Cerebral Palsy, Coronavirus and Me

Finding words to describe the condition that has had the most impact on my life is difficult, so when CP Teens asked me to be one of their faces for cerebral palsy month I decided to portray cerebral palsy as a monster.

At the moment we are facing a monster as a nation with this insidious virus and I am aware that for those already living with the occupying forces of cerebral palsy our defences are weakened to further attacks. I am praying for all my friends.

But I am also praying for everyone who is gripped by fear, because fear is far more dangerous. Fear doesn’t just threaten our physical health, it monopolizes our mental health and paths the way to selfishness. Perfect love drives out fear. So every day I pray to Love Himself and am filled with gratitude – there is so much to be thankful for. Every day I will post on Twitter what I am thankful for.

Let’s Talk About Loss

Last week that is exactly what I did – spent the evening talking with Chris and Beth French about bereavement, the organisation that Beth runs, ‘Let’s Talk About Loss’ and preparing my sisters for when I have died. Reading that, you may have an image of glum faces and the evening permeated in sadness; but instead we had good, honest conversations punctuated with laughter in a room saturated in peace. It was a truly blessed time.

In December 2018 Beth and I met at the House of Lords, where we had both been short listed for the ‘Rising Star Award’ (she won it!) and since then we’ve met up in Bristol on one of my many clinic days. Earlier last week, she was featured on the BBC website talking about how awful bereavement cards can be, and launching some alternative cards with useful tips on what to write in the card.

But Beth and I have more in common than awards and a desire to break down taboos around death, dying and bereavement; we are both Christians and actively involved in our local churches. So we got on to talking about how churches can be better at supporting the bereaved and the tension between the very real pain of grief and the wonderful promises of heaven. In a way, Beth and I embody this dichotomy as she grieves for her mother and I can’t wait to go back to Jesus’ garden. As a body of believers we need to get better at holding both sides of this, as encapsulated in the story of Lazarus in the bible.

Transplant Turns Ten

Yesterday it was ten years since I had my kidney transplant, which has given us as a family a cause to be extra grateful, celebrate and eat cake.  At this time of year I am especially beholden to the family who donated their loved one’s kidney, enabling my health and quality of life to improve dramatically.  

In the spring Max and Keira’s Law will change organ donation in England to an ‘opt out’ system, which means that all adults in England will be considered to have agreed to be an organ donor when they die unless they have recorded a decision not to donate. The NHS are asking everyone to: record their organ donation decision on the NHS Organ Donor Register, and tell their family and friends what they have decided.  Families will still have the final decision. 

As of 10th January this year there are: 6167 people waiting for a transplant, and every day someone dies waiting for a transplant.  

On my tenth birthday I wrote a poem in the form of William Blake’s The Tyger, so yesterday it seemed fitting to write one for my kidney.   My transplanted kidney came from someone older than my mother.  How weird to think that something inside me has been on this earth longer than my mother has!

My Transplant

Kidney Kidney, turning ten,
In the bodies of young men;
What ultimate gift from grief,
Could dying restore hope’s belief?

What memories are secured
Within your double lives endured?
What joys? What sorrows? And what pains?
As you beat life’s path – again.

Kidney Kidney, turning ten,
In the bodies of young men;
What ultimate gift from grief,
In dying restored hope’s belief?

Songs of Praise

Recently I have been very busy with a book event in Marlborough, which was well attended and I met some interesting people.  Yesterday there was a wonderful charity lunch for Teach Us Too hosted by dear church friends in Hullavington: amazing food, good company and the message of God’s love and Teach Us Too shared.

If you missed meeting me in person, you can see some of my story on Songs of Praise this Sunday at 1.15pm, and afterwards on iplayer. 

The ‘D’ Word

Why are we so afraid of the ‘d’ word? Why do we avoid saying it out loud, and instead use a whole raft of euphemisms? And when it comes, why do we turn to poems and sayings that deny its existence?

Death is not ‘nothing at all’. For the person who has died, death is the end of a body that has stopped working and the beginning of the soul’s new life.

Death is not ‘nothing at all’ for the people who mourn. It is life changing, life shaping, life moulding.

When Jesus went to the graveside of his friend Lazarus we get the shortest profound verse in the bible. Jesus wept. He stood at the grave and wept.

As I look forward to being in Jesus’ garden forever, I am also trying to prepare my sisters for when I am not here. I am their big brother after all. And I long for them to experience the freedom to follow Jesus who wept at the grave and who has conquered death.

(I am writing this now because it was All Saints Day yesterday, rather than because my health has deteriorated!)

October is AAC Month

Being able to spell out everything I want to say has transformed my life; but when it comes to relationships with family and friends I have found that it is the questions I ask, more than the answers I give that has deepened the connection between us.  

Last year during AAC Awareness month I set a challenge for people to try being non-verbal, which you can see here.

On Friday I was honoured to present at the Angelman UK Communication and Literacy Conference, where I also got to meet one of the international gurus on the topic of literacy for AAC users, Jane Farrall.  Apart from telling her she was a hero, I also got to ask her important questions about how to best spread the message of Teach Us Too, and how I should spend my time promoting the message that literacy transforms the lives of people who use AAC.  

During the summer I asked every family member and friend I met what I should write next, and I got almost as many ideas as times I asked the question.  But, on the last day of my school holidays, my godmother responded to my question with a question of her own: “What is on your heart? What do you think about the most?”  With a question she had cut straight to the nub of my conundrum and the way forward became very clear. 

So my challenge to you this year is to think about the questions you ask more than the answers you give.  

On the stage at the Angelman UK Communication and Literacy Conference

Summer of Fun, Friends and Flying

Wherever you go out at the moment, you hear people wondering where the summer went; and most schools got more than our five and a half weeks.  But, that still left plenty of time to go on holiday, meet up with friends and try some new experiences.

Thanks to BA I became the pilot of a Boeing 747 for the afternoon and successfully landed the aircraft at Heathrow.  Usually, nothing beats the real thing, and there was nothing simulated about my first Prom, a wonderful mix of totally absorbing Russian music.

Meeting up with friends is always a highlight of the summer, and this year as well as enjoying their company I had a question for them: ‘what should I do next?’ for every time I asked the question, I got a different answer.  So, watch this space – it is going to be a busy year ahead!