Sunday, 23 September 2012

Al-Baraka (*)

Disclaimer: this is a rant and, as all good rants, it is personal. If you don't give a f*ck about me or about how I may feel, don't waste your time. There's much more interesting stuff in the blog if you scroll down.

I used to believe everything was down to effort and hard work, when it comes to our lives. I grew up in a capitalist state where I continuously got told "if you work hard enough, you'll eventually get there".

I'm not twenty yet, but I have already realised something important. It's all bollocks.

You need luck in order to do anything. Good luck, bad luck, neutral luck, whatever. I would like to believe in fate but I cannot bring myself to do it, for some reason I do not really know. But luck, that's a completely different thing. You do not need to believe in luck, but if it does not believe in you, you are screwed.

I will prove this talking about the example I feel I can talk most about. Me. (Yeah, this can be narcissistic and self-centered, but whatever, this is my blog after all, and today I feel like talking about this personal matter.)

Two and a half years ago my luck changed. Back then I thought it was changing to bad, but eventually I found out it was actually good luck.
What happened? Well, if you know me at all or you've followed the blog regularly you should know: after a chain of disastrous events linked to my life, I just could not cope with it all anymore and broke down. I was ill for over half a year and in bed for over three months. A whole winter.
Of course, when you are about to turn seventeen, spending three months in bed and using your late grandpa's cane to walk to the bathroom because you simply can't do it on your own would not be considered by hardly any as good luck.
But I do. This gave me an opportunity to change my life a little bit more (after all, there wasn't much more I could lose), and so I made that change.

But to make it, I needed something not everyone has, and I am very lucky for having that. My family and friends, and very especially of course, my parents, supported me. Even more, they actually trusted me. They understood my position and decided to let me go ahead without even knowing what I was getting into. I hardly had an idea but they knew nothing at all. They still decided to back me. If they hadn't, well, who knows!
For that, I am eternally grateful to them.

I worked hard. Really, really hard, and for about a school year I hardly had any life. It paid off, though!
My parents still supported me and all was going well. So I left and had the most amazing year in my life. I have been really lucky in meeting the people I have met at York and doing what I have done. I could feel unlucky because I did not get a place at Cambridge, but I cannot see it that way.

And now, this summer, my luck has changed again. You see, humans do not really value something unless they have been deprived of it at some point.
I have been deprived of good health practically since I was born.
There have been more, of course, but I am going to stay with the main episodes:
My mum was seven months pregnant when she gave birth to me, and I was born purple and dying from asphyxia. They rushed me to another hospital where I spent a week, the first few days docs did not know whether I was going to make it or not.
When I was three, I had a problem in my hip and I could not walk for a few months. Imagine being almost four and having to go to school sat in a pushchair. Not nice.
When I was eight, I passed out at school and woke up in hospital nine hours later (during this time, I'm told my eyes were open and I shouted, but I wouldn't react to any stimulus). To this day nobody knows why that happened. To be fair, of that time I just remember spending a week at hospital on holiday, sort of. I did not feel ill. So many tests for nothing, they did not find out a thing.
When I was nine, my allergy evolved to a serious asthmatic condition and for a while I would have to rush to hospital once in a while to get some oxygen for a few hours. Once I had this massive attack and stayed in hospital for a week. I received so many corticoids I couldn't walk for a few days after that. Once I went home I started taking medication, slowly reducing the dose from nearly a hundred puffs daily. I inflated like a balloon and for many years I did not lose that volume. (I haven't stopped taking chronic medication ever since.)
Then it all went well with me for a while, albeit important events in the family sort of aggravated the scenario, and by the time I turned twelve or so I was feeling so bad about myself I had to see a psychologist for about two years.
After this I had a few minor problems I don't want to bore you with, but basically I found myself in that episode I've told you about before, when I stayed in bed for three months.

And then, it all went well until two months ago. I have been diagnosed this rare illness. It has no cure. I basically know that whenever I am eating or drinking my throat can suddenly shut and if it is bad enough, I could just choke to death.
I am being given different medications, they seem to get me better for a few days but every other week I get an attack. There is no instant cure, but staying in bed for four or five days helps feeling better. Still, you never feel well and I am starting to doubt I will ever feel well.
The following have been removed from my diet: seafood, mustard, nuts, everything containing gluten (beer, pasta, bread, sweets, pretty much anything I like), and for the last few days, upon a doctor's advice, lactose.
This morning I have felt a cheater, as my breakfast was lactose free milk and some gluten free cornflakes and a gluten free cupcake.
I cannot eat meat unless it has been processed before (in the form of a burger or a sausage) and I add some sauce to it. I cannot eat many kinds of fish. I cannot eat some kinds of veg, and I must be very careful with fruits. Effectively there are so many I cannot it. I certainly cannot eat a sandwich, even if it is gluten free bread, as I just can't swallow it. I can hardly eat out as I need huge amounts of water to eat absolutely everything, to make it slightly better, and because of the massive amount of stuff I cannot eat, it's actually better if I just eat at home.
And I need to take some corticoids. Oh, and Omeprazole, twice daily, for as long as I live. This helps with the reflux, but I can't get rid of it even taking the maximum dosage of Omeprazole advised for an adult.
Knowing that, even if I do all this, I can have an attack whenever, and there is nothing I can do about it. If it is serious, I can go to hospital and get some methylprednisolone administered, but all that helps is getting in bed, relaxing, drinking water in small sips and hardly eating. But there is no cure and no known 100% effective treatment. The illness is just so know we know nothing about it. Docs know Omeprazole usually helps patients with eosinophilic oesophagitis (yeah, I know the name sounds scary!), but they don't know why.

I have a flight to England in a week and I still do not know whether I will be able to catch it. I may have to stay here a few more weeks, perhaps I may have to take a year out.
I have the brains (well, sort of!) and luckily I have the financial means to do it, but my health just isn't helping. I cannot plan like everyone else because my ultimate goal in life right now is not having an attack in the middle of a seminar, a flight, or even a night out. I live in awe and I have felt on the edge of giving up a few times these weeks. As in, actually giving up, retiring somewhere or just staying in bed awaiting an attack.
I am pretty positive I do not deserve this, but this has been given to me and I have to cope with it.
I want to go to England. Not only because I actually miss my life as a Yorkie but because EO is related to allergy, and usually I feel better allergy-wise in England than I do back in Barcelona.
But at the same time I am scared, and exhausted. I am tiring of fighting this every hour of every day, feeling relegated to watching TV series online and writing once in a while in this blog when I feel well enough.

I just wanted to share this as an encouragement. Not only value your luck in other aspects of your life (finances, brains, success with girls/boys, etc.), but value the most what matter the most: your health. You are very lucky to be healthy, to be able to go out, to make plans, to do stuff, to not feel left out because you actually want to do lots of stuff but you simply can't do it unless you're in front of a laptop, because that's about as far as you can get: to a laptop in your bed.

My family and some friends are really helping me through this. They are really trying and sometimes not succeeding. They make me forget about all this for a while, perhaps, but when I'm in the middle of an attack, I just feel alone. I have actually asked a few times to be put under sedation. My lungs are not compromised when I have an attack, and I do not want to feel like that anymore.
No one seems to understand sometimes it's better not being here (somehow, sedation is not being here) than being here in whatever way. There seems to be an obsession with living no matter what, no matter how badly, and sometimes, when you can't do any of the things you actually want to fight for, anything you actually really want to do; when this happens, I think it's better not being here at all.
This obviously gets everyone angry, when I say it, starting by my parents, because it sounds a bit too suicidal. But I don't think it is.

I actually want to fight. And I'm fighting, and I'll carry on fighting, but I need some hope. If this does not get better soon, I don't think I'll be able to ever go out again, or take up a job, or go to lectures every day, or to the gym, or pretty much anywhere. And if that happens, what do I do? I force myself to do what I want to do, when I simply can't do it; or I crawl back to bed and accept I won't be able to do anything in life?
Neither sound good to me.

Moral of the story rant: live every day as if it were your last. I started doing this after my months in bed, I learnt to do it, and it really pays off. Especially when a couple of years later here you go again.
Maybe I feel better in a few weeks or a few months and I can learn from this as well. Maybe not.
That's why I'm still not going to say whether being diagnosed with EO is good luck or bad luck. Because I don't know. Yet.

*Baraka (البركة) is the Islamic concept for a flow of luck/beneficence coming directly from God/the higher power. It can be used as luck, in a metaphysical sense, and like the Jewish berachah (הברכה), it comes from the Hebrew Baruch (ברוך). Barack Obama's name comes from this same Semitic root.

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