I’ve thought long and hard about the best way to write this for MS Awareness Week. Do I write facts? An account on how you’ve affected my life? Do I talk about how it’s only now, 22 years after my Dad first got diagnosed that I can barely even speak about a few of the traumatic scenes I’ve seen in front of my eyes growing up? Do I recount how despair pushed me to the other side of the world, and it was only through speaking with other people who could relate and hug me whilst I cried that I could admit that I’m still in emotional pain despite the outward grin to the world?
I’m not going to write about that.
I’m going to write about the cards you’ve dealt and how I’ve risen from them. I’m going to write about the five ways you’ve shown me pain and five ways I’ve become stronger because of that. Despite the fact it’s my Dad who’s suffering with your diagnosis, you’ve affected us all in different ways. But as much I’ve hated you being in my life, you are my life and you’re the reason I am, and we are as a family, so resilient. Here goes.
I think it takes a lot of courage to walk into school to finish your GCSEs after seeing your Dad rushed into the hospital the night before; to try to continue as normal as I could. I smiled a lot through the pain and cried secretly on the 79 bus when no one could see me. It took courage as a child to be strong for my Dad who was going through so much, and for my mum who was trying to look after three kids amidst the chaos. It took courage to continue trying to live as normal a life as my teenage peers were, enjoying myself at social arrangements and continuing to have fun despite the difficulties. I could have broken down and never left the house for fear something would happen – but I carried on. I’ve taken this into my twenties now; be strong through hardship. The light will come.
Is that even a word? Maybe not, but I think it’s relevant. As a kid growing up, when you’ve got REAL stuff happening around you; heartbreaking stuff that shocks you senseless sometimes, life’s petty dramas are just that – petty. I didn’t and still don’t have time for silly arguments, brainless gossip or fake people. Life should be REAL, messy, hard, fun, exciting and everything in-between. Unnecessary drama is created by people that haven’t got much else happening – it’s irrelevant and not worth it. Don’t surround yourself with it.
I think living with someone with MS has given me some sort of intuition to connect to people on a deeper level, I don’t know why. Perhaps it’s because I’ve experienced feeling extreme sadness and have hidden it from the world. Perhaps it’s because I’ve felt pain and haven’t known how to express that. Perhaps it’s because I realise more than most that it’s easier to put on a brave face than it is to admit you’re struggling. I hate knowing people could be internally suffering. Communication is always key.
What is ‘IT’ I hear you asking. I’m at major risk of sounding like a cliché but I’m going to roll with it, because I don’t just mean ‘Live your life’ as the saying goes – despite the fact that you MS, have shown me how quickly life can be taken out of your hands and changed forever. When I say ‘IT’, I mean “IT” as in everything. The coffee you buy in the morning from the friendly waitress? Enjoy that coffee, appreciate the fresh skies as you smile at her goodbye. Do smile – it can make someone’s day. Those steps you’re taking? Someone’s taken them before you, and someone will take them long after you’re gone. Step with purpose; with meaning. Appreciate the fact you CAN step at all – MS can rid you of the things you take for granted, so take NOTHING for granted. Live everyday like it’s a rebirth of yourself; thank the universe for letting you breathe for another day, laugh for another second and make use of your senses. What can you hear or see or smell or touch that makes you feel good? MS, you’ve shown me that those senses can be heavily affected; so use them to give yourself kindness and to other people around.
Life isn’t the worst thing in the world
Most importantly, this.
I’ve realised that life isn’t as bad as it seems from living it in the first place. MS, you’ve made life difficult. I’ve just moved out and I would love to show my Dad my new flat – but he’s in a wheelchair and he can’t get up the stairs. MS, I’d love to visit a restaurant without needing carers to join, or to one day picture my Dad walking me down the aisle. These things won’t happen – but that doesn’t mean life is bad. It’s just different to others, but what two lives are even the same? I really truly believe that as much as I despise your existence, you’ve made me everything I love about myself today. Although, like everyone I can be insecure about many things, I know that deep down I’m strong, I can react fast to ever-changing situations and comfort those in need. I know that living a life of meaning, no fakeness, zero tolerance for bullsh*t and a determination to enjoy the present moment can only have been created from living with an illness so predictable. As a result of you, I’m learning to accept situations for what they are and surround myself with people who bring me up whilst appreciating the smaller things. And I wouldn’t call that a bad life at all.