I’m feeling the weight of that responsibility. I want to be a beacon of light for you, to show you that it is possible to go beyond surviving one day at a time, that is it possible to be reconnected again, to live a full and whole life. That’s my mission. I strongly believe that it does get better, that we can be whole again, that we don’t need to let what happened to us, define us. We are not our rapes. We are not forever victims. We can become empowered again. At the other side of the hell that is post traumatic stress, there is post traumatic growth.
I’ve been diagnosed with MS. I’m not feeling entirely reconnected, or positive, or anything close to a beacon of light right now.
This blog is about luck. How can I be writing a blog about luck, now?
This concept of ‘luck’ has been spewling around in my head for some time now, long before this diagnosis. (I have decided spewling should be a word, and so it has become one).
I’m a coach and an NLP Master Practitioner. We are experts of the reframe. We exhort the benefits of positivity and positive thinking. We preach having a gratitude practice. I have personally often preached keeping a gratitude diary, the feeling of being grateful for all the things we have, the abundant opportunities that await. There is definitely a place and a purpose for those, for helping us to feel better about our lot, to help us to pull ourselves out of victimhood and feel empowered, to retrain our brain to be better able to get us back off the floor when we’ve been hit down.
I’ve been using this habit of grateful thinking a lot since my diagnosis.
Most often, an MS diagnosis can take several years. Mine took less than six weeks from the first symptoms to sitting in the consultant’s office to be told the news. In that time, it took only the second visit to the GP for him to agree to refer me. The referral was supposed to be weeks, possibly months but I was seen, and diagnosed with my first ailment (a one in a million diagnosis of transverse myelitis, see I’m lucky, one in a million, in fact). MRI’s were ordered, there was supposed to a wait of weeks, most likely months, but it was only ten days. And then the diagnosis. Less than six weeks, from symptoms to diagnosis. I’m lucky, I could’ve been waiting much, much longer without knowing why these symptoms weren’t going away.
I’m lucky. The symptoms, and the medication, and the combination of both, are leaving me very fatigued, very quickly (ssh., we’re not saying out loud that I was already fatigued very quickly, from the general unfitness, and the continuing hypo crash from the PTSD hangover of too much cortisol flowing around my body – this is more fatigued than I was even before). I’m lucky because I have a job that comfortably pays for my rent, and my lifestyle, that doesn’t need a commute. I know I wouldn’t survive a commute right now, it would mean time off work. I know that I wouldn’t handle everyone’s surface-level questions, “how are you, good weekend?” without batting back the tears. Instead, I can do my work from the comfort of my home, the one that always features in my gratitude practice when I compare to where I was one year ago, and I only need to talk to colleagues over Skype, camera off. I’m lucky.
I’m lucky because I’m still mobile. I’m lucky because I still have my cognitive abilities. I’m lucky because I don’t have anyone else to worry about, if I’d got pregnant back when I was trying and throwing money at the problem with donor sperm, I’d have a child who was only about six years old, and who would be growing up with a mother who might be degenerating right before their eyes. I’m lucky.
I’m lucky. And the queen of the reframe. The other day I tried out “this could be the best thing that has happened to me, I mean, it could be why I finally get fit and eat more healthily” – a reframe too far, at least for now, I think.
Like I said, I’ve been using this habit of grateful thinking a lot since my diagnosis. And mostly I want to scream that it’s all a load of bull. Bad things happen to good people, and life’s sometimes not fair.
I mean, seriously, how much bad luck is someone supposed to get before they realise that this concept of luck is actually just a mechanism to keep us quiet and docile and grateful…?
Luck is just a comparative device. I am lucky because other less-lucky factors aren’t also in play. But the actual lucky person doesn’t exist. A lucky person would be one who’s psychological contract with the world is never broken by life. One where they get exactly the kind of life they expect to get, no curve balls. And I’m pretty certain that person doesn’t exist. Even the rich get MS.
I don’t remember exactly when life broke the contract I thought I had with it, but it’s well and truly off-plan now. My contract with life was simple. Meet someone, start a family, have a home, enjoy my work, grow old peacefully, one day die in my sleep. I imagine it’s not all that different for most of you, and it probably just depends how old you are when life decides to show you that it cares not one jot for any psychological contract you might think you’ve drawn up with it, but will rip it up in your face and throw a few curve balls your way instead.
And you play those balls like a pro, batting them away like you bat the flies away in summer. Some of them, you miss, and that ball hits you square in the face, and you fall down on the ground, and yet you know the game, you’re supposed to get back up, shake off the mud, and square up for the next ball, knees limber, waiting. You’re a good girl, you won’t get beaten by this thing called life, you’re ready. Bring it on.
Luck. What is it anyway?
Why is a life that is free from curve balls called lucky? Why is it then when the curve balls come, we’re duty-bound to find a reframe that helps us see that in comparison it could be worse, and that actually we’re still lucky really? Why is luck considered a currency that we should extol?
It is not my belief that everything happens for a reason. It is my belief that lots of things happen for no reason. It is not my belief that the universe sends us tests which we must pass to demonstrate our virtue. It is my belief that sometimes things just happen – but, and this is the bit that is the test, it is our choice as to how we want to respond. So, that ball comes at you hard and first, you can duck. You can turn and walk away and say you don’t want to play anymore. Or, you can take a swing and hope you hit it back, or in my case, when playing rounders at school, take a swing and just swipe your bat at the empty air. The choice is ours, and ours alone.
I’m not lucky because, whilst I have MS, I also have the tools and resources to keep a grip of my mental health. I’m not lucky because, whilst I have MS, I also have the perfect for job for someone with MS. I’m not lucky because, whilst I have MS, I don’t also have a child to worry about. Just as, I wasn’t lucky because I had access to a psychiatrist to help me recover from PTSD. Just as, I wasn’t lucky that when I was raped and he had his hand on my neck and my face was into the mattress, that I didn’t die. Luck has nothing to do with it. Bad things happen, no reason. Sometimes the circumstances around them are better than comparatively they could be, but luck had nothing to do with being raped and not dying, with having PTSD but seeing a psychiatrist, or getting MS and being able to work from home. It’s not about luck, or not luck. Just, bad shit happens.
I can be grateful that the circumstances of my life, and my diagnosis, are not worse. But I’m not lucky. And, at the same time as being grateful for that comparative view, I can be furious with the world, with the ‘universe’ (if there is one) that this has happened. I can be furious and grateful, at the same time. I can metaphorically (and sometimes recently literally) stamp my foot and rail at the world that it just isn’t fair, I’m doing my best goddamit, and why has this happened? And at the same time know that it doesn’t serve me to do that, that I can’t change what is, I can only choose how I will respond to what is.
And I’m not feeling like a beacon of light. I’m not feeling very reconnected – I mean, literally, my immune system is attacking me. How fast, only time will tell. I’m having more negative days and moments, than positive ones. I’m seeing through all my reframes as empty and meaningless. I know I’m going through a process of assimilating the news, and that I need to let it happen. I know I’m spinning in the mire of grief, and denial, and anger. I know acceptance will be coming, how far away I don’t know.
Luck has nothing to do with life. Life isn’t fair, but it was never supposed to be, that was just a lie we believed in our innocence of youth. Roll the dice, come what may, ride the wave.
I’m taking some time to get to that place of acceptance. I’ll dip in and out, and I’ll still be here for you. I’ll be taking things more slowly, pacing myself, seeing how things fit.
With love, xx
THE SURVIVOR'S SURVIVAL KIT
The key tools to survive the everyday
This kit provides you with the start of some tools and techniques you can call on to help you feel able to rescue yourself
ARE YOU READY TO STOP SURVIVING AND START LIVING?
I developed the ReConnected Life Experience to help people just like you move from a place of self-blame and disconnection to a place where they can look forward to what the future holds, with a happy, hopeful heart.