"If you’re reading this…" – this is the correct way to start this kind of letters, isn’t it? When I was little I was fond of various tearjerker movies, the ones about love surviving through a grave disease, with a doctor emerging at the end of a corridor, avoiding direct eye contact and shaking his head helplessly. And then comes the funeral, weeping relatives, flowers everywhere, farewell speeches and notes, “if you’re reading this, it means…”. In my eyes, it was all romantic and right.
And then I have grown up. And a thought of my life ending up on such a melodramatic note gave me the creeps. As well as the vision of emergency personnel dripping with sweat as they break my ribs in an attempt to restart my heart, and the vision of my fainting relatives. For myself, for this living person which I am, I want a different kind of departure.
A body in a casket, covered with flowers… no! Firstly, I want my favorite jeans with holes and a T-shirt with a sign “RIDE TILL THE END” to be seen. (I knew it already when I was buying it, that I wouldn’t just show it off in this life but would be wearing it as I would be traveling to another world.) And secondly, a big part of my life is (was.. umm, what tense should I use here? :)) devoted to charity. Healthcare charity – this is how it came about, I find it more interesting. I help finding money so that a person would get his/her chance to live. Or at least a chance to feel better. These chances – they cost money. No small amounts of money. It depends on how lucky you are – the amounts range from thousands to millions UAH. And I have to ask others, “Please help, please donate”, so that these people would get their chances. I’m not the one to challenge people with phrases like “Sacrifice your morning cup of coffee” or urge them to asceticism – this is not me. Yet, since we’re talking here about my personal funeral, I think I have the right to insist: don’t make flower beds in my casket, don’t spoil my image (fearsome Pterodactyl [Ira’s nickname] all covered in flowers sounds too saccharine). Instead, put what you were going to spend on my flowers, bouquets, wreaths, etc. in an envelope, to give a chance to someone still living. Believe me, I can live without flowers in my casket (ha ha!) but this money may give a chance to someone else (and I may even know them now by names). A chance for tomorrow. Or for an easier today.
It is said that in Great Britain they put up benches in parks and squares to pay tribute to the deceased. Socially beneficial commemoration. A bench by Pterodactyl – I’m not sure it fits into the picture. Still… if someone wants to have something tangible “in Pterodactyl’s memory”, let it be a bench in a park rather than a piece of granite on the cemetery. Or better still, some kind of a useful equipment unit for my beloved Bone Marrow Transplant Center. Or a hospice. Or a patient with some fancy palliative diagnosis – we have lots of those.
And yes, just in case, a bench on the cemetery by my monument doesn’t count!:)
In my teens, I used to be a perfectionist. “Save life at whatever cost,” – this was about me and about whoever was in my surroundings. I became a volunteer to save people. And then I got tired… tired of saving others (and they, bummer, were failing me on that), tired of saving myself. And when I was told, this is it, you’ve exhausted all of your treatment options, my first thought was, “Finally!” Since that very day, when I had found out that my time was about to run out, I’ve got indescribable freedom. Freedom to do what I want to do today. What brings me joy and happiness today. Not having to sacrifice something for the sake of tomorrow. Because tomorrow won’t come anyway. Three years of my life filled with happiness despite gradual shutdown. But three years of THIS kind of life were made possible only thanks to support from the outside. It is only a notion that life stops after a phrase “We can’t help you any more”. In fact, this is where the hardest things begin. When the need for others’ support increases by the month as your abilities get exhausted. When you need a bunch of drugs, medical consumables, etc. to make it through another day. Right, you can get by without them, for “this is it”, but when you are still able to do things, you’re not ready to lie down and die in one single moment. You want to use your time. Which costs money. And an effort on the part of people in your surroundings. As your own strength gradually fades away.
Friends who would come to “babysit Pterodactyl” after a phone call, who would bring a hamburger late at night which I all of a sudden wanted, who would drag a sledge with Pterodactyl’s body up the hill, who would cook yummies in my kitchen, these 3 years of my life would have been totally different without them. Or without those who donated me money. While knowing that I’d never get well again… Thanks to you, I had all I needed. Virtually, everything, even things which more ‘promising’ patients lacked. My small room was equipped in a way it looked like an ICU – and this equipment sustained my living. Living, not mere existence. Living it the way I wanted.
More often than not, dying from a disease is not a sudden or instantaneous event. It’s a process. Which is long and expensive. Expensive if you want to preserve your dignity and ability to stay active till the very end. Expensive and difficult if you want not to suffer through it. People around me gave me this life till the very end despite its cost. I did my best, as long as I was able to, to give this kind of life to other patients in our Palliative Program. Because everyone is worthy of ending his/her earthly travel with dignity. Everyone is worthy of leaving this world without pain and suffering. And it’s much more interesting to do something for someone else here, on the edge. Because it’s more acute. Because you have no chance to come back. To fix things. To hit the replay button. You have only one chance to walk this road along with a person, making it as easy for him/her as possible. One chance. When failure is not an option. And when you have this special feeling if you succeeded. Succeeded even a little bit. And if you only give it a try, then you’ll succeed by all means, even if only a little bit. I know it.
I have a feeling that a lot of people will write something about me “afterwards”. About what kind of a person I had been… Actually, they write regularly this kind of things about me in my lifetime as well, things which sound more like an obituary. Still, I wish I could read it and troll people commenting on my post :). And, just in case, for those who will write something – you know how much I can’t stand the pomp and eulogies :). If someone is really keen on expressing these things, it is best to express it in money equivalent by transferring the funds to an account of Palliative Program [“Live by the Second, Live Every Moment”]:). But don’t write about me, OK? ;)
[People ask in the comments below the post to provide the payment details for sending the “Gavr flowers” [Gavr – another Ira’s nickname, her shortened surname] – you can do it here https://ubb.org.ua/en/project/2743/ ]
They say there’s Heaven. An ideal world free of pain and suffering. This is cool. But I keep thinking – if I get there, what I would be doing? Without medical records, crafty rehabilitation gadgets and “please donate for…”? Without things that have been filling my life for the last 9 years. What will I be doing in the place where there’s no demand for medical experts or fundraisers? :) I think, they’ll find use for me There… As for you, you will stay in this world… Which so desperately needs people helping one another. Where the only means to survive is to fight the odds shoulder to shoulder. Which is not just about the strong protecting the weak, but about even the weakest one doing a lot for his/her neighbor.
I have run my course :). As for you, it looks like you have lots of work ahead of you.”
A note from Maria:
“Ira wrote this letter in February 2015. By that time things have already became immensely difficult (at least that’s what we thought back then, immensely) and we thought the end was near. In reality, we were to live through another year, with each succeeding day of the year being even more difficult than the previous one, but till the very last day until her physical abilities had been spent, Irka had led a fulfilled life and kept on working. Ira’s very last hours when she was still fully conscious were devoted not to her family but to the most critical of our palliative patients at that moment, she used this time to share more knowledge with me about how and what to do to help these people.
She was sorry that she wouldn’t be able to troll people who’d start singing her praises, that she wouldn’t be able to see the reaction to her letter and the results – what others would be able to do following up on her legacy letter. Though, I always argued with her about that – I think, well, I’m sure, that she would see everything.