Invisibilia is one of those podcasts which never fails to impress me. Every episode is beautiful, crafted, intelligent and interesting. Every episode leaves you thinking about some aspect of the world in a new way.
This episode was no exception. In fact, it may be my favourite episode from either season.
In it, host Lulu Miller investigate human beings’ compulsion to find the solution to all our problems.
The problem she focuses on is that of mental illness. In the episode she journeys to Belgium where there is a town that has a very different approach to mental illness. Families in the town take in boarders, complete strangers, with severe mental illnesses. Some of them stay for decades in their homes. And it works.
As the episode continues we find out a key element in the success of this method is that the families who take in the boarders are not related to the boarders in any way, so they are not invested emotionally in curing, or fixing, the mental illness, and instead focus on accomodating and accepting it.
This by itself felt powerful. These people with mental illness were being accepted and cared for, just as they were, and that acceptance allowed them to live and be in their community.
But the part that really cut through to me was when Lulu explained that this system does not seem to work when the patient or person with mental illness is with their actual family.
The biological family of a person with mental illness cares too much and it creates pressure on the person to be fixed, or cured. To be normal.
It makes perfect sense of course. The parents, siblings, spouse of the patient have too much invested. They want their son, daughter, sibling, partner to be well, to be fixed, to be cured. They want the person they love to be ok and to get by in the world and have a good life, and because of that they sometimes cannot accept the differences and issues that make that person “abnormal”.
The strangers who take in the boarders don’t have those hangups. They see a person, whole and complete already without the added expectations of family.
It’s heartbreaking in its truth and simplicity, that the ones who love someone the most could be making them worse. The ones who want the best could be causing the worst.
It had real resonance for me. When our children are born we can’t help but have expectations for them. For me I didn’t mind if my child was sporty. I didn’t care if netball was the furthest thing from her mind, but I did care that she would read. Reading is something that plays such a big role in my family. And the idea that my child might not like to read felt alien to me.
When Eva was born and diagnosed as deaf blind, all my expectations were dashed. Both the unspoken and acknowledged ideas I had about who my daughter would be were all out of her reach and mine.
The pain I felt was because that life I had imagined for me and for her was ripped away from me. I had to learn to accept that she was Eva, and that’s all that mattered. I had to learn to accept that all the expectations, the milestone dates, the growth charts that other parents could look to for reassurance, would hold no reassurance for me.
The life of a special needs parent is the constant shift of expectations and hope, reality and acceptance. We don’t want to give up on our children, we want to believe in them, but we also don’t want to hold them to some arbitrary standard or normality that is neither helpful nor healthy.
Special needs parents are not dissimilar to parents of mentally unwell people, except that once we get past that initial grief we tend to get to a place where we know that there is no fixing special needs. Our children are not people to be fixed. We are freed from the idea that our child is broken, diseased and in need of a cure.
The grief we feel when our children are diagnosed is in part all tied up in our inability to be able to fix anything. We are left powerless to help our children in a way that we are used to. We have to accept rather than cure. Stand by and watch instead of fixing the situation. It’s an uncomfortable realisation, and one which is not easy to accept.
But I think most of us do come to accept it. And once we get to that place the world opens up for us and our children. We see their trajectory as their own instead of comparing them to their peers. We do our best to help them, without expecting miracles. We advocate for them without wanting the normal life our of our neighbours. We celebrate their milestones, however big or small, when they reach them instead of lamenting missed ones.
But it’s not always like that, and I can see where the mental health situation differs. With children like Eva we are forced to accept them as they are because they are born like that. Their personality grows and they are who they were meant to be. There was no accident or mental health switch flipped. We didn’t get to see a different version of them taken away from us or watch them change after a head injury. Eva was born just as she was, no more no less. And once I could accept that, I found so much beauty in it.
But I can see the challenge, the enormity, in accepting a family member and not trying to fix them when something seems so clearly to have gone wrong. I can see the urgent pull to cure an illness which came out of nowhere and so greatly affects that person’s ability to live in the world. That person who you love more than anything.
It’s a cruel but also perfectly fitting irony that the ones who love us can hurt us most, and that the ones we love might be better off in someone else’s care just because we care too much.
It’s a hard thought that a family member isn’t always the right person to help someone with a mental health issue. They might be better off with someone who can accept them, not try to fix them, because they didn’t know any other version of that person, and because they don’t mind which version they are. There is no drive to fix something you don’t see as broken, because you never saw it before it broke. It’s complete and whole as a person, because you cannot see what has gone or is missing.
While I see the parallels of this “problem with the solution” to the special needs world in the idea that Eva wasn’t something to fix, she wasn’t a problem to be cured, I am comforted knowing I did come to accept and celebrate who she was. She was whole. She was complete. She was perfect. No fixing necessary. And I knew it.