Living with Rett Syndrome: Walking in someone else’s shoes

Beth Johnsson

shoes Living with Rett Syndrome: Walking in someone elses shoesIn a few days’ time, I will be playing at single parenting for approximately 89 hours. It’s a daunting prospect in many ways, not least because I am increasingly unable to carry the six-year-old up or down the stairs, and because there is not a buggy in existence which can be pushed once they’re all in it.

Ask me next week, and I’m sure I’ll have more than one ‘amusing’ anecdote to tell, will have learned more than one lesson the hard way, and will have more than several precious moments to remember. But that’s next week; ask me today, and I can only relate the anecdotes and lessons learned from the decision, MY decision, to put myself in this situation in the first place.

The four day absence of my husband is to allow him to travel abroad for a family reunion. His relatives, including his parents, are now scattered across the globe, and an opportunity to see them is scarce. It’s an opportunity not to be missed and, of course, there was never any question that he would go. But then the inevitable question came: couldn’t he take the grandchildren? Or at least a selection thereof? A reasonable request, and one which, no doubt, many mothers would have embraced as an opportunity for peace and sleep!

But the question alone made my stomach tighten and a wave of physical nausea rush through me. I tried to be rational and reasonable, I really did, but when we got as far into the conversation as deciding who would be the chosen child, and each name was suggested and considered, I couldn’t stop the tears. I don’t have a profound fear of flying (or of foreign climes!) and I don’t doubt that my husband would be every bit as protective and careful as I would be; but I do have a fear of the infinitesimal chance of something randomly horrific happening to my children, and I do doubt that I will be allowed to keep the most precious things I have. I wonder why.

My reluctance to let the children go was the cause of some discord. Not with my husband, he knows why. He understands where my protectiveness (rational or not) comes from, he feels it too. But not everyone does. The protectiveness was interpreted as obstructiveness, the fear as deliberate denial. My attempt to explain that perhaps living with Rett Syndrome causes invisible damage and creates imperceptible repercussions which others, even those closest to us, just don’t see, was taken as an accusation and described as ‘unfounded, unfair and plain wrong’.

Atticus Finch from To Kill a Mockingbird, my all-time literary hero tells his children: ‘you never really understand a person until you climb inside of his skin and walk around in it’ – a variation of the native American proverb ‘don’t judge a man before you have walked a mile in his shoes.’

It’s a tough model to live by. We all make judgements about others and presume how other people’s lives are, even if we don’t intend or want to. But, like Scout, I have tried to listen to Atticus. I try not to presume to understand anyone else’s life except my own and, in the case of those people whose lives I truly want to understand, I do try to imagine walking around in their shoes for a while. But you never truly can. At some point, at the end of a long, hard, lonely day, you get to take off their shoes and leave them neatly by the door (or, indeed, chuck them out the window). Even if the slippers you then step into are far less comfortable, at least they are yours, and you can never know how uncomfortable that other pair might have become with just a few more steps.

So what do you say when someone whom you want to understand you, thinks that popping round a couple of times, noticing your shoes by the door and commenting that they look a little worn, means they understand what it’s like to live in them? Or that, having been given a pair of shoes very similar to yours many years ago, and having walked in them for a while, they know how yours feel today?

My sister has Rheumatoid Arthritis, Fibromyalgia and hypermobility; my Dad had a disabling stroke 25 years ago; my mum had lost both her parents and become a carer to her husband by the age of 40; my little girl is trapped inside her own body and cannot even tell me how much it hurts. I am as close to these people as I know how to be, but I have no idea how their shoes feel. I wouldn’t claim to. Sometimes, I think, the most helpful, most respectful and most loving thing you can do is to have the courage to say ‘I don’t understand’.

I love my shoes, by the way. I would happily walk another lifetime in them. True, they aren’t precisely the pair I’d imagined wearing when I was younger. Sure, there’s this one pinch that lingers distractingly and every now and then causes a bugger of a blister which really ruins the day, or week. But other than that, they’re the perfect fit.

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  • Karen Cundy

    Love your blog, as always. It’s not just about life with Rett Syndrome but about all our lives and how we can learn from the challenges we face; we’d all love big fluffy slippers but they would wear out quickly. Wouldn’t it be great if we could all walk in each other’s shoes for a day?

  • tardis mole

    To Beth Johnsson, thank you for not understanding. The most annoying comment I get is ‘I understand’. That makes me more annoyed than having to explain why I can’t visit a friend for tea or eat the food they ‘made specially’ and not be embarrassed or made to feel ashamed. I have Coeliac’s, Crohn’s, Kleppel Feil and nine strokes robbed me of twelve years of memories. My shoes are uncomfortable, when I can walk in them, but walk in them I shall. I’d rather no one else wore them. Not even in my lowest moments.

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