What I learned when I lost my vision (literally not metaphorically) Warsaw, Paris

I am in Paris. It was supposed to be a magical, romantic and enrapturing visit, but it’s not. I am too late for it to be romantic, too blind for it to be enrapturing, and in far too reflective mood for it to be magical.

Last Friday, when I imagined that on Monday I’d still be in the hospital instead of being at the Okęcie airport, I felt very sad. So sad that nurses put me into a single room so that no one would drown in my pool of despair :). Despite the photophobia, the impaired vision, the nausea after the morning antibiotics and steroids that I have to take and lost meeting which I was very much looking forward to, in the end – I’m here, in Paris, and I can SEE.

Couple odd things I learned from this experience:

1. better play than complain

Being a control freak, I find it hard when things do not go according to my dreams and plans. Very hard. The fact that I can’t see adds to my feeling of lack of control over everything around me. The only way for me to cope with it is to play a game which I don’t really like, but which always makes me feel better:

Find as many reasons as possible for why things are better than they were supposed to be:

I still can’t see any contours, which makes everything look as if I lived in a fairy tale. But it means that all the people are beautiful, have perfectly smooth skin and are always smiling.

I’m still pretty bad at estimating my distance to objects, so I stumble a lot. It is actually quite funny and perhaps this is why people help me a lot, especially since I probably behave a bit like a blind person. They help me with my bag at airports, let me skip queues to cabs and bring extra food for me to taste in restaurants (maybe I look not only blind but also famished).

My eye still hurts, but the pain is not even close to what it was in the beginning. It made me realize what a blessing it was and will be to see clearly and without pain for many years.

I’m still afraid that my eyesight will never be as good as before, but thanks to that I exercise more diligently, feeling that I have a reason to, and I train being here and now and lot letting myself venture too deep into the future.

2. Why did this happen to me?

I used to ask myself this question all the time… I mean, everybody does to some extent, but I was doing it very often. Everything that did not go according to plan had to pass through the labyrinth of various versions of “why did this happen to me”.

After several events in my life when something went totally against the plan: having my spine broken, repeated leg surgery, damaging breakup and cancellation of a trip involving 12 flight tickets – after all of this – I stopped asking myself the question “why me?” so often. And when I did, I was no longer feeling grief but rather trying to find a kind of philosophic and symbolic answer to that question. In the end, why should it happen to anyone else? I changed “why me” on “why not me”?

However, losing eyesight completely for several days really shocked me. It provided me with a perspective that made me realize that my life might not be as terrible as I sometimes think.

You can write a lot, go to therapy or even graduate from psychological studies, but unless you go through something that can turn the chemistry of your body upside down, you will always need a reminder.

So my theory is that such things happen to us because we lose awareness, get stuck in a rut, lose concentration and set our priorities in a wrong way. It was not enough for me to tell myself that my life is OK and to hear others tell me that my life isn’t that bad, especially when compared to life’s other people. I had to EXPERIENCE it.

Maybe we need to become lost sometime so we can be happy again after finding our direction. And perhaps we need to lose something to realize the joy of possession. Mayby it’s the only way.

3. There is only plan A

When in hospital, I made a decision that I refuse to create a plan B. Plan B is always a worse option, and my whole self is against choosing worse options. I made a deal with myself that I will discuss plans B, C and D, but only once. And then I’m going to scrap them. When you don’t have a plan B, you know that plan A is your only option. This is what gives me the strength to fight. Considering plans B, C and so on does not help me. Maybe it works for others, but not for me.

I know everyone had good intentions and wanted to do their best, but telling me that I still have the other eye or the option to undergo corneal transplant – didn’t help me or give me the strength to fight. I want to have 2 eyes. Two MY eyes. I like my eyes and I do not want to have any other.

I still don’t know whether I’ll regain my eyesight completely. However, I made a decision: plan A is all I have and I’m going to implement it until the person I trust the most, my doctor, tells me I should give up.

For now, however, I’m going to stick to plan A without exceptions and feeling pity for myself.. I’m going to take medicines, although they make me nauseous, squint my eyes and spend a fortune on anti-ageing creams (during the last weak I squinted more than during my whole life before) I’m going to constantly visualize my eye healing and the the small hole in my cornea vanishing.

4. I’m like a rabbit. I need a carrot.

A stick only beats me to the ground. In my situation only a carrot can help me get out. Although I’m a natural born warrior, what I need now is faith. I can create challenges myself. I already know myself and this is why I made things clear at the hospital and communicated what I need. You already told me about complete loss of eyesight, amoebas, parasites that ate my cornea and eye transplantation. I understand that the situation is bad. I already know the facts but now I have to forget about them in order to focus on the healing.

When I was going with my doctor in elevator to examine my eye under the microscope, told him: I DON’T WANT TO KNOW WHAT YOU WILL SEE THERE. I want to know what to do in order to make me see again. I DO NOT want not listen about the worst-case scenario. There will come a time for that. Now is the time to fight, not worry.

When exam was finishes he says: will you manage to walk yourself to your room? We will talk about it – and I see later.

Later he came, before he open his mouth I said: remember – today I don’t want any more bad news without solution and he said: I came because I don’t have any bad news. Or good one. I have no news. I just wanted to make sure you ok and let you know we all will fight for your eyes. So stop worring so much and go to sleep.

5. There’s only now

The most difficult question THAT I WAS ASKED DURING THAT TIME was: How did this happen? Why would that be important to me NOW?

Really, what does it matter NOW??!!!!

Further questions also didn’t help: Did you wear your contact lens correctly? Probably you got it during one of your travels. You should’ve been more careful. Are the doctors’ forecasts positive? Are you ever going to see again? All those comments were made with care in mind, but the only thing that that gave me energy were the “funny” ones.

I needed to focus on positive things more anything else, so I really appreciated any funny comments – I guess that losing oneself in laughter works a bit like a painkiller.

The first thing Karolina said when visiting me was:

“Julia! Stop crying immediately!

“Why?”

“Because it’s bad for your eyes.”

“No it isn’t. I asked the doctors about it.”

“Oh. Ok, then cry all you want. I’m going to bring you some tissues. Are normal ones ok? Or do you need something sterile?”

Most of the positive things that I listed in item 1 are the ideas of my friends who clearly decided that the situation is not too scary to be funny. And for that I’m very grateful to them.

I don’t want pity. I want support. This is why I appreciate Zuza so much. She was the head of the team who rescued me in Konstancin (my spine operation) and later she called me while being on leave:

“Juluś, I heard that thing’s are not pretty again, huh? How are you doing? Do you want to talk? Can I do something for you? Maybe visit you? No? Ok, but if you wanted us to, just give me a call and we’ll be there on the double!”

And then there is Magda, who was in the management of that same committee from Konstancin and visited me later. She brought half of a grocery store – more than I keep in my own fridge. She also brought magazines, soups and a four-leaf clover (how great person and friend you should be to give your own good luck charm?!). We talked about sheepskin coats, guys, fashion, designing, working in an advertising agency, holidays in Mallorca and everything other than how I got into this situation and what is going to happen with my eye.

6. Wear you crown and hold your head up high

I HATE PITY TOWARDS OTHERS and self-pity. It’s the worst kind of venom, one that we poison both ourselves and others with.

Feeling pity means that we don’t believe in the dignity of the other person, that we don’t believe they can’t cope with whatever’s troubling them. We DON’T believe that they have enough strength. We think that we’re better than they are, so we have to take complete care of them.

But the worst kind of pity is self-pity. I know this very well, because it was a friend of mine for many years. Particularly at times when I asked the questions: Why me? It was with me for a long time, so I had an opportunity to test it. And now I know it’s not a friend one might think it is. It’s like a parasite that takes away strength, dignity and energy to fight. It makes a dwarf out of a giant. It’s fruitless and castrating. And soon after we start wallowing in it we can write a book of the volume similar to an average work of Dostoyevsky on how miserable life made us.

Sure, one can get angry, cry and grieve for a while, but then you have to get up, shake yourself from the dust, put the crown on your head and move on!

Jan Kolski is one of the wisest people I’ve ever met. He once told me how he backed out from filming his movie under pressure of the producers with whom he had a disagreement. “But Janek, you cared so much about it,” I said. And then he told:

I did. I still do. But I would never do anything ON my KNEES. NEVER!

An THIS is exactly my motto for life.

Never go on your knees, because once you stand up again, you won’t be able to look yourself in the eye.

Every one of us has moments when reality falls down hard on us like a rock and it’s perfectly ok to feel bad then.

Crying. Despairing. Complaining. Being pissed of. Whimpering. Whining. It’s all OK. But in the end you have to put a limit to this. Sure, you might go back to it for a little while longer, but there has to be some limit after which you just have to get up and move on!

It doesn’t matter whether it’s losing your eyesight, spraining your ankle, allergy or feeling down in a tar-black hole… Never spend your whole day in pyjamas. No matter how bad it is, get up and get dressed. If you wear a crown you need a proper outfit to match: shorts with cloud or sheep pattern are not something a queen would wear. This is what I tell myself when I want to curl up into a ball and stay under my duvet. Always wear your invisible crown.

When I was going to the hospital, Ania was helping me. I heard her shout downstairs:

“Don’t forget your makeup!”

“But Ania, my eye is sick. I can’t do makeup.”

“And what about the foundation? Or blush? You have to look good when you finally decide that you want to see yourself in the mirror again.”

In the end, I took my blush but didn’t take my pyjamas.

“You know what? If more patients came here in green dresses such as yours maybe they would get out of here sooner,” said the nurse, who had no problem with my almost-royal outfit straight from an Uruguayan “fashion boutique”.

If we focus on why, what for, why me, why now, what now and what’s going to happen, it becomes a habit, clips our wings and is totally fruitless – AND WE HAVE TO STOP IT IMMEDIATELY.

No need to look under or at your feet or to look back – you only need to look forward. I really hate pity.

During that time when I couldn’t see, I was thinking about many things, places and people, but there was one special place and special people I thought about the most because I could communicate with them only with my eyes. It’s rare for me to travel to places where I can’t speak any of the 4 or 5 languages that I know, but the natives from Venezuelan Delta not only don’t speak Spanish, but barely talk at all. Even among themselves.

They also don’t use eyeglasses. The only ones they have are those lost by tourists and they think they are toys. I forgot about my sunglasses there too, because when I had them on, children walked away from me. They didn’t know what I felt or thought and since they didn’t know my intentions they preferred to stay away.

Their limitless joy of life and curiosity about everything happening around them (and there wasn’t much, at least from my point of view and probably yours as well) was fascinating to me.