Sometimes I wonder why I write my blog. Who is it for? Is it to help me to purge my fury and despair at the futility of my situation? Is it for others, to give them some solace in knowing they are not alone? Is it because I am an attention-seeking wannabe with ambition way above my station? A mixture of them all?
Does anyone ever even see it?
Then something happens and I get a small jolt of realisation. A reality check if you will.
Greetings From Afar
This morning I received an email from someone. I can’t tell you who. But I woke up, cursed that it was 07.15 and Ihad to be up and out of the door before 08.05. I picked up my mobile phone, scanned my email and saw something different. I opened up the mail and read a message from someone whose partner has Parkinson’s. As I read I felt myself tearing up adn Ifelt immense sadness. I recognised their predicament ony too well, and I immediately knew what I should write about for this week’s blog. Here we go. This is for you, dear mailer.
Getting a diagnosis for Parkinson’s is like being hit with a sledgehammer. Getting diagnosed with anything chronic; forever, incurable, is simply awful. Sitting there and hearing the word “degenerative.” What, wait, what does that even mean? You think you know, you want to be wrong.
You’re not wrong.
I will never forget that moment. The room began to spin a little. I cried. I was in a state of shock and I was still unsure what I even had. Yet what came next was even worse in my opinion.
Over the next few days as I struggled to understand what had happened to me one message slowly became more and more clear to someone my age with this disease.
Stay quiet. Tell nobody. You will be judged. This renders you useless.
I was confused and heartbroken. I was lost in a sea of angst. I mean sure, you might look at me now and say “but she’s ok, she’s strong.” Don’t think I don’t weep and cry like everyone else.
The more I learned about Parkinson’s the more I knew I needed to see others. Others like me, people that were my age. Yet they’re mostly all in hiding. Ashamed of something they cannot control. Worried about being pitied, somehow being less worthy. Medical advice where I live in New Zealand was sketchy. Some doctors have even advised to avoid seeking help from the national charity as “it’s for the elderly”.
We Don’t Want to Know
How is this helpful? Since when do we actually tell people with a chronic illness, a genuine disability, to keep quiet? Hey, your life has just changed forever but we live in an ableist world and nobody will understand. They’ll feel uncomfortable that you are dealing with the most difficult and terrifying thing ever, so just keep quiet, will you? We don’t want to upset any of our able- bodied healthy friends and colleagues now.”
Yet Parkinson’s – illness in general – does not choose. The fastest growing neurological disease on the planet. Think about that for a moment. You are not alone.
We are not alone.
How can we ever batter down the door without the help of each other? The way to stop the prejudice is to stand up and be counted. It’s not easy but we have nothing to be ashamed of. With the aid of modern medicine and exercise we may even find ourselves feeling healthier and stronger than ever before.
Why not make our friends and workplaces more accepting? It’s our chance to make a difference for good. To educate people, help them see and understand this can happen to anyone. Change of outdated attitudes will never happen without us telling our friends, our loved ones about our change of circumstances. It’s not easy. I’ll be honest. You’ll hear a lot of crazy, confused comments as they struggle with the right thing to say. It gets easier. Kind of.
Without it we remain alone and isolated. Is that what you think they would want for you?
It starts with a choice. To be brave and unashamed. Hiding out alone is frightening, lonely and depressing. It’s a path to bleakness and despair.
You are strong. We are strong. Together we can move mountains.
Until next time, Kitty.
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Go on. You know you want to.