The amazing gift that revitalised a life

A thank you letter and explanation of the need for recovery time

Dear neurokin,

I first started writing this newsletter to you on Tuesday 2nd April:

As the date of the big day loomed, I’ve had a loose plan about what I wanted to say to you in this here newsletter.

Firstly, if you’ve recently subscribed to Belong… we are neurokin, a huge warm welcome to you….please do not adjust your sets!

Each month I bring you a topic around neurodivergence that we look at in three ways;

EXPLORE what research or books tell us about this topic

LEARN from a neurokin practitioner who holds experience on the topic

GROW guided coaching questions to help you delve deeper and grow your insight

But this month is different.

This month is when the five year wait, for my chronically ill husband, me and my family will be over.

As I type these words my husband is soon to be wheeled off into a theatre to have a kidney transplant.

We all are born with two kidneys but we only need one to survive.

My husband became chronically ill due to an autoimmune disease which meant he produced too much protein that attacked his kidneys and reduced the function of both of his kidney’s to nothing - kidney failure.

When your kidney’s fail a machine performs the role of your kidneys. This is called dialysis.

He has gone to hospital three times a week for dialysis whilst he waited five years for a life saving transplant.

A life saving thing that he has been called about, with the offer of a kidney transplant, 9 times in the last 4 years, normally in the middle of the night. Each time for it to be cancelled or unviable.

The impact of uncertainty on neurodivergence

Living with uncertainty is hard for every single one of us.

When you’re autistic uncertainty can be overwhelmingly stressful. We crave information, to create certainty and to know what is happening now and next.

For sure, that’s life…. and when your life is altered by something totally out of your control for a prolonged period, without information and constant uncertainty, it brings an extra level of stress to proceedings.

I have had to grow and change, over these five years, in ways I am yet to fully fathom.

We’ve had to navigate all those highs of hopes, that help was on its way and crushing lows of hope being dashed.

And, we two, my husband and I, we are both neurokin with different neurotypes that are heightened under times of great stress!

His ADHD gets even more distracted and focused on future possibilities. He makes sense of the world and communicates in stories.

My Autism gets even more defiant in its need for answers and with its roots firmly in reality, cannot move beyond the here and now. I make sense of the world in cold, hard facts!

As I waited for that all important call, on 2nd April 2025, to tell me the thing that I dared not believe would ever happen, had actually happened, I could not finish writing this article to you… just in case I jinxed it.

For I had become ridiculous in my belief of signs. Hoping and yes, not in a religious way, praying to this new moon, or that full moon, please let it be you.

Please let it be this moon, that will send him this thing, that he desperately needs to become well again.

A definition of Altruism from the Cambridge Dictionary - please note the cynicism about Altruism in the use of the word in a sentence!

" I have some news” he said, sometime back in February or maybe March? (I cannot keep track of time in this insanely fast year, that is 2025.)

“Oh?” I said.

For the past five years I have become used to news not being of the good variety. Something in his tone alerted me to the fact that this was something I needed to sit down to receive.

“I’ve been offered a kidney transplant from an altruistic donor” he told me.

“What’s an altruistic donor?” I asked.

“An anonymous living person who will donate one of their kidneys to me”.

Of course, our reactions, his and mine, to the news of the altruistic kidney transplant were totally different

I could not allow myself to believe that it was going to happen. Immediately I thought of all the things that could prevent it from happening.

It’s fear, of course it’s fear.

It’s a safety thing, I am trying to protect myself and my family from the disappointment of it not happening and understandable given what we’ve lived through for a prolonged period.

He went all ‘The drinks are on the house!’ Of course there is so much for him to celebrate….. not yet though!

There is space for both realities and we still learn how to understand and navigate that.

A thank you letter to an anonymous altruistic donor..

And so, it has happened.

My husband is the proud owner of a wonderful new kidney, which amazingly started functioning in his body straight away.

I have eventually found a tiny bit of headspace to pick up this thread again and finish this newsletter.

This newsletter is a thank you and a reminder that actually humans can be amazing, generous and will do things that are not self serving, but for the good of others, to benefit only others.

In this insanely noisy world we have created for ourselves it is sometimes hard to remember that.

Humans are amazing.

And now, we can breathe a sigh of relief and in time, when he has fully recovered, we will celebrate.

I send heartfelt thanks to all the amazing altruistic NHS Doctors and Nurses who work under the greatest of pressure with resources stretched to breaking point to improve our health where they can.

And I send the deepest of thanks, my heartfelt gratitude and admiration, to the amazing human who has gifted him with a revitalised life, with a life force that was missing from him. He has a glow in his skin and a light in his eyes that was missing a long while.

Thank you amazing human.

Forever in my heart you will be known as ‘Lucky Number 10’

A time to rest and recover

The enormity of living in a constant state of high vigilance and alert have taken a toll on my nervous system.

In the first few days, when he was in hospital recovering from the transplant, I slept deeply and frequently.

It's going to take a while for him to physically recover and for us as a family to recover mentally and to readjust to what our life might now be.

I need to take this month to do nothing more than helping my family through that recovery.

For April I am giving all Free we are neurokin subscribers access to not one, but two fantastic LEARN Sessions and one GROW guided coaching article and audio that are normally only available to Paid subscribers:

LEARN Valuing your Neurodivergent Talent

Hannah Anstee ✹Woman Unmasked✹

LEARN Neurodivergent Friendship with

Alice Bramhill

GROW Why is burnout an ongoing challenge for neurokin?

For all the Paid neurokin subscribers, thank you for your support of the work of Belong… we are neurokin 🩷

I will be sending you out some resources, later on this month, to help you learn and grow in your Self Esteem.