The Secrets to a Long Marriage – an Autistic perspective

It’s our 11 year wedding anniversary today (16 years together). 11 years since we said ‘I do’ on beautiful Ashwem beach in Northern Goa.

I must confess we both forgot this year 😳 but Facebook compiled a lovely photo montage to remind us…. This included a rather apt picture of stormy seas taken on a diving holiday one Christmas in Tenerife! 😂 Thank you Facebook, we know, it’s not been an easy ride.

We have celebrated today with a family exercise session in the garden. Sunshine, sweat and H providing moral support by shouting ‘Mumma wants a pudding!!’ repeatedly whilst I wobbled through burpee tuck jumps…

So much has happened since I wore that impossibly tiny, impossibly beautiful dress. I can remember so clearly how wonderful it felt on my skin. I can remember looking into N’s eyes as the sun set around us and thinking he was the most handsome man I’d ever seen. I can remember the magical sitar players serenading us and feeling relief that we’d convinced our wedding planner to cancel the ‘surprise’ local wedding singer ‘performing all the favorites like Ronan Keating’ 😂

After the wedding we spent a week hanging out with our families. We hired mopeds and explored the coast. We drank cold Indian beers and messed around in the feisty sea. We ate deliciously fragrant curries and drank intoxicating palm and cashew Fenny. We hurriedly ate ice lollies already half melted in the sweltering heat.

A week later and we grabbed our backpacks and caught a flight further South to beautiful and exotic Kerala. It was wonderful to be alone again with two precious weeks of adventure stretching ahead. In true back packing style we weren’t sure where we were headed, we had no accommodation booked. It was only us and a copy of ‘Lonely Planet’ much like our original traveling adventures 4 years before. The highlight was 2 nights on a romantic wooden houseboat in Alleppey, travelling the backwaters, spotting wild kingfishers, meeting locals when we stopped off in tiny villages. It really was paradise.

It feels strange to remember our life back then, so self indulgent, no responsibilities. Just us two very much in love and excited for the future. The last 11 years seem to have raced by and I don’t quite understand how we’ve crammed so much living into that space.

We bought and sold our first flat (famed for the kitchen parties we held there) then bought our proper, family home by the sea.

We made 3 children including our Angel Pablo. The heartbreak of losing him during pregnancy forever changed me and put a strain on our marriage. L refers to himself as ‘your first son who lived’ and both boys talk about their brother in Heaven. Only N is quiet on the subject, preferring to live in the now, which is undoubtedly healthier but impossible for me.

We were both made redundant (at different times) and had to rethink our careers and financial obligations. Despite many years worked in HR management frequently being the bearer of bad news, nothing prepares you for the full on kick in the gut rejection of losing your job.

The June that L turned 3, I think we may have been the happiest we’d ever been. We were fit and healthy, we had a lovely home, we were enjoying trying for another baby. We excelled in our well paid jobs. My mental health was good following CBT and effective meds. I look at photos from L’s 3rd birthday and I look happy, young, pretty. I love those photos.

Two weeks later age 39, I found out I was pregnant with H. We were over the moon. Two weeks after that and I got my breast cancer diagnosis.

I’ve shared that journey with you, I don’t want to rehash it now. But what I want to say is that whilst I did recover from cancer from an oncologists perspective, I have never properly recovered ‘me’. My body and brain have aged significantly. Chemotherapy and radiotherapy physical age you and cause cognitive dulling. I’ve been thrown headfirst into a chemical menopause and all the joy that brings. And of course I’ve had several surgeries leaving my torso a patchwork of scars which are hard for me to look at even now. I don’t feel young, or pretty anymore. I feel lucky to be alive, but I don’t feel like a woman.

H was born healthy at 34 weeks and was a dream of a baby. My active cancer treatment finished and we agreed I would not go back to work in HR but would focus on our boys instead.

Then of course while H was a toddler, L and I discovered we are Autistic. Whilst this discovery in itself was a welcome relief and has brought many positive changes to our lives, the journey to diagnosis was messy and winding, so many hurdles to trip over and professionals to joust with. Now we are on that same path with H and although we are much better equipped for the fight it is exhausting trying to ensure our boys get the education they deserve.

People say Autism is an invisible disability but the truth is you do feel invisible because the Neurotypical majority who run schools and businesses and medical services don’t understand our needs. It’s easier to blame us and label us as difficult or demanding than make the reasonable adjustments we’re entitled to.

I wonder how I sound to you? Ungrateful? Negative? Miserable? I don’t want to sound like that. Because I am a fighter. I’m a survivor. I try so hard to be positive and I’ve had to be so resilient through my life. But I’m tired. And angry. And sad. I don’t think it’s fair that I’ve been tested so much, time and again. Most of all I don’t think it’s fair that I’m not the wife N deserves.

I’m not that slip of a girl who married him on that heavenly beach. I’ve lost my looks, my confidence. I adore being a mum and love my boys completely, but as my life responsibilities

have increased my attention on my husband has suffered.

When it was just us two, he saw this career focused, successful, slim, sexy girl who he admired and he wanted to show me the world and heal my past hurts from a traumatic childhood. But I was just masking. Inside my head is chaos. My executive disfunction is my biggest weakness. I struggle hugely to plan, organize, execute. I stumble from one missed appointment to the next trying to keep the house clean and everyone fed, whilst earning £9 an hour as an Autism trainer, a job I love but don’t really have time for.

And I know N doesn’t get it. He wants to know where that driven, focused plate spinning career woman has gone? But she wasn’t real, the only reason I was so good at my job back then is that my life was my job, my job and N. Autistic people have a remarkable ability to hyper focus. So to do my job well I hyper focused on it. It had my full and complete attention and when I wasn’t at work, N had my full attention. But if you throw 2 other Autistic humans to care for into the mix, plus a life threatening illness and a bipolar diagnosis, is it any wonder I’m not keeping up?

I want to be that girl again. I want to have date nights, go running together, explore the world, just us and our backpacks. I want to have hungover Sundays on the sofa, binge watching tv series and eating takeaway. I want to travel to meet you in Lapland and Sweden. I want to camp in the freezing cold on the South Downs for Valentine’s Day. I’m sorry I can’t keep up. I’m sorry I’m a rubbish cook and that the boys always come first. I’m sorry I’m not dynamic or driven like I used to be. Executive disfunction is not a choice, its part of me, it’s my brain wiring. It’s why I try and keep life simple, limit people, places, choices. I don’t have the time to hyper focus on it anymore, I have too many competing responsibilities. And if you think back, even then, when I was pretending to be superwoman, my frequent meltdowns and reliance on alcohol were a huge red flag.

So what I want to say to my husband and to me, is thank you, congratulations, we made it to 11 years. I hope we make 11 more.

N, I hope I can find my lost sparkle so you admire me again. You deserve the best. The boys and I love you so much. And the cats of course! Last year we spent our wedding anniversary in a remote New Forest cabin with our own hot tub. This year we are in lockdown at home, waiting out this horrid virus. Regardless, I am grateful and I love you. Always and Forever. Your Neuro-Difficult Wife xxx

We four, 75% Neurodiverse, 100% loving each other.

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