei for advice, and talk to the village elders.
3
Acegi’s daughter lived many days away, so he gathered together what he would need for the journey. He asked Alexei for travel instructions, and printed them in large Arial letters. Alexei included photographs of places Acegi would see along the way so he would recognise where he was.
Acegi did have one creased and faded picture of his daughter’s home, which he treasured, and this gave him the strength and confidence he needed to leave his village.
The village elders presented Acegi with a necklace of sunflowers which their people believed would keep him safe.
4
Acegi packed a toothbrush, his pills and his breathing machine, and several pairs of underpants. And a spare pair of shoes. When Aklexei told him it was time, he left his home and walked the winding path that led to the taxi stop. He looked back and remembered the wonderful times he had had in his lifelong home.
5
As he walked, Acegi passed many familiar animals, and some he did not recognise. He smiled and said hello to those he knew, and their returned smiles and greetings comforted him. One ass, noticing Acegi was wobbling and meandering a little, offered him a ride. Acegi was grateful and rode quietly on the back of the helpful animal.
6
The journey was long and arduous, through woods and meadows, across streams and around dark pools. After the ass returned home Acegi walked as best he could until the sun set. In the warm darkness he lay back watching stars in the firmament. There was one particularly bright star that stood out as it moved across the bejewelled sky. As luck would have it, the star moved towards the East, where he was headed.
7
Next morning Acegi found himself at the place the taxis stopped. Taxis were the only way for Acegi’s people to travel long distances, and they followed no timetable. He might have to wait several days, but he had plenty of time. While he waited he would talk to his friends through Alexei, and send them bird song recordings for their pleasure.
8
Next day, as the sun rose, and Alexei urged Acegi to enjoy the day, a taxi arrived in the clearing. The driver was the same smiling man as in Alexei’s photograph, and Acegi climbed up for the long drive to town. As they travelled over hills he could see for miles and miles, in fact he could view his whole world. And as they travelled East, always East, Acegi hummed along to his favourite songs which Alexei played for him.
9
When Acegi reached the outskirts of Mehelhteb darkness was gathering. The bright star above sparkled through the gloom. It was now right overhead.
Acegi knew this was the town in which his daughter lived, but he could not remember her address. As it was late, Alexei advised him to find a nearby room to sleep. The taxi driver followed Alexei’s instructions to the Best Eastern Hotel and Acegi soon lay down to dream.
10
In the morning Acegi was hungry. He walked out and found a cafe, where many friendly faces were engaged in deep discussion. As he entered they invited him to join them.
Acegi was grateful sit and and listen to their stories, while he shared bread, coffee and cakes with them. Perceiving Acegi’s evident fatigue, one wise old man offered him a few drops of balmy oil.
“May these drops of myrrh restore you, my friend,” he said.
11
Although Acegi was unfamiliar with the streets of Mehelhteb, he found his way around without mishap. Directions and street signs were large, bold and mounted at eye level; crossings were marked with “look right, look left or look out” markings.
Acegi was meandering along a side alley and failed to see a sign in front of him, as he was watching his feet trudging through dust. The bang on his forehead was such that he fell, and he lay still, unconscious.
12
Acegi awoke in a brightly lit, white room, lying on a couch, curtains at his sides. Where on earth am I? he thought.
Raising his aching head he could see a clock saying “Welcome to Kings’ Hospital, Mehelhteb, December 12, 2019. It’s 16.35. The weather is sunny.”
Relief flooded through him, and he saw a woman wearing a big smile approaching his bed. Hello, she said, bending down and looking closely at him, my name is Neladgam, and I am a doctor.
13
Three days and three nights Acegi spent in The Kings’. At first he neither ate nor drank, but for sips of water when handed a mug. On the second day he found a dish of tiny, dainty morsels on his side table, just beside his outstretched arm; little pieces of cake and tiny sandwiches. Then he heard a familiar voice coming from a mug saying Acegi, it’s time for another drink. He remembered the kind doctor Neladgam.
Acegi soon began to feel better and ready to go and find his daughter.
14
When Acegi walked out of The Kings’ hospital he was given a gold and blue coloured badge and told always to have it pinned on his clothes when away from home. Dr Neladgam explained that if he ever got lost, or could not remember where he was, he could ask someone to touch the gold badge with their Alexei, which would tell them who he was and where he lived.
So off walked Acegi, feeling safe, ready for the world outside The Kings.
15
Acegi asked Alexei to find his daughter’s house. Yram lived somewhere in the East of Mehelhteb, and Acegi thought he remembered her mentioning a zoo nearby. Alexei found two possibilities, and gave him directions to get to each.
As he walked, Acegi was struck by the noises he heard. There was a lot of traffic and plenty of crowds, and here and there street musicians. At times the noise interrupted his concentration, even deafened him with a blurring and blasting that left him unable to think at all. He shouted at Alexei to take him away from the main roads.
16
Now away from noisy thoroughfares, Acegi walked comfortably past small boutique shops, their window displays full of colourful jewellery, clothes and pastries he had never seen before.
On one occasion he stopped and stood at a window, staring at a stranger looking back at him. The person was very close, staring penetratingly at him. When Acegi turned his head the stranger turned too.
Acegi abruptly ran up the street, and when he looked round the stranger was gone. Acegi resumed his walking.
17
Acegi was tiring. His legs ached, his head throbbed. He came to what looked like a taxi stop and read the timetable, then sat gratefully on a soft, welcoming bench. The sun circled and sank, and still Acegi sat, nodding gently, eyes closed. He sat on through the night, waiting for the taxi that would take him to his daughter Yram.
Now and then a passerby looked oddly at him, with a questioning or even pitying half smile. Acegi smiled back and waited.
18
As the sun rose Acegi knew that a taxi would soon arrive to take him to Yram. He was hungry and thirsty, but he was afraid that if he walked to a shop he might miss his lift.
Soon the street filled and one young woman dressed in a blue smock stopped beside him. She looked down and told him that no taxis ever came here. It was just a bench to rest on. The timetable was just pretence. She smiled and continued on her way.
Acegi was confused and annoyed. He had wasted a day, and Yram might give birth before he arrived.
19
After a breakfast of sourdough, honey and milk, Acegi walked on, refreshed and eager.
That afternoon, as the sun began to wane, he found an Inn. When he went in the clerk looked oddly at him, up and down, and told Acegi there were no rooms available.
Disappointed, Acegi walked on, tired, footweary and a little downcast. He came to a busy crossroads. Luckily, he looked at the ground where he read a warning in big white letters: LOOK RIGHT. As he paused, a lorry thundered past him.
20
Acegi had nowhere to sleep. The sun was low, his eyes were dim, he could hardly see, and he had not got his glasses.
He walked haltingly past several animal enclosures, each containing a pair of animals. The zoo! He must be close to Yram’s home.
Round a corner was a shed with broken doors. He slipped inside and lay on the floor. He soon slept, and dreamed.
21
Next morning Acegi ached all over. He entered a pharmacy, with the name F. Incense over the door. As Acegi rubbed a deep, old scar on his face the pharmacist served him. Frank suggested aromatic oil for the scar, and said it would heal other aches and wounds too.
Acegi asked for one or two other potions which he regularly took, but which were now nearly exhausted.
Like Acegi.
22
Acegi felt refreshed after breathing in the aroma from the oil Frank gave him. His aches calmed.
Walking along busy streets that afternoon, Acegi saw that the shops were filled with glittering colours and little trees of dazzling lights. Several trees had some lights which seemed not to work. Acegi stared at them, willing them all to light up, but try as he would they remained stubbornly unlit.
Acegi walked on. Some things were beyond his power to mend.
23
Now, Acegi carried with him a small, creased photograph of Yram and Hpesoj’s bungalow. He held it in trembling fingers and looked around at each home he passed.
The bright star above was still there, unmoving, dazzling, and Acegi noticed a reflection in one window he was passing. The bright star glistened in the glass. And he saw this was the bungalow in his treasured photograph.
24
Acegi approached the front door. The star’s reflection was still glistening in the window above the door. He knocked on the door and waited. He knocked again, and tried the handle.
He let himself in, and heard voices nearby. There were excited whispers, and sounds of people eating. Acegi walked through and found his beloved Yram and her husband, Hpesoj, seated at a small table.
After many kisses and long hugs Acegi was invited to sit and share their bread, cheese and wine. They held hands and silently gave thanks for their wonderful good fortune.
25
After a good night’s sleep, Acegi rose to the sound of joyous cries and laughter from his children’s bedroom.
Acegi saw Phesoj sitting beside his daughter, holding a small bundle, and inside was the tiny radiant face of their baby.
“Acegi,” said Phesoj, “welcome our new baby to the world. Susej.”
“Husband, you cannot call him sausage.”
“Susej,” Phesoj replied, “is the right name for this child, this wondrous day.” And Yram gently purred her delight.
Phesoj turned to the mirror and admired his beautiful son.
