How I lost my sight in a few days at 20

As of March 2020, the whole world is confined. I am so happy to have no more classes since the universities closed … Then I discovered the concept of distance learning. Like all students in France, I spend my days locked in my room doing video lessons.

Two weeks pass, we are still in seclusion and I begin to have it headaches that become more and more intense as the days go by. I explain them with my daily life, locked in my room in front of a screen.

An embarrassment that doesn’t bother me right away

At the end of March 2020 I notice that I have discomfort in my left eye, I see a little confused in the center. It makes sense to me as my glasses are held hostage by the optician who has had to close down like most businesses.

I don’t want to bother the doctor “for nothing”, I stay with my Doliprane in the maximum daily dose despite a very low efficiency. On 11 May we deconfine. On the 13th I meet a friend who is a doctor and I tell her in a very light tone what is happening to me, my vision problem and my headache. She seems much more concerned about the situation than I am sent me urgently to the ophthalmologist.

I arrive in a crowded waiting room (since we are on day 2 of the deconfinement), I ask for an urgent appointment without too much conviction since my vision problem looks like a trace of grease on the windows that we cannot clean.

Edema on both retinas

Even the ophthalmologist takes the situation very seriously. I take exams, including a nice photo of my retina. We see a large white spot and small red spots that look like blood. Bingo, it tells me that I have edema on both retinas, at the junction with the optic nerve and that the red spots are small hemorrhages. I see in his eyes that he is serious, he does not want to tell me all the plausible scenarios, but he tells me that it is due to a pressure problem in my skull.

I go back to see my doctor friend who immediately sends me to the emergency room, I have to do an MRI. It gives me a non-exhaustive list of potential causes, including a tumor (which would take up space in the skull and create pressure), a brain hemorrhage, or even nothing, just such a problem with no real cause (which is best case scenario) .

In the emergency room I was greeted very quickly, it had never happened to me, it made me realize once again that it was serious. I spend 20 minutes on the MRI, feeling like a roast in an oven that makes too much noise.

At the exit the neurologist gives me excellent news, there is nothing. No tumor, no bleeding. A priori, I have the best of scenarios: the liquid in my skull has just decided to stop draining. They are holding me to solve the pressure problem, but they are not too worried about it.

Idiopathic intracranial hypertension

I am hospitalized in this hospital in the Paris region, alone, I am not entitled to visits because of the covid. I’m doing a lumbar puncture – yes, yes the injection in the lower back! A moment of pure pleasure (no) – made by students who learn to do it.

On this occasion, we measure the pressure of my skull (in the lower back!), I’m 40 when I should be between 20 and 25. We take the opportunity to remove some liquid to soothe my headache. The drug treatment is put in place, the protocol is explained to me. A lumbar puncture, drugs for a while, in a few months if it comes back it will start again, but if it happens again it will be necessary to put a valve in my skull to regulate the liquid.

I was also told that theit is not really known what causes this pathology, (idiopathic intracranial hypertension for medical students, above), but basically doctors find it happens more often in overweight or obese young women, as is my case. I have been told that in order to prevent this from happening again in the future, I will have to lose weight. It’s Friday, I’m starting my treatment, I should be getting better in the next few days and I can see quite well.

” Every morning I see darker than the day before ”

The weekend goes by, but my headaches (the clever word for headache) don’t go away. From Monday, I notice that my vision is deteriorating. Ophthalmologists are not alarmists, according to them it is mechanical: when neurologists manage to solve the problem of pressure, my edema will subside and I will have no sequelae.

During this week, every morning when I wake up I see darker than the day before. Friday, I come back for an MRI, then do a lumbar puncture again to measure the pressure again. We are trying to understand why the treatment is not doing me any good. This time I am at 80 of pressure despite the treatment at the maximum dose. The MRI shows that the veins responsible for evacuating the liquid are a bit squeezed, as if you had stepped on a garden hose.

The medical team seems a little overwhelmed. I am nearly blind, unable to move on my own. I don’t know if it’s day or night.

I feel that the teams are a bit overwhelmed by my case, nothing is explained to me anymore. A nurse comes to help me prepare my things for my departure. Nobody informed me that I was leaving for surgery on Monday morning. Nobody warned my relatives, nobody explained to me what this operation consisted of.

An intern is sent to me urgently. Scholar, he comes with some nice diagrams to show me, but I’m blind.

He struggles to explain to me that they want to put stents (a stent, vascular endoprosthesis, vascular expander or vascular stent, is a device, most often metal, mesh and tubular, tucked into a natural human cavity to keep it open) over crushed veins . The human body again makes no sense, it will pass through the groin (thigh), it is not invasive, very much smooth. Only once he is asleep and the operation has begun, the practitioner realizes that my veins are indeed fine! No stent.

They tell me my sight may never return

The next evening, still in my new Parisian hospital, the surgeon comes to me and explains to me I’ll have an emergency operation tonight. They will put a valve inside me, with a tube that will drain the liquid into my belly (in the peritoneum for the more squeamish, it’s like towards the navel).

He explains to me that he’s doing it to save what’s left of my sight, that maybe the rest will never come back. I am amazed, they spent a week and a half explaining to me that it was mechanical, that everything would be fine and in a second I discover that I could be blind or at least visually impaired for the rest of my life.

I spend a few minutes with my parents who have exceptional permission to be with me to welcome the news. I hear my father cry for the first time in my life, it’s serious. I work the night shift in the operating room – well, I sleep, it’s the surgeon and his team doing the night shift.

The next day, the blindfold was removed and I discovered the cool haircut I had won along the way. The surgeon looks great in his profession, but as far as hairdressing is concerned, there is progress to be made. I have a quarter of my head shaved, everything I dreamed of (no).

Two days later, I see that the armchair in my room is blue, victory! I managed to read a large sign in my room, I have 2/10 in my right eye and I can barely count my fingers in the left, but this is already a huge progress. I do visual field tests, I have large blind spots in the middle and can’t see anything on the periphery.

My situation stabilizes and I recover some of my sharpness visual

I meet a neuro-ophthalmologist who explains to me that now that the pressure in my skull has stabilized, we must observe the reabsorption of the edema for 1 or 2 months. Like a receding tidal wave, we see damage once the last wave is gone.

On June 2nd I go home, I try to understand what has just happened and the new life that awaits me. Weeks go by and the tsunami recedesI recover very well in sharpness, I go up to 6/10 on the right and 4/10 on the left. I can read, my field of vision widens a little but it remains very chaotic. A priori, it will remain more or less like this for the rest of my life.

In September I go to a day hospital in a functional rehabilitation service for the visually impaired.. I will learn to adapt my life to my disability. I see occupational therapists, a psychomotor, a locomotion instructor (sort of a driving instructor, but on foot) who will teach me how to use a stick * emoji blind *.

Today I have I am visually impaired

Two and a half years later I am still visually impaired but I have 10/10 in my right eye. It’s weird huh? I move with a stick because I don’t see around. I don’t see tree limbs in the parks, I don’t see holes, steps on the sidewalk, poles if they are below the level of my hips. I can’t see from the side, so I bump into people, walls, poles.

I ask to sit in the subway so as not to be oppressed by the crowd, but people stare at me when i dare to read on my phone. They insult me ​​on the street, I had the right “Hey, why do you have a stick if you can see? ” from a boy on the terrace as I passed him. People stop me in supermarkets to ask me what I have.

I am adapted to my new life, perhaps even too adapted, so that my difficulties are forgotten. In my school they were reluctant to give me the supports in advance (so as not to have to read on the blackboard), they scolded me for using my handicap “as an excuse”. “ Rho okay you won’t tell me every time “ fine if Jean-Michel, every day if necessary.

Finally, in the invisible sequels, I discovered the joy of anxiety and panic attacks. The slightest pain is a pretext for a disastrous scenario. I theoretically died of 25 heart attacks and 36 strokes in two years. I take care of my handicap by telling myself 10/10 in the right eye while two years ago I saw nothing, it is in the order of a miracle. I see a shrink and a psychomotor who help me better manage my anxieties, I am well surrounded.

Photo credit: Oleg Baliuk