The reason I write (or don't)

by Hilla Duka

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It feels like I’ve been quiet for ages, but I guess it’s not much more than a week since I posted anything. I’ve had my hands full, in a manner of speaking. I’ve been battling windmills for a while now, in the unwelcome form of my insurance company. Through work I had a health insurance with Skandia, and after my diagnosis with advanced breast cancer, they decided to dig deep into my old medical journals, to come up with some way of denying my claim. So first they went with an idea that I had asthma, and that because of this they wouldn’t have to pay. Then as I could prove I didn’t have asthma, they went further back, and found a post partum depression, and claimed they wouldn’t have to pay because of this. I was basically just set on fight mode - not for financial reasons, as my lovely work, recognising vultures when they show their faces and not wanting to be any part of that, are financially levelling what Skandia are refusing to pay, but because the more I tried to sort it, thinking it was all just an unfortunate mix up, the more I realised that this is something Skandia have systematically been doing for ages - dragging very sick people's medical records through any alchemical mix they can whip up, to try to make anything, a prescription for cough medicine, seem like a good reason not to pay. So finally I had enough, after hearing the same story from women in my breast cancer group, from my doctors office, I decided to go public with it. Not because I like to take my dirty laundry public, or because I enjoy feeling like a victim, but because it’s not right. It’s not right what Skandia does, but as much as it hurts me that they get away with it, I now need to draw the line and admit that I can’t fight any more - I must focus my energy on positive things, and try my hardest to stay well for longer.

 

Then as the story went public, I had my round no 7 of chemo. I have to be really grateful for two things: It was not as bad as chemo no 6, and the worst is over now. I should probably be grateful for more than that, but as I’ve felt as if I’m pregnant with a Coca Cola baby now for a week, that’s about all I can muster. The hyper sensitivity thing is really freaking me out: I can smell someone’s perfume miles away, I hardly allow Ilir to put any on. I can smell the citrus scent of peeling clementines from across the room, and the smell is so strong my eyes tear up. The little new hairs on my head hurt my scalp as they move. The list is endless, and it’s surprisingly hard mentally to never be comfortable.

 

I guess that’s the other reason it’s been a while since I wrote any kind of update - this whole cancer thing is really starting to wear me down, mentally. Some days, it’s as if I have to go through the realisation all over again, because my mind has just stopped remembering to understand that I have cancer. All of a sudden, the notion that I would be ill seems so ridiculous, I want to laugh at it. And then I remember, I touch my portacat and the cord that goes into my main blood vessel, I feel the tiny hairs on my head, and look down to see my blackened fingernails. I think back on all the countless of procedures and checkups I’ve done, the lymph node biopsies, the bone marrow drilling, the lying in tiny machines that force me to take such coctails of anti anxiety pills that afterwards I can’t even remember I did them. Ok, so cancer kind of makes sense then. But only kind of. Part of me is still waiting to get up and get back to work, to be apart of something more, to laugh with friends over silly things and just not be dying.

 

But perhaps it’s the other way around - perhaps I’ve been feeling worn out because I haven’t been writing. There are so few things left to me now, and around the first week of chemo, I basically only see my own home. The one thing where I am completely free is in what I write, there I can still explore my own mind, and when I feel like it I can be (a bit) witty, and I can focus on whatever I choose. I chose, as I found out about the cancer, to keep writing so that i could preserve something honest from this, something more than social media updates that even at the best of times will not paint a true portrait of your life. Imagine how fake it is during the worst of times… So from the beginning I used this blog to be uncompromisingly honest, to write about what moves in my head as I’m trying to learn how to do something each and every one of us will have to do at one point. I kept writing because it became something I have built by myself, from the technical framework to the texts. I kept writing hoping that it might some day help the kids to read. But I think one of the key reasons I write, that I missed but that matters, more than all the others, is because it helps me. Maybe writing obscure bits of texts on life and parenting and death and chemo has become my second therapist (much cheaper than the first I must admit), and I can no more chose not to write when I feel too sad than I can chose not to eat when I’m starving? What a very twisted thought. Weird, but oddly comforting...

 
This little guy on top, the least magical creature in all of Fairy Land, was originally doodled at the plane back from our holiday. Today, he can  represent me in my utter failings as Don Quixote. 

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