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All In The Feedback

The most common feedback I tend to get – both from friends and strangers – is that my strength and positivity are amazing. I used to think that being strong and positive was simply my default setting. To a degree, I still believe that to be true.

On the computer, we are always given the option to change default settings. 

I suppose my own default settings are no less an option I select than the ones in my google browser. I have come to realise that there is an element of conscious choice involved in ensuring that my selected default settings remain active and in use.

Even through the toughest of times.  

Weakness vs Strength

Don’t get me wrong, I am not suggesting that I have a superhuman ability to stay bright no matter what. Even I have my off-days. Which, I suppose, is partly what this post is about. I used to think an off-day meant I was being weak or feeble or pathetic! Awful words, right? Words I would never use about anyone else. Words which used to really upset Lovelyman when he heard them, and which continue to upset my mum and sisters when they come up by force of habit. 

So What changed?

And what prompted it? 

At the moment, it is hard to say exactly when my perspective shifted, or even precisely why. The last five months or so have been fairly tough (as have the last 37 and a half years, but this is different!) and have encouraged a great deal of reflection.

The time of year plays a part in that too. It is Jewish Festival season, also affectionately known as silly season due to the amount of food we consume and the utter chaos of one broken week after another. I’m not even sure what night of the week I am writing this on. 

This part of the Jewish year is always one which leaves me pondering a whole host of issues. How much has, or hasn’t, changed since the previous year, how many people are no longer with us, where I am up to in my own personal story versus where I would like to be – that kind of thing. 

Season Of Firsts

This year’s silly season has been particularly poignant for me, as it marks a very big first. My first festive period without Lovelyman by my side. My first one living alone again. My first one based back in Leeds with much easier access to the synagogues and my family and friends. That last one is definitely a positive for anyone who’s wondering, but that isn’t the point. The point is, that these big changes have occurred, sparking even more introspective activity than would usually come about at this already significant time of year. So I should probably attribute all recent revelations, at least in part, to that.

The Gift Of Giving

I think, though, the inspiration for this post came from a recent gift from one of my very best friends. I was having a particularly rough run physically and was really struggling with the amount of pain I was in. Having worked so hard to reduce my reliance on opiate relief, and almost come off morphine altogether, I was feeling extra-low about how much I had needed to take simply to get through this one particular spell.  

At this point, I should possibly add that the friend in question is one who understands chronic illness first-hand. She also relies on her own iron will and superhero strength just to get up and keep going. We met almost ten years ago when I first came back to Yorkshire, bonding fairly soon after in the most natural way. Both with an inclination to tell the world we are fine, neither of us could fathom the unspoken agreement which went between us. It was instinctive to be real with one another, without fear that there would be silence or awkwardness or anything other than mutual respect and compassion.

You can imagine how, and why, a friendship like that would blossom. And blossom it has. Neither one of us could imagine life without the other these days. Hopefully we will never have to! 

So, back to my awful week…I really was struggling, despite how it will have appeared to most of the outside world. Said fabulous friend (let’s just call her C so I don’t have to type ‘my friend’ each time I mention her) knowing that I needed a boost, brought a present round to me. The gift itself was amazing, by the way, but that isn’t the focus of the tale.  

Appearances Can Be Deceptive

C prides herself on beautiful gift wrapping. Every present from her takes an age and a half to get into, but will be a work of art in its own right. On this particular present, C had stuck a tag featuring the Incredible Hulk. Being a child of the eighties, that put a smile on my face for a start. Her message read: To most of the world, you appear as strong as The Hulk. I’m here to hold you up on the days when you really don’t feel it. 

Now, it isn’t that I wasn’t already aware of what a blessing it was when C came into my life. Nor was I ever in any doubt, especially in recent months, just how important it is to have great people in my corner. And I really do have incredible people cheering me on. I am one of the lucky ones on that score. My family and friends are everything to me, and I count myself so fortunate to have both. 

In fact, C’s simple message reminded me just how crucial it is, when dealing with chronic illness, to let people in. I mean really let them in; be honest with them about the bad as well as the good. More than that, though, it reminded me of the need to be honest with myself; to give myself permission not to be the toughest person in the room.  

Pressure Of Reassurance

You see, that’s something else I am told an awful lot: You’ll be fine – you’re the strongest person I know. Along with various other incarnations of the same phrase. While it is complimentary that people see me as a force to be reckoned with, it also puts considerable pressure on me to uphold that image.  

Or at least, that’s my response to it. 

I want to add that this is in no way a dig at anyone who has said that, or something like it, to me in the past. I understand that it always comes from a place of love and kindness. I appreciate your attempts to bolster me and help me believe I can survive whatever storm I’m weathering at the time. I am grateful for the reminder that I do have a lot of strength, and I do always seem to find a way of powering through, no matter what. I love that you care enough to want to do all those things. I really do. 

That said, the bully who lives in me and exists only to bully me, uses those comments as ammunition. She tells me that if I’m so strong, I can’t think, even for a fleeting moment, that life isn’t fair. If I really am so tough, I definitely can’t wish for things to be different. With such fighting spirit, there’s no way I can let myself down by showing anyone how much life sometimes hurts. Or how badly. 

Life Is Cruel

Yet at no point have I ever thought to ask the question: why me? Partly because – why not me? But more because I have never seen the purpose in such a question. What would it achieve? I won’t get an answer, so why bother asking? 

That’s not to say my faith has never been shaken. It has. Most notably a little over a decade ago. In a nutshell, I had a year in which I needed two life-saving surgeries. The operations were almost exactly six months apart, and pretty much dominated and redefined that entire year for me. It was almost a complete write-off in terms of achievements. My planned trip to Drama School in LA was postponed twice. I was barely out of surgery for my mum’s 60th birthday. Life basically stopped. My year was made up of A and E, surgery, recovery, daytime TV, drastic and hideous weight loss, regaining strength, facing fears and battling to come out the other side. 

To do that once would have been tough. Twice in such quick succession was a little bit much. 

RUN!

For the first time in my life, I was scared. I was suddenly frightened of when the disease I’d always lived with might strike me down. And how badly. True to form, I gave myself no emotional recovery time, moving down to London immediately after the obligatory recuperation period from the second op was over.  

I just needed to escape. I had to salvage something from the wreckage of my failed LA plans. I needed to create a silver lining to the postponement and make my own sunshine, professionally as well as personally.  

As a by the by, the year in London was the catalyst for an awful lot of wonderful things which have happened since. At the time, however, it was all pretty hard to swallow. The emotional trauma caught up with me, manifesting itself in all manner of odd physical ways. 

Ultimately, though, I dragged myself through it. I came out the other side of that very dark spell, and most people were none the wiser to its existence. 

Is Faith A Healer? Or Is That Just Time?

More recently I have questioned my faith in so many more complex ways. Faith is perhaps something to save for another post, or maybe even leave off my blog altogether. I’m undecided on that one. It is important to acknowledge it here, though. Even if only in superficial terms, as it is relevant at this exact moment in my life.  

I have told you things have been difficult. It has, by now, become clear to you all that Lovelyman and I are no longer together. In truth, things have been tough for a lot longer than the last five months. This past half-decade has forced me to face some of the biggest challenges and accept some of the biggest losses I could ever have imagined. It is all still far too raw, real and personal to air publicly. Some things will always remain so. That said, to anyone who knows me, elements of my struggle are glaringly obvious anyway.

Best Laid Plans 

Whether I choose to discuss it or not (which I don’t, but thank you for asking) it was never in the plan for me to be 37 and not have a family of my own. I have loved children for as long as I can remember. I persisted with my pleas for mum and dad to give me a sibling to take care of until I was about 12. It was only when mum pointed out that to have another baby then would be unfair – it would grow up without really having the chance to establish a relationship with my two big sisters, as they had already moved out. I was backed into submission with that argument, so I finally let the matter rest.

It is no secret that I get immense satisfaction and fulfilment from working with children. I certainly don’t hide my adoration for my nieces and nephews, or for the honorary collection belonging to my cousins and closest friends.   

At some point, I might feel inclined to talk more about this. For now, though, all I am trying to say, is that while I feel the injustice of the situation for myself so intensely; while I mourn my own loss, I have still never asked: why me?  

Dramatic License

Cora Bissett’s What Girls Are Made Of, one of the most powerful plays I have seen in a very, very long time (maybe ever!) at the Edinburgh Fringe last month, summed this feeling up so perfectly. It is not a case of wishing my own misfortune on anyone else. Not even if I had an enemy would I do that. Nor is it a case of bemoaning what is or isn’t fair. I know there are always countless people whose situations are far worse than mine. It is purely and simply a matter of wondering: when will it be my turn? 

Be that my turn for a pain free life, my chance of a smoother ride, my opportunity to find a love that lasts, or my chance to have the family I want…I can’t help wondering if my turn for some of these things will ever come. And to that, I think I am allowed to say: It’s really not fair. 

Learning From The Best

As I have shared in previous posts, I learnt my strength from my amazing mum. I am thankful every day, that she taught me how to get up and get on with it. It is thanks to her that I am not defined by my illness. Thanks to her that people have always known me as Emma first, then as the girl with IBD. I owe it to my mum that I am still here today. 

And that brings me back to where I started this post. With a newfound appreciation for the effort and commitment I make, every day of my life, to focus on the positives. I wake up and I count my blessings, not my curses. I do it so instinctively, it seems, that I mistakenly took for granted that it was just the way I am. It’s not.

I see that now. Because we always have a choice. I certainly didn’t choose to live with chronic illness, but I did choose how I live with it.  

Summing Up

In response to the people who ask me: How do you stay so positive? I honestly couldn’t imagine being any other way. If I spent time dwelling on the things I wish could be different, I might never get out of bed in the morning.  For 24-7 little me, that just isn’t an option.  

I realise now, though, that I am allowed to be strong and still acknowledge life’s injustices. By surrounding myself with people who accept me no matter what; by learning to accept myself no matter what, it becomes easier to be honest about how I am feeling. Perhaps, in time, it will become easier to tell people that I don’t always want to be the strongest person in the world, or even in the room. Because sometimes, just sometimes, I wish life hadn’t made it necessary for me to be that way.  

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Of course, none of this means I will stop having a sunny outlook, or that I will give up the battle with my IBD. It just means I’m trying to teach myself that sometimes it’s okay if I simply survive – just get on with it and make it through the day. Not every day needs to have a gold medal finish. I don’t have to come out on top every single day. In fact, the simple art of surviving is still winning.  

It’s a work in progress of a lesson, like all of them are, but it’s one I am committed to mastering. I’m aiming for an A* actually. I’ll keep you posted 

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