TONI MILANO THE WARRIOR
LIFE IS A BATTLE AND A TRUE WARRIOR MUST ALWAYS FIGHT
This is the story of an Italian boy, born in the long-gone summer of 1981, who grew up in German-speaking Switzerland and has now lived in Ticino for many years. A determined young man who, thanks to his courage and self-awareness, has succeeded in turning his unfair fate into a precious gift.
Here he tells us the tale of how, when a rare form of muscular dystrophy started to turn the everyday activities he had always taken for granted into impossible ordeals, he chose to focus not on his misfortune, but on the chance it gave him to discover and reveal skills he would never have imagined to have.
This boy, now a grown man, wishes to set an example and carry the torch of hope for all those who suffer from a condition that still has no known cure.
This is a story in three acts.
“First Life”, the most important and formative stage; “transition”, midway years marked by great uncertainty; and “second life”, a period started with the onset of the first symptoms and lasting through constant worsening to disability and the complete disruption of Toni’s daily routine.
Life may have dealt him a rough hand, but that boy has never stopped feeling blessed, because he knows in his heart that he has also been given the unique chance to live two lives.
1981-2003. First life.
Carefree childhood
Toni was a lively, apparently healthy boy, who jumped with enthusiasm and a light heart into a career in professional cycling, beginning in the youngest category (6+ years). To him, this was a game a wonderful game.
From the very beginning, Toni held a clear vision in his mind and a big dream in his heart. Year after year, he climbed all the steps, according to the natural progression of his physical and mental development, until the small boy turned into a professional athlete competing on both track and road. His dedication and commitment were always so strong that they soon earned him the nickname “Warrior”.
Ever since his younger years, Toni’s professional development was based equally on direct experience and formal education. He soon started collecting qualifications and responsibilities, and eventually earned the full trust and respect of the cycling world.
2003 - 2012, Transition
Discovering the disease
I had no idea I had been born with a rare genetic disorder that would soon change me and my whole life. The first vague hints that something might not be right started when I was a boy. Running, even for short distances, or climbing more than one flight of stairs at a time could be challenging. But these symptoms were so subtle at first that neither I nor the many—maybe too many—doctors I turned to were able to find a link to any known pathology.
I underwent a seemingly endless string of medical exams, sustained only by willpower and resilience, but no tangible results came back—only more confusion. There seemed to be nothing wrong with me, except for slightly elevated transaminases that were later found to be located in the muscle tissue.
In 2003 I had a specific muscle biopsy, a procedure difficult to carry out even in a special facility (itself hard to find). The only certainty by then was that I was dealing with a rare genetic form of muscular dystrophy.
My never-ending journey started then and there. This new nightmare haunted me, sucked all the happiness out of me, made me avoid the company of my loved ones—it soon turned me in a completely different person. I turned to cycling with even more enthusiasm and commitment than before, while I tried to understand what lay ahead and why this had happened to me.
The age of innocence and light-heartedness had ended.
2012, second life
Rebirth
My previous life appeared to have come to an end.
My second life began in 2012, after the long years of researching and medical exams that followed my 2003 diagnosis. With it started a long journey that, at a medical level, became even more difficult, uncertain, and serious if such a thing is even possible.
This is how the light-heartedness of childhood, my first life, and the transitional period of great uncertainty ended.
2012 opened a new stage in my life where analyses, therapies, and exams followed one another in the unwavering attempt to chase and treat the constant degeneration of my disease. I had to work extra hard on my mental health and on myself to cope with all this.
I had to re-adapt to so many things that I had always taken for granted.
It really felt like having been reborn.
Now that I had identified the source of my problems, I resolved that I would fully embrace my responsibilities. The disease might affect my life, but I wouldn’t let it bite into my inner strength, my true self. I would find a way to fight back and take care of my health as best I could.
I realized that cycling was shaping me not only as an athlete, but also as a man. The lessons this discipline had been teaching me ever since I first set my foot on a pedal were guiding me through life, showing me the right path to follow, giving me purpose and direction.
That moment I realized I was fighting the first battle of my second life. Losing the war was not an option.
Accepting all this was, and still is, hard. It takes an incredibly strong will not to feel a victim, but instead embrace life with open arms. Let’s not forget that behind “the Warrior” there is always “Toni”.
My medical chart does not define who I am. I haven’t become a disease, I am not my wheelchair. I am Toni, as I always was and always will be. It’s far too easy to identify a wheelchair user with their disability or their impairment, forgetting who they are inside, their personality, their individuality.
Fighting and winning prejudice is hard, but possible. All it takes is to look at the person, not the disease. We are all human, and our soul isn’t caged inside a disability.
To those who meet me, things might seem easier than they are, because I fight everyday not to show the hardships and challenges I have to face.
Having to live this life makes you appreciate even more the good things that every day brings. It is an incentive to show and share this positive thinking with everyone.
Still, it took me long years of reflection, and a lot of thinking, crying, and suffering to reach this point. The people who have stood by me throughout are very few but precious.
I knew perfectly well of what pathology I was (and still am) a slave.
I gathered all the medical information I could, even though I knew it might be better not to know too much. I knew what I was facing then, as I know now what I am going to face further down the road: my disease is physically disabling.
It’s also true, though, that modern wheelchairs can rely on incredibly advanced technology. Combined with the right amount of willpower, they can offer an almost normal daily life.
All this has never stopped me. Time has proved me right. After a first period of discouragement, I managed to take control over my life as far as humanly possible through unyielding physical and mental dedication. My second life had begun.
I have to say I have been lucky. It’s true that my condition has gradually worsened to the point that I’m no longer able to perform certain tasks, but I have also acquired new skills. I have reviewed and rearranged my priorities, I have surrounded myself only with the people who have always and truly believed in me, and I have met so many new friends. This is why I choose not to waste precious time complaining.
My disease hasn’t changed who I am, although there have been moments when I feared I had lost my true self along the way—sometimes to tiredness, sometimes because someone did not believe in me. It was thanks to my determination and the support of those who always had faith in me that I eventually recuperated and now I never lose hope.
During this period of inner growth, I learned to appreciate what really matters. I learned not to give in to anger over trivial matters, because it’s just not worth it. I choose to give my full attention only to the important things in life. It saddens me to see people who don’t realize how many exciting possibilities come their way every single day.
I try to live as best I can, and I hope to pass on my positivity to the people in my life, because nobody makes it far on their own.
Today I am contented. I know where I want to go and what I can accomplish. I am loved and have so much love and pure friendship to give, without prejudice. I don’t know what the future will bring, but then… nobody does.
I have learnt that, in my own small way, I can set an example for others I can help people who have been even less lucky than I. I can use the lessons I have learnt throughout the trials I went through, passing on the message in a sort of “school of life”.
Today I feel fulfilled at last. Wellbeing, sport, and life (my own as well as others’) are once again at the center of my world.
A disabled person is not someone who can’t use their legs, but someone who chooses not to use their brain.
At the end of the day, my one true hope is to have managed to turn a negative situation into something positive.
Acknowledgements
I wish to thank all my true friends, colleagues, supporters, collaborators.
My heartfelt thanks go to the team of medical professionals who always stood and still stand by me, supporting me throughout this journey. They all play a fundamental role in my life—they are part of a big chosen family who completes and supports me like a pillar of strength.
A very special hug to my two greatest young supporters, Mirco and Sandra. I love you.
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