terminal illness.

hello lovelies.

 

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From personal experience, I’ve realised that “normal” people are most uncomfortable talking about death and the possibility of it. I know I am, despite the fact that I am resoundably abnormal. I guess most everybody is. Although for me, it’s not my own mortality that I find concerning, but other people’s- especially if they’re a loved one. The real love stories though, they happen after we fall, feet hitting the ground and realise that love contains our messes, our brokenness amongst the good. We hit the ground, surely, but I will continue being yours.

It’s common to view illness or tragedy as something that just doesn’t happen to oneself. I think it’s a protection mechanism really. We can see reality, see the truth, but we shield ourselves because it’s blunt and harsh and inescapable. I used to think like that, but then I got depressed as a ten year old. I was diagnosed with severe depression as a fourteen year old, after three suicide attempts. I, for a long time, was more afraid of death, that big unknown, than I was of life, even though I knew being here hurt. Occasionally I still get asked why I did it. The simple truth is that the balance was offset. I was no longer scared of not being here, so I tried to leave. It was then that I realised I no longer had the luxury of disassociating from this kind of unfairness. It had knocked on my door and I’d opened up. It had.. been me.

Perhaps my view of life, to this day, is still a little distorted. I wouldn’t be all that surprised really.

In January this year, I met a guy. We’ve been together for three months and he is everything I wanted yet so completely different. Everything I never knew I needed, I suppose you could say. I guess there was a spark from the start. Being with him is living on the edge, but knowing I am always wrapped in safety. He is adventure and home at the same time. We talk of the future, all the time. Some things have happened that have no explain but desperately require it. Amazing things. Breaches of time and place and normal existence. Our conversations are long and we speak of everything. It is okay for me to be myself. I am celebrated and cherished in this relationship.. and as I put it once, a bit earlier on- “All this love.. I’m not used to it. Where do I put it?”

He is also dying.

There has never been any question in my head of whether this relationship is worth it. Maybe it isn’t, but I love him way too much to not be there. If the conditions on love were companionship only when times are good, what would that say about us? what would we deserve? He asked me if after knowing all this, knowing that there will not be a happily ever after and maybe not even a tomorrow, do I want to stay?

Well, how could I leave? Yes, it shatters me knowing that you talk about assisted suicide at your doctor’s appointments. I am afraid, yes. I am afraid that just as you predict, there will come a time when you’ll be unable to talk or walk or do the things we take for granted. Born with a terminal lung condition, you won the genetic lottery for one of the rarest illnesses. You are 1 in 1,000,000.

In your own words- “If it comes to that point, I don’t want to be here any longer. I want to die. I want to continue my life in a new place, embark on a new journey. First though, I’ll tell you I love you.”

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“Do you ever feel like

you’re on a train moving

too fast to stop

but someone you love is in 

the carriage and you can’t get off.”

 

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These lyrics.. they sum up how I feel about being on the outside/inside of terminal illness. It’s not you who is sick, but it is someone you care about so deeply they might as well be you.. just a mere extension of self.

“What are you afraid of?”

“Well.. I’ve waited my whole life for this kind of love and I haven’t been able to find it anywhere. It’s not fair. I’ll never feel this way again. Please don’t go.”

“Of course you’ll feel this way again. There are plenty of people who will take care of your heart.. I am one amongst the many of them. I was the first, but I won’t be the last. They’ll find you.. but until then, hold on. Know I care, even from afar.”

It’s realistic to say that these kind of experiences change you. At the start of our relationship, I was living in fear all the time. Fear that I would wake up and he wouldn’t. I would cry about it. It still pains me incredibly, of course, but I am trying to let go of what I cannot change. For now, we are okay. Trusting that this is out of my hands, especially because it is, means a huge weight is lifted.

“I am never bored. I don’t know whether I’ll see next week or 12 am. I wake up and I do all I want to do. I go for it because I cannot possibly lose. At the end of the day, I’ve lived and I’ve loved and that’ll be enough.”

As young child, in and out of the hospital all the time. I can’t even imagine it. We’ve had some incredibly deep conversations because of it. He told me he has died before. He has been considered medically dead. Three times all up. One of which I witness. An hour, four hours, a day.

I asked him once- ‘What’s it like over there?.. Is it better?”

“Can I answer that for you?”

“Yes.. sorry. I’m just curious.”

He sounded peaceful as he answered. “Yes, It’s like an amazing sleep. I felt new again. It’s like nothing else. Just.. amazing.”

I wonder sometimes if he thinks of that when he is pain and wants to die. I always ask what I can do, how I can help. The irony is that there is nothing that will make this better. It is not up to us.

I would however, take his place in a heartbeat.

maryam

4 thoughts on “terminal illness.

  1. beautiful post as always, maryam. you always seem to know how to put unexplainable and very abstract emotions and thoughts into words. x

    Like

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