The pain of interhemispheric, intergenerational perimenopausal autism

Or "On why I feel like shit today"

Photo by Kelly Sikkema on Unsplash

Today marks one week since my dear Dad died suddenly and unexpectedly in hospital. Dizziness still overwhelms me as I reel from the shock call from Mum to get here to the UK as soon as possible, and my immediate 30 hour journey across the world. Whether the dizziness is from long haul travel or is an autistic manifestation of grief, I don’t know. What I do know though is that it is a constant reminder to slow down, remember I am dealing with a lot, and to pace myself.

Grief is not a race but, if it is, I am losing.

I have deliberately doubled my anti anxiety meds dose to help numb the pain, and will reduce my dose once I am home in Aotearoa New Zealand. Which will be in thirty hours starting from 10pm tonight. As a time agnostic, I am baffled by the fact that I depart on an English Tuesday dinnertime and arrive on a Kiwi Thursday dinner time - a 48 hour time difference, with only 30 hours travel. Dizziness returns at the idea of trying to work that out.

Fitting back in with family life here has been seamless, and I have been asking myself if I am masking here. My accent immediately reverted to the North West London variety on arrival at London Heathrow, where I met my beautiful toddler nephew for the first time. My niece is four and I have had the best couple of weeks being an Aunty for the first time in my life!

I have missed out on so much living half a world away - births, birthdays, anniversaries. I was lucky that my Mum was so astute to Dad’s undiagnosed condition, and I was here in time for Dad’s death. Lucky that I was able to hold his hand, to convince him to try to eat, to call the ambulance, to insist the hospital doctors tell us what is really going on, to tell the nurses to stop taking his blood and to stop monitoring his blood pressure, to give him morphine, and allow him to die peacefully. It has been a lot.

In the back of my mind, I have known that I could never have balanced this emotional labour of being a daughter to ageing parents with the emotional labour of being a mother to my autistic children. Had I brought my children here with me, I would not have been able to spend precious hours at my Dad’s sickbed. I would not have been able to balance brief hospital cafe catch ups with friends in between the ward doctors’ rounds, and sitting holding Dad’s hand. Holding Dad’s hand across the bed from my Mum and my brother. Stopping Dad from trying to remove his oxygen mask, and pleading with the doctors and nurses to give him something to help him relax, because the mask was triggering his sensory issues and making him feel panicked and claustrophobic. When the doctors said it wasn’t panic, it was “agitation and delirium”, I knew him well enough to know he still needed something to reduce his characteristic panic.

Anxiety is a trait carried down my family line, and I am at the point intergenerationally where this stops.

We can medicate these issues now, and live our lives rather than enduring them.

As it is in life, so it should be in death.

Living halfway across the world is both a blessing and a curse. Feeling landlocked right now, just north of London in the lovely leafy Hertfordshire where my family have relocated to, I am claustrophobic and pining for the empty beaches and enormous skies of Aotearoa. Once I get home, I will feel bereft of my UK family life and family love.

Having so fleetingly been gifted the opportunity to be an Aunty, I extended my stay by three days to spend a lovely long weekend with my beautiful niece and nephew. Making memories and building bonds that were severed last night when we all had to say goodbye, and our lives all revert to “normal”.

I have deliberately doubled my anti anxiety meds dose to help numb the pain, and will reduce my dose once I am home in Aotearoa New Zealand. Here, I keep looking over the photos of my Kiwi husband, children and cats, missing them all terribly. There, I will look back at the recent family photos of my UK family, valuing this precious time together, missing them all terribly.

Before my long haul return journey starts this evening, we have a planning meeting this morning with the funeral directors to make decisions on Dad’s funeral. My Dad’s funeral. His funeral that I can’t attend because it is another nine days away, and I have two autistic children half a world away who need me home now. I am feeling torn and bereft of everything and everyone, even when I still have them close by.

The myth that neurodivergent people are devoid of feelings and emotion is an incredible disservice to us. We negotiate the world every day trying to numb our enormously overwhelming feelings and emotional responses. Our empathy goes well beyond that of any non-autistic, as we sense the emotions of those around us, and unfalteringly take them on as our own, with no capacity to release them.

Perhaps this is why we are told we appear socially awkward. Unable to look people in the eye for fear of them offloading their pain and us adopting it as our own, and carrying it halfway around the world in our hearts.