To the father by Zuzana Smatanová

Just like birds in a cage lack flight

You know from afar that your palm is mine

When the trees are joined by their branches, you go back

I will come closer to you like a shy doe

You will go home with me through the thick, black darkness

Come and walk with me in my thoughts

Let a flock of birds be above our heads

I know from a distance that you will be carried away

And you won't slow down even when you're tired

You will come home to me in a light, white mist

Time was reflected in the crowns of your apple trees

The embrace of a mother's fragile arms is our only home

A safe haven, a sunny room in the attic

Pathway to yards, plowed fields,

Bread that does not change in taste

I'm looking for you there, you breathe through it all

Your voice still sounds through the garden

I know, it's been a long time, I still miss you

And so it will remain forever

This song by Zuzka Smatanova reminds me of the house that my parents built on the edge of a small village in a quiet environment, surrounded only by forests and meadows. They planted apple trees, gradually worked on it and planned a life of retirement in it, retirement of my father was supposed to start in January 2021 after 30 years of service in the state administration.

We went for a walk together up the hill, through the forest, across the meadows and fields. For the last few months, my father could not even walk up a hill, which we all attributed to cancer - a brain tumor diagnosed in early December 2020 after excruciating and unrelenting migraines and confusion. He forgot that he had promised to stay with me for a few days, when I reminded him, he claimed that he therefore had a reported vacation, but he didn't, he got lost on his daily route and was late for work, which never happened to him, he didn't turn right to the place where we was going for 30 years...

From the very beginning, the operation was preceded by various health complications, and even the operation could not remove the entire tumor. Just before Christmas, he was released after a month from the hospital, where we were forbidden to visit due to the pandemic. Although I spent two hours a day on the phone with him because he was bored and sad, the feeling of helplessness grew at an enormous speed.

He entered the new year like a fighter and started honestly with the proposed treatment. During radiotherapy in Nitra, several patients in the oncology department got covid and my father was one of them. He was angry, but I reassured him that he is under control in the hospital and thus, even with weakened immunity, he has a better chance of an easy course than at home.

After radiotherapy, he warmed up and prepared the space in the attic for living, despite the fact that we told him that he had time and that he should conserve his energy. To that, he always told me that he wanted mom not to be cold downstairs when she was sitting in the chair and the cold was coming down the stairs from the attic.

In June, he was informed that the tumor was growing slowly and the second surgery was scheduled for mid-August. He often told me at the end of May and June that he felt weak, and the doctors attributed it to the later onset of the consequences of the radiation, but the complications began to pile up. At the beginning of July, it started to get worse for him to swallow, and food and drink as well as saliva started running into his airways. Choking and coughing after every bite, he refused to eat or drink and lost 20 kg in two weeks. We have repeatedly heard that it can be caused by the tumor, or that it is the result of radiation. No one uttered the two words that would have helped us find the clues to the correct and even more terrifying diagnosis, which was bulbar palsy, an outbreak of Amyotrophic Lateral Sclerosis.

He was repeatedly hospitalized before the second operation and had various tests, a PEG was inserted to allow him to receive food and fluids because he had become weak and could no longer walk. I went through his discharge reports several times and there was no mention of suspected ALS or bulbar palsy, it had no name and no solution and we saw him suffer, we couldn't help him. This strong two-meter guy, an athlete, tried to take care of himself as much as possible despite the limitations of his own body, he tried to walk on crutches by himself, but by the end of July we were all making a support shield for him to walk the few meters and it was sad to see his fear and while walking slowly heard him say softly "God, oh, God..." because he felt weak that he would fall at any moment.

While he was in the hospital in July, we painted the sunny attic. He was looking forward to seeing it there, and even though in the hospital he could no longer walk a distance without a wheelchair, he used all his strength to go to the attic to look at it one last time. None of us knew it was the last time. I naively wanted to believe the doctors that by removing the tumor, his condition would gradually improve. The tumor also caused him double vision, and when I saw him before the second surgery, I couldn't hold back the tears all weekend. When he saw my shock and tears, he just whispered, "Don't cry."

Mom was trying to "function normally", so we ate as a family together as always, and when Dad couldn't eat, I couldn't even eat a bite. He pointed to the tuna salad, which I have disliked since childhood, to offer myself. I wanted to make light of it, I smiled and said that we never really needed that one anyway, but he licked his lips to indicate that if he could, he would. He was so hungry and thirsty. He hadn't had anything in his mouth for a month and I asked him if he couldn't at least put a bite in his mouth, chew it and spit it out so he could at least smell and taste it. He shook his head no. At that time he could not even speak. He gestured or wrote the answer on an erasable board. I said that I believe that he will gradually get better and he wrote on the board: You mean after the operation? And I said yes.

After the second operation, he felt well, but his condition began to deteriorate again. Due to the fact that his lungs were clogged with mucus, which saliva was running into his airways for a whole month, and during the hospitalization in Banská Bystrica no one thought to start cleaning those lungs as they started to do in Zvolen, pneumonia broke out in him.

All the time I was preparing for the fact that he would come home after the second operation and I would take care of him while my mother and sister will be at work. We still believed he would make it, and I overcame my fears, which subconsciously prevented me from getting the medical and personal care he would need at home. I have no experience in nursing, but I was determined to go all out, as fully as he had to fight his health problems.

It is still unbelievable to me that he is no longer here. It's only been two weeks since we were arranging all the necessary things for him to come home. But a much more insidious disease was hiding behind his tumor, which was slowly taking him from us, and no one, except the neurologist at the Zvolen hospital, noticed what was really happening to him. Seeing him get tired of sitting, how he can't get up, how he's gasping for breath, because the paralysis prevented him from talking, eating and drinking since July... The strong, huge guy was totally devoted to us at that time.

I know that with the verdict that it is the terminal stage of all three forms of ALS - bulbar paralysis and paralysis of the lower and upper limbs - the last shred of hope died in me, because there is no cure for this disease. We learned about the diagnosis at the end of August, just a few hours before he almost suffocated in the hospital and "five minutes past twelve" they had to insert a tracheostomy. However, his lungs were already inflamed and full of mucus, because no doctor had dealt with it since the beginning of July, so they stopped working and he had to be connected to pulmonary ventilation.

It was only at that time that I started looking for all the available information about this disease and desperately tried to find out whether the term "terminal stage" actually had a slightly different meaning than it was clear to me...

I can't imagine how he must have felt when he woke up connected to several tubes, pipes and a ventilator. This disease takes everything from you except a fully conscious mind. You are trapped in your body, listening to the unbearable monotonous beeping of all the devices, seeing only the ceiling, hearing the grunts of other patients in serious condition...

The conditions during the covid pandemic wanted to forbid us even those last moments with him, but only thanks to the amazing staff at Anesthesiology-resuscitation department in Zvolen we were able to visit him and spend at least a few of those eternal daily lonely hours with him. The last thing we understood from him was: "I want to leave already" (he shaked his head no when I asked if he wanted to go home) and "I miss Olívia" - my niece, who the day before told me how much she missed grandpa already and looking forward to playing with him again. Yes, it's heartbreaking.

He fought so hard that his lungs gave out and he didn't need ventilator for several days. Again, we hoped that some things would stabilize and that he would be able to overcome this to continue being with us. But if he managed it, he would have to live in a facility where he would be connected to pulmonary ventilation and machines and this would become his daily reality until his body gave up and I read about patients who survive this way for several years. It was the scariest prognosis, especially when I felt in their skin... Such patients, if they manage, can only communicate with the help of a tablet that detects the movement of their pupils. But my father had double vision due to the tumor. ALS patients on devices in facilities are lonely most of the time, they are confused day and night, they suffer from insomnia, psychological problems, bedsores and other difficulties that this kind of "life" brings with it. Therefore, some patients with this diagnosis choose the option of assisted suicide abroad.

But one night I woke up to the fact that I couldn't breathe and my mouth, throat and lungs were full of mucus that I couldn't cough up. I was suffocating, gasping for breath, trying to cough, but I couldn't. My husband got up and wanted to help me, my dog ​​laid his head on my knee, and when I finally lay down, absolutely exhausted and breathing hard, my lungs hurt terribly, my husband held me in his arms, the dog curled up on the bed at my feet and I knew that something had happened to my father. The next day I learned that they had to put him back on ventilator at night. Since then he has not responded to us and I knew that if he continued to fight, what would await him would be hell on earth.

Until that fateful Sunday when we were told the diagnosis, ALS seemed impossibly far away. In Europe, it affects three to five people out of 100.000 every year. I knew that Stephen Hawking suffered from it, but he is an exception to a long life in the fight against this insidious disease. Most cases have a chance of 2 to 4 years of life from its onset. In my father's case, it was only two and a half months from the outbreak to his death. Sometimes this disease is hidden behind problems with the spine, and that's why I think that three years ago, when my father had difficulty moving and had a spine operation, ALS was hidden behind it. But I can only imagine that, because among the negative prognostic factors with a significant shortening of life is precisely the beginning in the bulbar part, as it started (among other symptoms) with my father.

I remember the ice bucket challenge videos that people all over the world poured on themselves, but I didn't remember that it was about ALS awareness. Today, I would like to pour one such ice bucket on my head, because the memories of his last two months of life deeply traumatized me and I will never forget them.

In September, the apple trees were full of red and juicy apples. And dad won't be hauling weeds in the garden with a wheelbarrow, nor will he bring a cold beer from the garage, nor will he prepare a fire for goulash. I am very sorry that I did not go with him to the sunrise that he called me to in June. In the last days, all that remained for me was that I could hold his palm firmly in mine, squeeze and caress that huge hand and bring it closer to my cheeks...

Everything that happened until now is gone. The sad is forgotten and the beautiful remains in memories. That's why I tore out a few pages from my diary. Old thoughts and spoken or unspoken words have been blown away by the wind. Ever since dad left, I feel like I'm a completely different person. That everything that happened before and maybe was once important to me is no more, and it's time to step in a completely new direction. He will no longer accompany me on this journey, but I believe that one day we will tell each other about these new adventures.