Level-Up: Part 34

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Learning how to manage chronic illness can feel like you’re the magic act on a variety show bill. All your wondrous tricks are, of course, for yourself. Each seemingly impossible feat you make a reality gets you one step closer to what feels like a happier, normal life. But it’s not just for you. It’s also for the people who experienced the worst of times with you and never complained, even when you encouraged them to. Your improved performance is both your apology to and your reward for those who held your hand when you didn’t even have the strength to walk out onto the stage. And you hope they’re still watching.

That hope for a round of applause sometimes comes off as neediness. Maybe it is a little infantile and pathetic to require such regular validation that you’re doing better. “Look at me! Watch this amazing thing I can do now that I couldn’t do before. Ta-da! Look at how well I’m doing. Please tell me you can see how hard I’m trying to dazzle you.” It’s not attractive, but you want so much to repair yourself and all the damage done by your earlier lack of resolve and when you had lost yourself to the illness that you need it. You need to know that you’re healing wounds. Both your own and those you caused.

Ambition is, for better or worse, ingrained in my personality. I am never happy to just accept that I have done enough. Which is why being pinned to the ground by an illness I couldn’t control brought on so much anger and frustration. As soon as I get one thing right, my immediate thought is, “What’s next? And can I do it even more impressively than the last?”

The queasy train rides, the shopping trips I attempt alone and the busy social gatherings I navigate my way through are my sawing a girl in half, rabbit-from-a-hat, escaping from an underwater straightjacket. They’re the things that hopefully make people ‘ooh’ and ‘ahh’ and feel proud that I’ve done something special. They give me a big charge of electricity too. Like all magic tricks, only the magician knows how much work and almost clinical timing goes into making something impossible somehow possible. So it’s doubly exciting for me.

But it’s the quiet moments when I’m alone that show me the real shifts in how my efforts are paying off. When I attempt something new and big and scary, I’m blagging it to a certain extent. I have no idea how my body and brain will react to the situation or the environment. Nothing but a shot of rickety courage gets me through those events. But it’s the subtle nuances that only I can see that make me give myself a private clap of appreciation. It happened three times this week.

Wednesday wasn’t a good day. It was cloaked in the kind of thick, all encompassing disequilibrium that makes walking on concrete feel like sprinting on a road made of feather pillows. The weather was heavy as well; sopping air pressure that feels as if it’s uncomfortably squeezing your head without a second’s relief. Regardless, I decided to go for a walk. And in fact, I only realised just how wobbly I was feeling some five minutes in. I wanted to turn back but I didn’t want to be dictated to either, so I proceeded.

On top of the wobbliness, I was having severe bursts of vertigo. The floor was seemingly bouncing under my feet while the trees, houses and people around me spun. With every twist I could feel an icy blast of adrenaline shooting up my spine and into the back of my neck. Some shots were so intense I actually said ‘WOAH!’ out loud. Nobody heard. My instinct was absolutely to freak out, curl up in a ball and wait for it to pass. But nobody wants to do that in the street in front of the newsagents on a busy Wednesday lunch time. I talked myself through it. I reminded myself that I had experienced this before and that as long as I was careful, stepped slowly and didn’t let how unstable I felt overtake me, I would make it home safely.

Nobody else saw that. Nobody else could feel how awful I was feeling or could tell how much mental strength it took to cut a path through it. Just me. And to be able to do that is a much bigger achievement than most people will understand.

Wednesday continued along the same theme. In the evening I thought a bath might help in calming my imbalance before bed. I put a face mask on and applied some hair dye while there for the sake of multitasking. I removed the mask and stood up to start rinsing my hair in the shower, but the room immediately started spinning. It was like being on a carousel from hell. Knowing I was likely to be on the floor soon, I rushed to rinse the dye from my hair but before I could finish I had to bail. I was either going to vomit or pass out or both. None of which sounded appealing while naked and dripping with red hair dye. I made my way to the floor and stayed there wrapped in a towel for a while until I was able to make it back into the shower to wash the rest of my hair.

It was terrifying. Being constantly wobbly is one thing, but those powerful vertigo attacks are so debilitating that you feel utterly powerless. To avoid tears, I tried laughing at myself. I tweeted about it and tried making a joke about the unpleasant sensation that was sitting on the floor with red dye running down my back, trying to save the grey mats from turning pink. For the most part, it worked. Nobody really understood how hard it was to laugh off that kind of terror and control my response to having my heart in my throat. But I knew.

My final subtle but arguably most significant success came yesterday in my most frequented coffee shop. At this particular place I tend to either order their vanilla latte or their gingerbread latte. When you order the gingerbread they ask if you’d like cinnamon on top. When I ordered mine yesterday the barista popped her head up from behind the milk frother and said. “Would you like some cinnamon on your latte? Oh it’s you. That’s a yes then.” She knew because I’ve been there so many times that I’m a regular now.

A regular. It’s not quite an episode of Cheers, but do you know how long it’s been since I was a regular anywhere but my house and my old office? It’s not just somewhere that I go a couple of times a week. It’s somewhere that I walk to alone and when I walk through the door they already have a rough guess at what I want and how I want it. They recognise me. They ask me how my walk was, because they know it was a struggle for me just to get there and make it through the door.

It’s a tiny thing for everyone else. I’ll bet nobody thinks about it when they’re shopping in their town. But when you lose the feeling that you fit in anywhere or with anyone and you get a taste of recognition, that small piece of belonging is huge. Illness puts barriers up and mine in particular keeps me away from feeling completely part of any crowd. So this might just be my most impressive magic trick yet. It just happens to be that I’m the only one who saw it.

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.


4 Comments on “Level-Up: Part 34

  1. I’m so sorry that you have to do all of this alone. At the same time, it’s great that you are building independence. I would like to go out for a walk with you now and then. Would it be better with a friend to lean on, or would you have made less progress?

    PS: Did you save the grey bath mat??? 🙂

    • During the weekdays everyone else tends be at work in different parts of town, so if I want to go out during the day I have to do it alone. But that’s not a terrible thing. It means I’m learning to do things by myself again. Even when I’m out with other people I try not to hold on to them, but sometimes I have to do it if things gets busy around me so I don’t get disorientated. I would love to be able to go for walks with you. Stupid geography!

      And yes, I think I saved the mat. But I haven’t seen the results from the washing machine yet. Fingers crossed. 🙂

  2. *applause*

    Well done for doing all those things and not just giving up and curling up in a ball on the floor (minus the hair dye incident, of course),

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