Translator: Roberto Minelli Reviewer: Michele Gianella
For six years I did not pee.
Not a single drop.
I could only drink half a liter of water a day.
My kidneys had gone.
I could no longer expel water and toxins.
It is incredible how we only notice all the functions of an organ
when it ceases to work.
My speed changed when I was 23,
just when you are looking for your own path,
at the height of the desire to fully live this life.
When we still dream like children, but we start doing adult projects.
For me, there was no longer speed or time.
I was lost.
It was as if everything had stopped.
I had met a wall, smashed against it and there everything stopped.
Diagnosed with immune complex glomerulonephritis,
or Berger’s disease,
an autoimmune disease that attacks the kidneys.
At that moment I knew who had taken my dreams and my strong pillars,
and the only certainty I had left
was the name of the disease,
which contained the word “chronic”.
Then I immediately understood that we would have lived together forever.
The final diagnosis
came after more than two months of uninterrupted hospitalization,
at the mercy of different types of care.
I felt obliterated and numb.
Looking at myself in the mirror in my hospital room’s bathroom,
I didn’t recognize myself.
I would stare at my eyes
and all I saw inside me was emptiness.
A black abyss with no light.
Because of the aggressive treatment, I was losing my hair,
my curls no longer existed.
Hair was sparse, falling in strands.
I was utterly crippled, I could hardly walk and stand up,
I no longer had muscles
and the therapies I had to do were truly heavy.
The CVC, the catheter I had in the jugular artery of my neck.
I couldn’t even see it.
I was crying in an overwhelming silence.
For those two months, waking up every single day was like a present.
I entered the hospital on February 17th, that time,
and left it in late April.
Through the window of my nephrology room,
I saw the snow and the rain falling,
then I watched the leaves growing back on naked branches,
the green grass, the flowers bloom.
I also felt that spring inside my heart,
I wanted to be reborn, despite everything.
I used to lie down on the bed next to that window,
close my eyes
and I used to imagine being in my mountains, under the Monviso,
walking through those paths where, before the hospital,
I use to spend a lot of time with the people I love.
I began imagining, dreaming – it made me feel good!
I realized there were parts of myself I wasn’t aware of,
I had an inner strength to fight back which I had no clue about.
I wanted to live
and I would fight with all my might so as not to lose this chance.
Then I understood, willpower is our greatest strength!
I was taking more than 16 tablets a day,
plus several injections of other medicines,
but I wanted to be happy
and what most made me happy was being in nature.
I needed to feel this life!
I figured out how fragile and ephemeral it is.
While I saw it flow, I couldn’t feel it anymore,
I wanted to feel it, to be moved by it, grasp it, and live it!
Climbing arrived in my life like a river in flood!
It lit a spark, a fire!
I had already tried climbing before
but I was too busy with the pace of life
and had no time to commit myself to a passion.
I had to create and design my own way.
After everything that had happened to me,
I understood, we should create our path slowly,
on the experiences we make.
It makes no sense to plan too much
and I realized, the passions that ignite a spark in us
should be listened to, as they make us feel alive.
Climbing made me, and still makes me, feel good
It is just me and the rock under my fingers.
I perceive my body in its totality,
I live in the present moment
because all of myself stays in what I’m doing,
all the other problems are left at the foot of the wall,
while I climb up, far away.
During those five years,
despite all the medicines I was taking
and despite the constant checks,
I lived.
But in 2012, when I was 28, the disease came back.
She had always been there, silently, watching me and making me know myself.
Like a severe teacher and spectator.
But this time she was more aggressive.
Being an autoimmune disease,
it is difficult and often impossible to predict its evolution.
And when the doctor told me
that within two months I would have had to get into dialysis,
I got in the car, I closed the door
and I started crying so much I threw up.
As if I wanted to throw out the disease!
My parents and my aunt did all the tests
to donate me a kidney and save me from dialysis,
but none of them was compatible with me.
I ran out of time,
they put a catheter in my belly to do the peritoneal dialysis.
Every four hours, night and day,
I had a solution flowing in and out the abdomen
that by osmosis would clean my blood from toxins and water.
I went on like this for five months, but it didn’t work for me.
They tried again with the dialysis machine,
I was connected to it from morning to night,
stuck in a bed, for two weeks,
but since I had strong peritonitis in my childhood,
my peritoneum was injured
and this type of dialysis didn’t work for me.
I felt like I had been poisoned,
and thoughts came to my mind I’m now deeply ashamed of,
but I was tired and my mind out of control.
Now if I look back at those dark thoughts,
I’m so glad I didn’t give up
because I would have lost the wonderful things
life has given and keeps giving me.
I gained almost 11kg of toxins and water,
which ended up in the pericardium,
the pocket around the heart.
So I was urgently taken by an ambulance,
I could hardly breathe and I was scared by the sole thought of that word,
but I was passing away and I did not want to!
So I started telling the ambulance doctor
that I did not want to die.
(Applause)
He held my hand
and I kept repeating the same thing.
Until I closed my eyes, and don’t remember anything,
just flashes of an orange picture with sunflowers on my left
and my mother crying on my right.
The doctor, the next morning, told me
that I had spent the whole night attached to a hemodialysis machine.
They had saved me.
After a month they dismissed me and sent me home,
and from there my life on dialysis began.
Three times a week I’d go to the hospital, lay down in bed
and spend four hours attached to this machine,
which became my life partner,
the hospital became my second home and the nurses part of my family.
I couldn’t drink, only half a liter of water a day.
When it was hot
I looked at the bottle of water as if it were a drug,
I wanted to drink, I was thirsty, but I couldn’t.
I cried because I knew it would have hurt me.
Sometimes I would even get three or four kilograms
from one dialysis to another,
sometimes I drank on the sly
as if I were hiding from myself too.
Six years like that.
The pace of my life changed again.
This time, punctuated by the machine three times a week.
I went on the transplant list,
since then my phone had to be always available,
day and night,
I could be called at any time.
The doctors told me I’d be reborn with the transplant,
I would come back to life:
but I didn’t want to wait.
I wanted to live despite dialysis.
I wanted to decide the speed of my life.
Being in dialysis is a bit like living halfway,
one out of two days, you are connected to the machine.
I was always exhausted on my way back home.
However, even if I lived 50%,
I didn’t know how long I would have had to wait
to be transplanted.
But I knew
that the more I would hide and numb in the disease,
the less I would have done, fought, lived.
So I said to myself, I want to fully live that remaining half.
Mine were the days far from the machine.
In that 50% of my life I was left with,
I reloaded and I created moments,
I collected them and took them with me to the hospital.
My happy moments,
those that make you fly like Peter Pan.
I was there, in a bed, attached to a machine
but my heart was in the places I loved,
climbing with friends in nature.
I started climbing again, in trouble, slowly at the beginning,
with greater grit and passion,
choosing willpower instead of surrendering myself to the disease.
It was hard but I tried.
My limits were not like I had figured them out.
Climbing, perhaps because of the ascent itself,
was something spiritual for me, as well as therapeutic.
The effort to get to the top was rewarded
by the beauty of the landscape that could be seen from there.
Height scared me,
but it helped me to move my limits a little higher.
Like my illness, where suffering and pain
made me stronger.
Meter by meter, I was discovering the courage
of facing something that seems impossible.
In all this, I had a special person by my side, my partner Stefano,
who has always supported me, helped me, encouraged me, loved me.
We often left with our van
and I booked dialysis in many Italian hospitals.
This helped me feel less in that dialysis cage.
I traveled, always knowing I couldn’t get too far away,
as the transplant phone call I was waiting for
could have come at any time.
But the most wonderful thing that Stefano gave me
was freedom.
We did a course
and together we learned how to use a portable hemodialysis machine
that I called iRene [iKidney].
He became my caregiver, in any sense.
He became my nurse,
he learned to put the needles, to use the machine
connecting all the tubes, lines, filters and bags.
We both learned
to become freer, less dependent from the hospital.
Stefano, iRene and I managed to go climbing in Spain.
It was a dream for me to be there.
We were climbing up this amazing rock
I had only seen in pictures.
I was happy.
In these six years,
even if I lived halfway, I managed to live.
But there have also been many difficult times,
because dialysis is hard, it destroys you, it slowly eats you.
Every time you connect to the machine
it feels like it takes away a bit of yourself.
I went through several hospitalizations.
Every time, a thrashing I had to get up from.
There were ups and downs, often too many downs,
but climbing brought me back up, it was always a baseline.
It made me feel good, it made me forget everything,
it made me feel alive
and became one of my best medicines!
During the last year of dialysis, I was really tired.
My body was slowly falling apart.
But nine months ago, on February 2nd, at half past four in the morning,
the phone I had always kept by my side rang.
It was the Molinette hospital in Turin,
I almost passed out, there was a compatible kidney.
(Applause)
A backpack with all the things for the hospital
and my pajamas with colorful unicorns
were in the closet, waiting for six years to be grasped in a hurry.
After four hours of traveling, we arrived in Turin.
The writing above the ward door said “kidney transplant”,
and I took a second to sink in.
I was nervous,
but from the moment I got in there, I realized that I was in a family.
They reassured me, they took care of me,
they transplanted me, they gave me back my life.
Shortly after waking up from the surgery,
when I had my first pee after all those years,
I cried so much from happiness that my heart burst with joy.
This was only possible thanks to the huge gift I received.
Organ donation, I believe,
is the most unconditional, the purest act of love
a person can do.
It’s literally about donating life!
I will keep this gift and take it with me,
protecting it, taking care of it for as long as I can,
with immense gratitude.
Now I feel like I’m breathing clean and fresh oxygen.
I love climbing as much as before,
and I’m glad I’ve never given up the very passion that kept me alive!
In the course of these last ten years,
I have also understood what emptied and destroyed me.
I had to break apart to become a little more complete.
I learned the kindness of accepting,
the aggressiveness of fighting,
but also the relief of abandoning myself.
From those difficult days
I’ve earned the greatest teachings one could receive:
the awareness
that we never fully know each other
and that our limits are far beyond what we generally imagine,
that we must use our willpower,
this powerful engine we have
that helps us to get up,
even when the weight we carry seems to be too heavy.
Although I know the future will be uncertain
and the transplant will not be forever, given my autoimmune disease,
the profound meaning all this is having for me will stay.
And all my scars remind me that I’m alive,
that I have survived.
They remind me to be grateful every single day
because life is a priceless gift.
Therefore live it fully,
cultivate the passions that keep you alive,
that make your eyes shine and your heart beats,
that move emotions at night before falling asleep.
It is impossible to convey what I went through in these ten years,
but I am sure that each one of you in life
has had to fight, accept, get up again,
grow through these experience and eventually understand yourself more.
Don’t let the spark of hope fade away.
Keep the desire to fight alive and never give up,
even when everything seems dark.
Appreciate more what we have
in order to complain less about what we lack.
And I learned that the years of dreams,
which I thought I had lost when I was 23 – when I discovered I was sick –
are not the only years to dream.
There is no age to dream – indeed, I now dream even more,
with the awareness
that with my willpower I can try to achieve my dreams.
(Applause)
For six years I did not pee.
Not a single drop.
I could only drink half a liter of water a day.
My kidneys had gone.
I could no longer expel water and toxins.
It is incredible how we only notice all the functions of an organ
when it ceases to work.
My speed changed when I was 23,
just when you are looking for your own path,
at the height of the desire to fully live this life.
When we still dream like children, but we start doing adult projects.
For me, there was no longer speed or time.
I was lost.
It was as if everything had stopped.
I had met a wall, smashed against it and there everything stopped.
Diagnosed with immune complex glomerulonephritis,
or Berger’s disease,
an autoimmune disease that attacks the kidneys.
At that moment I knew who had taken my dreams and my strong pillars,
and the only certainty I had left
was the name of the disease,
which contained the word “chronic”.
Then I immediately understood that we would have lived together forever.
The final diagnosis
came after more than two months of uninterrupted hospitalization,
at the mercy of different types of care.
I felt obliterated and numb.
Looking at myself in the mirror in my hospital room’s bathroom,
I didn’t recognize myself.
I would stare at my eyes
and all I saw inside me was emptiness.
A black abyss with no light.
Because of the aggressive treatment, I was losing my hair,
my curls no longer existed.
Hair was sparse, falling in strands.
I was utterly crippled, I could hardly walk and stand up,
I no longer had muscles
and the therapies I had to do were truly heavy.
The CVC, the catheter I had in the jugular artery of my neck.
I couldn’t even see it.
I was crying in an overwhelming silence.
For those two months, waking up every single day was like a present.
I entered the hospital on February 17th, that time,
and left it in late April.
Through the window of my nephrology room,
I saw the snow and the rain falling,
then I watched the leaves growing back on naked branches,
the green grass, the flowers bloom.
I also felt that spring inside my heart,
I wanted to be reborn, despite everything.
I used to lie down on the bed next to that window,
close my eyes
and I used to imagine being in my mountains, under the Monviso,
walking through those paths where, before the hospital,
I use to spend a lot of time with the people I love.
I began imagining, dreaming – it made me feel good!
I realized there were parts of myself I wasn’t aware of,
I had an inner strength to fight back which I had no clue about.
I wanted to live
and I would fight with all my might so as not to lose this chance.
Then I understood, willpower is our greatest strength!
I was taking more than 16 tablets a day,
plus several injections of other medicines,
but I wanted to be happy
and what most made me happy was being in nature.
I needed to feel this life!
I figured out how fragile and ephemeral it is.
While I saw it flow, I couldn’t feel it anymore,
I wanted to feel it, to be moved by it, grasp it, and live it!
Climbing arrived in my life like a river in flood!
It lit a spark, a fire!
I had already tried climbing before
but I was too busy with the pace of life
and had no time to commit myself to a passion.
I had to create and design my own way.
After everything that had happened to me,
I understood, we should create our path slowly,
on the experiences we make.
It makes no sense to plan too much
and I realized, the passions that ignite a spark in us
should be listened to, as they make us feel alive.
Climbing made me, and still makes me, feel good
It is just me and the rock under my fingers.
I perceive my body in its totality,
I live in the present moment
because all of myself stays in what I’m doing,
all the other problems are left at the foot of the wall,
while I climb up, far away.
During those five years,
despite all the medicines I was taking
and despite the constant checks,
I lived.
But in 2012, when I was 28, the disease came back.
She had always been there, silently, watching me and making me know myself.
Like a severe teacher and spectator.
But this time she was more aggressive.
Being an autoimmune disease,
it is difficult and often impossible to predict its evolution.
And when the doctor told me
that within two months I would have had to get into dialysis,
I got in the car, I closed the door
and I started crying so much I threw up.
As if I wanted to throw out the disease!
My parents and my aunt did all the tests
to donate me a kidney and save me from dialysis,
but none of them was compatible with me.
I ran out of time,
they put a catheter in my belly to do the peritoneal dialysis.
Every four hours, night and day,
I had a solution flowing in and out the abdomen
that by osmosis would clean my blood from toxins and water.
I went on like this for five months, but it didn’t work for me.
They tried again with the dialysis machine,
I was connected to it from morning to night,
stuck in a bed, for two weeks,
but since I had strong peritonitis in my childhood,
my peritoneum was injured
and this type of dialysis didn’t work for me.
I felt like I had been poisoned,
and thoughts came to my mind I’m now deeply ashamed of,
but I was tired and my mind out of control.
Now if I look back at those dark thoughts,
I’m so glad I didn’t give up
because I would have lost the wonderful things
life has given and keeps giving me.
I gained almost 11kg of toxins and water,
which ended up in the pericardium,
the pocket around the heart.
So I was urgently taken by an ambulance,
I could hardly breathe and I was scared by the sole thought of that word,
but I was passing away and I did not want to!
So I started telling the ambulance doctor
that I did not want to die.
(Applause)
He held my hand
and I kept repeating the same thing.
Until I closed my eyes, and don’t remember anything,
just flashes of an orange picture with sunflowers on my left
and my mother crying on my right.
The doctor, the next morning, told me
that I had spent the whole night attached to a hemodialysis machine.
They had saved me.
After a month they dismissed me and sent me home,
and from there my life on dialysis began.
Three times a week I’d go to the hospital, lay down in bed
and spend four hours attached to this machine,
which became my life partner,
the hospital became my second home and the nurses part of my family.
I couldn’t drink, only half a liter of water a day.
When it was hot
I looked at the bottle of water as if it were a drug,
I wanted to drink, I was thirsty, but I couldn’t.
I cried because I knew it would have hurt me.
Sometimes I would even get three or four kilograms
from one dialysis to another,
sometimes I drank on the sly
as if I were hiding from myself too.
Six years like that.
The pace of my life changed again.
This time, punctuated by the machine three times a week.
I went on the transplant list,
since then my phone had to be always available,
day and night,
I could be called at any time.
The doctors told me I’d be reborn with the transplant,
I would come back to life:
but I didn’t want to wait.
I wanted to live despite dialysis.
I wanted to decide the speed of my life.
Being in dialysis is a bit like living halfway,
one out of two days, you are connected to the machine.
I was always exhausted on my way back home.
However, even if I lived 50%,
I didn’t know how long I would have had to wait
to be transplanted.
But I knew
that the more I would hide and numb in the disease,
the less I would have done, fought, lived.
So I said to myself, I want to fully live that remaining half.
Mine were the days far from the machine.
In that 50% of my life I was left with,
I reloaded and I created moments,
I collected them and took them with me to the hospital.
My happy moments,
those that make you fly like Peter Pan.
I was there, in a bed, attached to a machine
but my heart was in the places I loved,
climbing with friends in nature.
I started climbing again, in trouble, slowly at the beginning,
with greater grit and passion,
choosing willpower instead of surrendering myself to the disease.
It was hard but I tried.
My limits were not like I had figured them out.
Climbing, perhaps because of the ascent itself,
was something spiritual for me, as well as therapeutic.
The effort to get to the top was rewarded
by the beauty of the landscape that could be seen from there.
Height scared me,
but it helped me to move my limits a little higher.
Like my illness, where suffering and pain
made me stronger.
Meter by meter, I was discovering the courage
of facing something that seems impossible.
In all this, I had a special person by my side, my partner Stefano,
who has always supported me, helped me, encouraged me, loved me.
We often left with our van
and I booked dialysis in many Italian hospitals.
This helped me feel less in that dialysis cage.
I traveled, always knowing I couldn’t get too far away,
as the transplant phone call I was waiting for
could have come at any time.
But the most wonderful thing that Stefano gave me
was freedom.
We did a course
and together we learned how to use a portable hemodialysis machine
that I called iRene [iKidney].
He became my caregiver, in any sense.
He became my nurse,
he learned to put the needles, to use the machine
connecting all the tubes, lines, filters and bags.
We both learned
to become freer, less dependent from the hospital.
Stefano, iRene and I managed to go climbing in Spain.
It was a dream for me to be there.
We were climbing up this amazing rock
I had only seen in pictures.
I was happy.
In these six years,
even if I lived halfway, I managed to live.
But there have also been many difficult times,
because dialysis is hard, it destroys you, it slowly eats you.
Every time you connect to the machine
it feels like it takes away a bit of yourself.
I went through several hospitalizations.
Every time, a thrashing I had to get up from.
There were ups and downs, often too many downs,
but climbing brought me back up, it was always a baseline.
It made me feel good, it made me forget everything,
it made me feel alive
and became one of my best medicines!
During the last year of dialysis, I was really tired.
My body was slowly falling apart.
But nine months ago, on February 2nd, at half past four in the morning,
the phone I had always kept by my side rang.
It was the Molinette hospital in Turin,
I almost passed out, there was a compatible kidney.
(Applause)
A backpack with all the things for the hospital
and my pajamas with colorful unicorns
were in the closet, waiting for six years to be grasped in a hurry.
After four hours of traveling, we arrived in Turin.
The writing above the ward door said “kidney transplant”,
and I took a second to sink in.
I was nervous,
but from the moment I got in there, I realized that I was in a family.
They reassured me, they took care of me,
they transplanted me, they gave me back my life.
Shortly after waking up from the surgery,
when I had my first pee after all those years,
I cried so much from happiness that my heart burst with joy.
This was only possible thanks to the huge gift I received.
Organ donation, I believe,
is the most unconditional, the purest act of love
a person can do.
It’s literally about donating life!
I will keep this gift and take it with me,
protecting it, taking care of it for as long as I can,
with immense gratitude.
Now I feel like I’m breathing clean and fresh oxygen.
I love climbing as much as before,
and I’m glad I’ve never given up the very passion that kept me alive!
In the course of these last ten years,
I have also understood what emptied and destroyed me.
I had to break apart to become a little more complete.
I learned the kindness of accepting,
the aggressiveness of fighting,
but also the relief of abandoning myself.
From those difficult days
I’ve earned the greatest teachings one could receive:
the awareness
that we never fully know each other
and that our limits are far beyond what we generally imagine,
that we must use our willpower,
this powerful engine we have
that helps us to get up,
even when the weight we carry seems to be too heavy.
Although I know the future will be uncertain
and the transplant will not be forever, given my autoimmune disease,
the profound meaning all this is having for me will stay.
And all my scars remind me that I’m alive,
that I have survived.
They remind me to be grateful every single day
because life is a priceless gift.
Therefore live it fully,
cultivate the passions that keep you alive,
that make your eyes shine and your heart beats,
that move emotions at night before falling asleep.
It is impossible to convey what I went through in these ten years,
but I am sure that each one of you in life
has had to fight, accept, get up again,
grow through these experience and eventually understand yourself more.
Don’t let the spark of hope fade away.
Keep the desire to fight alive and never give up,
even when everything seems dark.
Appreciate more what we have
in order to complain less about what we lack.
And I learned that the years of dreams,
which I thought I had lost when I was 23 – when I discovered I was sick –
are not the only years to dream.
There is no age to dream – indeed, I now dream even more,
with the awareness
that with my willpower I can try to achieve my dreams.
(Applause)
Please follow and like us: