'Burn and dance because what is healed is dead'
Reading corner Prayer
by Ranjit Hoskote
Don’t ask
for the wall of the skin to break
the light blue line of morning to be drawn
across your eyelids
the first watchful parrot of the day
to ambush you with prayers
Peel back
every proverb you were taught
to reveal the raw welt of ardour
until you find
where the reluctant chronicler wrote:
Burn
and dance
because what is healed is dead
Healing notes
It is coming to be the four years anniversary of a doctor telling me for the first time that my pain was real. She also named this illness something way before any other doctor would. It was a relief in so many ways but years later I struggle so much with naming things. Recently, I was away from my home, at a workshop, in a city where it was cold. I had been in pain for a few weeks already and the pain was refusing to ease. I was doing everything I had learnt to do and it just didn't get better. I tried getting up once from my chair and failed. I was sure I would break down in front of the entire room of young girls. So I did what I needed to do to function. I disassociated for the next few days - to be able to get home before I broke down.
I returned home to such relief; to be back in my bed. My therapist and I worked our way through both the emotional pain of feeling that helpless and the physical need for me to be with my body in the worst pains. I think its among the hardest things - when you realise that the pain can get worse than what is manageable and you might not be able to stop and rest. This is not an easy realisation for me. Sometimes I don't count my monthly expenses because of fear of realising how much my medical expenses are. In the middle of all this, when things get worse, I need to experiment to see if things get better and that's always expensive. So a loop of expenditure let's say?
I wish sometimes that I found it in me to continue without trying out new ways to ease the pain. Other times, I remember the texts from my friends who are in the same boat - well, similar boats - and the things we do to get through our days. None of this is perfect, easy or even manageable. But we do it anyway. And on most days, it's not cause of our bravery but because of the lack of any choice. I don't know what kind of fire I would have to do things if I didn't need to sustain my monthly, consistent medical bills. Would I be more depressed - because of all the pain? Would I take less meds because I could afford to rest more? I have no answers.
In my irritation of a terrible pain day, I texted a fellow chronically ill friend about how frustrating it is to realise your mind wasn't playing tricks on you and somedays it actually hurts terribly. How I hate that I forget this feeling every once in a while. She replied saying: Cause when it's not there, it's hard to believe that there could be a pain so bad you can't function.
This is true. I have spent many many months in therapy trying to reacquaint myself with the idea of, it could get worse or it could get better. I am awfully harsh when I am in terrible pain and suddenly realise that I had forgotten how bad it can get sometimes. My therapist tells me, its good to forget it was worse. It is good to get used to the moment. I hate losing control so I find myself turning against me to find something to be mad at. But slowly, steadily, I find myself getting used to the cannot-give-you-a-pain-scale-number days. Then I find something that gives me relief - many hours of sleep, some respite, some treatment that helps and I find myself going again. It is beautiful (because we are such resilient beings) but also frustrating (cause can it stop see-sawing all the time!!). I wish there was something more stable in my life (don't we all?). But as I told my therapist in my last session, maybe my life's lessons are to break all the binaries I was conditioned with - right and wrong, alive and dead, man and woman, healed (cured) and broken, normal and abnormal - to find myself in the wide space in between or fluctuating between these extremes that I've learned to see as opposites. Finding myself dancing and living. Thriving in the moment :)
Food experiments
I must say this was the laziest meal I made in a long time. I boiled some water and added spaghetti to it. Eventually drained the water once the spaghetti was cooked.
In another vessel, I cooked cut up mushrooms and capsicum together. Eventually I added two kinds of sauces that I had in my house - oops! Some Siracha and some sweet and spicy thai sauce!
TADA! Quickest bowl of noodles for the bad pain days! :)
Dear you,
It has been a busy and difficult few weeks and I am sending this late.
Hope you all have been well <3
Love, kindness and warmth,
Nidsitis
'I’ve been circling for thousands of years and I still don’t know: Am I a falcon, a storm, or a great song?' - Rainer Maria Rilke