Learning to live watching others die

Emma Betts. You Taught Us ALL How To Live

Over the last three years I was privileged to get to know a beautiful young woman. Her name was Emma Betts. Emma Simic. I’m sure you already know her. She’s really become quite famous – but in a way NONE of us would ever want to be.

When I first met her, I naively thought I might be able to help her with her newly diagnosed terminal cancer. To help her raise awareness of not only her condition but also her newly launched Blog “Dear Melanoma”. So, I interviewed her as part of my own humble blog series “Al interviews a Woman of Style”. And, honestly, not just because of her diagnosis or her Blog launch, but because Emma really did have an incredible, unique and infectious sense of true style – inside and out. And it was obvious from the very first day we met.

It was my friend Bec Sparrow who first introduced me to her, and I do believe (as Bec said at Emma’s FUNeral today) that Bec was meant to meet Emma. For so, so many reasons that even Bec won’t ever really be able to understand or explain. All I know is she really does have an incredible way of finding the best in people and encouraging them to have the courage to show that “best” off to the world. But that’s a whole ‘nother story. More on that later…

Back to Em. You see, I was lucky enough to have dodged my own “Big C” bullet at age 29 (not Melanoma, thankfully, but…) and I perhaps again, naively, thought I could help this beautiful young woman raise awareness and support for Cancer – the horrible disease that has claimed way too many people I love – both young and old.

It’s a diagnosis that Emma herself used to describe to me as “frustrating beyond belief”. We had way too quickly discovered too many similarities; too many shared surgeons/specialists. Too many references to us both being “duds”. We both agreed how frustrating it was to live with chronic conditions that others just couldn’t see or even begin to understand. But then, how do you deal with this? Now we’re talking Terminal Cancer! It really was a game changer. And as we both understood, it was definitely one of those things about which you don’t get the luxury of “thinking positively” just so that others will feel better. As she used to say often, “Sometimes you just can’t win an unwinnable fight – even from the very beginning”. And as for anyone who dared to tell her to “think positively” about her diagnosis at such a young age? Well, lets just say both of us would laugh (and cry) and chink our wine glasses and say “Give me one fucking good reason to think positively about dying at the age of 23?! Pulllleeeasse!”

So. We became friends. We shared sushi and wine. She visited ME in hospital (go figure?). She brought me chocolate-coated berries (a delicacy she said I just HAD to discover); both she and Serge shouted ME Aburi salmon at the Sushi Train when I just wish I had been able to shout them; we shared and compared stories of two of our (mutually excellent long-term) Specialists, one of whom I had inappropriately renamed after he had removed my large bowel, and happily shared with her his nick-name. She and I shared stories of what it had been like to “look well”. To be young, but also to be living with a chronic illness that was simply not visible to the world. She would offer advice to me (yep, the 23 year old advising the woman twice her age) about coping with the downturn in income when you can no longer work as hard as you once used to; the guilt of feeling like a failure to your husband/family; the frustration of not being able to do anything to change it. She was a total INSPIRATION to me for the short three years of friendship we had. And now she’s gone I can’t describe the survivor-guilt I now harbour. I’m hoping a good counselor will be able to help me with that though. I mean, compared to what Emma and her husband/family are going through, I’m disgusted to even admit that I’m struggling here right now!

So. Let’s fast-forward to the last few months of 2016….

What was I doing? I was just doing whatever it is I do – which is nothing compared to what this amazing young woman had been doing for her whole (way too short) life. I was becoming increasingly concerned about my Mum’s health, but also kind of in denial. Was I ready to face that next stage? Nope, I was definitely not. I’d just said goodbye to six friends/family in the space of less than six months and was vowing that 2017 just had to be better. But all the while, Emma was clinging to any hope she could of simply accessing another clinical trial that might buy her some more time. More time to be with her gorgeous husband Serge; time to be with her beloved fur-baby Ralph; and for goodness sake, what about time to be with her incredibly strong, loving, supportive and close family?

Over the last three months or so, I’d kept in touch with Em privately. I was very aware of what she was going through and knew how many much-closer friends and family she had, and how her energy levels would certainly only allow her enough time to keep in touch with her nearest and dearest. I certainly didn’t want to add any more pressure so I watched from the sidelines and felt completely helpless/useless. Hopeless. Possibly partly to do with what I was personally facing myself. My mother’s health had been clearly declining in the last few years, but none more so than it had in the latter quarter of last year and the first three months of 2017.

I think we, as kids, want to think that our parents will be there forever. We’d love to deny that they’re actually “aging”. And no matter what our relationship with them is/was, we still want to think that we’ve got plenty of time to sort out our shit and say what we want to say. Well, you know what? Life doesn’t always follow a script. And if Emma’s early death hasn’t taught us anything, then please let it at least teach us this: How PRECIOUS life is. How you never know when it will be taken from any of us. That age isn’t a guarantee. That we can all try to follow a script but life doesn’t. We can deny that the things we’re doing will have any great impact, but the thing is, we never know when it will end for any of us.  Emma lived every single day of her way-too-short life to the fullest. She inspired. She raised funds. She helped others less fortunate. She had goals. She had dreams. She spent every moment of that life LIVING. I honestly can’t say I have done that. And I have already lived twice as long as she did. I hope I can find the strength to do even half of what she achieved.

Even if you know death is imminent, you’re still never really ready…

On Christmas Day 2016, it was clear to me that my usually crazy, wild, unconventional 89yo Irish Mum was definitely not quite “herself”. If I’m honest, it was clear things hadn’t been right for many, many months prior. But she was fighting SO hard to conceal things; to be strong; to be “normal”. I allowed myself to think/hope that “she’ll be right” as she always was. But…

We admitted her to hospital mid-January for a simple UTI and the associated “delirium” that often accompanies it (and had been back in 2015). But it was clear to me this time that there was really a lot more to it. After two weeks of fighting with her to go back to hospital for more investigations, she finally relented, and was diagnosed with malignant ascites in early February. Advanced Ovarian Cancer. My Mum was gone by the end of March. March 30th to be exact. Not even 8 weeks from diagnosis to death. I know for a fact she had fought this for a LOT longer than she/we had ever known – or at least been willing to let on.

Why am I sharing this story with you on the day that we said goodbye to my beautiful YOUNG friend Emma?

Because I want to make sure that none of us ever take our life (or the lives of those we love) for granted. That we never just think “she’ll be right”. Or that that we’ve all got a “lifetime” to say what we want to say to those we care about.

On a positive note, I do feel so very fortunate. Actually, I feel quite blessed. Because I got to spend precious time with my mum in the last few months, and to say what needed to be said. And truth-be-told, she said things to me that I don’t think she’d ever had felt comfortable saying when we she was supposedly “well”, or trying to act like she was. She’d spent a lot of her life trying to keep up appearances. Trying to be strong. She also had struggled with showing emotion (something I seem to have NO problem with, thanks to my highly-emotional Greek Dad!). Regardless, I still very much feel the loss. Both of my parents have now gone from this life, but you know what? In the scheme of things, I am also SO very lucky to have outlived them both. You know…The Circle of Life and all that? Because what Emma’s family is going through today – what they’ve gone through these last three years – is just unimaginable. Unfathomable. To lose a child (no matter how old) is just wrong. It’s not fair. It really pisses me off. I have no answers or theories about the meaning of life and I doubt I ever will. Other than to say this:

“Emma, in dying, you taught me more about living than I’ve ever been able to understand. You taught me what strength and resilience really looks like. You knew how hard it was to live with a chronic illness; with an invisible disability, long before you were diagnosed with the mother of them all – a Terminal Illness. Just knowing you taught me – hopefully has taught us all – what resilience is. It has taught me what being grateful is all about.”

RIP Emma. You will NEVER be forgotten. I promise.

If you’d like to read more about Emma, visit her Dear Melanoma Blog here. Let’s continue to help spread her message about Sun Safety while raising much needed funds for research into a cure for Melanoma.

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