From Costumes to Capes

My health hiccups are like a superhero costume. I keep them under wraps, a private spectacle that I shield from the attention of those around me. I don’t wear them on the surface, they do not show there. Like a superhero, I pass for an ordinary person, masking what goes on within, hiding the differences between me and the rest of the world. I wear this thing that so many people have heard of but do not fully understand, things that, if I were to wear them out in the open, people would stare at just like a superhero costume, things that would detract from the person beneath the super-suit and gain me far more attention than I would ever be comfortable with, things that people would label me a freak for, things that make people view me as an alien (just like they did to Superman).

And that’s what life with health hiccups is like, I guess. You carry with you this mysterious thing that people have heard of but are not aware that you have unless you tell them it is there. You wear this superhero costume beneath your clothes, sometimes even beneath your skin. Nobody understands what it is like to live with it, the duties it binds you to. But it forces you into a role you did not ask to occupy yet are obligated to maintain. It forces you to find a resilience within yourself that you may otherwise never have had reason to stumble across.

The presence of this superhero costume means that sometimes you miss major events – birthdays, Christmases, family gatherings, social meetings… To do what those who wear the suit are required to do. But it isn’t a citizen in distress that calls you, it is your own body, your own cells, calling you to bed and keeping you there, or calling you back to a hospital. Without warning you are required to respond to the situation as it demands, just like people in comic books who wear actual superhero costumes. And then quietly, after the toughest fight of your life, with the superhero costume of your health hiccup(s) torn and fresh wounds raw against the façade you wear in public to cover your abnormality, you walk back into normal life. And only the thing that you saved understands the achievement that this is – you, your own body. Only your doctors watch on in awe as you do things you probably shouldn’t and prove that your body is a little superhuman, they know you wear the superhero suit. They know that you wear a suit consisting of many health hiccups swirled together, and they stitch it back together when it falls apart and your health falters. But you don’t show it off. You smile subtly, you button the shirt of normality over the superhero costume of your perceived weakness, and you walk side by side with everyone else until you are called to fight again. They have no idea what it is like to carry that weight on your shoulders. They have no idea the sacrifices it has forced you to weight or the things it has taken, or the way it has affected everyone you know.

The difference is, I don’t feel super. I wear my health hiccups like a superhero suit, in that I hide them. They are not obvious, and yet they are ever present, always there – just like a superhero costume, and because of that constant presence, they could call me into action at any minute… It makes life a bit of a waiting game – a waiting game until the next time the length of that life is threatened or called into question, and the tension of that is at times notable. Except there’s nothing I can do. It is down to my body, and that is the bit of me that is superhuman. A couple of my doctors joke and tell me that I’m some sort of superhuman to make it through the things I go through so frequently and remain so unscathed. I bounce back remarkably quickly from pretty desperate situations – doctors tell me I’m lucky, that the next time will be the last time, or that I am in a game of Russian roulette and have somehow survived tens and tens of consecutive shots from a gun that only has six barrels, such should be the impossibility of my body getting up and carrying on. And yet it does. It ends up in a wheelchair. It ends up unable to lift its own head, unable to breathe, bedbound, or in ICU or CCU… But it always always (given a surprisingly short amount of time and stupid levels of determination to defy all odds against me) carries on somehow. And the people I know take that for granted – very few of them have seen how unwell I am. Very few people appreciate how outstandingly ridiculous my body is in its ability to survive things that every time they are experienced have the power and a scarily significant potential to kill me within hours, and very nearly do. They have no idea that I wear that superhero costume. And I am embarrassed to wear it still. I feel like a freak and I am ashamed because those are attitudes that have been instilled in me by other people.

Myhope is that one day there will be no stigma around health issues, that one day people my age and younger will not button them up beneath shirts of normality, but instead will wear their health issues like superhero capes, flying free and proudly behind themselves, trailing in the slipstream of their achievements and ambition instead of wrapping themselves around the people who possess them and having their presence ever felt. I am in no way super. But there are a large number of people whose health truly does make them superheroes in the way that they overcome it, and they walk in plain sight among us, hiding their colours. There are some incredible people who wear visible signs of their health issues on the surface of their skin – NG tubes and stoma bags and wheelchairs and IVs… There are people who cannot hide. I have been in the situation of not being able to hide, and I am deeply ashamed to say that there were times when I wanted to melt away or evaporate and escape my own skin. But there are people amazing enough to have the power to embrace these things. I hope one day superhumans can just walk freely among us. I hope one day none of them have to hide, that they all wear capes like some already do.

The costumes I talk about these people wearing are not made up of lycra and logos and symbols – they are (for example) surgery scars, ostomies, permanent lines, transplanted organs, missing limbs, genetic conditions, irregularly shaped blood cells, poorly functioning immune systems, organs that will not function in the ways they are required to do so, mental health problems, “invisible” (yet debilitating) illnesses, eating disorders etc. … They are things that a lot of people could not imagine living with, things that cannot be obviously seen in most cases. They are things that the healthy use to define and label and write-off the people who carry these things with them. They are things that at times those people feel or felt the need to hide from knowledge and (where possible) from sight. They are things that give those people an appreciation for the simple things, that give them a determination and a resilience that is unheard of, that force them to display a strength that they do not believe is there. People like that are people I look up to. They show me how stupidly pathetic I am. And they’ll never admit to it, never even believe it, but their achievements are superhuman. The difference is that most of the time they will feel inadequate, they will not believe anybody who calls them brave or strong or whatever because in their opinion they are not; they quietly continue with their lives, struggling silently, fighting emotional battles as a result of the things they are forced to deal with on a day-to-day basis; they feel like burdens, like weights around the ankles of the people they care about which drag people below the surface of this ocean of life that we are all helplessly thrown around in.

I’m sure we all know at least one superhuman (I can think of one incredible little girl across the pond, whose “power move” is her INCREDIBLE and ever present smile).

And I bet most of us don’t even know it. Because they aren’t displayed on the surface. They aren’t obvious. But they make us different. They set us apart. They shape us in ways we might not want, but in my case I am thankful for the things I now appreciate in ways I never would have without the things I have been through.

At the minute though, my superhero costume needs patching up. Lying in bed last night my heart had a little party. I became incredibly dizzy, couldn’t find a peripheral pulse, and could only just feel a very, very weak and thready pulse in my carotid artery. I developed a horrible headache, I couldn’t breathe unless I propped myself up with pillows and even then felt like I was breathing soup. After just minutes of this feeling, the intense crushing ache in the centre of my chest spread out to my neck and shoulder, but I was flopped on the bed like a beached whale. I didn’t have the energy to move my arm to pick up my phone, I couldn’t move. I didn’t have the breath to call for help. So I let myself slip into unconsciousness and hoped I would wake up. I did wake up, but my heart felt strange and breathing was difficult unless I sat up, which I didn’t have the energy to do. It was uncomfortable and alarming. I cheered Mo Farrah as he won his third gold medal, and then passed out again. I messaged my fellow third wheel eventually and he asked me to please go and get some help. I passed out again before this even happened, and when I came round half an hour later I was too dizzy to move. All day my heart has felt weird… Just weird. And I can feel the other hiccup (that my consultant wanted to hospitalise me for a couple of weeks ago) deteriorating alarmingly (and it was already in the early stages of a medical emergency).

Anyway, no way but through.

 

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