Showing blog posts tagged with: hear me roar

YOU HAVE TO UNDERSTAND, THAT NO ONE PUTS THEIR CHILDREN IN A BOAT UNLESS THE WATER IS SAFER THAN THE LAND

by Hilla Duka - View comments

sunset over the ocean

I’m so lucky, it’s ridiculous. Here I am, with my cancer ridden, broken down body, my fear of leaving my amazing boys, and the more or less constant pain. Oh, and there’s the little detail of the fact that I will most likely die way before my time, and I will still say that I am so lucky it’s ridiculous.

When I found out I have cancer my friends, family and coworkers gathered to offer their sympathies. Mynewsdesk, the amazing company I work for, guaranteed me that I would keep most of my income during sick leave, so that I would not have to worry about money in the middle of all of it. My colleagues in Oslo and in London sent flowers, and baskets full of thoughtful cards and loving gifts, even customers reached out with caring letters, and I don't even have a customer focused position. Acquaintances became friends, and my best friend and the father of my children became my husband. The outpour of love and well wishes was, and continues to be, simply amazing. I received so many messages of hope, love, encouragement, and I was only one person. One person with bad luck and a limited future. So you see, I really am so very, very fortunate.

 

Others are running for their lives, fighting unseen and unheard, drowning in waves of indifference, their future washed away, simply for having the bad luck of being born in the wrong place. The images are horrible, they are literally the very worst thing imaginable, yet if they lead to a more humane stance towards refugees, if they can elicit compassion and make people understand that we have a moral obligation to help, then perhaps publishing these images are worth it. Because the very simple truth is - it’s about human lives. Human beings are running for their lives, and if that is too hard to understand, if you can’t understand the truth of the now iconic “You have to understand, that no one puts their children in a boat unless the water is safer than the land”, then there is something fundamentally wrong. People are dying on the Mediterranean because we won’t let them take an airplane. Because their homes are war-torn and we’ve stood idly by. The only decent thing to do now is take care of these people. Let them in now and sort out the details later. There are a number of great organisations helping, the Red Cross, Medecins sans Frontieres, or smaller initiatives, like Blogghjälpen, set up by a group of Swedish bloggers and aiming at raising 50 000 SEK for UNHCR. We can all do something to help them help. 

 

My employer, Mynewsdesk, sent out an email on Friday, with the modest title “An early Christmas present”, letting us know that in answer to the nightmare on the Mediterranean, they’re donating €50 for each of us to the Red Cross, it made me feel so very grateful. Considering how many employees we are, this is a donation of almost €9000 to the Red Cross. Most companies give their employees some form of Christmas presents. In my opinion, a donation is much more valuable and appreciated than some piece of plastic that will lie around unused. Why not deliver your Christmas presents early this year? People are dying, and because of a small child and a horrible picture the world is finally taking notice. Let’s make the most of that momentum, raise as much money as possible, change as many minds as possible, get as many people into safety as possible, now.

 

I may not be around in twenty years, to face the questions from my kids, see their faces as they ask what I did in face of this humanitarian crisis, but if I am, I will not have to tell them I sat idly by. I will tell them that I did what I could, and that I am proud the company I work for did as well.


Title is a quote from a poem by Warsan Shire. Please take a minute to read it, it is incredibly powerful. 


Death and corsetes

by Hilla Duka - View comments


black and white drawing of little creature going mental at other people's stupidity

I’m meeting a woman at Olmed, an orthopaedic service company working with hospitals, to improve life for people with handicaps. I’m there for a consultation about maybe getting a corset, to help with the pain from the metastasis in the skeleton.

 

The woman I’m meeting: So you’re here to be fitted for a soft corset. It says here you’ve had breast cancer.

Me: Have. I have breast cancer.

She: Then you’ve just recently been operated?

Me: No, I’m terminal.

She: What does that mean?

Me: It means there’s no point in surgery. It means the cancer has spread, it has created metastasis, amongst other places in the skeleton, which is why I’m here to discuss if a corset could help me.

She looks at me as if I just told her I come from another planet. This goes on for quite a while longer than what’s comfortable.

She (finally): I don’t understand. Are you scheduled for surgery? It says here that you’ve had breast cancer. I don’t understand.

Me (possibly a bit more agitated than normally): HAVE. I HAVE breast cancer. I will have breast cancer for the rest of my life. Terminal means I will die from it. There’s no cure and surgery won’t help. Now do you understand?

She (quite disbelieving, challenging me): So you’re going to die? From breast cancer? And when will you be doing that? Well… It doesn’t say that here. It only says breast cancer. (looking quite annoyed at this interruption in her day). Shall we get you fitted then?

 

We don’t talk much more after that. She gets me fitted for a corset, half tosses me a brochure, as if she’s afraid to touch me, or look me in the eyes. As if she could catch it if she gets too close.

 

What I want to say, but obviously I don’t, is this: I hate you for making me spell it out. For making me say the words. I know the deal, but I try not to think about it. Until people like you force me, and then it’s there in my mind, the truth is etched in and won’t let me pretend. I hate you for being ignorant and healthy and I hate you for the fact that I am not. Learn fucking words. Understand what terminal means.

 

And the sad truth is - even nurses and doctors, people who work in healthcare, when informed I have breast cancer assume I've had surgery, assume I'll be ok. They assume that I'm not terminal. Because we have such great medicines, and mammograms and early detection and what have you, and it’s only like 2% of all breast cancer patients who are as young as me and find out so late. But I am one of those 2%. And every time you force me to spell it out it hurts, and I walk around for days with the wound opened again, the grief fresh and sharp. Wounded, exposed, fearful, sad.

 

Today it's one year since my cancer journey began.


black and white drawing of an angry bat


Good days and bad

by Hilla Duka - View comments

2014-11-22_21.27.23

How can you stay so positive? It’s not just once I’ve had that question, and I hope, if my dreams of becoming a miracle patient go pear shaped, that my kids will remember me as someone who was happy. Because I am. I am and I’m not, you know? It’s a landscape of extremes. I am so incredibly happy for what I have, more so than ever before. It’s in some ways as if the cancer diagnosis put new glasses on my nose, and I can see everything so much clearer, feel so much stronger. I love my life, and the people in it with a new sort of ferocity. I never knew how much I would be willing to sacrifice, just to stay around with them a bit longer. As parents, we often say how we would give an arm and a leg for our kids, now I get to see how true that is.

Milo and Jonathan

And at the same time, trust me, I’m not so bloody happy all the time. I cry, so unbelievably much, it’s insane I haven’t dried up yet. It’s inconceivable to me that I will die, long before my time, and not see my kids grow up, not be there for them. And when the realisation hits me that this is a likely scenario, it smites me down every time, and there I am, floored, crying my eyes out and making sounds that don’t belong in a human mouth. I can live with my present, I can live with looking odd and being in pain, but I can’t live with the idea that I will leave my loved ones. So when that idea takes a grip on me and holds me in it’s claws, I’m not so positive anymore.

 

I’ve lost quite a lot of functionality in my right hand. Chemotherapy induced neuropathy, it’s called, and apparently it’s here to stay - at least for as long as I am. I am, of course, right handed. I can more or less type on a computer, though not write by hand. I can’t draw much, or crochet, and I really shouldn’t hold a cup with that hand. It hurts, or rather aches, quite a lot of the time, and it’s very swollen. Still, I don’t care. Take it - take my arm! I want to shout at the cancer, or the chemo - it’s very hard at this point to know who or what I hate. Take it all, if you will just leave me with some life left in me.

Ilir and Milo
These are the thoughts that go through my head, especially as I recuperate after another round of chemo. When my days are filled with vomit tasting and aches and pains and loneliness and mind tricks. And then I pick myself up, after these long days are over and I finally have some energy again, and I go out and have a coffee with you, and you ask me how I can stay so positive. This is how. There are good days and bad, even if I don’t show them all.


Not a warrior nor a princess

by Hilla Duka - View comments

Index_notawarrior__1_

Since I found out about the cancer, I joined a couple of groups on Facebook about breast cancer/ chronic cancer. Way too often, someone posts that another member has “lost the battle” or that “heaven has a new warrior princess” or something like that. Of course, I get sad that another woman has been lost to this absolutely horrible disease, but more and more, I find that the terminology offends me.

 

Do me a favor - when I die, don’t refer to me as a warrior princess, or a warrior at all. I’m not fighting for any ideal, and I’ve not been given the choice to fight or refer from it. Soldiers, warriors, fight for something. They are willing to lay down their lives, in order to achieve change. I never had that choice, and I’m not fighting for a grand ideal, I’m just doing the best I can to have more of my life. I am not a warrior, I am not at war with my body - I am trying my absolutely best to help my body get rid of a disease, just like it would if I got the flu. And in this life, if the measure of success is cheating death, then we’re all failing. I am just trying to have the best kind of life for as long as I possibly can.

 

When I die, don’t say that I’ve “lost the battle”. In fact, in no way at all refer to this as a war, because it’s not. If this life of ours was a war with the only measure of success staying alive, then we’re all losing. At one point, each and every one of us will die, that’s the order of life. And we can hope and pray that we have a good life and a long life and a clean death, but that’s about it. I hate that I have cancer, but I don’t think that cancer is my enemy. Cancer is my body’s misplaced attempt to correct something, an infection, that was going on inside me. It’s rotten luck. Cancer is not the enemy, because there is no thought or consciousness within it. It’s a horrible disease, that’s what it is. I’m not at war with anyone, and cancer is not an evil person. People who use these terms have a very loose grasp of the ugliness of war, the vastness of evil.

 

I made my brother promise that when I die he would punch anyone calling me a warrior princess or something to that extent in the face - that’s not how I want people to think of me or refer to me. Want to know what I am? I am a mother and a daughter and a sister and a wife, and most of all I am a person - one who loves her life and wants it for as long as possible. That’s all, and it’s enough.


People are people

by Hilla Duka - View comments

Drsuessquote

To my dear, dear boys: I’m sorry. Yesterday was election day here in Sweden, and of course I went and voted. I voted for a Sweden where people are not excluded because they have seen wars and hardships. I voted for a Sweden where everyone would have the same chances, where the world we leave to our kids is not polluted and filled with toxins. For a Sweden that would be better than the Sweden I grew up in. Sadly, almost 13% of this country’s inhabitants voted for something else. A country where we don’t see people as people, regardless, where those who’ve been through the worst should not find a safe haven but be turned away.

 

I have always told you that you are, first and foremost, people. You are Jewish because of me, Muslim because of your father, and members of this world most of all. I hope that you are too young to remember this election, and I hope that in four years time, things will have changed enough for people to realise that by putting yourself before everyone else, effectively there will come a time when you yourself are left out. That people are people, and our obligation as humans, if we want to stand tall and be proud, is to care for the sick when we ourselves are well, to care for the old when we are young, to welcome those who’ve escaped the hardest places in our world, when we ourselves have been blessed with a safe haven. This is the only way that we as people can walk proud, and it is also the only way we can hope that when we fall ill, someone will care for us. That when we are old, someone will care for us. That if our safe haven of a country will one day turn into chaos, where violence rules, someone will open their door for us.

 

I have willingly, in a planned way, left my home and my country to start over in a new place. It was still unbelievably hard for me. I had doors opened because of where I came from and how I spoke, rather than slammed in my face for it, and it was still so tough. I will never believe that anyone turns and flees their country in a manner that endangers their lives, just for the fun of it. And I will never stop believing that those who do, should find help, an open door, and the means to start anew. Because it will still be unbelievably difficult.

 

13% voted for a racist party, but I do not believe that all those 13% are actually racists themselves. I believe they voted out of unhappiness with the politics and politicians, and I can relate to that. I believe they voted out of a feeling of isolation, of being small and unimportant, and having very limited hopes for their own future. I can relate to that. I have very limited hopes for my own future. But we as people have a choice - we can choose to become petty and angry or we can choose to fight for improvement. But no improvement ever came from choosing pettiness over inclusion, from choosing the passive-aggressive cold shoulder over dialogue.

 

I hope that you will grow up to become adults who will stand against racism and injustice. And I hope that in four years, when it’s time to vote again, I will still be around, to put my vote to a party that is dedicated to fight racism and injustice, that will fight for equal rights for men and women, that will fight for a better, cleaner, safer world.