Lockdown 2.0

This time around, lockdown has been a completely different experience.  As a teenager with complex and multiple health issues I have not been back to school since March, but until a few weeks ago I had seen friends from a social distance at church, at church youth group and in my garden.  Now even that has stopped. The solidarity and comradery experienced in April, May and June has dissipated, because this time very little has changed for my friends; school is open and life goes on.  My sisters groan when lockdown is mentioned – for them this news went stale in the summer. In the spring I heard it said that we are all in the same storm, but experiencing it in different boats. Now it feels like even the storm we are experiencing is different.

Having spent much time in hospital I am used to missing out, but feeling ill, I never felt up to much.  However, there have been times when I have been completing a course of intravenous antibiotics or visiting the hospital for thrice weekly dialysis, when the feeling of exclusion has been a part of life with renal failure.  If the first lockdown brought anything, I hope it is that we’ll all have more compassion and understanding for what it is like living with a health condition, where missing out becomes part of life.

In the spring we were all so grateful of the weather, with, “thank goodness its sunny” becoming a regular refrain, often appended with, “can you imagine being locked down in winter?”  So with an increasing sense of impending doom we found ourselves faced with a winter lockdown. And winter weather has lived up to par; wet, windy and wild tempered by days of damp grey nothingness.  The trees have cried their leaves and stand bare and bereft in every field.  Every year it is depressing and this year seemed set to be more so.  Until I was introduced to an article called ‘Covid: how to survive a winter lockdown from those who’ve done it’ and the concept that rather than seeing winter as something to endure, we should embrace winter for what it’s worth. I have been in danger of not recognising or celebrating the season I am in, both physical and metaphorical.  What if rather than wallowing in winter blues and lockdown frustration, I see these times as seasons? Seasons not to get through, but seasons to embrace.

How I am experiencing a winter lockdown has been transformed. On my daily circumvent of the fields in my village I’ve started to rejoice in the landscape laid before me: winter shadows; silhouettes of the trees displaying the intricacies of their structure (something that is lost when covered in leaves); the squelch of mud on my three wheeler tyres; the drizzle on my face; the sound of the buzzard pair over my head.

There is extra time too, saved by the van journey to and from school, and not waiting between lessons.  Time I can utilise to learn new skills and enrol onto one of a plethora of online courses.  So far I’ve studied an introduction to classical music with a professor in Yale University, completed a Leith’s cookery school course for teenagers and done an online poetry course.  Nothing though beats live lessons. For my friends, these are ‘just lessons’ but for me they are the difference between dry worksheets and tick boxes, and the interaction of a teacher in the classroom; explaining, answering questions and giving feedback. In contrast to the frustration of school work, I have been very blessed that my grandfather has been giving me lessons via Skype in our shared interest in etymology. Every week since the first lockdown, and twice a week since September, we have met to discuss a book on etymology and for Grandpa to impart some of his vast knowledge in English place names. This week we are meeting for lesson 32!

Whilst I feel disconnected from sharing moments together with my friends and the banter in the corridor, I am very fortunate to have friends who include me, write me messages and play games with me on Zoom. One day when I was feeling a bit low my friend wrote me this, ‘Looking forward to being able to see you at school, it may be a very long time but we’ll always be here for you.’ If you know someone who is alone, never underestimate the power of a quick text.

Rather than thinking too much about the people I miss, I have tried to make the most of opportunities to make new connections and strengthen relationships that are hampered by distance whether we’re in lockdown or not. Unusually, I have also been able to say “yes” to everything that comes my way without wondering how I will fit it all in. Opportunities have increased with things being online, for instance last week I was in a group at Dundee University at 2pm, met a consultant in Leeds at 3pm and shared a video for UK Disability History Month at 7pm!

For me, travel has always been tricky. I don’t like sitting strapped in my chair for hours in the van and rail travel is restricted to day trips, because I need so much equipment for an overnight stay. Many years ago I went on a train to France, but I needed less than half the extra oxygen I need now and just transporting what I need for a day trip would be difficult. Flying has its own complications, because the reduction in air pressure would probably mean I spend the journey in my ventilator. Now everyone is experiencing some of these same restrictions and it’s never been easier for me to widen my horizons. The need for virtual travel is now universal.

Whilst I am locked down at the moment, I spent the first nine years of my life with my ability to communicate locked in. I would choose a year of lockdown over a day of locked in. Another upside to this season has been the ability to spread the message of my charity beyond the confines of geographical restrictions. Rather than being restrained in lockdown my voice has been amplified in ways I couldn’t have imagined.

By far the most surprising benefit of lockdown have been the repercussions on my health. In shielding I haven’t just avoided Coronavirus, but also the other seasonal illnesses which usually come my way. And my kidney hasn’t felt this happy since transplant. What my consultant agreed to let me term “my miracle time”. We both know it probably won’t last, so I’m making the most of it whilst it does.

Every season has a rhythm of its own, and whilst time outside is now reduced to the daily walk, inside my sisters and I have more time to bake and watch films snuggled together in my duvet. During the last lockdown I tried to tweet every day using the hashtag I made for the season #ThankfulNotFearful because fear was culpable in its crippling nature. From September, I realised that the equally damaging more insidious danger of resentment was becoming an issue for me. So now I tweet #GratefulNotResentful as much as a reminder to me as a potential help to others. Thankfulness and gratitude sprinkled with generous amounts of laughter will carry us through every season we live through.

World Kindness Day

Today is World Kindness Day, and I was very honoured to be asked to contribute to the youth tent. Here is a transcript of what I shared, ably read by my friend Alaric and made into a short film (below).

What do you want me to do for you? As a non-verbal child in a wheelchair this is a question that changed my life.  At special school I was surrounded by well-meaning people providing me with what they perceived to be a ‘kind’ experience, a sensory curriculum where a repetitive toddler book was read to me with a show of the pictures.  Kindness dictated that I would enjoy lots of different things to touch and smell and see and hear, all delivered in a sing song voice with a smile. I was five, I was six, I was seven.  But love starts from a place of empathy.  Love doesn’t decide what I need, it asks: what can I do for you?  Love puts others first; it is inconvenient and hard work, but in the end the rewards are so much greater. When I was seven I was taken out of my special school for a couple of hours a day by my mother to be taught to read and write.  It was hard work for us both, but it gave me the greatest gift: to be able to spell exactly what I want to say using an alphabet board with my eyes.  Rather than guessing what is kind, I can now communicate and make choices for myself.  Kindness is no longer to me, but for and with me.

Now I campaign for all children to be taught to read and write regardless of their educational label, through my charity Teach Us Too.  I long for schools to see beyond kindness bestowed on their profoundly disabled students, to an education which stops making assumptions of academic inability based on appearances.  Where potential is unlocked and voices are heard.

As a follower of Jesus, I am inspired by the time a blind man came up to him, and instead of performing the obvious kindness, to heal the man, Jesus asked him: “what do you want me to do for you?” And now I have my voice I can ask that same question to those around me.

My Film on YouTube

Bereavement in PMLD classes

When you’re given the label PMLD, it is based on you having profound and multiple disabilities. Unfortunately, this also means that children in the PMLD class will inevitably get ill and die. During my few years at special school three classmates died, and since I left there have been more.

Children labelled with PMLD are also assumed to have a profound learning disability, which usually means that they haven’t been taught literacy and don’t have a means of independent communication (I’ve written extensively on this elsewhere). Without the means to communicate, grief is very difficult to bear, and if people around you think your academic label means your unlikely to understand then it makes it harder still.

Below is a triolet poem I have written on this:

Thankfully, this situation is beginning to shift as some people begin to realise that PMLD students are often mislabelled, and with the right support can communicate (there is still a very long way to go on this, which is why my charity Teach Us Too is so important).

One person who does believe in the abilities of her ‘PMLD’ students is Emma Maskell-Ludlow, who wrote in an article for the SEN magazine about a pupil in her class who:

‘brought us all to tears by telling us how much the passing of another of his classmates affected him. Despite having a vocabulary limited to what is currently on his device, he found a way to tell us how sad he felt, how much he liked his friend and how difficult he was finding the situation. It’s hard to imagine what it must have been like for him before he was enabled to express his emotions.’

Another person I am privileged to call a friend is Sarah Helton, who through her work with SEND and bereavement is calling for equality in bereavement support.

Below is an interview which she kindly gave me into her work, I’m sure you will find it as interesting as I do.

Last time I met with Sarah Helton, in April 2018

Cerebral Palsy

Today I am wearing green for World Cerebral Palsy Day. You might think, like I did, that cerebral palsy is not very common, but it affects 1 in 400 children in the UK*, and of those 1 in 10 use Alternative and Augmentative Communication (AAC)**. Apart from statistics like these it is very difficult to generalise for cerebral palsy, as the brain damage affects us all differently. But for some reason it is seen as fine to generalise for physically disabled non-verbal children, and to yoke us with the educational label PMLD, and assume we all have a Profound intellectual disability. For me, and many like me, it is these assumptions which are the most disabling. Assumptions that, because we struggle to communicate we must be intellectually disabled; assumptions that we need to be talked to and treated like toddlers; assumptions that our quality of life is determined by labels.

In researching for this blog post I found some very depressing videos about what it is like to live with someone with cerebral palsy; but I also came across some great examples of people with cerebral palsy loving active and fulfilled lives, with the support of their family. People like the Cheetham family (see video below), who use social media platforms to raise awareness about cerebral palsy. Hannah answers questions on her AAC device and shows how fulfilling life can be.

In solidarity with everyone who has cerebral palsy I wear green, but just like the clothes you wear don’t define you, so cerebral palsy, PMLD or any other label does not define us. Next time you meet someone who looks different to you, speaks differently to you, dressed differently to you, take some time to get to know the person rather than make assumptions about them. That way we can all enjoy a life full of colour.

Video of the Cheetham Family

* NICE 2017 ** NICE 2020

National Poetry Day

Today is National Poetry Day, and the theme this year is vision.  During the summer I was asked to write a poem for the Diana Award to celebrate the amazing visionary work that the award recipients do across the world.  Princess Diana believed that ‘young people have the power to change the world’, and the recipients demonstrate that in spadesful from Faith producing thousands of blankets for people undergoing cancer treatment in Canada, to Nikhiya supplying bags, books and blessings to thousands of Indian school children, to Nik advocating for kindess and equality in the UK.

Here is the poem I wrote, and some Diana Legacy Award holders reading it. Enjoy!

Diana Award Video

As summer sighs its last…

As summer sighs its last through a sunny September day it feels fitting to reflect on what this summer has been. Unusual springs to mind – quieter and less busy but blessed nonetheless. Lots of beautiful walks in parts of our county we hadn’t explored, plenty of picnics and smatterings of meeting friends and family from a two-meter distance. And the sea. Everything is put into perspective when you spend time at the beach hearing the rhythm of the waves and knowing that the tide will continue to rise and fall even after you’ve packed up and gone home. Creation held by the Creator.

Last week my sisters returned to school and all my friends did too. But we decided with my consultant that I will continue my subjects from home. Not an easy decision, but sometimes the right decision can be the hardest one. During lockdown I wrote a series of tweets using the hashtag #ThankfulNotFearful, but as the rules tighten again I think for me the challenge is now #JoyfulNotResentful. And there is much for me to be thankful and joyful about as my health is good, my friends keep in regular contact and I can attend my church every weekend. Without travel to and from school I also have more time for writing, so watch this space…

The Daily Walk

As you all know silence is my natural habitat. But usually I am surrounded by noise and chatter. Whilst I love being part of all the hubbub of family and school life, I also cherish time to be quiet and still with Jesus.

In lockdown we have gone for a walk every day, and at some point in the walk we have set the timer for 2 minutes so that we can be still and quiet. Being silent and still in God’s presence surrounded by His creation has been a blessing to us all, and one of the highlights of my day.

Exploring different aspects of our walk I have written two contrasting poems, a freeform poem for the beginning of the walk, and a Terza Rima sonnet for our time in the woods. Below there is also a small relaxation piece I have written to accompany the 2 minutes I recorded in the woods the other day, in the hope it will bless you too.

Isolating Walk

Like a faulty tap we splutter from the door,
Flailing limbs, squeezing, hopping, stamping,
“Wait for me!” Shambolic convergence,
Wheelchair propelled uphill, the nucleus
Of heavy heads full of:
Virus, news, statistics, death.

Pausing to marvel at lambs gambolling,
Frolicking, blissfully unaware in creation’s
Continuing, unremitting, unabating
Life.

Travelling the road, sisters rambling on,
Wellies stomping the tarmac river,
Questions flowing in unending curiosity:
What flower is this?
But how is the virus spreading?
Why is a buttercup different to celandine?
Will Jon-Jon be ok?

Reconnecting Walk (A Terza Rima Sonnet)

As guests upon the path we lightly tread,
Stooping under boughs of sentinel oak,
Bluebell’s rippling lake before us spread.

Empty; we immerse and plunge in to soak
Our wearied encumbered souls breathe deep,
At senses banquet, rejuvenate hope.

Silencing internal noise, outward speech,
Retuning to birdsongs insistent call,
Faint hearts are slowed as the Creator seeps

His natural balm our bodies enthral,
The soft peace of His whisper transcends,
Harmonised by insect’s tiny waltz,

Hearing, “Everything shall be well with all,”
As guests upon the path we lightly tread.

First get yourself comfy either sitting or lying down. Then as you become aware of your breathing imagine you are exhaling out all your worries and everything that jostles and fills your mind and feel yourself relax. Be aware of your body starting at your toes let them become still, floppy and heavy allow that feeling to work its way up slowly in to your feet ,ankles, legs taking your time let it gradually carry on up into your body, arms, neck and head. As you inhale, bringing life to your body, imagine it is the breath of God filling you and making you new. Allow yourself to be renewed by Him.

Pentecost Power

Yesterday was Pentecost Sunday and the birthday of the church, and it felt especially weird not to be in the church building, but of course just because we can’t meet in person doesn’t mean church is cancelled. So yesterday we listened to a radio service, watched our church on Facebook live, listened to a family prayer adventure podcast and joined a celebration event on Zoom. Thank goodness for modern technology enabling us to celebrate together!

With church happening in our homes it is perhaps easier to transfer the messages of Jesus from the service into our lives, though being with immediate family 24/7 it is sometimes more challenging to put it into practice!

This year I got a dose of my own medicine. Prior to lockdown even being on the horizon, I was asked to write a minute’s reflection on ‘offer’ for the Thy Kingdom Come initiative. Watching the finished result, voiced over ably by my sister Susannah and my friend Alaric, I realised I needed to hear and understand again how God’s Holy Spirit can transform our offering however meagre it may be. For me at the moment that means offering God what I can without being able to go out and meet people, trying to be a vessel for Jesus’ love within the limitations of the situation we are in.

My prayer is that we will all be filled with more of the Holy Spirit at this time.

Lockdown Lessons

On paper we might be about half way through our 12-week isolation during lockdown so it feels an apt time to think about what lockdown has taught me so far:

#ThankfulNotFearful

When I began tweeting using my hashtag #ThankfulNotFearful I wasn’t sure I would find something new to be thankful for every day, but looking back I can see my faith in the goodness of God was far too wizened and small. In reality I could find something different to be grateful for every day of the year during my daily constitutional in the local woods. The only restricting factor has been what my mother has taken photos of! For those not on Twitter below is a montage of some of the best photos.

Theatres, musicals and concerts

A few weeks before lockdown I attended a Bournemouth Symphony Orchestra concert in Bristol; it was a Christmas present and I was really excited to hear Grieg’s piano concerto. The Victoria Rooms in Bristol are a magnificent setting and I had been looking forward to hearing this beautiful, dramatic music live. And it did not disappoint. Tom Poster, the soloist, was captivating and the music resonated in my soul. My body had other ideas and halfway through the slow movement I had a seizure. Irritating and frustrating are understatements as I had to listen to the rest of the concert from the corridor.

But there were bigger ramifications of this seizure. Often in the past when I have gone to the theatre my body has spent time on the verge of a fit, and my mother and I put it down to the extra stimulus of the theatre. It certainly makes me cautious about going to live concerts and theatre. And certainly not with my sisters, because they would find the seizure very scary and it wouldn’t be fair.

So, what does this story have to do with lockdown? Suddenly, I can go to the theatre with my whole family, sat on the sofa in the front row. We have attended musicals, plays and concerts, and so far, without my body thinking about kyboshing the experience with a fit. And we’ve had so much fun!

But theatres are not the only ones to open their doors. In reality I can’t travel abroad due to my health, but thanks to the internet I can now visit lots of interesting places: Pharaohs tomb, Jerusalem’s Gihon spring, a gondola ride through Venice to name a few. And a roller-coaster ride in Hong Kong with my sister screaming next to me.

With Daddy at home we even get to go to church together every week.

Friends and family

Like many people, I am missing seeing friends and family in person. There is nothing like a Grannie cuddle or bantering with friends in the school corridor. But modern technology and lockdown means I am in contact with some people much more than I would be normally, so I see Gran on skype most days, have an etymology lesson with Grandpa once a week, and play on zoom with my friend from church every day. Last week we worked together on a poem about friendship for the zoom youth group meeting on Sunday, which is below.

Stay safe, give thanks in every circumstance and love greatly!

Friendship

Time expands when laughing together,
Creativity abounds in our shared endeavour,
Entertaining ideas, hilarious jokes,
Happiness and fun our friendship evokes.

We share all our secrets, with nothing to hide,
We can always be found by each other’s side,
A lifetime of constant morale and support,
Disability no barrier in eternity’s court.

By Alaric and Jonathan

Stay safe, give thanks in every circumstance and love greatly!

#ThankfulNotFearful