From the day that Georgia Papazisi felt a weakness in her left wrist, which she would not have paid much attention to at first, to the moment she put the final dot, with her eyes, in her book Why not me? seventeen years have passed.

In that time, which seems as if the world has changed after some subtle, less spectacular than the first, but not inconsiderable in terms of a radical shift at every level of the big bang, Georgia has had days, months and years in Greek hospitals and clinics abroad with misdiagnoses, learned new medical terms, lost hope in googling those that you feel sucking your soul, reminding you that you at least have one, introduced herself fearfully to the ALS (motor neurone disease) and eventually learned much better than he would have liked to disease Lyme (borreliosis).

She travelled for treatments all over the world, from America to India and from China to Germany, recharging her faith at all costs and risks due to the suffering; so effectively, so tirelessly, that today, after 17 years of scattered blog entries mylymeupdates.blogspot.com and Tobii Eye Tracker technology, is able, despite her mobility problems and speech difficulties, to narrate her battle or, more accurately, her life with Lyme disease, deconstructing any “why me?”, turning the question around, in her book released by
Drawer publications
with her eyes alone.

“We believe that everything in life is random, we compare ourselves to others, we judge and complain. If we realize that, if not 100%, at least the majority, we create our own lives, with our beliefs and therefore our minute-by-minute decisions, everything changes.”

Yes, Georgia Papazisi wrote a book with her eyes and this was something she had been dreaming about for several years, “and it finally came true”. Before that first weakness in the hand, Georgia was herself as she had known her until then: the girl who always felt more “damaged” than the others, the one who spent a year in America at 19. The young woman who studied marketing, but ended up working in a bank, partying at Faz (“the Greek Studio 54”) and living, like most adults, on automatic.

A clear diagnosis took a few years and a few more symptoms (problems with walking and balance, and slowly with speech), but it finally came for Georgia, who had to go through procedures on her own, do mini-retrospectives, discard what she thought she had chosen and talk to patients from all over the world to be sure that she did have Lyme.

I ask her to describe the disease for someone who may be hearing the term for the first time in their life. “It is one of the most common tick-borne diseases and is caused by the bacterium Borrelia burgdorferi. It occurs in two forms, acute and chronic disease. The former is characterised by flu symptoms and if not diagnosed and treated in time, the bacteria can spread and hide in different parts of the body.

Weeks, months or even years later, as in my case, problems can occur from the brain and nervous system, muscles and joints to the heart and circulatory system – that’s chronic Lyme. When they reach this form, they are often misdiagnosed as multiple sclerosis, ALS, various psychiatric illnesses, etc., as they mimic those of many others,” he explains.

Her own repeated misdiagnoses left the underlying infection untreated for a long time, resulting in a form of ALS, i.e. gradual loss of movement and speech.

Geo_papz: Today was the first day of the rest of my life! Thanks to this device I can use my laptop with just the movement of my eyes! It works amazingly! Until my health is restored, until the miracle happens, he will be my best assistant #tobii #tobiidynavox #inspiration.

“It is a special technology that allows the use of the computer, typing, moving the cursor, etc. with your eyes! “Eye gaze” is the name of the technology and it’s a little device, a perfect little gadget that is placed at the bottom of the computer screen and reads the movement of the eyes,” Georgia replies when I ask her to explain, as if she were talking to a five-year-old, what it means to “write a book with my eyes”. “It’s fantastic, really! This is how I wrote the book, this is how I communicate with the outside world, I’m learning Spanish, I’m on social media, everything everything!”

This communication with the world is an essential element of life for her. From the first years of her illness, the first symptoms, the first medical foul-ups, the ambiguities, the protocols and the unclear diagnoses, Georgia shared step by step this whole journey, which she initially considered an adventure that will come full circle and just leave her stronger, on her blog and on social media. Anyone who has memories of the “Orthodox Greek Twitter” of parties, witty jokes, parades and innocent meetings between strangers that went from friends to husbands will remember Georgia.

A girl who just wanted to be herself again. Not the given, not the beautiful or weak enough, the one who is subjected to the needs and norms of others, the self that sacrifices itself to survive by being satisfied. No. Georgia wanted to be the Georgia who ran up stairs, danced in the basement of the bank on her break, didn’t need help to eat and flirted in clubs, impressing with her dance moves.

“I have always been and remain quite outgoing and social,” she tells me, explaining what instinct led her to share her health journey almost diary-like in a country that has taught us to hide when we don’t feel physically strong, with scattered nuggets of prejudice or even shame.

 

“Those years when the disease started were nightmarish, I didn’t know what was coming, I describe them in the book… Writing on the blog and Facebook was an outlet. Then I was introduced to Twitter, which was at its height at the time. What can I say, sharing helped me in everything, as did the people who came into my life. Lifelong friendships were formed with some of them. The travel, lots of treatments, advice, suggestions for treatment, new information from others who were in my situation. And so much support and love from acquaintances and strangers alike. I can’t even imagine how I would have made it to today without the sharing. It’s unimaginable to me not to share, especially since I realized that it not only helps me but others as well.”

Georgia needed the help of social media users to try a cure in India. He took the first, necessary step: he asked for it. And he got it. And this was not the only time that the Greek internet stood by its side, proving that it is not just a mass of belligerent robots. Also, this was not the only impulsive trip she made, hoping that on her return she would not need an escort, a wheelchair, or help to eat or meet her basic needs.

“Looking back, hours upon hours I honestly wonder about some of my choices,” he admits, looking back on those flights, stays and treatments at clinics in India and China, Miami and Hamburg. But she does not regret any of her choices “because they all gave me something”. She repeats something that she mentions more than once in her book and seems to have become so ingrained that it has become a key element of her overall understanding of both life and human behavior: “Each of us does the best we can at all times, based on where we are consciously at a given moment. Back then, every choice I made made made sense to me. Now any discomfort has been erased and all that is left is knowledge, experience, beautiful memories and wonderful friends in many parts of the world!”

Obviously, he identified differences in the way medical science is practiced in Greece and abroad, mainly because of different cultures. “Everywhere there are good and not so good health professionals, pro and con. I used to think that abroad they were centuries ahead of us, but now I’m not so absolute. There is a lot of good work being done here too, we have excellent professionals. It’s just that in some specific rare diseases there is not a lot of experience,’ she says, describing something that made a terrible impression on her while she was in India for treatments: “There they go to the doctors on a first name basis. It’s like saying here ‘now Dr. Maria is coming to examine you! Okay, Indians and Americans are considered to be happier and more open people than Greeks. Generally true, at least in my own adventure so far.”

February 2014. But I decided to stop the detailed updates here on the blog. I can no longer write, get excited, wait and nothing happens. I’m bored. I’m tired of investing emotionally in treatments and then being disappointed. I’m tired of waiting for something. It’s soul-crushing especially when I read them after a long time. I’m not giving up. I’m just letting go. Whatever happens, let it happen. I don’t give up and I don’t actually compromise with the disease. If I don’t feel sick inside, how can I compromise? Yes, almost 7 years later, I’m in denial about the damn nose. Lyme? ALS? Whatever shit it is, however shitty it’s called, I deny it. Deep down I know. I know what it is, why, how, when I got it, how it will go away. But if I compromise, I know that I will die right afterwards. I have so much inner strength that it can’t, at some point it will spill out. But this needs calm. And time.

The 170 and something pages of Why not me? is not a study in how to let yourself be exhausted in a fatalistic passivity. Georgia searched, travelled, communicated with people who were also ill, learned about treatments that could “work a miracle”, and in a way forced herself to be optimistic. Until he got tired. He got really tired, always, though, insisting on not self-mutilation. In these pages one reads all aspects of a life in transition, a stage that lasted a long time.

A fluid repentance for all the frustrations we impose on ourselves, the prophecies we see self-fulfilling almost reverently, our clichéd rejections of anything we take for granted, trivial, so familiar and so close to our eyes that we almost stop seeing it. As if it is not there, as if it turns into something transparent, invisible and precious only when it starts to leave us.

“We believe that everything in life is random, we compare ourselves to others, we judge and complain. If we realize that, if not 100%, at least the majority, we create our own lives, with our beliefs and therefore our minute-by-minute decisions, everything changes. We take responsibility and become more flexible in thought and action. “I can’t” becomes “what if I can?”, “it’s hard”, “what if it’s easy?”, and we understand that there is not only “why me?” but also “why not me?” in everything! Personally, I find it a very interesting question, an interesting thought that empowers me,” he says.

This reversal of limiting beliefs, through which our brain tries to protect us from the possibility of disappointment by playing the role of the most toxic “mommy” we will ever know in our lives, is an inherent part of meditation. Georgia entered this universe, the often underestimated one of self-improvement. No, he did not have to tear down any immense internal fortress of disbelief or struggle for any difficult detachment from the deeply phobic cynicism of square logic.

“I was drawn to all of this,” he says, “I was looking for answers and I wanted to learn, to experience alternative ways of thinking and living, to evolve in general. But especially with the illness, it became an intense need, so I was given the opportunity (and the time) to let go more. I guess it’s a defense, too. When the body can’t, the spirit takes action and finds the right tools for each person to help.”

“I choose to write a new story,
to reevaluate myself,
to redefine myself.
I choose to no longer feel small or stuck or unable to move
or create changes in my life
no longer being dependent on external events or circumstances.
I choose to feel great, free, capable, effective,
complete and confident.
I choose to be unconditionally okay.”

I ask her who she thinks needs her book, which ends with a three-page meditation by dr Melissa Sell, more than anyone, or at least more than she thinks.

I imagine her answering with her eyes, sending the cursor to the right key, like a conductor of a consciousness coming from the future: ‘I think everyone can get something from any book, if it’s something they need, it will catch their interest and they will get it. Why not me? I hope young women will read it, who like me, felt not pretty enough, capable, capable, worthy, smart, talented, loving, strong. To free themselves from limiting beliefs, to break free from fears and insecurities so that they can live a beautiful life of health and abundant love. We all have an incredible and inexhaustible power within us that we are usually unaware of. But it exists. I promise you.”

“My eyes are always on the prize.
I’m sure the prize is already mine.
I’m having fun with the process of expansion.
I’m glad to know how this story ends.
I know that I can transform any experience for my greatest good.
I feel so strong.
I feel so confident.
And I feel so free.”

The article was published in LiFO.

In its electronic version you can see the original HERE!

Photo: Parris Tavitian/ LIFO