A Glorious Mess

I intensely dislike the phrase ‘move on’. It reminds me of television shows where a policeman stands guard in front of some sort of tragedy, waving morbid or overly curious onlookers away with “Move on, move on, there’s nothing to see here”. I don’t think my objection is to the word ‘move’ as much as it is to the addition of ‘on’. Move on, keep going, let it go, forget it happened, nothing to see, nothing to see.

I prefer the term ‘move past’. That, to me, acknowledges that there WAS something to see. Something was there, or you wouldn’t be trying to work out how to get away from its vicinity. Something mattered enough to you that you had to stay there for a while, so not admitting, acknowledging or accepting that makes it feel to me like society is trying to pretend an awful lot that things don’t hurt, that they don’t have value, that everything – and everyone – is a commodity. I am not a commodity. I matter. You matter to me. Well, maybe not ‘you’ in the sense of the people reading this, if I don’t know you and you’ve never met me, but you still matter, even if we’ve not been introduced.

I have a friend whose husband passed away after a long and unpleasant battle with lung cancer that metastasised into brain tumours. He didn’t deal well with the end stages of that progression, and he took it out on the people around him. His wife, my friend, who was also going through a major medical recovery at the time, copped the brunt of his anger, his pain and his denial of the terminal prognosis. It took about 18 months from diagnosis to death, and in that time, he deteriorated rapidly. He refused to look after himself, meaning she had to add his needs to her already large load. She stopped working to become his full-time carer when she really needed care herself as the result of a body that was in need of knee replacements. She had the surgery so she could continue to help him, but nobody helped her when she should have been resting and recovering. He abused her verbally the entire time, even in front of carers and health professionals. When he died, she was shattered. She had lost someone she loved, even though he was mean to her. She had done the right thing and shouldered the load out of respect for the marriage bond. She was hurt, she was tired, and she was still recovering from her own surgeries. And yet, within six weeks, people were questioning why she hadn’t moved on. “But you knew he was going to die”. “He was horrible to you anyway”. “It’s been long enough; you need to move on”. How precisely was she supposed to do that, without support or understanding from the people around her? What was so wrong with being upset that her love had died? What was so incorrect about grieving honestly? Absolutely nothing. It simply made other people uncomfortable to see real life being played out in front of them, and they preferred to not have to deal with it. Move on.

My friend chose to move past instead, and gave herself time to really understand and process what had happened to him, and to her, and to her family as a result. She grieved, she cried, she asked “why?” over and over again. Eventually, she asked less. After a few years of honest tribute to a long marriage and the impact his death had on it, she started stepping out in the world again. Kudos to her for not taking the easy path and denying her sadness, because generally it only comes back to hit you in the head later down the path if you haven’t dealt with it properly at the time.

The same happened to my sister. In 2021, her son died. Her son. The little baby who stopped breathing at a few months old and was found blue in his cot. The baby she kept resuscitating until the ambulance crew arrived and stabilised him. The baby the doctors told her to ‘let go’ because he had so many other disabilities and medical conditions. He had arthrogryposis multiplex congenita, which just means his major joints were frozen so he couldn’t move freely. He was surfboard stiff rather than being a wriggly or floppy baby. He had a pacemaker installed at only a few weeks old. He couldn’t swallow properly, would aspirate if spit went down his throat,  and had to be peg fed. He had epilepsy. The time in oxygen tents as part of his resuscitation treatment led to vision impairment. She was also told his brain was atrophying. Caring for him was hard work. For 19 years, she went to him every four hours, day and night, to feed and change him. It was easy enough when he was little, but a full-sized 19-year-old, with twisted hands and legs that have contracted from being unable to be used required a hoist and a second pair of hands. One year, refusing to listen to the doctors, she sat by his side in ICU and high care for 63 days. She knew if she didn’t stay, because he couldn’t communicate and the medical staff couldn’t read his needs, that he would deteriorate, and she would again be pressured to ‘let him go’. When he passed away, in 2021, aged 19, she mourned. She had lost her baby, her little boy. He never got to leave home, to learn to drive a car, to have a girlfriend. He never even got to walk and could only manage to control his body well enough to produce a very occasional word. But he could laugh, and he could smile. He only knew the life that he had, and he enjoyed engaging with others while living it.

Like my widowed friend, within a few weeks people were asking my sister why she hadn’t moved on. Why should she? Didn’t his life matter? Didn’t 19 years of being a parent give her the right to miss him and to be sad he wasn’t there anymore? Didn’t walking past his empty room every day, or seeing the showering chair they used for his cleans up each time she walked into their bathroom still hurt? Telling her to be thankful her life was easier now didn’t help, given she only had that freedom because her son no longer existed. She has also chosen to move past rather than on. We have talked together, and cried together, and remembered together. He would have been 21 in four weeks’ time from the writing of this post. I will still send a card, that my sister will probably put on his grave, to show that I have not forgotten he was here and that he will always matter to me. I have bought a sunflower spinner for her patio because sunflowers are his token. I have purchased three more of the brightly coloured pinwheels I get from the variety store for my sister to put on his grave. For some reason people steal them, so each time we visit I bring more with me. I’m not sure why anyone would think it okay that they or their child leave a cemetery with a spinner that they didn’t go in with, but I have long given up trying to understand people’s actions.

Ultimately, we need to change our language. Because we move on, instead of moving past, we don’t deal well with whatever we were moving on from. We pretend everything is okay when it isn’t. We don’t let people cry or mourn or talk about loss. We find it too uncomfortable to be in the presence of people who are suffering because we deny ourselves the right to do so. And then, further down the path, we fall apart because we haven’t acknowledged the reality of our grief or pain.

Some parts of life hurt  – a lot. It takes time and support to deal with that hurt and loss. I’d rather be someone who was successful at walking honestly through the valley and finally ascending the mountain than someone who got to the top of the hill by turning my back on suffering and, because of that, never learned from my mistakes – or those of others. I’d also rather not deny that people mattered to me even if I no longer matter to them. Honesty and integrity are vital ingredients in creating caring communities and respectful relationships. Let’s help each other move past hard times in our lives.