I watch my e-mail every hour. Friday seems endless. My nerves are working, my imagination is going full throttle. What if they forgot about me? No…. they haven’t. They just have families too, want to go away for the weekend, get away from work. And if it was for surgery, I’m sure they’d be writing to me by now. I’ll calm myself down at 8:00 p.m., when I’ve finally given up waiting for a message. I decide to call neurology myself on Monday. No need, my phone beeps Monday morning, a new message from the doctor.
He is also very careful, but actually between the lines the message is clear. I’ve booked you in for neurosurgery, your appointment is on 8 August. Yours sincerely. It’s fucked. So, girl, get ready….. I’m trying to gently tell my loved ones, but I can see in their facial expressions that they’re thinking the same thing I am.
And the preparation begins. Intense. I’m frantically searching the net for any information. Yes, I have already read all the facts about the onset, the course, the risks, the possible solutions and possible consequences, about recovery, information about long-term rehabilitation, disability benefits and, according to my friend, I am supposed to study information about disability pension. Oh, shit, no way! But what I personally miss the most are the simple personal experiences of ordinary people who have dealt or are dealing with this disease. After the initial shock, I’m looking for even information as mundane as how the hell to cover up that giant scar on my head. Right. You can find girls in bathing suits on social media. Girls in new dresses. Girls on the mountain. Girls on beaches…. All the photos are optimistic, beautiful and say something like…. look how smart I am…successful….beautiful…..where I’ve been…..and how much I enjoy life…. I get it. Just for God’s sake, where do you get information like….. this is what you’re gonna look like…..this is what they’re gonna do to your head…..I’ve solved it with this hairstyle. Yeah, okay, maybe futile reasoning. But when you know what’s coming and it’s not pretty, you try to keep it to the bare minimum.
So I’m sitting in the hospital again, this time in the waiting room of the neurosurgery in the Hospital on Homolka. My son is sitting next to me. Like most of the patients around me, I am watching a video on the screen in the waiting room. It shows various head surgeries. I see the operating room, the machines, the lifeless bodies on the bed and the concentrated faces of the doctors and nurses around me. All of us in the waiting room sit in silence and watch the screen and the same thing seems to be going through our minds….no thanks….. My son jokingly remarks that he understands hospital PR, but they could do without him in the waiting room…. Agreed. If he wasn’t sitting here, I’d run away in cowardice. All I need is the first video and I look around the hallway for an exit. My son knew exactly why he was coming with me. He’s like a bodyguard there to keep me from escaping.
He came into the office with me. The neurosurgery doctor made a very good impression on me. He’s a bit of a blowhard, doesn’t beat around the bush, doesn’t repeat himself and gets straight to the point. If anyone is going to cut me, please let it be him. Before I know it, I’m standing out in the hallway, pre-surgery application forms in hand, admission date 6.9, surgery 7.9 and they send me straight to the 4th floor for blood draws. I’m writing to work that I’ll probably be with me for longer…
I left the house that day convinced that I could talk them into postponing it for at least six months. I came back with a taped forearm, application forms in folders, a tearful face, and inner skepticism.
It’s a bit of symbolism. A year ago in September I went on pilgrimage to Santiago de Compostela, 6 days with a full field on my back, 168km, sleeping in mass hostels, physical condition at max and feeling that life is just beautiful. Now , after a year, I have another journey ahead of me. And I suspect it will be a bit more difficult. I’ll be praying for sure….
“If you say ‘It’s hard,’ what it really means is that you don’t have the strength to fight for it. Stop saying it. Think positive.”
