Today is day 16. The sixteenth consecutive day on which I am walking 5 kilometres above and beyond those distances I would generally cover on an average day. After today’s walk, there will still be 33 days to go. 165 kilometres. The 5×50 – a fundraising event which, for me, is challenging less because of the actual distance covered and more because of finding the time to do it. When I signed up, I naively imagined it might be an opportunity to have an hour ‘off’ each day, a chance to just think and walk and be alone. Of course, the reality is that most days, time constraints mean it has to be done pushing a buggy or a wheelchair, and almost always under pressure to get somewhere fast. But I’m enjoying it: the weather’s been good, the pace is quick, it’s taken me to places I don’t often go and forced some long family walks and days out which we might otherwise have missed. And as always, physically doing something tangible and visible makes me feel mildly less helpless and inadequate in the face of my daughter’s future. Very mildly, but it’s something. Better than sitting still.
So really, as the Head of Deliverance (‘Twenty-Twelve’, if you haven’t watched it, please do!) would say, that’s all good. And yet, I’m feeling low. Fragile. Easily knocked down, despite the sturdy speed walking and growing calf muscles. And this is where things start to get hard to explain.
When people feel down or are in a bad mood, our usual human reaction is to ask ‘why?’ and ‘what’s happened?’ Often, and of course I generalise here, there are answers to those questions – some identifiable event or occurrence which has recently happened to make that person feel bad. But when there isn’t an answer, the sadness or the bad mood seems less rational, less justified somehow – why are you feeling bad when nothing bad has happened? It’s pretty simple cause and effect I guess. The problem with this is that the person feeling bad can then also end up feeling like a fraud and a drama Queen, seemingly finding reasons to feel low when in fact, nothing has changed. Obviously, you’ll have gathered, I’m no psychologist. These theories are based on nothing more than my own experience, the experience of feeling low, having no quantifiable, tangible explanation or reason to provide for my ‘lowness’, and consequently feeling guilty and fraudulent on top of the original low.
I know this sounds crazy and over-analytical, but hear me out. If you tell someone, even a close friend or a family member, that you’re having a bad day, feeling unhappy, want to cry, they will invariably ask you why you feel this way and what has happened to cause it. If you then say ‘nothing’, their sympathy and support, I suspect, is likely to be a little diminished. It’s a little like the childish response ‘because I am.’ Why are you sad today? Because I am. Hmm. We like to understand things, to be given reasons, to be able to provide answers and fix problems. If we are given nothing to fix, what then?
You see, the underlying reason for the lowness, is Rett Syndrome. Of course it is. But Rett Syndrome, unless you are one of a handful of highly expert scientists on whom my hopes rest, is pretty much unfixable. More than that, Hannah was diagnosed three years ago. It’s not, many may feel, a valid reason for feeling miserable TODAY, any more than yesterday or tomorrow, if nothing has actually happened. Sometimes, when my husband or I admit to others that we are having a bad day, the question will come back ‘why, what happened?’ and the answer is usually ‘nothing’. You simply can’t keep saying ‘well, Hannah has Rett Syndrome, that’s what happened’, it just doesn’t wash. And if you try to explain what actually happened to make you suddenly want to curl up and cry, such as ‘I saw a little girl with bunches who reminded me of Hannah’s bunches before she started pulling out her own hair’, you sound like someone who is walking around life looking for reasons to feel sad. Self-indulgent, melodramatic, crazy. Call it what you will, it just doesn’t sound like a reasonable explanation for your sudden sorrow. Except it’s not sudden, it’s chronic.
As it goes, things are not too bad at the moment. Hannah is still highly unsteady and shaky but she has walked between rooms a couple of times recently, her new medication is not wiping her out like the last one did and her splint seems to be helping. We even had a fairly positive pediatric appointment. It’s true that she has been shouting and crying a lot, waking absurdly early every morning with incessant screaming, and (TMI warning) filling her morning nappy to the point of requiring bedding changes and showers, every morning for the last three weeks. These things are difficult, but they are normality, they do not bring me down or make me want to sob. Yesterday morning started in exactly that way, but we dealt with it as usual, and carried on unperturbed, in good moods. The thing that floored me completely and unexpectedly yesterday, was the briefest of glimpses of a little girl who used to be in Hannah’s group at nursery.
It was a beautiful sunny day, we had walked 3 kilometres, pushing the buggy and wheelchair uphill much of the way. Hannah had fallen asleep awkwardly onto the tray of her wheelchair when we found ourselves walking a few metres behind a family of four – the little girl Hannah’s age and her younger brother. She was skipping next to her mum, swinging her hand and chatting away. I should have called out to them, made an effort to catch up enough to stop and chat, but I couldn’t. I was fighting tears which had risen up out of nowhere and feeling like I had been punched in the stomach. I walked the next kilometre with my head down, shoulders silently shaking, knowing that if I actually gave in to the tears I might not be able to stop them.
Thereafter, the daily challenges which we usually take in our stride and can even smile ironically about, were acutely painful. The meltdown in the park, the need to carry her (she is now 3/4 of my weight) some distance when she simply refused to walk any further, the throwing and hitting of fork, food and us, I noticed them all. Each of her shaky, wobbly steps felt like an additional brick added to the pile which had been unceremoniously dumped on my shoulders by that one glimpse. Hannah smiled most of the way home, found her brothers’ buggy-board acrobatics hilarious and was affectionate at bedtime; the boys thoroughly enjoyed the walk and the woodland explorations; they all happily devoured a fish and chips treat en route home. There was much to be enjoyed and celebrated throughout the day, but the dull ache of sorrow had been brought to the surface in that one moment and I couldn’t make it subside.
If you asked me whether we had a good day yesterday, I would say ‘yes’ because we did, and because saying ‘no’ would lead to the question ‘why’, to which I could only reply ‘because we saw a little girl, for about three minutes, who used to go to nursery with Hannah’. Now don’t try telling me you wouldn’t think that answer would make me melodramatic, mad or just inherently miserable!
The ‘good’ news, for me at least, is that I’m not any of those things, and it’s not just me. I first read the article below, about chronic sorrow, a couple of weeks ago, and although I find it desperately sad to think that it applies to me and to people I love, it is also immensely reassuring to realise I am not, in fact, a miserable mad woman. I bang on a lot about grief and sorrow and the total rubbishness of Rett Syndrome, because I have to. Nobody’s going to sponsor me or help us raise money to find a cure for this thing if I talk about how lovely Hannah is and how Rett Syndrome has made me stronger and how much joy and laughter all my children bring me. So I do talk about the bad stuff, the hard bits, and I don’t doubt that there are some people who read my posts and blogs and emails and newspaper pieces and wonder ‘why isn’t she over it? Why doesn’t she just move on and stop getting all upset?’ ‘Why is she still on about this sorrow, three years after diagnosis?’ In all honesty, sometimes I’ve wondered those things myself! Which is why this article is, to me, something of a relief. If you’ve persevered with reading all this ramble, then thank you, and please take a couple more moments to read this. It’s shorter, and far better written, I promise!
As for me, I’m off for a 5k walk in the sunshine.