“You know I said I was going to live every minute of every day? I think I’m going to live every other minute. Of every other day… With tea breaks” – Hugh Dennis, Outnumbered
The above statement is something I could not be blamed for saying right now; in fact, it is almost certainly something I am expected to say, especially by those who see through the old lie of the words “I’m fine.” It is a situation I’ve been in many times – a slight improvement in my health after a hospital admission that takes my hopes and expectations of myself into the stratosphere, only for my former state of uselessness to return days later and quash any chances of me doing all the great things I told myself I would.
I hit the living every minute of every day stage a couple of days after my last emergency admission a week and a bit ago… And then something good happened, and that ridiculous attitude seems to have stuck. I am tired of tea breaks. I am tired of every other day because it is never every other day. One day a week maybe. Then one day a fortnight. Then an inability to walk, to function. No longer living, existing, watching everyone else do everything I used to take for granted. Grinding to a halt, slowly. More unwell than most can comprehend. Should be in a hospital but won’t go out of a desperate hope that I might claw back some normality. And then another medical emergency that I held myself out of with unorthodox methods for far longer than I should have, in a stupid hope that it would allow me to carry on, that things would somehow get better.
In my mind if I never accept less than every single day, nothing bad will happen. It will never become one day of living a week. Never one day every fortnight. I will never have to admit defeat. This is stupid. It potentially (but not very likely) means bad things will happen faster, but I will be immensely happy in between, and that is the difference that seems to justify the whole thing to my brain. Limitations are not living. Dreaming and aspiring and daring to do the things that people tell you that you can’t… That is what makes a person feel alive. That is why sensible will not see me through. Sensible involves being a prisoner in a jail run by my own organs. Sensible involves drowning in clinical depression and isolation and immense frustration that my legs cannot run like I want them to and I do not feel human any more and watching people walk out of my life because they don’t want to deal with me or be held back by me.
Stupid… Stupid involves living. It involves fun. It involves feeling 20. It involves people looking no further than my apparent ability to human and sticking by my side with no idea that my body is… Totally not up to the things it is doing. It burns me out faster, my health issues become a firework instead of a slowly burning fuse. They go off with a bang and grab the attention of a lot of people. And non-medical people judge me for that. They shake their heads, they tell me I am stupid, they look at me with disgust.
But do they not see? I was going to end up here anyway. Maybe I would have had a day longer. But there certainly would have been tears. There would have been defeat and loneliness and a crippling futility. I would have felt left behind. I would have been left to deal with it all alone. People I thought would always be there would have walked away. I would have wanted to end it all. Every second of every day the future would have played on my mind, the waiting. When will he come again, my old friend the grim reaper? When will negotiations about the length of my life take place with that old fool again? Do they not see that this is agony? Do they not understand that it is not living? I am happy now, and it has given me an overwhelming determination not to let go of that again. Not ever to take a day off, because even if I settle for every other day I could end up in hospital again whenever. Pushing this body will not make my health issues any worse, it will just make me exhausted. When I listen to my body and play by its rules, I get no further. I stay out of hospital no longer. I just hurt. I lose more than I was ever willing to let go of.
But it isn’t just that. I don’t want to go back to the wheelchair. Since being in hospital, my legs can hold me long enough for me to walk a little way. That freedom is a feeling I grabbed hold of and ran off with – independence. Ability, for once. To me, Winston (wheelchair) represents a physical embodiment of my incapability, and I am not ready to become the helpless person that requires his assistance to get around. My body, for the moment, has found its wings. I know it is temporary. I know I am Icarus. I know I am flying way too close to the sun and I know I will crash and burn… But nobody seems to understand that my health deteriorations are independent of my actions – my body decides to malfunction even more spectacularly at seemingly random moments. Sometimes triggered by infections that my immune system welcomes in with open arms, sometimes because of hormonal changes, sometimes apparently just because it can (ok so too much activity can sometimes really annoy my heart but that currently isn’t my biggest issue). People refuse to accept that there is nothing I can do to change that. But people don’t matter, any more.
This afternoon the old school friend who I am going to Edinburgh with the weekend after next, came round so we could plan out our itinerary. We planned things that the old me would have no trouble doing, that most moderately unwell people would take in their stride. Everything is within a mile of where we are staying, so it’s not too much walking but to me… It’s probably too much walking. Way too much, actually. But we’ll take it slow. We’ll stop a lot. I refuse to surrender to myself. I refuse to accept that I can’t do that. I will find a way. I don’t know or care how but I will find a way. I’m tired of tea breaks. I’m tired of being tied back.
“Where are you going to find the energy to do all of that?” My mum asked when she saw it.
Nowhere, there is nowhere near enough to spare. Somewhere. Anywhere. Everywhere. Good point. Stop it. I don’t even know how but I. Am. Doing this. My denial spoke up over the panicked realisation that I currently am unable to do that amount of walking. But determination is a funny thing. I can keep going when I should be unconscious. I walk to the hospital in situations where I should be unable to move because I’m that unwell, and then induce a panic when my blood betrays me and tells everyone how screwed I am.
“Are you ok?” My friend had asked as I was typing up our schedule and figuring out what number bus we would need to take from which stop at which time (we’ve even booked restaurants and planned to go to a cocktail bar and I have dreamed of this since I missed my planned trip before due to my body being a poop, and I AM SO EXCITED). When I asked why, she said, “Your breathing is really heavy.”
“Oh yeah, it does that.” I replied, not bothered by it or what it meant. Too focussed on living to think about things that could potentially bring about the opposite.
And now, I am about to commence packing for my trip to Norfolk with sixth form friend (we leave tomorrow morning. Yes I left it way too late), his girlfriend, and the guy that I at one point a couple of years ago had a crush on. We are staying in sixth form friend’s static caravan in an awesome holiday park right by a really nice looking beach. We will laugh and drink alcohol and be stupid and sleep in late and have barbecues on the beach… And there will be no wheelchair, because there is no room in the car. And I cannot wait to feel 20 again, free of the kind of issues that play on the minds of old people, thoughts about the future and a horrible niggling obligation to write things to leave behind in case you leave the planet before you’re ready to go… I cannot wait to let everything go, to forget everything for a week and lose myself in day after day of feeling so, so alive. An entire week of living beyond my limits, and then a week afterwards to do nothing but sleep until I go to Edinburgh.
I’m so happy.
I’ve had enough.
No more tea breaks. I’m not paying this body to slack off and lay around.
No way but through.