blog 92: sudep action day 2020: #SpeakUpToSaveLives

#SpeakUpToSaveLives 

I love this theme for this year's SUDEP Action Day. I have been thinking about it for a few weeks whilst thinking about putting pen to paper, but what surprised me was it made me think up little ways in which I could speak up. It isn’t always the big things that make a difference, my own example was seeing a friends Instagram video that was a bit “flashy” , my friend was ace, put a trigger warning at the start of the video, and told me how it helped her and would maybe prompt others. That small stone casts a ripple. 

2020 has been a strange year for everyone, I have seen the end of my own seizure free streak, after two years, I was devastated. It reminded me of how important it is to talk, many people in my life now were not around when my seizures were uncontrolled, they have only ever known me as I am now. Yes, I have epilepsy, but it had been controlled and no concern, last week reminded me of just how dangerous that was. Yes, it was controlled, but as we all know, Epilepsy is cruel and does not think twice about when to strike. The people around me now, who didn’t know me back then, had to watch as my body and muscles struggled to recover, as I became a shell of myself, as I needed daily naps. Why oh why had I not had these conversations before?

It also made me think of a day recently when at work, days after my seizure. Someone asked ‘what I had done’ after spotting the bruising on my arm.
“I tripped on decorating stuff.” I mumbled.
Instantly ashamed of myself.
Why did I lie?
I have epilepsy but I am capable. This was a chance to speak up, to educate someone who may have no knowledge of the condition. I was livid with myself; it wasn’t like it would have been an issue at work. The day after my seizure I returned to work and my boss could not have been more supportive. I have always championed being honest and educating where you can, and I failed.
It doesn't have to be in big ways, it doesn't have to be blog posts.
But in two conversations, in a week in my own life, I had both lost a chance to #SpeakUpToSaveLives and also educate someone on something so simple for them, but could make the world of difference to someone living with epilepsy. I realised that attending meetings, being an activist was for nothing if I was not willing to #SpeakUpToSaveLives in my day to day life. 

The pandemic has highlighted huge inequalities and we know that SUDEP, epilepsy risks and epilepsy deaths are one of the neglected areas, made worse by COVID-19. Thousands of people with epilepsy, their carers and health workers have report through SUDEP Action’s international research project that:

• epilepsy risks have worsened, (as shown in my own life, my first seizure in two years)
• people with epilepsy are having more trouble accessing the care and services they need
• health professionals are worried their patients are not seeking help if they’re epilepsy is getting worse
• and bereaved families say pain they have lived with for decades has been made worse during 2020.

You may think the innocent and nothingy conversation you have about your own epilepsy won’t make a difference, but every single bit of information we share, every experience will help to #SpeakUpToSaveLives. As the saying goes: “I alone can’t change the world, but I can cast a stone across the waters to create many ripples.” - Mother Teresa.
I vowed to never bend the truth about my journey again, to be honest about the highs and the lows. I had always been so honest, but this last week I was ashamed and embarrassed, but today I #ToSpeakUpToSaveLives.
 
Let your epilepsy journey and story be the stone. 

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