“Holy Father can we take a selfie?” asks Simona. “But I don’t know how” replies Pope Francis. It’s easy, just click here!”
Simona was received by the Holy Father on July 13th. The excitement was skyrocketing, but you have to take a step back in time to understand who Simona is and why she had this meeting with the Pope?
Simona’s story
Simona Anedda, born in Rome in 1974 and traveling has always been her life’s vocation. “I started with an Erasmus in Iceland and, after graduating in Fine Arts, I moved to London and then I visited all of Europe. In 2000 I was in New York and finally in Chicago.”
At the age of 25 I started working as a tour leader for The Medical Congress and at 30 I set off on a one-year trip to Australia. On the way back I moved to Germany, then I resumed my activity, working for Finmeccanica and the Italian Space Agency.”
A life full of satisfactions that of Simona, a seemingly normal life, the life of a girl full of colors that suddenly sees the shadow of an unexpected monster: primary progressive multiple sclerosis.
The darkness suddenly
“In 2012, just before I left for a trip to French Guinea, I started to feel sick and on the return, after many tests and examinations, I was diagnosed with Multiple Sclerosis. A doctor told me, “It’s better to rest and stay away from the heat.” And I said, “What if I leave for Brazil, what do you think?”
In short, I reacted to the news by setting off by myself on a two-month trip to the land of Carioca (Rio de Janeiro) in January 2013.
Today Simona no longer walks, she can’t move her arms and does not breathe well. “But there’s no point in crying,” she repeats several times during her interview with Interris.it. “Since 2014 I have been in a wheelchair and – between therapy sessions – I have resumed traveling and being independent, despite everything. So I left for Iceland and, in June 2016, I was in Miami, a “training” trip ahead of my subsequent challenges on wheels. In 2017, thanks to a fundraiser, I spent five months between India, Nepal and Indonesia. I feel like I won’t have a long life, but I want to keep traveling, and here I am ready for more departures.”
A life-eating disease
Multiple sclerosis is a neurodegenerative disease that affects the central nervous system. It is complex and unpredictable, but it is neither contagious nor deadly.
It is characterized by an abnormal reaction of the immune defenses that attack certain components of the central nervous system mistaking them for foreign agents, for this it is part of autoimmune diseases.
It is a chronic disease: at the moment there is no definitive cure, but there are numerous therapies that change its trend, slowing its progression.
Some data:
Multiple sclerosis (MS) can occur at any age of life, but it is most commonly diagnosed in young adults between the ages of 20 and 40.
There are about 2.5-3 million people with MS, of which 600,000 are in Europe and about 122,000 in Italy.
The number of women with multiple sclerosis is almost three times as many as men.
MS is most prevalent in areas far from the temperate equator, particularly Northern Europe, the United States, New Zealand and South Australia. The prevalence of the disease on the contrary seems to have a progressive reduction as it approaches the equator.
Can you tell me about the meeting with the Pope?
“The meeting with the Pope was completely unexpected. I thought it was a joke. And instead Claudius, my guardian angel, had really written to the Holy Father talking to him about me and asking him to receive me. My family was in disbelief, too. Only Claudius could know the truth, because he was the one who received the confirmation call.
We were received in a private lounge and when he arrived we greeted each other in a very affectionate way. I told him my story, and I showed him a video that I had shot with different images of India.
When we finished watching the video I asked him if we could take a selfie. “But “I don’t know how” he told me, and I encouraged him, telling him that I couldn’t move my hands either. At that point, Claudio held up the phone and His Holiness pressed the button in the middle to take the shot.”
Is there a time when you got particularly excited?
“Yes, we talked about my relationship with faith, and I quietly told him that since the disease had begun to devour my life I can no longer pray.” “Then I will pray for you,” he said, “but I’d like you to pray for me too.”
Is there anything you wanted to tell him but couldn’t ?
“Time flew and I couldn’t say everything. There is a project that I care about so much in particular and which I hope someone can finance. It is a liquid vacuum cleaner. Unfortunately people like me have personal management issues regarding going to the bathroom, so having worked at the space agency I thought: why not create a vacuum cleaner like the one astronauts use? That way you could avoid unpleasant inconveniences by managing to have that extra bit of autonomy that never hurts. I ‘ve made one and they just have to assemble it, I hope that in the future an object like this can be put on the market. I’m sure it could benefit a lot of people.”
What’s the best and worst memory of your life now?
“There are many good times and they are all related to the fantastic people I have met during this journey called life. Very bad moments few, if we think about the travelling, but I remember meeting a guard at the Taj Mahal museum in Agra, India. When I arrived at the entrance, I was told that I could not enter and he said to me , “Get up and walk”. I started telling everyone, I got the impression that the guard thought I wanted to play a joke by showing up in my wheelchair. In the end it was a gesture of ignorance, so much so that, in the end, when the opportunity to enter came, I did not accept because I was too tired and annoyed. The beautiful part came in the evening when I met a journalist from New Delhi who interviewed me to tell my story. He introduced me as a girl who had arrived from Italy but despite the difficulties she had not been allowed to enter. By the way, they even charged me for a full-price ticket. It was really a scandal.”
Where do you find the strength to always react positively to life? What’s your secret?
“The secret is that I’m in love with my life. Sure, I don’t have much freedom, today I live a situation of total captivity. I feel all my pains and live them in a very intense way, but I love to talk and tell. I always say that I have adapted my lifestyle to my current condition, because in the end little has changed. I continue to travel a lot, it gives me the charge and the strength to move forward and this is the message that I would like to send, not to lock yourself away, not to give up because you must not give in to the disease, you have to think about an alternative plan.”
Upcoming trips around the world?
“”I had many, I wanted to cross Africa by RV but with this pandemic it isn’t possible. I’d also like to take an eco-friendly trip. I love to respect the environment, I’m always very careful about where I throw my rubbish and so I would like to take a trip on an electric bike and maybe meet other people who, like me, are sick but who maybe do not have the strength to leave the house.
I often wonder: where are the people who are sick like me? What do they do? What is their life like?
Maybe I should set off again, from this country, meet the people who are sick and bring something positive, saying that if I can succeed you can too!
In the meantime, I got a call from a hospital in San Giovanni Rotondo and we crossed our fingers hoping that Padre Pio would want me. I really need treatment at this rehab facility.
When I come back from this rehabilitation, who knows if I can really do this bike ride starting from my Sardinia!”.
