” You are really close to have left hemiplegia. “

Maybe if she had tried to explain why she said that, it could have been fine.
But she was agressive, authoritarian and screaming at me.
For the first and the last time of my life, I cried in front of a doctor (and her trainee).
I was 23 and so angry i couldn’t talk. It was three years ago.

Her aim was to convince me to take stronger drugs cause my treatment wasn’t working.

It resulted to one year without putting one of my toe at hospital.
No doctors, no MRI, no blood test, no treatment.

–

I went back at hospital in an other city with a new doctor.
One year later, despite my efforts to transfer my medical file, she didn’t know my case.

She puts mistakes in my file about the relapses I had before I met her.
She was harassing me to know if I was taking my treatment.
I didn’t fail once to take this one but she never believed me.

When she realized I wasn’t reponsive to the new drug.
She introduced me the other options I had.
But she only told me about what she wants to sell to me.
And we didn’t have a real talk about the huge side effects that can occur.

–

Third hospital, fourth neurologist, I appreciate him.

One day, he explained me that people have different feelings to similar lesions.
Like a variable tolerance’s threshold.
And if I had so much symptoms, it’s because I’m payed to much attention to my body.
What is suppose to mean? It’s the best thing to say to generate guilt.

When I try to act normaly despite my health conditions, it’s getting worst.

How can I ignore I need 15 seconds and all my brain functions to close a water bottle ?

–

Dear Spoonies,
Build a shield and protect yourself the best you can.
Numerous people have to go through the same experiences at hospital.
You can find support, you are not alone.

Dear people of the medical sector,
You shouldn’t speak unless you are sure about what you are going to say.
It’s impossible to know how a sentence can impact a life.
But please don’t forget that you have an impact, not always the one you were searching.

The hidden part of the iceberg at university.
Or “ why my biggest fear is not to fail a class ”.

TO MOVE

• you have to get your muscles to do the right thing
• you have to be careful not to fall
• not to punch someone
• not to break anything
• not to forget what is in your hands
• not to drop or to throw anything
• all of these can happen if you don’t pay attention

TO ANSWER

• you have to focus
• to understand that someone is talking to you
• to understand that someone wants an answer
• to remember the sentences they/she/he said
• to understand it
• to know/find the answer
• to build a comprehensive sentence
• to say it
• to do all of these in few seconds

TO PLAN

• to sleep, to study, to rest, to go to the hospital
• how many medical certificates can be accepted
• to manage with the planned and unplanned
• if you will need specific fittings for your exams
• if your body will be able to work the night shift
• if you can stay invisible or not as a spoonie
• if others can count on you in a group work
• if you can count on yourself (spoil: probably not)
• how to react to discrimination, ableism included
• how to react if the university want to dismiss you

IN SILENCE

• you may suffer like hell
• you may be in a huge conflict with your brain

Well. 

Now, maybe you have an idea for what i’m anxious in my everyday student life. Every steps i wrote can be difficult or almost impossible for me. 

But I am there, in the front row, recording the courses and sharing all the audios with the other students. 

They compare their rankings to mine. 

If only they knew. 

1/ Life isn’t about school. I was bullied for years, it was awful and I will never leave my past behind to be someone remarkably self-confident. School’s a big piece of your lifetime but still, it’s only a piece of it. Most of the time, you will never meet your classmates again after you finished high school.

2/ Don’t give to people who didn’t believe in you a reason to think they were right. Prove them how much they’ve been mistaken about you.

3/ You aren’t stuck in a place forever. If you are sick to stay in the same town then move out. The world is big, you can go anywhere for a short or a long time and you can start again somewhere nobody knows you. It’s not an easy choice but it can be great, promised. There is a lot of ways to travel for nothing. If you can’t move out now, you can at least start to plan something or to dream about it.

4/ My family deserved to know. I was in bad terms with my parents, I nerver told anyone how much I was suffering at school. Maybe I was to proud to tell them, maybe it was the only way I found to convince me I was okay cause I didn’t ask for help. I knew I was strong but I didn’t know how broken I was.

5/ If you want to live in a better world, how would it be? Many times, I met people who fought for rights, like I did in different ways. They inspired me and gave me some hope. Cause even if there are a lot of stuffs not going well, there will always be some of us to stand up against bullshit. I felt useful when I spent time with them to fight. It was also intellectually rewarding.

6/ You maybe know what you will leave but you never know what you will miss. What will happen in next few days, months or years? You can think it’s better this way but based on what? The future is unpredictable.

7/ What are you attached to? I like the rain, the storm, the clouds. Looking at the leaves of trees moving with the wind or to walk outside alone at night looking at the stars. I want to rescue a dog from a shelter when I will have my place. Nobody can stop me from doing these things.

8/ You can build new relationships every day. New or future colleague, bestfriend, girl-/boy-/enby-friend. I’ve found my soulmate when I was 25 yo, every time I think about my past suicidal thoughts, I’m glad I’m still alive.

9/ As a spoonie, I never wanted to give up. I was depressed long before I was diagnosed with multiple sclerosis. My chronic illness is a source of anxiety and ask me a lot of energy to stay “able” but I will always do all I can till I can’t.

10/ Learn something new every day. It was my leitmotiv for a long time, you don’t need to know why you are here, at least, try to find smart ways to spend your time, it will never be lost. Your future self will thank you for.

11/ Music can save your life.
Do not underestimate its power. Escape.

12/ Don’t be too hard with yourself. Don’t listen to what people say about you. Learn who you are and who you want to be. Clean up this mess.

13/ Inhale, hold, exale. Do it again and again.
Close your eyes & just breathe.

I’m older than most students in my college cause I already did different studies/jobs/things in my life. It’s a strength, without that experiences I would not be who I am today. The younger people around me think that I wasted my time and failed my life.

I must be stupid, cause I never wanted to study medicine before I got sick?

The other day, in class, we learned different types of epilepsy and we watched movies of patients. Some students was uncomfortable, me included.
But a lot of them was laughing.
It wasn’t awkward, it was just nasty.

Do you want to be a doctor to HELP people?
Cause that’s what we need.

I’m sitting right next to you, asking myself if my body will survive my next treatment, if I could still walk, read or write in the coming years or months. If I finaly found a good doctor, I think I did actually. But I feel sad for the hundreds of patients who don’t have the courage to leave them and maintain bad doctors unwittingly.

None of this makes sense, none of this is fair.

And you.

Small future doctors.

Right next to me.

You laugh at epilepsy.