Personal Stories, ADHD

In My Life – A Story of Grief from a Neurodivergent Perspective

On the 29th December 2015, I married my long term partner in a small, beautiful ceremony in the Cotswolds, that brought to together so many of the people who matter most to me in the world. I walked down the aisle with my dad to the song In My Life by The Beatles. A song that is special as Liverpool is where I grew up and Beatle’s music has always been at the heart of all of our family occasions. It is also special because the sentiment of never forgetting all the people in your life you love or have loved, living or not, is a poignant one, and never more so than on a wedding day.

Little did I know that the sentiment of the song was to take on a new kind of poignancy several weeks later. One which would prevent me from listening to the song to this day.

On the 1st March 2016, I received the phone call that we all dread for most of our lives. I had a call from my sister who lives up in Lancashire, not far from where my parents lived. To say that my beautiful, wise, kind and loving mum, who was only 64 and had never been ill in her life, had died suddenly, at home, on that inauspicious, unseasonably warm March Sunday morning.

I have never found the words that can describe my shock and grief when this happened. People use different phrases such as “My world was turned upside down”, “I fell apart” or “my life as I had always known it came to an end” Of course I felt all of those things. But it didn’t explain the utter sense of loss I felt. A feeling of absolute incompleteness. An emptiness, a panic, a tsunami of emotion, an avalanche of thoughts and noise in my head that was screechy, piercing, loud and all consuming. The only word that ever made sense to describe the feeling was an article I read which talks about how, as an adult woman, losing your mum does not leave you with a feeling of being ‘motherless’. It is much worse than that. The writer called that feeling being ‘unmothered’. The word still feels painful for me to even type.

Grief brought with it the typical emotions, pain and behaviours any human being who has lost someone suddenly feels. I read a beautiful novella shortly after Mum died call ‘Grief is the Thing with Wings’ and it talked to me in such a beautiful way. The premise of grief being a human sized black crow that enters your life when someone dies, tormenting you, getting in your way, helping in some ways and leaving only when you don’t need him anymore, I found so poignant.

Only, my grief and intensity of emotion lasted way beyond the funeral, the learning to live without her, the moments of forgetting when I would go to dial her number, the sadness and the anger.

My black crow refused to fly away and something was telling me that I really needed him. Telling me that beyond the grief, this was something more. I sank into an anxiety and depression that deepened daily. Two years on, I knew that this had to be something more. Although people say that grief is different for everyone, and there is no time limit on how long it lasts, I was still walking around with the shrill, permanent raw nerve endings of physical and mental pain that we feel in the moment when someone first receives the news of a sudden death. This simply was not right. And more than, that as I reflected about it, I realised that there had been many such times as this, though clearly nowhere near as intense, that I had experienced since childhood.

My curiosity and reflection, along with the support of many clinicians, eventually led me to the conclusion that I had ADHD. Subsequent assessment proved this to be true. This was the moment when so much of my life before made sense and for the first time ever in my life I felt self-compassion.

People with ADHD experience emotions intensely, and in grief their minds can cause them to hyper-focus on sadness often leading to deep anxiety and depression. In addition, the sense of loss and isolation can be crippling, as a source of strength and support has been taken away, leaving them feeling afraid of the world, afraid of their emotions and wondering how they can possibly carry on. And at times this can also lead to a much darker place, where they find they simply cannot go on.

Such was my experience of grief, which was made sense of once I had had the diagnosis. Since then, I have been intrigued by the amount of stories I have heard of women in their 40s, suffering with anxiety and depression on and off through life, who are receiving diagnoses such as I did. Not all have lost a mother, but there is something about this time of life that can be overwhelming for every woman, and more so for those with ADHD. We have children who rely on us, and at times we don’t feel worthy, we have partners who often understand little about our struggles, homes to keep, mortgages to pay, careers to maintain. We have to make sure others are fed, that health is protected, encounter problems calmly and maturely, have grown up conversation at dinner parties, struggle our way round supermarkets, remember appointments, worry about the future, face the reality of ageing or infirm or lost parents. And most of the time, we feel incapable of even looking after ourselves. We become children again. Overwhelmed by the world and not sure if we can maintain the perception that we are adults in control of everything around us. We want to hold our mummy’s hand and look up while she tells us it is ok, we can do this, we will be ok. But when you turn around, and mum is no longer hold on to the back of the bicycle, we wonder how on earth we are going to be able to keep pedalling alone.

But of course, thankfully, most of us do. The wider ADHD community is important because knowing what we feel is ok, that others understand and that we can sometimes laugh at ourselves, and the  things that we do, brings some relief. The pain and the struggle doesn’t go away, but we learn to walk alongside it. We learn to hold its hand, say it is ok, you can do this, you will be ok.

We are always looking for people to share their experiences or thoughts on topics related to Neurodiversity. Please get in touch if you are interested.

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About Helen May

Helen is MD of Leadership for Extraordinary Futures, runs a Community Interest Company Diverse Futures, was diagnosed with ADHD in her 40s.
  • UK