Simply Wasting Away!

‘Everyone thinks cancer makes you thin. In fact I’m getting fatter and fatter’.

Ruth Picardie. Observer Life 27^th July 1997

In her own witty and inimitable way, Observer columnist Ruth Picardie, already addressed this subject in the above quoted column, but nearly 14 years later I think it needs another airing. I recently blogged about the word ‘fat’ being the ultimate swear word, and how by admitting to it and being honest about who we are we can stop skirting round the issue of weight. I am, by NHS standards, obese and seriously in need of losing weight. I’m also seriously in need of a new nervous system and I think the wait for both of those things will be equally long. The myth that Ruth Picardie stuck a pin into all those years ago was the myth of illness and emaciation; the Victorian romantic fascination of consumptives simply wasting away to a hollow cheeked, but beautiful end. As Susan Sontag brilliantly addressed many years ago illness has its metaphors, and this metaphor is still alive and well in 2014.

One of the frequently asked questions when I say I have MS (not to mention all my other nagging problems) is ‘isn’t that one of those wasting diseases?’ After 15 years of living alongside this illness I have become a little bored of describing myelin sheaths as the cord covering electrical wires, keeping them safe, helping them transmit messages, so sometimes I do just nod and say ‘something like that yes’. Then I leave myself open to the inevitable come back as they take in my size 16-18 curves and say ‘well at least you look well’. This is the polite way of telling me that I’m not wasting anywhere as yet.

‘You look well’. It is so simple, and seems like a compliment, but of course women, and particularly women with MS, are ever so touchy.  Yet, in a world where people are now too scared to look well is looking fat going to be the next issue? Where I practice counselling I heard a woman with MS say to another ‘I would love to do the Race for Life, because of my mum. I’d go round on my crutches but I’m scared to do it in case someone reports me’. This is so sad it makes my heart break. The only perk of having such a variable disease is that sometimes there are up days, but if you can’t take advantage of those up days and do something fabulous for fun or something that will create meaning in your life, then you take away that person’s reason for living.

I was once confronted by a friend’s brother, who I’d never met before when I collected him from work. His first words were:

‘So you’re the one with MS?’

‘Yes’.

There was then a discernible taking in of my appearance as he slowly looked me up and down and said ‘well you look okay to me’. I was newly diagnosed then and although I felt disconcerted and somehow fraudulent because of what he said I didn't know why. This was before I’d had my eyes opened and realised I was firmly placed in the ranks of the abnormal; they don’t keep fit, don’t breed, don’t stay married, and don’t work brigade. I like it here. There are fewer rules.

Now I've become disability radicalised (this doesn’t just make me disabled and fat it makes me a spoilsport without a sense of humour) I jump on every phrase like this. I am ready with a handy quip or the straight forwardly challenging ‘oh I’m sorry, but I don’t understand what you mean by that?’ that makes them look at their shoes and question why they ever talked to me in the first place. The obvious and sarcastic answer to ‘you look well to me’  was ‘oh, sorry my mistake, I must run to the neurologists and inform him the MRI was wrong because you can clearly see there’s nothing wrong with me. Please share with me your long list of experience and qualifications’. In the moment though, these things are never said; I am often too disarmed to think quickly enough – a cognitive problem due to my invisible and therefore, non-existent disability.

People with disabilities should not have to defend themselves in this way, but they often do. I think the average person would be surprised by the myths and metaphors that still surround disability. It seems that these days the Mail and the Express are unhappy unless a disabled or sick person is visibly hobbled in some way – carrying a visual aid such as a stick or crutches helps with this and ironically if you are using a wheelchair you are often pushed right to the front of queues despite the fact that other ‘walking wounded’ individuals are still standing right in front of people’s eyes. The idea of the ‘worthy’ sick person is alive and well so after the obvious sign of being a cripple (maybe we should have a symbol stitched onto our clothing?) the sick person must be pale, wasted, badly dressed and probably very poor. They must look as if they are worse off than the hard-working, and getting on people. They must look as if they haven’t been able to struggle out the door at all times and the biggest rule of all is that they must always, always be wasting away.

There are millions of reasons people with disabilities put on weight, because we’re individuals and our reasons are as legion as yours. I was once asked ‘what do disabled people want?’ to which I replied ‘I don’t know I haven’t asked them all yet’. I can only tell you my reasons and common reasons such as the ones Ruth Picardie puts forward in her writing. Illness makes me sedentary because if every step feels like walking on knives or makes you feel as if someone is trying to prize your skull from your spine then walking is not a priority. There is the standard DLA/PIP question about walking twenty yards, but no nuance about whether that twenty yards feels like a marathon. I gradually became more and more sedentary because I simply was not comfortable enough and now that I can walk a little further thanks to controlled release morphine, I am scared someone will report me for walking that bit further. Weight bearing exercise is a no-no because that causes my muscles to spasm and joints to swell; it defeats the object when one session can leave me crippled for a week. Then add on the drugs – the steroids which pile on weight, the pre-gablin which has the side effect of piling on weight and the amitriptyline which has the side effect of piling on weight. Ruth Picardie also mentions the gifts brought to you when you are unwell; although you are grateful for the thought an everlasting supply of chocolate or cake seems to come through the door because people want to treat you and considering the limitations of the disease it’s hard to find treats in other ways so you succumb to chocolate.

 Comfort eating has been my friend for many years because it’s the best quick fix for feeling grotty, alongside a good book or a great film. I don’t smoke, and I can’t drink much due to the medication so I don’t have many vices left, instead I have cultured a dependence on Green and Blacks and carrot cake, or my worst downfall – chocolate Philadelphia on digestive biscuits. I love the comfort of great big milky chai tea lattes and red velvet cupcakes are a particular indulgence. Many of the activities I do involve eating such as meeting friends for meals or a coffee, cakes at book club or cherry bake wells at the cinema. I love cooking for friends when I can, but I need a complete re-education or an over-eater’s anonymous subscription to manage the way I enjoy food. So, these are the reasons I am fat. Every person is different, but I think a lot of people with disabilities will recognise this pattern and next time you see a fat person on a mobility scooter and immediately think he is a lazy bastard who looks perfectly well to you, have another look. Is he struggling to walk because he is fat or because he has rheumatoid arthritis; does he have the tell-tale moon face of someone on steroids, or is he simply so lonely and dehumanised by his disability that chocolate is his comfort. Think beyond the stereotype of the wasting, battling, terminally ill patient and see human beings.