Thinking Unthinkable Thoughts: The Fear Of Losing My Mum

Somehow, I have managed to not talk about Johnny Partridge on this blog. How have I managed to do that?

Johnny is a singer/dancer/actor/sweetheart who I first discovered  as part of the wonderful Christian and Syed  ‘Chryed’ relationship in the British soap opera EastEnders. Through that fanbase, I found some of the people I still count as my close friends, and we have followed both Johnny and his costar Marc Elliott for six years through various different projects. 

I am sure I will dedicate a whole blog post to Johnny and the astounding effect he has had on my life over the years. It isn’t this one sadly, but suffice to say that he has treated me, my friends and our families with more care, love and importance than I have ever seen in a fan/star relationship. 

What I want to write about today is something that happened the other night at his intimate, emotional one-man show Stripped. 

In the last year, Johnny lost his mum after a long, awful battle with Alzheimer’s. He talked about it, as we knew he would, and sang a song he wrote for her, set to the backdrop picture of his hand resting gently on her forehead as she lay ill. I knew that this was going to make me emotional. We lost my own nan to vascular dementia several years ago, and have unfortunately tasted the absolute evil that is this disease. But, as he sang, I found tears pouring uncontrollably down my cheeks for another,somewhat unexpected reason.  

In the song, and in the picture, I saw realised my fear of losing my own mum. And I was inconsolable. 

My mum dying is something I’ve had nightmares about since I was very, very young. One of my oldest memories is watching Princess Diana’s funeral with my mum (I must have been about five) and then immediately having a nightmare about her being in the coffin, me running behind it desperately, wailing until my voice was hoarse. 

I’m very close to my mum. In the past, I would say it has verged on a somewhat unhealthy dependence. We’ve clashed, and clashed badly, taking things out on each other because we existed so closely to one another – but I know my mum has always had my back, and looked out for me in a way that no one else has. 

As I get older, even as I creep into further independence, I’m becoming more and more aware that some day I won’t have her there. The thought of that is enough to freeze me with such pure terror that I’m not sure I could survive losing her. The hypothetical of it destroys me. I have looping images of me crying and screaming and banging my fists on the floor and head on the walls, desperately trying to bargain with the world that it not be so, and that I can’t do it, and that my world is over and what’s the point any more. 

It’s not that I wouldn’t have any support were we to lose my mum. I have people around me who love me, who would take care of me, and who would gladly hold my hand through my violent bargaining grief. I’m so very lucky in that respect. But, ungrateful as it may sound, that knowledge doesn’t do a lot to allay my fears. 

My mum is and always has been my safe place to fall. If something terrible happens, I want to tell my mum first. If something wonderful happens, I want to tell my mum first. If my world is being torn apart, I want my mum. If I’m lost in a swirly downward hate spiral, I talk to my mum. If life is just toddling along, having my mum there makes me feel better about the road ahead. 

She has been my number one cheerleader, but also my number one consoler if I failed. We’ve had our ups and our downs, our periods of time where we’ve done nothing but hurt each other, our moments when we have stubbornly failed to understand each other – but, despite it all, my mum is my one constant solid base. 

I wouldn’t even have my autism diagnosis of it wasn’t for her and her refusal to stop irritating the psychiatrist until he gave us a referral. She has no problem with the fact that I still live at home, telling me that I don’t ever have to move out if I don’t feel able to (living independently went really badly for me the last time we tried it). She bolsters my voice when I speak, and is my voice when I can’t.

My mum is not an ‘Autism Mom’ (thank everything even mildly holy for that). She’s also not perfect (she’s neurotypical, after all, and we must show compassion to that poor unfortunate neurotype). But she’s my mum. She is the centre of my whole world. Everything spins around her. 

I feel like I should start some kind of preventative therapy straight away. My mum will probably be with me for another twenty or thirty years (or more!). But I expect it could take decades to get to a point where I could even hope to mentally survive the loss of my mum. So I should probably get started now. 

And I’m only half joking.

The inevitability of it is what gets to me. It’s not preventable. The knowledge that I will go through this one day, regardless of how far away that day is, is like a wall with glass shards mixed into the concrete rearing up in front of me. It seems insurmountable and painful, jumping out of the night to stop me quite literally in my tracks. 

I try to focus on the now. But my emotional experience is like my sensory experience – I can’t filter it, sort it, or pluck out the bits I don’t need. I feel everything, all the time, at the same time, whether I like it or not. And I can’t drown out thoughts with a pair of noise cancelling headphones and a decent tune cranked up to the max.  

I adore my mum. I love her to the moon and back. So I have to focus on that.

This isn’t what I imagined my first post about my mum to be like. I expected it to be a wonderful rhapsody to how amazing and courageous my mum is, and how fabulous and inspiring her story is. I guess it kind of is like that, but there’s a layer of desperate and threatening morbidity to it that I never intended. 

I blame Johnny for that. I blame him for a lot of things (particularly when there’s a noticeable dip in my bank balance). But, on the other hand, I know that it’s something I have to face and something I have to think about. Blocking it out helps no one. We all need to talk more about these sorts of things. 

So, as well as blaming Johnny for being emotionally compromised, I guess I should also be thanking him. 

Which is pretty much the normal state of affairs when it comes to Johnny. Damn him. 

So I cleared my tears. I danced along. And I made sure to text my mum to remind her just how much I love her. 

Author: QueerlyAutistic
Erin Ekins is a queer autistic writer, speaker and attempter of activism. She has an interest in all areas of autistic social justice, but has a particular passion for improving understanding and acceptance of the intersection of autism and queerness. She runs the blog and is the author of the upcoming book 'Queerly Autistic: The Ultimate Guide for LGBTQIA+ Teens on the Spectrum'. By day, she works in campaigning and influencing at a disability related charity, but, by night, she is inhabits a busy space between angry internet person and overly-excited fangirl.

1 thought on “Thinking Unthinkable Thoughts: The Fear Of Losing My Mum

  1. I lost my mum to a cancer at 18 years old. She was first diagnosed when I was 14… riding high on hormones and other teenage stereotypes of the over weight bullied kid… and this gave them even more ammunition. I had 1 best friend. Thankfully my mum beat her first round with cancer and we had 18 months of normality before round 2 began only this was a fight she was never going to win. I went from being a 17 year old in the throws of first love to being a full time carer, attending college and working part time. My memories of that year are pretty vague… but she was my mum… I should remember everything, but the sad reality is, I don’t. I wish I had told her every single second that she was my hero, how much I loved her, how much I looked up to her. But instead I spent my time angry that I was losing her and angry at my family for trying to hide it from me. It was quick for my mum. I spoke to her Friday… after she had gone through her radiotherapy… I noticed she had a little cough. .. She died at 3am on the Sunday from fungal pneumonia. I saw her the Saturday, a loud oxygen machine helping her breathe as she slept. Her last words to me were “I love you” mine to her were a choked hysterical sobbed “love you too”, as I ran out the room.

    I miss her every day. She never got to see the women I am today. It’s been 10 years and though I have learnt to cope, the pain has never left me. She will never see my kids, she’ll never meet the love of my life, or the house we just bought together… nor meet my furbaby or see me get married.

    Every day I wish I had said I love you… every second.

    Your post really hit home… I wish I had started preparing myself for it earlier.

    There is one thing my mum taught me that I think might help… It’s one thing to brace yourself for the deaths of loved ones in the future. But just remember to make sure you arrive at the end of your life screaming “shit yeah… what a ride.”

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