Chapter one

CHAPTER 1

I enjoy coming to the park at night, it's a place where I can relax, think freely without having someone around to bother me for staring at nothing, lost in my thoughts. I like to contemplate the night sky full of stars, the beautiful moon shining brightly and just stop to think, will I always live like this for the next few years of my life?

I was diagnosed with Cystic Fibrosis when I was months old, I am now 19 years old.

This disease causes my body to generate excessive mucus, causing problems in my lungs, pancreas and other organs. There is no cure, but there is a treatment. There is also the possibility of a lung transplant, I have been on the waiting list for years, although if you ask me my hopes of having new lungs have gone down a cliff. I don't care anymore, I guess I have entered the acceptance phase, where if they talk to me about my life expectancy and confess that I only have a few months left I might sigh with relief, a break from all this what you call "life" wouldn't hurt.

I may sound pessimistic, but I like to call it realism. Many people come daily with the best words of encouragement anyone could hear, before those words brought me hope, now? Frustration, disappointment, annoyance and sadness.

I feel the pressure on my shoulders as if it were my duty to stay alive when the disease gradually degenerates without being able to do anything about it other than follow the treatment to the letter and wait patiently for it to work, and in many cases not even a strictly regimented treatment can ever work.

My diagnosis was not very encouraging, the doctors stated that it was statistically impossible for me to survive but here I am, living, or rather, surviving. Every morning when I wake up it could be my last day and the daily thought of that as soon as my eyes open is totally depressing.

The only thing that keeps me sane and brings me back to reality is my deep and infinite passion for art.

It is what I love to do most in this world, art elevates the spirit to a different plane where we belong, full of emotion and tranquility only for those who really know how to appreciate art from a different perspective, not with the simple superficial view; with the eyes of the soul. Those eyes with which we can delve much deeper.

We all have a switch that activates, motivates and inspires us. For some it may be music, for others dance, for others sports. But for me it has always been art.

It is amazing every discovery that is made when painting on a canvas, each brushstroke is a new possibility to go deeper into our inner self, connect with oneself and thus be able to externalize that which is kept in the depths of our heart, because that is what art is all about, express through painting those emotions that for one reason or another we can not speak them.

An icy breeze makes my bones shiver, and that's when I come out of my thoughts to continue my night walk. I see the time on my cell phone.

11:00PM.

I'm sure mom will be worried, and as if I had summoned her an incoming call from her lights up my cell phone screen, I slide my finger to answer and put the phone to my ear to talk to her.

“Allie, where have you been? It's eleven o'clock at night! Do you know how dangerous it is out there at this hour, come back this instant!”

“Mom, take it easy. I'm fine, I was just leaving. Don't worry, I'll be there in ten minutes. I'll be there in 10 minutes,” I say calmly.

She sighs with relief and when she speaks again her voice sounds calmer.

“Well, honey. I'll wait for you at home, you have your dinner in the microwave, I made you pancakes with honey”

I smile. She knows they are my favorite food and she always makes them to surprise me. She is the sweetest woman in the world.

“Thank you mom, I love you. I'll see you.”

“And I love you, honey.”

I hang up the call and put my cell phone in one of the back pockets of my jeans and start walking back home with slow steps, while kicking a pebble I found on the way.

As I had predicted, in exactly 10 minutes I arrive home and open the door to the main room, close it behind me, walk into the kitchen and see mom washing the dirty dishes from dinner, I walk up behind her and surprise her with a hug. She gives a gasp but as she turns around her soothing eyes greet me and envelops me in another hug.

She turns on her heel to look at me.

“Where were you,” she asks as she dries her hands with a kitchen towel, “I was so worried about you, young lady. You can't be out so late, you know it's not good for you”

I know what you mean. The low temperatures in the city cause serious damage to my lungs, a person with CF can't be exposed to the cold for long periods of time, as there is a high risk of getting an infection. I have heard about it thousands of times, however I am not so irresponsible, when I go out at night I go prepared with wool gloves, a hat and of course a winter jacket. It's not quite winter yet, but we are on the verge, so the temperatures have dropped considerably.

I press my lips together and sigh. She's right.

“I know, Mom. I'm sorry,” I admit sincerely, “it's just that you know how much I love walking in the evenings and going to the park,” I add with my head down.

“Honey... come here.”

She extends her arms on both sides and I don't hesitate to hug her. Mom's hugs have always been the most soothing hugs in the world.

It is so painful to lead a life like this. In the hospital I have seen so many patients who keep a smile on their faces and positivity through the roof, why can't I be like this?

Mom lets go of me and looks at me with a half smile.

“Eat now, they're delicious, the dinner I made you, of course, because I made them,” she boasts.

I let out a snort of amusement.

“Mine are better”

A laugh escapes his lips and I join in his laughter.

“Dreaming is free, honey”

I roll my eyes and shake my head still smiling.

These are the moments I cherish the most, laughing with Mom makes me always forget I'm sick. I feel for a few short seconds like a normal person with a normal life.

For as long as I can remember it has always been mom and me. Dad abandoned us when they discovered my illness, he ran away like a coward, I guess he felt too much pressure to stay with us and be of great support and made the best decision for his convenience, he thought only of himself, he decided from his selfishness and did not care about leaving us to our fate, so if he ever wants to contact mom or me I will not even want to listen to him. I have nothing to talk to that man about.

Mom suffered for years alone, but she would put on her best face for me, so that I would not notice her suffering, still I am not a fool, of course I noticed how much she suffered but she had no opinion about it. If she wanted to talk to me about it, she would have already done so.

And that's why I love her so much, and I owe her my whole life. She graduated with a degree in business administration and when I was born she dedicated herself to taking care of me and working. She got an important position in a well-known company but she didn't want to leave me in a hospital, so she presented our situation to her superiors and they gave her permission to work from home.

His life changed radically when I was born, from the age of 5 until his 23 years (age when I was born) he used to be in a dance academy. She gave up everything she loved and was passionate about to take care of me and to tell you the truth, that makes me feel guilty. This woman has sacrificed everything for me, and if necessary she would give her life to make me well.

I smile a sincere smile.

“Well, Mom. I'm starving”

She laughs.

“I'll go take a shower, it's been a long day,” she kisses my hair and walks out the kitchen door.

I sit on the stool while I devour my dinner, wash my plate and head to my room with heavy eyelids. I haven't slept well for days, and I need to get a long restful sleep.

I climb the stairs to the second floor and enter my room, before going to bed I go to the bathroom, brush my teeth, my hair, get dressed in something more comfortable and without a second thought I jump into bed.

I am very tired, the lack of oxygenation in my lungs makes me feel as if I have no energy. Thanks to oxygen therapy I can breathe better, it is a treatment in which additional oxygen is administered to treat its deficiency and prevent the mucus in the nose from drying out, and although it is very helpful I would love not to have it. Carrying this weight all day plus the cannulas is something I do every day and I have gotten used to it, but it is still tedious not being able to move around as much as I would like.

I toss and turn in bed looking for a comfortable position, when I finally find it I close my eyes and the last thought that crosses my mind before falling asleep is only one, and it is the one that has remained during all these years.

I don't want to die, not yet. Please...