A lot of people say to me that they ‘don’t know how I do it.’ Even those closest to me marvel at how I manage to stay sunny and bright; keeping my chirpy disposition, when I am often in excruciating pain or fatigued beyond belief.
What do people see?
I’d like to start by pointing out, that even I am not happy all the time. How could I be? Contrary to popular belief, I am only human. Even I have my limits. I have just worked hard over the past three and a half decades, not to let those grey moments show, so it is easy to mistake me as being always happy.
I can actually remember a time when a teacher from my Junior School days was informed that I had Crohn’s Disease. It was a long time after she had taught me, and a colleague of mum’s was a close friend of hers. This colleague happened to mention to mum that Mrs Smith’s daughter had just been diagnosed with a horrible bowel condition called Crohn’s Disease. Mum told her that, having known me since the age of 5, she might take comfort in hearing that I was diagnosed with the very same condition at 3.
Apparently, upon receipt of this disclosure, she insisted mum’s colleague must have been mistaken, ‘No. I knew Emma very well, and she was certainly not a poorly child. She was far too bright and strong to have been that. I would have noticed something that serious, wouldn’t I?’
A little ray of sunshine…
That fits with the picture mum and dad paint of me as a child. They used to say that when I walked into a room, I lit it up with my sunny personality. I’m not sure how true that is; they could be talking about the past that they see through rose-coloured specs. But I am all too aware of how difficult people find it, on the rare occasions that I am not smiling through the fog.
That is of my own doing, of course, because I have always been determined to be okay. There is a very exclusive, and tiny, group of people who have ever been allowed to see me unravel. Until around eight months ago. As things got progressively worse with my physical health, I began to let close friends know I wasn’t coping so well. However, it was still easier to keep them at arms’ length, telling them very little beyond that. I would hate to become a moaner. It somehow feels self-indulgent to waste time complaining about the hand I’ve been dealt. Especially with friends who are dotted all around the globe.
In our busy existences, it isn’t easy to set aside time out for telephone calls and catch-ups. Why would I waste those precious moments on maudlin thoughts? Add to that, the fact that it goes against every instinctive bone in my body, to answer anything other than, ‘I’m fine,’ when I am asked, and you see something of a glimpse into the truth behind the mask. I find it far easier to focus on those around me, and worry about what they need. I say this, not to paint myself as a saint – I am certainly not that – but to acknowledge that putting others’ needs above my own comes naturally to me. That sometimes means going as far as ignoring my needs entirely.
As with everything, this habit was formed in childhood. I can remember a couple of key moments in crystal clear HD cinematic detail. At around the age of 4, we were told I had to stop eating even dark chocolate; there was something in the cocoa itself that I was no longer allowed to have. It was a Friday. How do I remember that? Simple: because what happened later was our Shabbos evening ritual. At the end of our roast chicken dinner, it was my job to hand out the dark chocolate mints. As we were finishing dessert, I overheard mum talking in the kitchen to my two big sisters, then 11 and 13. ‘We won’t get the mints out tonight, because it isn’t fair on Emma.’
This was my cue to get up from the table and remove the mints from the sideboard where they were kept. I carried them into the kitchen, ‘Mummy, don’t be so silly. Just because I can’t have them, it doesn’t mean everybody else has to stop eating them.’ With that, I lifted the lid and offered the chocolates to each of my grandmas.
The other single most defining moment in my journey of learning to cope, came at the height of my first flare up. I was 10 years old, nearing the end of Year 6, and I was very very ill. My consultant’s advice was that I be withdrawn from school for a year, then re-join secondary school with the year below me, ‘She’s a summer baby, so nobody will bat an eyelid at it. She really isn’t well enough to cope with the transition from Junior School. She shouldn’t even burden herself with trying to handle that amidst everything else.’
Naturally, I was never going to accept missing out as a valid option. If someone tells me I shouldn’t do something, unfortunately it only makes me more determined to do it. I don’t mean that in a contrary for the sake of being contrary way. It simply pushes some button in me that fuels my inherent need to over-compensate for my illness. Rather than sitting back and accepting the limitations it puts on me and my life, I feel compelled to achieve the impossible, just to show Crohn’s Disease that it can’t beat me.
The billion dollar question
Around that same time, one evening as mum was putting me to bed, I asked her, ‘Mummy, why does G-d make some people poorly? Is it because he’s punishing them for something?’ My mum, slightly caught off guard, and thinking quickly, answered, ‘No, darling. You must never think that. G-d gives illnesses to the people He knows can cope with them.’ That was enough for me; I have never asked why? since. There was no need. I had my answer. I have this, because I can cope with it. Therefore I must cope with it.
With the added insight and wisdom that has come in the last year or so of working towards acceptance of myself, and all the baggage I bring with me, I see that mum’s quick-thinking has a lot to answer for. That single comment twenty-five years ago, meant I have never given myself permission to take my foot off the accelerator even for a moment. I had convinced myself that by not lamenting and questioning the reasons for my condition, it meant I fully accepted it.
Age. Experience. Wisdom. Realisation.
Only now do I realise that, for a very long time, the opposite has been true. I have actually spent a lifetime trying to outrun my Crohn’s Disease, in a race I will never win. I hated that part of myself, always. By ignoring it, pretending that my IBD was not really such a big deal, by never giving in to it or letting it take over, I suppose I thought I could convince myself of that fact. If it wasn’t a big deal to me, then it certainly wouldn’t be a big enough deal for anyone else to define me by.
With that in mind, I now must add that mum’s comment all those years ago is also the reason I have survived everything I have thus far. I’ve been through a few battles and I’ve got the scars to prove it, but I’ve come out fighting every time. Why? Because I have always believed I can cope. I learnt my strength and my fighting spirit from my warrior mum, and for that, I am more grateful than it’s possible to express.
Get to the point…
That brings us back to the question – how do I stay so sunny? I honestly can’t answer how, but I think I can explain why. The way I look at it, I have two options: I can curl up, give up, go into hibernation and stop doing all the things that make me who I am. Or, I can keep living in the face of all the rubbish that’s thrown at me. Each time I fall down, I can get back up again and dust myself off before carrying on with my life. I can keep doing the things I love doing, keep working so I feel like life has purpose, keep being creative so I feel alive. To my mind, the first of these doesn’t really even qualify as an option.
Believe you can, and you will
So when you see me buzzing through a workshop, racing from one creative engagement to another, single-handedly holding an enormous project together or teaching back-to-back lessons, and you see the smile on my face, although there is a lot behind the smile that is anything but happy, that smile is not artificial. The moment I step into a creative arena, the adrenalin kicks in and the buzz takes over. It is exactly the same as playing a role onstage, and you all know how much I love doing that. The sense of satisfaction and enjoyment that I get from all this is what keeps me powered up until the job is over.
How do I do it? Instinctively. The belief that a smile is a lot more enjoyable than a frown, and that positivity breeds positivity is a little subconscious mantra I have adopted over the years. It really isn’t something I give thought to anymore. It is simply how I am. Why do I insist on staying that way, amidst all the other personality traits I am happy to challenge and change? That’s easy. It has become, for me, the closest thing to self-preservation that I can find. If I stay sunny and power through life’s hardships, somehow the mountains seem to shrink to small hills, the bumps in the road seem passable, and people will continue to know me as the sunny girl who has a smile for everyone.
What would you rather be remembered for – your smile, or your terribly cruel illness?
Surely it’s a no-brainer.