Not long ago, it was exactly seven years since I am out of tune. OK I’ll call it like it is: seven years have passed since I got sick and since the world started turning while I was sitting on a bench in a park, and watching my little son playing. Seven years! I can’t sleep for days because of excitement. I feel like something big is coming. They say the illness leaves the body when it can’t recognize the person in it, and I feel so different!
I waited for the results for more than two weeks. It was an emotional roller-coaster. Duality. Excitement combined with the premonition that something is not OK. I feel good, I climb the stairs to the 3rd floor without a pause but I can’t tell if I have more energy or more will power. Because will power I have, I know that. So I have energy but I can hardly move my legs to walk. And the right leg doesn’t obey me at all. People ask me when will I get better? Sometimes, I answer: “Never. I have a neurodegenerative disease, I am happy I’m still on my feet.” But that is not a good answer because it shocks people and they would only want me and all the smiling people like me to be well.
I am talking to the patients in the waiting room. They ask me for a selfie. I ask them to show it to me before publishing it on some social network page. On the picture, I look fresh with rosy cheeks. No one can tell how tired my soul is because I hardly made it to this waiting room. I look vibrant, the photos lie so beautifully. I have Instagram for exactly seven years. I remember the day I posted my first selfie and decided it will be my picture-scrapbook: I feel very bad. I am taking a selfie. I am satisfied because I look normal. It doesn’t show how bad I feel inside. Even today, when I’m looking at the old photos, I can remember how I felt that day. But only I can. Now when I look at them, my whole journey looks like a joke.
The last few weeks I’ve been thinking about writing a sincere blog on how terribly sensitive I am. Like some kind of a Victorian lady. A hypersensitive being that is barely holding her head above the water. Sometimes, I feel tough as a rock and others I feel like a paper boat that is being threatened by the waves of life. The last two weeks while I’ve been waiting for the results, my sensitivity peaked. I frantically wondered: why am I so sensitive? Why does anything affect me, even this autumn weather in spring? I feel very emotionally disturbed.
A very kind nurse took me to the professor of neurology’s office to interpret and explain the results that were written in that complicated language doctors use to impress us. OK, and because the half expressions are in Latin, but tell me: wouldn’t it be nice if, in one part of the results, the doctor would explain the patient’s state in simple words we could understand. In layman-terms: Mrs. Marić, you have active and acute inflammation in your brain and spinal cord – that is why you have difficulty walking!
We are looking at my brain scans on her monitor. The pictures are fascinating and in layers. I know the brain very well. I see the inflammations in the whole limbic brain, in the center of my head near the pituitary gland. Also, from there all down the length of my spinal cord, I see a glowing highway. The pictures look very clear. The doctor/professor compassionately and very patiently explains to me in a manner that I understand: “Mrs. Marić, you have active and acute inflammation in your brain and your spinal cord because of which your walk is difficult… now we have to give you a pulse therapy to extinguish the inflammation and then we can try some therapy to put you back to function…” This is my first ever talk to a neurologist where she explains me my state very clearly. I am happy about that.
Nevertheless, I needed some time to “take in” the information. I feel like someone took the veil and the fog off the way I imagined my state. It is as if I got a GPS map of my inside and at the same time I am overwhelmed by a strong feeling of being moved. My poor brain, how it looks! I think of how angry I was with myself all day, every day! If I only saw this earlier!
The doctor tells me how we, after the steroids will try out some new therapies and tells me about this new one and instructs me to ask the doctors in Germany about their experience with it because the drug just came to Croatia. I tell her that I would really like to drive again. She tells me that we will do everything possible and we’ll see how will I react to the therapy. Now I feel moved again and with compassion I feel towards myself I am awash with pride and spite. Pride, because 5 years ago I was in such a bad state that they told me I was “untreatable” and now I am back in the game again! She told me that all my organs, my blood, and my psyche are in great condition. And spite because if I know something, I know about the placebo effect and the biology of belief and I know how to turn those chemicals into my elixir of life! Bring it on, life!
After the hospital, I sit in my meditation, my favorite therapy, thanks to what I have excellent blood tests and thanks to what I managed to return in a state where I can be helped. I will consider this for my victory. Only one in a row because I still have some way to go, but the journey is becoming more and more exciting.
I “go inside” and I imagine my shiny limbic (emotional) brain and the sparkly highway along my spinal cord. It is glittery. I imagine it passing through the energy centers (chakras), connecting them one by one. I love the highway. I love myself. Tears are running down my cheeks. I am sorry for being so hard on myself, I’m sorry for being so impatient with myself. If I saw this I wouldn’t be. My emotional brain is “on fire”. It’s no surprise after so much emotional pain and death around me in the past 7 years. It is no surprise o am so emotional! I finish the meditation by hugging myself and by saying I’m sorry. It’s OK, I forgive myself. From now on, I will motherly take care of myself. I am a mother and I need a mother because I don’t have a mother anymore. So, it’s a deal.
On Wednesday I’m going to get three more opinions to Berlin. I finally let my brother who lives there, help me. I don’t think the world is an ugly place, on the contrary! On the last Joe Dispenza workshop I got a clear message in my meditation: stop ignoring modern medicine!
So here I am.