It could have been anyone. But for some reason, it was her.

The illness #

The memory of when things started is a bit hazy.

Probably because it wasn't a sudden and abrupt event. For many months, this... deformity, for lack of a better term, kept on creeping more and more. If she had to be honest, she knew something was wrong. Still, she tried to convince herself that it wasn't anything, that it would have been temporary. Perhaps that idea allowed her to tolerate it this long. Somehow she became acquainted with it. It was like living with a person you don't really like, but you just get along with. She did the same.
But then it started creeping a bit too much into her life. She was beginning to be more and more self-aware of it.

Now she would come up with silly excuses to avoid going out, to avoid being seen outside. She felt she was getting busier as time passed: doing small projects, help around the house, meet friends online, follow the latest series, read, or maybe just rest. But always smiling, as her mom always taught her.

If she had to go out, run some errands for her mom, buy groceries or anything she might have needed for her homely world, she tried to do her best to cover that up. Disguise it. Winter suddenly became the best time of the year.

Even her mom didn't really notice. Maybe she was too busy: running around the house organising meals while working, most of the time until late, having lengthy online meetings with her coworkers. During the weekend, the little time she wouldn't work was sometimes dedicated to either cleaning the house or relaxing, reading a novel or watching some videos. Nothing to complain about: with a daughter so calm and reserved, autonomous, helpful around the house and overall busy, now more than usual, it's easy to get carried away.

But her mom couldn't avoid seeing it for too long.

She had to grab the attention of her always-busy mother and break this complacent silence. The first embarrassing moment was like a jump in the void. It was sudden. And sad.

Mom had a special touch on things, but her attitude wasn't as calm as she was trying to appear in this situation. Maybe shock was the best way to put it. How could she have never seen that on her beautiful daughter? Let's not despair, I'm sure there is something that can be done, and it will go away as it came.

It started with a small initial assessment with a doctor recommended by the only relative they still had good relations with. The doctor was an absolute pleasure to speak with, very knowledgeable and sure of what was going on. Unfortunately, as he said, there was very little he could do for her. It's probably better to have a better assessment with a colleague of his, a few blocks down the road. He's been treating a few other patients with apparently similar symptoms.

Unfortunately, she ended up getting bounced back and forth from the following place to the next: scans, tests, loads of doctors of any age, everyone with their own understanding of the problem, everyone with their own idea of how to solve this. This went on for a while. At the end of the day, getting together at the dinner table and deciding the next steps became the new routine: When is the next appointment? Who do we need to call to arrange one?

Before everything started, having the opportunity to hop on the car and get to the city centre was something to look forward to. Now there was a tangible tension. Weather and seasons made very little sense. There was always a gloomy sky within herself when she was looking out.

The outside faded away, leaving room to the inside.

Cautiously she starts accepting some initial treatments trying the most non-invasive solutions—endless hours of baths, salts and oils: horrible smells and sleepless nights.

The deformity doesn't go away.
After almost a year now, it's still there.
Maybe it has even grown more. The sensation is that all of this is in vain.

Little by little, this effort was diminished and replaced with almost an acceptance of her own destiny.

All the projects and initiatives that she had before have now been replaced with spending her days watching videos and chatting with remote friends. The further away they were, the better it was. Lessened the possibility of one of the two to wish to meet. It happened before, and it's tough. The alternative was the hard truth of an impossible relationship. And even then, these "friends" wouldn't stick for long. Everybody is looking for a normal counterpart. Nobody wants to take on board so much that it becomes an endless pit of despair.

It definitely has grown more.

The doctor treating her, probably pushed by some sanity or maybe compassion, steered them towards a recognised institution, an actual hospital. Get some scans, some samples. Try to see if they can figure out if this is a genetic disorder that can be cured, fixed, and forever forgotten.

She was getting almost used to the tranquil pace of her former doctor. She was lovely and very supportive, and her studio had a pleasant subtle aroma of incense. Usually, there was nobody around when she was coming over for her visits. Whether that was a coincidence, it didn't really matter. It made things easier to deal with.

The hospital wasn't anything close to that.

The first time she went there with her mom, there were many people around. She was hit by cigarette smoke and the annoying smell of cigarette butts. While walking down the corridors, it was not difficult to catch a glimpse of despair mixed with urine smell. But that wasn't the worst part: it was the curiosity and the look of people all around. Looks that ranged from disgust, to surprise, to astonishment, to compassion.

She had forgotten how that felt. The soft bubble she had built around herself suddenly burst, she felt her hands sweating and the blood going to her head, making all sounds muffled.

The next few hours of assessments were an utter nightmare. She wanted to faint, to collapse, and disappear. But apparently, her body didn't want to give up.

Some doctors were called in. She could vaguely remember some from the initial visits months before when this whole journey into hell started. They expressed curiosity, and the tone in their voice didn't give much confidence in what they were saying, rather a complete lack of clues.

This is nothing new.

Nothing apart from her deformity changed, and it was only for the worse.

She was sent home with the promise to get some more information once the analysis was completed.

A few days passed, and she sat in silence in her bedroom.

Why should I care? Is there any reason for this to carry on further? To be honest, no doctor said this could be terminal. If not for the fact that life is terminal in its essence.

Her mom tried not to look too desperate. She wasn't alone in this. And perhaps that was probably the only thing that she was looking for.