Acceptance

Italian

In all my memories of the illness, the worst personal violation was not about the therapies and their collateral effects, though horrible, and which in some cases remain now, four years later.

I was then in one of the moments of “super work”, with sleepless nights, non existent lunches, and with eyes which begged for pity after too many hours in front of the computer.
In the middle of it all, my immune system went into “tilt”.

With no advance warning, I found myself is a strange unknown place, full of white sheets, nurses wearing greenish face masks, exams, blood tests... endless silences in the shadows of lowered window shades and the always annoying neon lights.

Before then, I'd rarely seen a hospital from the inside. I'd visited someone from time to time, but only for half an hour. This time was different. The sick person in the bed was me. The gazes of the doctors had a different expression than what I'd noticed before. Their look vacillated between professional detachment and human contact.

I felt that I was disturbing them... that I was taking the place of someone who really had a serious problem.
I had no idea what was wrong, and could not have imagined it at all.
My thoughts were about work, and the thousands of things still to accomplish.
How would I get to the weekend if I could not move from there?

The diagnosis felt like a lethal blow: leukemia.

I knew nothing about the illness. I knew nothing about the hospital. I knew nothing at all.
Yet, there I was, with a fever which was elevated to the point where both my head and my eyes became foggy.
I continued to think about when I could return to the office and take care of my own things…
That thought was a last grasp of normality in the midst of a whirlpool of bad news dragging me downward.

Having to let go of that grasp was the moment of my worst violation.
I realized that this was not going to be brief, that instead it was destined to be long and painful.
That work had to wait. That my life had to wait.
That even my existence was no longer a sure thing.

From healthy to seriously ill.
From living to surviving.

How I struggled to accept that new condition.

The awareness that there was another world, beyond what I had known.
It was made of pain, small steps, hope, therapies and prayers.
In this world, the time passes slowly and there are long hours to simply think.

Despite it all, the mind remains lucid in this world. After bolting away like a wild horse, the mind calms and convinces you that this is, after all, a new challenge, a difficult test, and a large obstacle to overcome.
The difficult phase will be long, and you will want to cry. But, you can cry while walking and while moving forward.

Affronting a monster, especially an unexpected one, is never easy.
Yet, from the moment in which you change your visual you enter into the right mentality.
From that moment, you can consider yourself ready for the fight.

And to win.

The fourth year

Italian

March 17 of four years ago marked the lowest point of my descending curve...
Eaten away by the leukemia, crushed by the weight of the chemotherapy and flattened by a cycle of radiotherapy.

I was isolated in the Bone Marrow Transplant Unit of the hospital, sunk deep into the bed with three electro-mechanical pumps continuously administering fluids via a vein catheter inserted into my chest.

Four years ago today, I had just finished (once again!) losing all my hair, and at a weight of 55 kg I had never been so thin.

I knew that a few hours earlier my brother, judged a compatible marrow donor, had been subjected to a painful (and generous) withdrawal of marrow blood from the bone of his iliac crest.

So, I was waiting for the arrival in my room, at any moment, of the life-saving serum to substitute my own bone marrow, which had been devastated by the therapies.

The afternoon was calm and despite the closed window, I could feel the warmth of the sun. It would soon be June and finally, unless there were surprises, I would be able to leave the hospital and go home.

A face appeared on the other side of the glass door; two blue eyes scrutinized me for a long instant. Everyone in that department wore hygienic masks, but I was accustomed to recognize them by observing their bodies and their movements.

The nurse with the sky in his eyes was Matteo. He cautiously opened the door and entered, holding a dark red bundle in the fold of his elbow, the way newborn babies are carried.

He walked over to me, controlling every detail on the label of the bone marrow blood bag, and asked for confirmation of my personal information.

Matteo then hung the bag on the pole for infusions, connected it and in the instant before beginning the delicate process told me to have positive, hopeful thoughts.

My mind raced... the visions of the bathroom at home after I had fainted, the entry into the oncology emergency room, the dramatic moment when I found out about my leukemia, the injections of chemotherapy which beat me down, the slow recovery, with a daily count of white blood cells, the smile of the doctor who told me about the verified compatibility of my brother as a bone marrow donor, the wonderful people I have met and to whom I want to demonstrate that their faith and esteem was totally reciprocated...

The transfusion commenced under the watchful eye of Matteo, who regulated the velocity of the flow. Then, when everything had been completed and verified, Matteo left me alone.

The rhythm of those red drops falling from the bag into the tube leading to my body nearly hypnotized me. One drop. Two drops... one after another.

My gaze drifted to the sky beyond the window glass...

This is the same sky I see today, four years later, with the same firm conviction that I can overcome the latest test. Today as then.

During this time many things have changed, including my hips, which, because of the therapies, crumbled. After innumerable attempts to recover, they have just been replaced with pieces of titanium and ceramic.

However, the will with which I remain tenaciously attached to life has not changed. Births are celebrated with birthdays, and my re-birth, after the bone marrow transplant on May 17, 2011, is celebrated today.

Today, I share the joys of this meaningful day with... my brother to whom I will be eternally grateful for his gesture and generosity, my wife who has always stood at my side, my entire family, the doctors and nurses I have had the privilege of encountering, special friends who pick me up when I fall and those who follow me affectionately.

There is also a thought for the friends I have lost, and from whom I received a formidable lesson in dignity, and to all those who are still fighting against the disease.

Let's raise the glass and toast to life, so ephemeral and so very beautiful!

November 24

Italian

I  could barely stand on my feet. My wife was next to me, talking to the nurse at the reception desk of the Emergency Room.
He took a piece of paper and began to write the necessary information: first name, surname, birth date and year....

After the paperwork, I was assigned  a “green code” for  low degree of emergency, and I was told to enter the ward. They placed me on a bed and before leaving me alone, pulled a curtain around the area.

The wait seemed to be endless. I listened to the voices around me, signaling a continuous passage. There weren't many voices, so I was able to follow some of their conversations, talking about their work shifts for New Years Eve and day. It was November 24, and soon it would be Christmas.

Slowly my eyes closed and I began to sleep.

Somebody shook my shoulders to awaken me; the ceiling lights seemed blinding.

“We need to do a chest X-Ray” announced a nurse with a slight southern accent. That was the voice which had complained about receiving the worst shift for the holidays.

“I don't know if I can stand up” was my reply.
“Look, I'll get you a wheel chair” answered the nurse, pulling an old chair with plastic seat coverings next to the bed.
He helped me to climb into the chair and then began pushing it forward with a rapid pace.

We passed through empty corridors until reaching the Radiology ward. The nurse put me on one side of the hallway, in front of a closed door, and told me to wait, waving as he departed.

In that deserted corridor the only sound was the vague buzz of the neon lights. Straight lines on the pavement drew my sight far down the hall, to the most distant points. And against the walls, half way up, my eyes met the guard rails.

I wasn't exactly tired, but was strangely short of breath, panting.
Always. Short. Of breath. Shorter…

I tried to raise my eyes to the ceiling because it seemed that the light itself was weakening.
A dark blanket descended, while a myriad of brilliant stars began to dance in my eyes.

Right away I knew that I was fainting.

My seated position was not the best to avoid fainting; holding my head low was very important. Lay down, I told myself, even better with raised legs. I was afraid of falling on the floor, afraid of hitting my head or breaking a bone.

I lifted my feet and placed the heals on the guard rails.
Seated in the chair, at a lower level than the rails, my legs were effectively positioned higher than my body and I hoped that it was enough. Then I searched for ways to place my head lower, leaning backwards  along with my body.

With one hand I tried to pull the brake of the wheelchair, which was tending to slide backwards.  This way,  I tightly held the metal spokes of the wheels  and squeezed my hands shut to block the chair.  I remained like this,  motionless, for long minutes, with my teeth clenched from the effort.

Slowly, the obscure veil of darkness lifted, and clear images appeared in front of me.  There was the face of a doctor who had opened the door, staring with a surprised expression because of my odd position.  He said “Come on,  you can enter now. It's your turn.”

There have never been truer words.
It certainly was my turn.

The X-Ray showed a large inflammation on my left lung. I had a serious case of pneumonia.

A doctor tried to draw blood from an artery in my arm; it was painful as she made various maneuvers with her needle to locate the artery.
Since that day, the maneuver of digging inside me to withdraw something has been repeated… and repeated… just in different forms.

The results of that test were much worse than pneumonia.
My immune system was completely out of control.
Yes, I had a serious infection  in my lungs; above all, though, I had leukemia!

They said to my wife: “The situation is desperate and we don't know if he'll make it.”

Like the flight of an eagle... here's what has happened since then.

The pneumonia was cured, thanks to antibiotics and long days of “lung gymnastics” with a hateful breathing machine.
Then I passed to the most frightening illness.
First, there were cycles of chemotherapy, to prepare me for a bone marrow transplant, and a few days before the transplant I affronted radiotherapy.

My brother, with a magnificent gesture, saved my life with his bone marrow donation.

My illness, to my great good fortune, has not reappeared.

However, something happened. These therapies always have collateral effects, and in my case they provoked two Osteonecroses which literally grated the head of the femur in both my hips.

Two years after the transplant I began to walk with crutches.
The orthopedic doctors told me immediately that there was no alternative: I needed to  have a double hip replacement.

I would not give up and tried everything humanly possible: acupuncture, hyperbaric chamber, magnetic therapy, physiotherapy, manipulation, osteopathy…
After a year and a half there was some improvement, but not enough.

I've prepared myself to have the operation, which will take place in the days surrounding November 24, that fateful anniversary, four years later.
Still another time,  they are going to dig inside me to remove something which no longer functions.

Yes, I know that I don't have the right to demand that my experience as a patient finishes with this, or that I'll be guaranteed serenity for the rest of my life.

But I can no longer tolerate the idea of casually affronting new tests, in the name of the fact that I was strong once and overcame the worst.

If it can't be avoided, I will do it. Because it needs to be done.

–
At the end of a tunnel he feared he would never leave, the voyager headed down the open road.
Nature, which plummeted him with wind and rain, seemed now to be mild and beautiful. 

I can do it!

Italian

I was dragging my tired legs down along the corridor. Up and down.
My right hand was closed around the pole holding bags and bottles for the infusions.
That pole on wheels was my inseparable companion during the thousand passages from one set of windows to another, between Hematology and Oncology.

I observed the relatives who entered, deep in thought about their loved ones.
They walked quickly, and gave me just a glance as they breathlessly passed me with my mask, my legs, my thin arms, the pole, the hanging bags, and the pump functioning with a battery.

They walked around me, being careful not to make me trip and then proceeded down the tracks of their own thoughts.

I can still see them sit down with a gesture that is discreet yet lively, on the edge of a chair in the reception area.
There, they slip into shoe covers and put the face mask on, sometimes with difficulty.

There's a dose or two of disinfectant for their hands, then they stand and walk awkwardly, because of the shoe covers, towards the hospital patients' rooms.

With their knuckles, they give three light taps on the door, smile tentatively, and then disappear over the threshold, leaving me alone in the corridor, with my brief uncertain steps.

Then, while a clock on the wall counts the seconds, I repeat my stroll and return, before the pump sounds, blipping to tell me that its battery is expiring.

I missed my liberty!
I wanted to get out of there, but above all I wanted to once again decide what to do:
go to work, sit in traffic, receive phone calls from friends, joke...

I wanted to laugh, the way I laughed when life was a given and I didn't constantly think that it could slip away like a handful of salt.

I remember that sensation so well.
A long wait, suspended.
Like finding yourself in front of a traffic light and waiting for the green which never comes.

If I think about them now, I smile; but those months profoundly marked me.

When I finished my walks around, I stood next to the bed and with a final effort econnected the plug of the battery charger to the pump, to interrupt its insistent blip blip blip.
Then I laid my head on the pillow.
Closing my eyes, I kept repeating to myself: “I can do it. I can do it.”

These are the words which accompanied my dreams, and they still do so.
They remind me that every obstacle can be overcome, as long as I am patient and ready to fight when it's necessary.

I'll never stop being that thin wobbly figure in the hospital corridor, not even now that I've retaken my life.

Now, as then, I know that life can present difficult trials.
But now, as then, I know: I can do it!

The third year

Italian

And so, today is my third year anniversary.

Three years ago, while I observed, full of hope, a wonderful nurse hung a sack on a hospital trestle, next to many other sacks hanging top down.

There was an amazing amount of love and spirit of sacrifice inside that blood red package. It was my brother's bone marrow.

Three years ago, my leukemia was washed away with the most noble fluid which courses in a body, along with a deep cleansing by chemo and radio therapies.

Since then, to my great good fortune, this tremendous illness has not reappeared.
Many other things have happened though!

Comforted by those who had the same reaction before me, I have changed how I look at life.

I was able to meet people whose friendship is a particular source of pride and to whom my thoughts of profound gratitude are frequently directed.

I also had to learn how to manage the ignorance of those who misinterpret the story of a survivor, and see it as exhibitionism, instead of a way to help others when saying “I did it and so can you!”

I came to realize that those people are not able to even slightly understand the point to which a life can be turned upside down, from one day to another. Yesterday healthy, today destroyed, tomorrow... perhaps tomorrow will never be!

Those who make judgements from nothing should be avoided. They live in a bubble of blessed ignorance, and it would be better for them to continue their lives without knowing nothing of all of this.

Dear friends and acquaintances have been lost because of illnesses like mine. I've seen them affront and accept their destiny with a dignity that is impossible to describe. Now, while thinking of them, it is difficult to breathe because of the lump in my throat.

I have learned that escaping once might not be sufficient, and that a relapse is always a concrete risk. The night becomes very long indeed if one begins to think about things like that.

I've been struck in the face by the fact that every medicine, every therapy, in addition to the desired effects, always provokes undesired ones.  In my preceding “healthy” life of unawareness these rarely went beyond stomach acid or a sense of weakness.
But, the therapies I am referring to can create violent reactions on the skin, disfunctions of the circulatory system, can inhibit or alter taste, smell and hearing... And can destroy bones: I'm paying my tribute with my hips, one of which is seriously compromised since a year.

Thus, I've come into contact with a new condition, that of a crutches user. It's interesting to
note how these colored sticks can scare adults and make children curious... (and how often when I place them against a wall they immediately fall to the ground).

I've met a crowd of people who, for all sorts of reasons, are already in the water at 7:30 in the morning, to do their physiotherapy.

I've faced the cynicism of certain orthopedic doctors, who praise patients for the efforts made while concluding that sooner or later they'll have to operate.

I've understood that there is another way! We have to search for it alone, though,  because it is helpful for only a few.

Then, there is the hyperbaric chamber, with its many fans and detractors.
“It's completely useless.”
“It can be miraculous.”
“It can't hurt you, so why don't you try? Then, we'll see...”
My experience has been that the progress is very evident.  I need much more, however,
and don't know if I can obtain it with this.

These three years haven't been easy.
The comments like “think how much you've overcome; this part is nothing” by now have completely filled my head until they exit from my ears.
As if, for a survivor of an airplane crash, alive by a miracle,  it was enough to have escaped death. Would he be content to remain tied to a wheelchair for the rest of his life?

I've cut my safety belts. Along with some of those fortunate ones such as me, we've left the site of the tragedy and returned to our homes. I am living my life hoping for the best possible quality, without constantly thinking that, for a hair, I am not in hyperspace.

I owe this to my family and myself.

Now, a thought, full of emotion, to the fine souls who are watching me... to those who struggle and find themselves at the half-way point... to the professionals and to the people whose humanity makes this possible...

Raise the glass: three years of Life 2.0!

Hearts of water

Italian

The car lurched to a halt at the traffic light. Marco's mother was concentrated on finding the switch for the rear window windshield wiper.

The rain was coming down in driving sheets of water, while the brushes on the front made the car sway with their every swipe back and forth.

In the back seat, Marco, wrapped in his warm jacket, watched his mother's movements with a certain amusement. It was impossible for her to find that switch!

“Mom, try to turn that lever on the right of the steering wheel” he finally suggested. Marco
was only 12 years old, but he was sharp and awake.

“Found it!” his mother finally exclaimed.

Marco turned his gaze towards the window where drops of rainwater slid like a bobsled
down a ski slope. He enjoyed observing the distorted images of the world, as seen through those bubbles of water.

Suddenly another car stopped in the next lane.

The woman driving seemed intent on explaining something complicated, and as she did so, she continued to stare at the red traffic light in front of her.

The window was foggy with water, but he could see the face of a young girl in the back seat. She looked bored and with her finger was outlining a flower on the steam inside back window.

When the girl's gaze met Marco's, a small smile broke out her face. She had green eyes and light colored hair gathered in a braid.

Marco felt a jolt of surprise when he realized a moment later that she was still staring at him.

Feeling slightly embarrassed, he smiled back and, trying to appear nonchalant, waved timidly at the girl. She stopped tracing the incomplete flower on the window and waved back at him. Then, in an unmarked part of the window, she began to trace a new line with her finger.

It wasn't a design; instead it seemed to be letters of the alphabet. They were strange, though, and hesitant. Marco realized that she was trying to write from right to left, like in a mirror's reflection, so that he could read it on the other side of the window.

“Lara”. It was her name: Lara.

Marco shook his head and breathed on his window to make it foggy and wrote “Marco” with trembling letters.

He didn't quite realize that he'd used his left hand to write backwards, even though he wasn't left handed.

Lara smiled again, less shyly and Marco exchanged the glance, raising his eyebrows.

Lara's finger moved to a still foggy part of the window and began to draw a curve...
maybe a half moon... no, there was a narrow point at the bottom... a heart.
It was definitely a heart.

Marco felt a flash of warmth in his chest and his mouth dropped open in total disbelief.

Lara laughed and pointed her damp finger in the direction of Marco's nose.

He forced himself to recover from his emotions and, still using his left hand, drew the most beautiful heart ever on his own window. It was precise and well-proportioned, rounded and symmetrical.

Lara half closed her eyes and and bend her head sideways. To Marco, that gesture was endlessly beautiful. There was a silent tranquility everywhere and it seemed that even the rain did not want to disturb them.

Marco felt only the warmth that emanated from  his heart  rose to  his throat, until it
flooded into his cheeks and ears...

There was a murmur and the two cars began to move at the same time. Lara's turned,
driving away. Marco only had time to see  the girl's head, which turned, attempting in vain to have one last look, and then losing contact forever.

He turned to the heart he had drawn on the window. A few drops of humidity were flowing down, like tears...

He wasn't sad though. Marco was glad to have felt that intense new sensation.

“Mom” he asked, “What is love?”

The tree

Italian

A tree looks dark in the backlighting. By chance, the image passes in front of me.
I stop and look again, observing...

A robust trunk, pending, seems to struggle while supporting its branches, which are first heavy, then light and thin. A tight web of nerves, like little streams of indian ink, escaping...

There are no leaves; it must be Winter. On the surface, great knots of roots wind around, serpent-like, before disappearing into the ground, which they so tenaciously grasp.

Gusts of wind design waves on the sea of exhausted grasses surrounding the motionless tree.

Sunset shows on the blue sky. Further ahead, where it is already evening, the first stars are rising.

A whitish line of clouds  intersects the pattern of the branches, like an old badly healed wound.

The horizon is clear and seems that it's trying to slice the trunk, which is pushed by the wind always to the same side.

This tree stands out in the smallness of the elements... the only subject without color, but alive, in a cold and hostile world moving towards darkness.

The tree resists and holds the weight of every branch, gradually thicker and stronger,
until the bent trunk which refuses to break.

It will last still another night, patiently and mutely waiting for the arrival of dawn, and later the Spring, when life awakens and Creation once more finds peace with God.