Level-Up: Part 45

As I’m sure we all have, I’ve been thinking a lot about Robin Williams this week. I can’t remember the last time someone in the public eye passed away and it induced such genuine, heartfelt grief around the globe. He made us all laugh. He made us feel things. And yet, he had a deep sadness of his own that eventually became too much to sit with. If you’re feeling up to it, this piece from Cracked.com on how comedians are sometimes the most sad people of all is difficult but powerful reading. It gives a little insight into why making us laugh might have meant so much to Robin.

I’m not going to try and tell the story of his death or speculate on what he was thinking at the time, because I just don’t know. I’ve never been there. I’ve never reached a point where I genuinely believed the world was better off without me or that the only way out of my pain was to end my life. People close to me have and they’ve very bravely told me their stories. Some of those people still fight a daily battle with depression so heavy it makes just getting out of bed in the morning the biggest of achievements. And I’m so incredibly proud of them for taking on that challenge when all they want to do is pull their duvets over their heads and hope it all goes away. Even though they may not understand why, it means so much to me that they let me be there for them. That they talk to me about how they’re feeling. That they let me ‘build the nest’ with them. That they know I’m here whenever they need me. That they know they’re not alone.

depression_nest

If you know me personally or have followed this blog series you will understand how I’ve struggled emotionally throughout the course of this illness. I’ve had some incredibly low moments. I’ve cried. A lot. I’ve been angry. So so angry. I’ve had moments, even this week, where my self-esteem has plummeted dramatically. Even through all that, my GP and counsellors have agreed that I don’t have clinical depression. I’m just carrying a huge amount on my shoulders and needed to work out how to manage that without becoming overwhelmingly stressed. That’s not me putting myself on a pedestal. I’m not saying ‘Yay! Look at me! I won the mental illness lottery.’ It’s just luck and circumstance. Sometimes it’s just chemistry. Depression isn’t so discerning that it picks and chooses based on who you are or what you do. It can affect any of us. It impacts upon more of us than we care to admit. And it doesn’t just touch the person it’s happening to. It brushes over everyone who loves them too. It happened to one of the gentlest, kindest, funniest people we know.

The one part of Robin Williams’ tragic story I can relate to is the statement from his wife Susan that he was dealing with the early stages of Parkinson’s disease. My first thought was that maybe knowing the limits that might put upon his life were just too much given how much he had already struggled with depression and anxiety. Later press reports quoting friends who knew of his latest diagnosis suggested this was the case. He was, according to those sources, terrified that he’d no longer be able to work and couldn’t process the idea that his senses would be stripped away. The man who spoke so quickly he hardly stopped to take a breath and flung himself around in the pursuit of making us laugh may have had to face a moment where he wouldn’t be able to do that anymore. Making us happy made him happy and it was potentially being taken away.

Thankfully, I don’t have Parkinson’s disease, but as I’ve tried to explain my invisible physical illness to people I’ve sometimes described it as like having Parkinson’s on the inside. My brain perceives my body to be moving 24 hours a day, even when in fact I’m perfectly still. Unfortunately, because there is the perception of movement, my body tries reacting to it, so I can’t keep my body still or walk particularly well. Hence why it’s so exhausting. Where Parkinson’s is the body trying to control actual movement, mine is trying to control false messages from my brain telling me there’s movement.

As I’m sure Robin will have contemplated, chronic illness does put reigns on your life. It can stop you doing things you enjoy, being with people you love and take things away from you that you feel you need to be happy. Again, if you know me or if you’ve just dipped in and out of this blog series you’ll know how deeply I’ve struggled with the loss of independence and all the things I’ve had to give up throughout the course of this illness. It has been by far the most painful part of accepting the hand I’ve been dealt.

But there’s something I wish I could say to Robin and to anyone else now facing chronic illness, and that’s that it doesn’t have to be a life sentence. Chronic illness and disability doesn’t mean your life is over. It’s just an ongoing quest for adjustment and finding joy in different things. It would be the biggest lie of my life to say it’s easy. I struggle with it every day. But I’m still me, I just have to find new ways to be me. In a lot of ways, I know myself better as the result of this illness than I would have without it. But I admit that’s sometimes a big trade-off for what gets taken away.

I was thinking about all this yesterday morning. I had one of those foggy, dehydrated headaches. I hadn’t slept very well. My arms and legs were shaking because I was so wobbly and low on energy. But I also wanted to do something big. To be honest, this is how most days go – a negotiation between what I want to do and what my body can realistically handle, ending with some kind of compromise. But still, thinking about Robin Williams and wanting so much to show that you can still achieve things while living with chronic illness I got dressed and went out. I walked by myself to the train station and caught a train to Cardiff Central Station. I hadn’t done this by myself yet. Being a hub station it’s always incredibly busy. It was also Mardi Gras day and there was a Cardiff City football match a few stops down the line. The train ride was quite unpleasant too, given how unwell I was feeling.

I made it to the station and sat on two different benches, letting my balance settle before leaving.

CARDIFF CENTRAL STATION

I very slowly walked my way over to the Hayes area, where all the shops I needed were. I spent a couple of minutes chatting to the ladies in Jo Malone and then got most of what I needed from the John Lewis beauty hall before exiting to another bench. I must have sat on five or six benches while I was in town.

CARDIFF LIBRARY

The last one, which I sat on with my tea and cake deciding if I had the energy to catch the train home, had the pleasure of my bum being parked on it for some 45 minutes before I felt able to move off again. I got to the station, found my platform and let another train take me home. Just like the last time I caught the train home from the city centre, those final few streets from the station to my house felt almost impossible, but I made it home again.

TICKETS

I don’t always make the wisest choices when it comes to this illness. It certainly wouldn’t have been advisable to do what I did yesterday given how rough I was feeling. And it only really hit me later in the evening how big a deal it was that I’d been to Central Station and home again by myself. When I’m trying to do something I have to try and be cool and concentrate on walking without falling. It was only afterward that I realised what I’d done. But I needed to prove to myself as much as anyone yesterday that my life doesn’t have to be limited. I took a step forward in my own emotional struggle against being restricted. In the process and maybe if someone comes across this post while trawling the internet, I hope I’ve given someone else a little boost too.

Sweet dreams, Robin Williams. Thank you for everything you gave us, even when maybe you didn’t really feel like giving. And thank you for everything you’ve left with us. You touched more hearts than you could have ever possibly understood.

 Robin Williams

Every Sunday I record my health achievements and discoveries for the week here. To find out why I decided to start doing this, you can read an explanation in the first post of the series here.

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