MY STORY WITH LADY MYASTHENIA - Juan Buendia
Juan Buendia Avila
In this memoir I try to tell one of the most important experiences of my life. I try to remember the feelings and emotions that I felt at each moment.
The story begins in Easter, 2004 and ends on May 26, 2008.
Juan Buendia Avila
II Edition – January, 2014
It began in the Easter, 2004. I was in the vegetable garden of my aunt Pilar and my uncle Jose in Caravaca de la Cruz. My cousins Mari Carmen and Manolo with their daughter Silvia were also there, as well as my wife, Eli. And it was precisely she who, one of the afternoons under the shade of some vines, told me that I should go see the doctor. She noticed that my eyelids drooped down.
At that moment, we were not aware of what the drooping eyelids would mean, but now I know: it was how Lady Myasthenia introduced herself.
When we came home, I went to visit my doctor; however, she was on vacation, so I was seen by her substitute who immediately observed something strange. She sent me to the Emergency Department at the Hospital of Fuenlabarada, where I was seen by an ophthalmologist. After examining me and consulting a colleague, she gave me the following diagnosis: nothing was detected and I should return in two months with photographs. Of course, I was not very pleased with the diagnosis, so I returned to my doctor. She advised me to go immediately to the Emergency Department at the Doce de Octubre.
A very young ophthalmologist examined me and told me that he believed that I could have a disease known as Ocular Myasthenia. However, he wanted to consult a neurologist who, finally, confirmed the illness.
As of, approximately, September 30, 2004 the neurologist Eduardo Gutierrez-Rivas began to treat my disease.
Maybe I don’t remember too accurately, but my situation –as far as I remember– was more or less stable until May 14, 2005. However, I did have the normal fears of someone suffering of an illness that I had never heard of, nor had anyone else close to me. I was afraid of not knowing how my body would react. That 14th of May is probably the most frightful day I will remember for the rest of my life. On that day, we were going to see my brother in law, Rafa. He was going to introduce us to Mari, his current girlfriend, and I hope her final one. I have personally seen his happiness and peacefulness increase day by day.
We were going to meet in a cafe in Mostoles. Fortunately, when we were about to go in, we came across a couple that I was very happy to see: my nephews, Fenando and Veronica.
What I am about to try to explain is something with which I don’t seek any morbid fascination, nor do I mean to cause any sorrow to whoever may read it. I just think it is something very important for me, and I need to remember it as accurately as possible. Let’s see if I can.
To understand how I felt, I must explain that, among my many defects, I believe that I am unable to be with someone and not talk. Because I am a very nervous person, I end up disrespecting other people by constantly interrupting them while they are still talking. I think that there must be worse things, and I hope that those who know me will be able to forgive me for this.
It was around two o’clock in the afternoon (a really common bullfighting time), and like I was saying, we were having a beer, well I was actually drinking a Coke or some other soft drink, when I suddenly, and little by little, started having a strange feeling. It was as if I could not manage my tongue. The others were talking, and I think that they were not aware at that moment of the anguish I was beginning to suffer. As best as I could, in order to not alarm anyone, I spoke as little as possible, and I made affirming or denying gestures. For me it was easy because I’m a joker, and sometimes people can’t tell if I’m kidding or not. The thing is that, as best as I could, I managed to save the situation. Then we went to Fuenlabrada with Fernan and Vero to have the last one, as it is usually said. Eli and I went separately because we had both cars.
We were going to the Gambrinus, a cafe. As I was driving, an intense fear was taking over me. Because I didn’t know what was happening, and because I didn’t want to worry anyone, I thought I wasn’t going to make it. My nephews were already there. Eli, luckily, still had not arrived. I was afraid of frightening her. Unfortunately, I could not avoid scaring Fernan and Vero. I came in hurriedly and told them, "I have to go to the hospital. But please tell your aunt that they have called me, and that I have had to go see my mother.” She was hospitalized at that time. All this happened in a minute, more or less.
During the time it took me to reach the Doce de Octubre, my anguish was increasing. In addition, I had the growing feeling that I could not control my tongue and, at the same time, that it was harder for me to swallow. I figure that the symptoms had started more than an hour ago. When I reached the reception, we can say that they didn’t understand me. I didn’t even understand myself. It was around 3:30 p.m. by then. I explained that I suffered Myasthenia. They told me to wait a while, and they directed me to the waiting room. A while turned out to be four hours. I had had to wait for so long that by the time I was called in, the symptoms had already stopped.
At the beginning of the week and without prior appointment, I went to see the neurologist to tell him what had happened. The truth is that I saw he was worried, and he immediately wanted me to be injected with IMMUNOGLOBULINS. However, when he sent me to the corresponding department, I was given appointment for a week later. Due to what later happened to me on the 2nd of June, Eduardo felt guilty for not having hospitalized me then. Until June 2, which I believe will be a day I will never forget, two weeks elapsed without a clear memory of what accurately happened.
During those days, I was very scared and nervous. Unaware of what could happen to me, I was waiting for the day to start the treatment. What I can remember is that I felt worse day by day. It was difficult for me to breathe. While seated I could not sit forward because it was hard for me to inhale. Sometimes, Eli would have to feed me (I had to have my head back; I could not lower it to eat). I can’t really remember if my arms began to fail at some point.
In those days, I remember that we had bought a present for our friend Antonio who, knowing that I wasn’t feeling well, came over to see me one afternoon. He knew I was ill, and I’m sure he left feeling very worried about the situation he saw me in. I could not sleep at night, but I could not even lie down. Eli started telling me that we should go to the hospital, but I kept saying no, but for no other reason than because I believed that I would start feeling better soon. But like I said, I was getting worse day by day.
The first two hours of the 2nd of June arrived, and I finally understood I could not wait any longer. Eli called my neighbor and friend, Pedro. I don’t even want to remember what I made them go through. They talked between themselves, and they didn’t even ask me. I think that due to the situation they saw me in, they were scared. It took them about twenty minutes to get there, but it seemed like twenty hours to me. As soon as I walked in, they sat me in a wheelchair and pushed me into a large room. Fear again. It was full of beds with patients, and my thoughts were that I was going to die there, that I couldn’t hold on any longer. But I was relieved when we went by, into a private room. They shot me in the artery. They told me it would hurt, but I could handle the pain. The hard thing is when they tell you that they missed it. By then, I was agonizing. They wanted to put me oxygen mask, but they couldn’t. I didn’t let them because I wouldn’t stop tossing and turning. My last memory was seeing infinity of green coats. They held me down as they could in a bed on the way to the ICU. I urinated; they cut the underwear; I was gone…
What happened at the hospital, probably took less than five minutes.
It was Saturday -day 4- when I woke up. It was a gentle awakening. I wasn’t scared. I had walked into the hospital myself, and I was in a bed in the ICU, surrounded by all kinds of machines, full of wires, catheters. I could’t speak. It’s hard when you’re tubed. I couldn’t turn my head; I had no strength.
Doctors and nurses everywhere; I was in the Multi-trauma ICU of the Doce de Octubre. To me it seemed huge but, of course, it was the only one I knew. Eli and my niece Susana appeared. In such moments, let’s say, feelings of great relief flutter inside you. They hold your hand, they speak sweetly to you, they look at you with tenderness. I guess it’s just what is needed at that time. But, how do those looking at you feel?
Later I knew that they had been visiting me since the very first morning, but it seems that I wasn’t really aware of them. I was on a journey.
I’m not sure if it was that same day or some days later when one of the professionals whom I remember most dearly, thanks to his human and professional treatment, had the idea of bringing me an alphabet. It’s really distressing to try to communicate without being able to. In order to not forget this nurse, among many other details, I remember that the catheter for the urine had caused me a wound on the very tip of my penis, and he cured it with exceptional care. He would apply ointments with his fingertips while gently blowing, and I felt great relief. For me this was an exquisite care, because other female nurses seemed to me to just throw the ointment, as if they avoided healing that area. This nurse was called Eduardo and, luckily for me, I saw him during a recent check-up.
The situation I was in made me be very sensible. I remember that during one of the first vists, I told Eli and Veronica that I did’t want two people to come in to see me. Fortunately, with one of them the situation is back to normal but, unfortunately, with the other person it seems that things will never get settled.
One of the things I am most glad of, if I have not been deceived, is that Eli didn’t feel alone, and it seems to be true. I remember that many times she would have to throw people out to let others come in. I know it’s bothersome to go see someone and not be allowed to see that person. Besides the fact that everyone who came to see me were loved ones, I also respect people who cannot come to see you for apprehension or for fear of the situation. It was very difficult for my brother to come to visit me, but I am very happy for every single time I saw him. Unfortunately, at present we are not very close, but I’ll never stop loving him.
Among the people I missed were my uncles, for fully justified reasons: my aunt had undergone hip surgery recently and my uncle who, I believe, had been informed from the very first moment, was probably having a hard time. Not only do I know that he was very worried about me, but he had to hide it from my aunt for at least two weeks.
I’m almost glad -no, for certain- that my uncles couldn’t come to be with me. I don’t even want to imagine my aunt seeing me at the ICU nor my uncle, who is a very discreet man and little expressive, but which doesn’t mean that he has no feelings.
Well, let’s go back. I’m going to try to write some things I don’t think I will forget. Maybe I’m exaggerating, but I remember that I spent nine days without sleeping. One of the first nights was desperating. The movement in this ICU is quite important, there are many patients without fixed arrival time, the sound of helicopters during the day and during the night, etc. One of these first nights, I remember that the nurses were very young girls. Each nurse is assigned to certain patients, so when the machine of a certain patient started to beep, they would say, “It’s mine,” and the others would not worry. Well, I don’t know if they were having a birthday celebration or what, but they were in such a hustle all night that I couldn’t wait for the change of shift. They seemed quite efficient, but I think that in the ICU silence should prevail.
I’m going to jump to the following night. I liked them better, but they fell asleep during their shift and they were less attentive to patients. From the very first moment I became aware of certain people whom I had considered parasites before being in the ICU: the hospital attendants (I beg their pardon). You have to be there to see what they do. They are probably the least valued people, but they come as soon as they are called to carry the sick and to change their position in bed. There are very heavy patients who cannot handle their body. If you are not in that situation, you cannot value what they do. When I later talked with some of them, I learned that very often when they reach a certain age, they have to be operated of herniated discs. I remember that while you are being washed, many are the times that they are holding you while you are relieving yourself. I don’t think it’s very pleasing, but I know it’s their job, and when you are in that situation and you encounter such professionals, it is easier, so much easier.
Since I couldn’t sleep, I was all worn-out in the morning. And every morning they would wash us. What a pain! Everything bothers you: that they move you from one side to the other, a tube being pulled, being naked. It’s as if they ignored you, but they are doing their job. And when they are done, it’s such a relief! It seems that you have recovered and you feel like getting up and all. I think I wasn’t able to see the bed next to mine until after a week. I had no strength to turn my head. Then, you constantly look at the clock… I wish it were one o’clock! It’s the best time, time for visitors; and then seven o’clock. Those are the most important hours of your life.
I remember that the worse moments were when they had to clean my mucus, and that was like ten or more times a day. The process takes -I figure- five seconds, but it seems a lifetime. They take out the tube from your mouth, they insert, let’s say, a straw of about 30 centimeters, and they suck the mucus. I desire that experience to no one. But if any of you reading this must, unfortunately, be faced with it, then don’t be afraid. You will see that you can survive through it. The tubing caused me a daily growing pain in the chest that was so terrible that it forced me to plead for a sedative at least for the night. I would always get the same reply, “Juan, in your case it cannot be administered.” It could worsen the pain, so I tried to relax and to think that maybe the following day I would be more lucky.
I think it was Thurday 9th. As usual, I tried to get the sedative, and I think that that night was worse than others. From the afternoon till early morning there was a lot of commotion in the ICU. I asked doctor Chicote. Many days had gone by, and he finally bowed to my request, which I highly appreciated deep inside. I don’t know what they gave me, but I had a feeling of levitating. It’s as if I were out of my body. I was relaxed, observing, but I couldn’t close my eyes. I don’t know how to explain it well: though I was more relaxed, I was also more tired.
One of those mornings, after the change of shift, the doctors walked through the room taking a general look at all the beds. The names of the doctors I most remember for some reason are Susana, Dario and Chicote.
Susana, I remember, was the eldest. She had long blond hair. I think she was in charge of the area. At first I saw her as a cold person; she barely talked to me. When I later needed her, she treated me with great tenderness.
Chicote -how can I explain it- seemed to me very active, dry and a little cocky. I had a little brush wih him once, but I think he is a great professional. Maybe I saw him cocky because I was feeling like shit.
Dario -damn it, I felt I had been so unfair when I learned his name!- seemed to me uncommunicative, maybe a little shy, but observant. He seemed attentive to his work, and for whatever reason, I disliked him. I remember that I was only able to talk by means of the alphabet, and that the nurses were bored of so much talking with me, so the rest of the day I had nothing better to do than to set my mind wondering. It’s amazing how many silly and unfair things we can think up about people that we don’t even know. That day I decided to ask who had saved my life. What a silly question. Maybe five days had already gone by, and the question occurred to me that day. They told me it was doctor Dario, so I asked them who he was, and I was told it was the man in front of me. Damn, it was the guy I disliked! As soon as they told me, I stared at him, and he looked back at me. I gestured him with my finger to come. He came over very politely and quickly. I asked for the blackboard, and it was the first time I was addressing him. I wrote, “Thank you for saving my life.” He took my hand, and he told me that it was his job. I replied yes, but that it was my life. No need to say that from that day on I saw him as the greatest. Of course, I don’t forget that in that critical moment he counted with a team, and I can’t remember every single person, but I am thankful to all of them. After I left the hospital, I went back to the ICU to thank him standing on my feet. I doubt I’ll ever forget his name.
I don’t want to mention many names in order to not be unfair because I would probably forget more than one. Among the people I don’t name there’s the hospital attendants that I mentioned earlier, and the nurses, who made me feel really cared for. Whether they were my nurses or not, whenever I called them, they would come by my side. I remember the cleaning ladies, especially when they walked by my bed, which was the last one, in a corner. They looked at me with such tenderness that it gave me joy. I know they were probably thinking, “Poor guy!” But I value more the look they gave me. I also had a physical therapist a few days. I remember her because she was very nice, and she helped me with my breathing excercises. I previously mentioned Eduardo, but I also wish to name another nurse.
Ana was so attentive to me that -how should I say it- it bothered me to call her. As soon as she saw me moving in bed, she’d say, “Juan, let me call the attendants.” Since I didn’t want to bother them, I always waited until last hour, around eleven or twelve, I guess. Ana was with me two or three nights but I remember her dearly, like Eduardo. One night, a new nursing attendant stood in front of my bed. I don’t remember her saying hello. I was intubated but I was still a person, and I interpreted, “Wow this guy! He needs too many things! We’ll see...” Or something like that. Of course, I wanted her to be the one in bed, in my situation. I got scared. I though, “She’ll administer everything at once to be able to rest.” But I was lucky. Ana was around working, I followed her with my eyes until she looked at me, and I gestured her to come. She saw I was nervous and asked me, “What’s the matter, Juan?” I told her. In a soft voice, very kindly, touching me and next to me she said, “Juan, don’t worry. I’m the only one who will give you medicines.” What a relief. The nurse’s aids prepare the medicine. The nurses administer them. What a coinsidence! The following morning I needed an enema. It was too many days without relieving myself. Who was the person who held my butt, introduced the enema and massaged by buttocks until what had been held inside for so long started coming out little by little? It happened just so. All that coming out while she was massaging. It was the nursing attendant from the night shift. Again I thought: I’ve been so unfair!
One morning a doctor, a was not to fond of, approached me. I think they have to be very human, and they must calm the patient by talking to them, etc. Well, she comes to me and says, “Juan, we can’t carry on much longer with the respirator. The more time goes by, the more harmful it is for your body. It can even damage your vocal cords. If you don’t react, we will have to start thinking about a tracheotomy.” She tried not to scare me, and she explained that it was a tiny cut in the throat that would soon end up healing by itself. I did not like her, but she talked calmly. I felt relaxed, but the fear did not abandon me. I became aware then that the respirator had to be removed quickly. It was like a wake-up call because I started to get better, very slowly though. Many days had elapsed and I still had many dear people, both family and friends, coming in t see me at visiting hours.
How did I feel about the tracheotomy? Since I had been hospitalized due to respiratory arrest, I imagined that if they removed the respirator, I would choke and I would end up surrounded by doctors and nurses, like when I arrived to the hospital, who would have to cut my throat with a scalpel to enable me to breathe. It may sound ridiculous, but I couldn’t get that thought out of my mind. Later, since I had my sources of information, I asked and I was told that if they had to do me a tracheotomy that it would be done right there. I saw myself in the operating room having it done in a moment. That calmed me, although I still wanted my throat to be left intact.
Doctor Susana spoke with me. She told me that they were going to try to reduce my dependency on the respirator, so they were going to start removing it slowly. In the morning and in the afternoon, they unhooked me and, very carefully, they sat me in an armchair next to my bed. At first, they tried to move me among several people (I was very weak), but I was the one giving instructions: first I asked them to raise the bed to an upright position, then I asked someone to give me a hand in order to turn sideways, and then, I would, finally, stand up. They were really scared that I could fall, but I wanted to measure my strength, and standing up for a few seconds did me good. I don’t remember the moment too well, but I think that they used a crane to sit me the first time, and it was a nightmare. It was probably because of this that I needed to prove that I could count on my strength. The crane is not only uncomfortable, but it also maskes you look like a sausage.
One of the things the doctor told me was, “When you feel tired, you tell us and we will put you back in bed.” I think it was like three or four hours in the moring and in the afternoon sitting in an armchair without strength to move. Just observing becomes quite boring, that’s why visitors are highly appreciated.
Still, I sought my distractions. In front of my bed was the that of Zacarias. I think he had had an accident and his life had been in danger. He was obsessed with the probe and spent all day trying to remove it. I think that by the end of the day they had called out to him more than a hundred times, “Zacarias, don’t take it off.” However, he would keep on trying. I remember when they called his mother. The nurses were very kind with her. She had come alone and they tried to comfort her because his death seemed imminent. I think they operated on him again, and I remember his relatives visiting him. Maybe it was three or four o’clock in the morning, and I was aware of everything.
I am convinced that in that ICU it is very difficult for someone to leave, and that if you have a serious problem, I hope we are lucky enough to fall into their hands. However, you must bear in mind that I spent nine days fully conscious, and it was very hard to be unable to rest. One day, a few nurses were discussing labor issues quite loudly, and that very same day I seemed inclined to rest, but they kept going on and on with their racketing. Finally my afternoon nurse came over and asked me, “Juan, what do you think?” They were accustomed to talking to me -the alphabet was almost worn down- and I was aware about allt he things that happened there; I used to tell them that I was like a big bother. But my answer was that I didn’t think it was the right place to be discussing such matters and at such a volume because patients need rest. She said, “Juan, you are the only person here who is aware of what happens.” Nevertheless, she apologized and said I was right. In the end, it’s a job and colleagues talk about their stuff. It is quite normal, but in an ICU, tranquility for the patient is essential.
Going back to what doctor Susana discussed with me… One afternoon I asked the nurse (before he told me to, although I used to wait for them to sit me, but I was too tired that day) to, please, put me back in back, and he said, “Just a minute and we’ll do it.” Doctor Chicote heard this and he said, “Really amazing, in the ICU of the Doce de Octubre patients giving orders to nurses.” Or something like that. I felt like getting up and going after him. Right after his comment, I saw him walking away towards his office. I called another doctor who was was looking in my direction, and I asked her to go to look for him. She asked me for who (she didn’t know what was happening). I told her I meant Chicote and, to be honest, he came quickly. He didn’t even imagine why I had wanted him to come. He asked, “What do you want Juan?” I answered, “I did what doctor Susana ordered. I do everything you tell me to do.” He said it was true, that I was a very good patient. So I told him that if there was now coordination among them, it wasn’t my fault. I believe that he understood me and nothing else happened. This is the incident I had referred to previously with this doctor, but I don’t give it any importance. When you spend a lot of time with someone, it is very easy to end up clashing for small things.
I think it was on Thursday 9th when Susana told me that they wanted to remove the respirator the following day.
We had a small converstion. She knew I was afraid and she tried to calm me. We reached an agreement. I told her that when they removed the respirator, I didn’t want people around, that I would try to relax and keep calm. I think that is what happened. I also told her that I wanted to be washed when I said so (they wash us at first hour, and I needed my time; you are the one who can best control your body time), and she agreed. Well, the following morning, I was the first person they came to wash, and I told them not to, and I argued with a nurse. I tell her that the doctor gave me permission to decide when I wanted to be washed. That morning I saw for the first time a blond nurse who never stopped talking. I think she was one of the most senior nurses there. I could see that Susana didn’t take her eyes off me all morning although from a distance, as if trying to be unseen by me. Finally, another nurse came to me and said, “Juan, now we do have to wash you. The doctor says so.” I knew I could not argue. It was a very quiet morning. The situation I remember in the ICU is that a little later, the new nurse came up to me very kindly and said, “Juan, in a little while I’ll remove the respirator. Keep calm.” I was greatly relieved. The first thing I thought was, “Well, it must not be too complicated if the last one coming is the one who’s going to do it.” Moreover, she seemd to have experience.
The frightful moment arrived. She approached me and said, “All I need is that you open your mouth as much as possible.” At that moment I looked at Susana, sitting about five meters away and controlling everything around me. All very calm. I don’t know if it had to do with my conversation with her or due to an accumulation of the circumstances. I’d rather think the first, and for that I am very grateful to her. Everything happended like I had wished. I opened my mouth and she pulled to take out the tube. It came out easily. I felt as if they removed a sucker, and I perceived a taste similar to cocoa. They put me a small oxygen mask. I was sitting up in bed, and relaxing is the best way to handle nervousness. I remember that the first words I was able to utter came out very weak, but it was my voice after ten days. The nurse attending the patient next to me was the one with whom I had argued in the morning about my washing. I apologized to her. She said it was okey, that what happened was normal. I thanked the other nurse for removing the tube. She had done a great job. And, of course, I also thanked the doctor as soon as she came by. I had been very afraid for days, but it turned out to be so easy!
I want to recall a day when Eli saw me crying. When it’s visiting hours, they all try to make everything look as normal as possible to avoid visitors from seeing nasty things, of course. Many times, as visitors, we become impatient when it’s a few minutes after the time and they have not started calling. What usually happens is that there is a new patient coming in, and the priority is to attend him. Or, like in my case, that the mucus must be removed, etc. Well, one afternoon, time was running fast on them. I had everything planned because I needed to be sitting up for at least half an hour to recover my strength. I think I have already explained it before, (but if not, I’ll do so now), they finally removed the respirator on Friday because several days before, while they sat me in the armchair, they disconnected the respirator in the morning and in the afternoon to see how long I was able to resist on my own. One thing is removing the tube, and another thing is disconnecting. When they disconnected, I still had the tube. Well, it was almost ten minutes before afternoon visiting hours, when the nurse came over and told me that they had to sit me in the armchair right away. I told her that there wouldn’t be enough time for me to recover, and people would see me hectic. She answered that it was the doctor’s orders. Orders from the doctor who had told me about the tracheotomy and who I disliked. Well I continued to dislike her. I said, “We are like beasts.” She stared back surprised and asked me why I said so. I ansered, “You have to place us on display.” She understood, but she was following orders. I know that that afternoon Eli and everyone else coming to visit would have had a better memory of me had they seen me in bed. Eli immediately saw something was wrong and aked me what was happening. I always tried to appear as best as possible for her, and it bothered me that, for a silly decision, family and friends would feel bad. That doctor probably thought, “If they saw him sitting yesterday and today they see him in bed, it’s like going backwards.” I would have been better in bed.
Doctor Susana, with more years of experience, would listen to you. The other one, a lot younger, was back. I didn’t see any humanity treating anyone, not even with the nurses. It seemed that she was there simply because she had had to study medicine. I may be harsh, but Eli had to go through a bad day just because of an absurd decision. She already had to be there day after day, morning and afternoon. I think it’s more than enough without having to make things worse.
That Friday, so decisive for me because the breather was removed, I was relaxed and adapting to the new situation (I had taken a great load off of me), at around 2 p.m. there’s a rumour going around the ICU: a bus had had an accident. I think they all got very nervous. Doctor Dario was on duty. I saw them rushing: youngsters, not enough free beds, maybe another ICU… when they were not even certain yet of how severe the accident was. Considering that it had been a bus, I figured that it would be about 50 people and in a nearby radius there were many hospitals. There was no reason to believe that they all should come to the Doce de Octubre. The thing is that in the following days there was only one patient coming into my ICU from that accident. Well, I was seeing what was going to happen. I was the one in the best situation there, so who were they going to kick out? Me. After a while, a doctor came up to me, and I didn’t even allow him to speak. I said, “If you have to transfer me, don’t worry.” He thanked me but I still believed that they were rushing too much and the facts, as I have told, proved me right.
They put the oxygen on my bed, my medical history and the few things I had (among those few things there was a photo of my niece Rachel and her son Robert), and hurriedly I was taken out of the ICU. More than a week had gone by and they were kicking me out. There I was protected, I knew everything. I had no idea where they were taking me, but they were doing it hurriedly. Hallway to the right, to the left, elevator… It was as if I was on a trip after a week. Suddenly we stopped, and I didn’t like it.
It was the ICU which initially I should have been assigned to, but I learnt that many months later. When I had come to the hospital, they didn’t want me. It seems that they didn’t have any free beds at the time. So if they have no room for you, their solution is to let you die. They explained this to me much later, and this is why I will be eternally thankful to the ICU of MULTI-TRAUMA. While I was agonizing, there had been a big discussion among the doctors, and it seems that I am now writing this because there are doctors who ennoble their profession. I hope that one day they will all be like that. I think that the priority is to save a life and then, once we have saved it, to decide where to put the patient. If it’s done the other way around, then we may end up with no patients but with a lot of free beds.
Since I leave Multi-trauma, I want to recall a few things: my neurologist, Eduardo. As far as I remember, he came to see me two or three times. Eli told me that he felt responsible for not admitting me to hospital. However, the first time he came to visit at the ICU, I told him that there was no way to undo what was done, but that I needed him to concentrate on learning as much as possible about Myasthenia in order to help me when I came out. He held me and looked at me, but he couldn’t answer me. The neurologist who had detected the illness at the Emergency Department also came by another day. In general, I remember that ICU with pleasure, but I am unable to recall all the names.
THANK YOU MULTI-TRAUMA ICU OF THE DOCE DE OCTUBRE.
The new ICU, apparently, had to be better. For me it was more quiet and with more attention, in other words, with a more personal treatment. However, I immediately realized that I was going to have problems. For the time being it was like private “boxes”, and you had a nurse all for yourself. In MULTI-TRAUMA I had a lot of open space, and here everything was smaller. If we add to this that that very morning they had removed my breather, so the transfer had taken place while I was still adapting to breathing by myself and I needed to be relaxed, it’s no surprise that I was afraid of nightfall. I was also very hot. Finally, night came. I believe that that night I felt what it’s like to want to kill yourself, although I may be a little exaggerated. My nurse that night used to be called Pepi. I say that she “used to be called” because I think that after that night she must have ended up hating the sound of her name. I spent all night calling her. I was very uncomfortable. The oxygen mask I was wearing since that morning was made of plastic, and, even though I have beard, after so many hours, I felt as if it were nailed to my face. The noise of the oxygen was distressing. I pleaded Pepi to disconnect me, I couldn’t handle the noise anymore. The noise came to me from behind, where the machine was, and I asked her how come no one had made one that didn’t make any noise. More heat and more tossing and turning… In addition, from where I had come, without having to call anyone, someone was always in sight in less than a minute. Here they were all in an office, and you had to shout out for them. I spent a terrible night without there being any need for it. I know I ended up falling asleep, distressed, at 7 a.m. I remember waking up at 7:15 a.m. and all my feelings were renewed that instant. You go to sleep wanting to die and you wake up and see it all different. Then, they wash you and you feel much more relieved. I remember that what I first did was to say I was sorry to the nurse for the night I made her go through. I also remember that in the change of shifts (I had heard it from my bed) since I had gotten angry, they referred to me with a number. I called that nurse and asked her who was going to be with me. She said she was going to be my nurse, and I told her that my name was Juan, that I wasn’t a number. I forgot to mention that, when they move you from one place to another, the corresponding doctor comes up to you to ask you what’s wrong, and you end up fed up. I asked them what they wanted the medical history for. Then things got smoother and, amazingly, they all knew what had happended when I was admitted to hospital.
That doctor was one of the supposedly “bad” ones because he had met me during admittance, and, like he told me and I already mentioned before, he did not want to take care of me. Well, that morning, he was nice with me. I wanted to know what they were going to do with me because stress is not good for the Myasthenia, and I could not bear the thought of going throught another bad night. He told me that he would try his best to take me out of there. In the morning I had visitors. Like always, Eli came to see me. She didn’t miss a single day. I’m sure that she can’t actually imagine what I went through during those days thinking about her and, especially, about how she was doing home alone, and not being able to take her out of my mind. During the day it was bearable, but at night…
I can’t remember who came in with her that morning, but I was nervous. I wanted to get out of there and the day seemed endless to me. I remember that I was a little worried in the afternoon. I could hear a desperate young boy shouting and saying that they had killed his mother. It seems that the woman had undergone liposuction surgery in a private clinic, and they had done a very bad job because the she was in a very critic situation. The doctor came to tell me that he was still trying his best for my transfer. He had contacted the fourteenth floor, Neurology, and they would come down to talk to me about moving me up there. That’s what he thought.
After a while a couple of women come over to me, I can’t remember if they were nurses or if one of them was a doctor; it doesn’t matter. I may not be fair, but I had the feeling, especially from the one who talked most, that they didn’t inspire any trust. She began to tell me stories… Since it was Saturday, there would be little personnel, that Monday would be better, etc. What I believe is that they cared very little about my situation. I kept insisting, but she kept on putting excuses. In the end she said Sunday afternoon. I asked her if she gave me her word, and she yes. Well, it turned out to be no. But I never forgot her face. Two months ago I came across her while waiting my turn at the neurologist. I told her, “More than two years have gone by, do you have a second? Over two years ago you were going to take me away from the ICU. There’s no need for you to go get me, I already came out.” She didn’t even answer me. She’s that type of arrogant person who cares more about people watching her than treating patients with humanity. When the doctor came later, he asked me what had happened, and I explained it. Let’s say that he wasn’t happy with the way they treated me, and he left hurriedly and angry. The nurse told me that she thought that, thanks to the doctor and to his persistence, I would be taken to Coronary. After a while this made me feel worse.
I don’t want to be boring, but I was very uneasy and I kept on turning things over and over again in my mind. How did Coronary sound to me then? Bad, very bad. I imagined that I would even see hearts pumping out, people having heart attackes, nervousness, everything very hectic. I know that it seems very silly now, but at the time that’s what I thought it would be like.
Visiting hours was approaching, and I was still there. I assumed that I would have to spend the night there again, but I still had hope. I finally heard the words I wanted to hear: “Juan, you’re being transferred.” I think they let Eli come in for a minute. I was being transferred! I was so happy! I seemed a bullfighter waving. I went down a few halls where the visitors were waiting; I don’t know. It seemed like going around the arena, and everyone greeting me. I think that there were about ten people that afternoon, and everyone was looking at me. It seems that you’re important to someone. I don’t mean it only for that afternoon, many people went several times, both family and friends. I don’t want to name anyone –unless it’s a very concrete moment- in order to not disturb anyone if I forget to mention them. I may forget while I’m writing, but not in my memories. Even people with whom things have gotten colder with time; I remember their visits and their words of encouragement.
The fear I felt the afternoon I was told I was being taken to Coronary suddenly turned to relief when my bed finally came to a stop. I felt a calmness I hadn’t felt in the last nine or ten days. It was as if everything had stopped. Basically, it was more spacious than the previous one, whiter, without noises, I don’t know how to describe it. The nurse and the assistance immediately came over to take care of me. They opened venous lines, etc. In such moments you feel as if you belong to that nurse, and that calmed me. As a very special exception, they allowed Eli to come in. Visiting hours were already over, and this ICU was more strict with visits. In the previous units, you could receive all the visits that came, two by two, of course. In Coronary, only two people could come in. I remember it was the first time I ate. As I said, Eli came in and fed me supper: white rice and chicken breast. I doubt that there was anyone happier than me eating at that moment. I suppose that in the fortunate world there’s people who have food and who don’t appreaciate it. I’m sure Eli left with another spirit that night. I think my face changed when I came to that ICU. Eli asked if anyone else could come in, and the nurse gave her permission. Of course, I told her who I wanted to see that night. When I had come down the hallway, I had seen the parents of my friend Antonio. I asked her to let them come in. I still had not seen them. They are old people, and I know I am dear to them. I also wanted my cousin, Mari Carmen, and Manolo to come in. I had not seem them till then. That night I had to make a choice. Some of the people waiting outside I had seen frequently or I would see them often: Fernan, Vero, Antonio, Josefina, etc.
When they finally left, I guess it was around 8 p.m., I was in heaven. I think that five minutes later, I fell fast asleep until eight o’clock in the morning. I was finally able to sleep well.
I want to recall that it was Sunday, so there was a special breakfast: croissant. I tasted each bite, spreading butter and jam. It was a delicacy. And the sun was shining through the window... That morning I think Eli saw me very well. That Sunday they had already removed the nasal tube, and in the afternoon they removed the urinary tube. It was a good day. I was only worried about the Formula 1 race because they were going to cancel it due to a problem with the wheels. It was the Indianapolis race. It was such a great improvement that the next day, Monday, I was taken up to a room.
Before I forget, I don’t know why but, aside from having the tube, during some of the visits I received, especially the first one, I felt so moved that I couldn’t speak. I also know that Eli behaved in an exemplary manner. Instead of feeling sorry for me, she talked normally and encouraged me to react. If under these circumstances you see other people crying, you want to unhook yourself from the machines.
They said, “Well, Juan, we have found you a very quiet room.” Eli was also there. Sorry, in fact, Eli was always there. We reached the 14th floor, room 1449/2, and holy sh…! The room was quiet indeed. My roommate, about 74 years old, had had brain hemorrhage. He was tied down, and he couldn’t do anything by himself. The room was too quiet, for my taste... There I was, a great talker with a roommate who couldn’t talk. He could only utter a word sporadically. I tried to find something positive in the room: the window and the bathroom were mine. At least that was something.
Up in a room, you’re no longer a spoiled child. You must learn to survive. For example, before, it was sacred to get medicines on time. However, here, you often had to remind them. I spent many nights without sleep in order to take my medicines on time. Before, there was a nurse per patient. Now, there was probably one nurse for twenty patients.
Nevertheless, I was feeling much better, and I was starting to depend on myself. When I wanted to sit up or get up, I would take hold of the nighttable and, pulling with my left arm, I would manage to get the impulse to lift myself up. It took me some time to get used to it. My roommate had to be cleaned four times the first night because the poor man could not control his body functions. His name was Jose. I learned from his sons that his wife was also hospitalized in the floor below. During those days they were trying to transfer them to a residence in Griñon. They finally made it. Jose’s only obsession during the whole day was to unfasten himself. They sat him in the armchair, and they had to tie him down. Many times, I would have to call the nurses because as soon as they were leaving the room, he had already managed to break free. It was incredible. One morning, I asked him a few things, and he surprised me. I asked him, “Jose, do you like soccer?” He replied, “A little.” Then I asked him if he liked bullfighting, and he answered, “More. I like Juli.” Then, I asked him how old he was, and he answered, “Thirty-three.” It was amazing. In just one second he would be talking lucidly and the next second he seemed another being. At night he had nightmares and called out for his mother. Another day he received the visit of a woman, I think she was his daughter-in-law, and in the afternoon he asked his son who had come to see him in the morning. It was amazing.
It was Tuesday and the nurse came in. It was about seven o'clock in the morning. She said, "I have to inject you on the artery. It’s for gasses. Don’t worry, it hurts a little, but I usually manage to do it on the first try." I smiled to myself. As usual, she missed on the first try and she got a little nervous. I said, “Don’t get nervous; poke calmly. Let me know when you reach the artery, and I will keep still.” After a while, the usual routine: breakfast, nurses, blood pressures, the doctor, etc. Except for washings, which are up to you. I think that was the day that Eli helped me with my first shower. It was a little complicated because I still had on the CVL and the oxygen, but it was a relief to feel the water falling on my head.
Regarding meals, let’s say they were edible, despite how spoiled I was raised up by my grandparents. They loved us so much and they wanted to proctect us so much that my brother and I were spoiled kids. I don’t know if you can actually criticize that. What I remember most about my grandparents is that there are very few days along the year in which I don’t remember them. Now, after many years, I think I was a bit selfish with them. When you're young you see everything differently, but I'm sure I never did them harm intentionally. They were called Carmen and Juan. She left first, and he followed after.
Since I wasn’t very hungry, meals was easily solved. It was hard not to like the first or the second course, and then fruit or yogurt. I had an additional problem. It didn’t happen very often, but sometimes during meals I had, what I call, little attacks: I couldn’t swallow and my tongue paralyzed. I would get a little nervous, but I tried not to get scared and to think that it would be over soon. This was true. For the afternoon snack we had a glass of milk with four cookies. I would ask them for a yogurt, and, almost every time I asked, they found one for me.
One of those first mornings I had a little accident. I let out a gas, but it was not gas. I was urinating on the edge of the bed with the hospital urinal, and it happened. How embarassing! That very instant, Nati, a hospital assistant walked in. Almost without speaking, she quickly realized what had happened and she said, "Don’t worry, I’ll be right back to clean you." The other assistant told her it wasn’t her job, but Nati said that I still couldn’t manage on my own, and that that she wasn’t asking her for help. Soon after she came back and washed me.
I can’t remember if it was that same day when during the doctor’s visit I asked him how many other patients shared my illness on that floor. I felt like a weirdo when he said I was the only one.
I recall that Nati brought us breakfast, and since Jose couldn’t eat by himself, she would feed him. What I liked about her was that she treated him with the same affection, or even more, than she treated me. This is why I sometimes make a difference between some people and others.
The days weren’t too weary. It was a matter of making the best of them. It was a routine, but the only thing out of the routine were visiting hours, when I always had visitors. Sometimes I would be surprised to see people I had not expected.
One day, Joseph received the visit of a young girl when they were going to wash him and sit him in the armchair. Well, I heard that girl say, “Let’s not seat him. I’m going on vacation tomorrow, and I don’t want to make strains just in case.” There were four people, and they didn’t sit him in the armchair. On other occasions just one person would put him in the chair. It had nothing to do with strength, only will. When the nurse came in later on, I asked him, “Jose won’t be seated today?” And he replied, “Why not? He will, as usual.” I explained what had happened and two minutes later Jose was struggling to untie himself, which he always managed to do.
There was a nurse called Petri who was shouting out all day to Jose. What an example! She probably thought that if she yelled at him, he would pay more attention. At night, no matter if it was two or three, etc. she would yell and come into the room turning on the lights for anything.
Now I think that with her mentality she was probably thinking, “Since I’m on the night shift and I can’t sleep, let’s annoy the patients.” I complained to her superior. On the other hand, other nurses would come into the room to take our blood pressure or for any other purpose, and they carried a small lantern to avoid disturbing us. I would tell them to not worry, and I encouraged them to turn on the lights if they need to, but they replied that they could see well with the lantern without having to click on all the lights. I still think as before, some people are vocational (I believe that it’s fundamental in medicine) while others only do it for the money. But I don’t think that treating patients is like working in a factory.
My mother came to see me one day. She was brought by my sister, who came almost every day and who got me a TV. It was installed by her husband and Emilio, my nephew, who also came to see me often. My mother had broken her hip and she was admitted to the SEAR clinic. I don’t know how to define it, but I don’t ever want someone dear or not to be sent to that place again. I really hope that that clinic changes one day. Well, my mother was in a lower floor. She had been transferred for some exams. One morning she came to see me in a wheel chair. Later on, when I was stronger, I went down to see her.
I had been two or three days in my new room, and I felt much better. I began to do things by myself: I could go to the bathroom alone, get water, read, etc. But on Thursday I started to feel unwell. It was little by little, and I had fever. At noon, I remember that Antonio and Josefina had come. I know they love me and Eli very much. Moreover, Antonio is a little apprehensive. Later I learned that on one or two occasions after coming to see me, on their way home, they had to stop by the hospital so that he could get a check-up. It really affected him to see me like this. I also know that their children, Mar¡ and Antonio, had a hard time. They know us since they were born, and we are very good friends. Unselfishly, when due to circumstances we spend some time without seeing each other (we live less than a mile away), we never throw anything in each other’s faces. Due to instability at work, I go through many moods, and so I don’t show myself how I really am. Whenever I need them, they are there, and maybe I'm not always there for them. When they saw me, they realized that I was not well and the two were in a hurry (they had to go back to work). I told them not to worry, that it was ok for them to leave. Antonio had to go, he had an interview and couldn’t put it away. Josefina insisted on staying, and stayed. It was a relief that she stayed until Eli came.
She had a hard time, just like Antonio. Before leaving, I told Antonio to sit me up. Until then, I had done it myself, but I had no strength. He took my hand and began to pull, and Josefina also helped. I had no strength at that moment. I won’t mention them anymore, but I want them to know that, despite my mood swings, they have a very special place in my heart.
Eli spent all afternoon putting damp cloths on my forehead, as well as all night. It must have been another bad day for her. It had been going well, and now we were going backwards. She asked me if she should stay, and I felt sorry for her, but I said yes. I needed her.
That evening I also received the visit of some other friends, Pepe and Angelines, with their daughter, Lety. They picked a bad afternoon. Lety is young and dislikes going to hospitals, so I know that she had made a great effort that afternoon because she loves me. I could hardly talk to them, and I was hot. I had my pajama shirt half unbuttoned, and my entire abdomen was full of bruises due to all the constant punctures. It looked awful, so I must have caused a bad impression. It even impressed myself. The first time I saw her mother when she came to the ICU, I don’t know why, but I remember that she was the person who sensitized me most to see, as well as my godfather. I don’t know, but I was touched with her visit. And I seem to recall that I had told her to not allow Pepe to come in. They had already had enough of hospitals. Raul, Lety’s brother, also came to see me for the first time that week or the following one, I don’t remember clearly. He also loves us very much. I later learned that he was trying to get his driver’s license, but he quit because he couldn’t continue at that moment. We also love them very much and have also known them since they were born. Though he still didn’t have his driver’s license, Raul always runs ahead, so he already had a car. He told me that when I was discharged, he would come to pick me up in his car. Then, after leaving the hospital, I wanted to come back one day to deliver a letter to Multi-trauma, and he took me. If I had wanted, I could have called him anytime, and I am sure that he would have managed things in order to be available for me for whatever I needed.
I keep trying to remember things, but not for morbid reasons, nor to make people feel sorry for me; it’s not my intention. What I went through is nothing compared to what my nephews, Veronica and Fernando, are going through.
It was many the times that they came to see, whether the were allowed to come in or not. But I know that they were there, supporting their aunt, running errands for me or bringing me headphones. I know that many of the days they came, Vero wasn’t feeling well, but she wouldn’t want to give it importance, and she would deny it and say that she was fine. As if I were blind! With other people, I think I've been able to explain my feelings, but there are so many things about them that I don’t know how to explain them. All I can only say is that I love them very much.
One of the people I have loved most -and I think I will still love, although some people may not understand- is my brother. For reasons that are irrelevant here, we have grown apart for many years. Eli called him, and he came right away. I think that he wasn’t able to come in at first. It happens to some people. I don’t care about that, I don’t chide him at all. Then he came in many times despite our distancing. Let’s say this was a separate issue. The truth is that those days I felt he was the brother he had always been, and there's nothings I wish most, along with Vero’s recovery, than to regain my brother someday.
That was a terrible night. Not only for how I was feeling, but also because of Eli. She was going to go through a tough night. Occasionally I opened my eyes and I saw her. There she was at the edge of the bed, aware of any of my movements. I was feeling almost like the day of admission, regarding my breathing, but on a smaller scale. Fortunately, that night I had another nurse, Gema, giving me tranquility. She came by several times at night, but I kept getting worse. At around seven when she talked with us, she decided to call the ICU. I was sent down to Coronary again. Upon arrival, they wanted to open another venous line. Without exaggeration, at least three nurses pricked me, and, at least, two times each. They gave up saying, "I’m not going to prick this man anymore." They could not find the vein. I relax myself a lot because I think that they can do there job better, but there was no way. As I’m writing this, Vero comes to my mind and how much she has suffered. It makes my experience unfair to tell. The nurses wanted me to lie down, but I kept saying no because I couldn’t breathe while lying down. I asked them to raise the headboard and to put pillows on the right side. I spent several hours like that. That's how I could breathe better.
Now I’m wondering what went through Eli’s head from seven, when I was sent down, until noon, when she was able to see me. Doctor Lesmes told me that the problem I had was a central line infection. By that time, I had already managed to be seated in an armchair, and they had to open another vein line. I asked him to try to open the vein line while I was sitting in the armchair. He said it wouldn’t be easy, but that they would try. I couldn’t lie in bed at the time, I could hardly breathe. He told me to relax. They were going to try it in a little while. It was about half past eleven, and perhaps to calm me down, they allowed Eli in half an hour before visiting hours started. I remember that Marcos came in with her. He’s the husband of another niece, Cristina. They came many times to see me, both together and separately. Marcos came many times alone. We get along great. One day I remember they brought me a small fridge, and it was very handy. Then I would ask the nurses to put water in the freezer, and that’s how I could have cold things in the room. In general, I don’t have bad memories of anyone and if, ayone failed me, maybe I have also failed a lot of people. Many times we fail without malice, that’s why I don’t hold a grudge against anyone. We must find what unites us with those we love.
Well, Dr. Lesmes approached me. He seemed a good and hearty person. He said he would try while I was seated. If things went wrong, there was the possibility of opening a vein line in my groin. As I learned later, it is much more painful. They had to introduce a catheter, they punctured and it went wrong. It got filled with blood. After two attempts, he said I had to try to lie in bed, to make an effort. I don’t know if it was thanks to the tranquility he transmitted me despite the failures, but I did as he asked. I lay down and I threw head back calmly. They gave me time, without rushing me , and he told me that they would try to do it as fast as possible. The feeling I felt... It’s something that is entering into you, penetrating -I imagine- through an artery. It's a weird feeling but, as I say, if you try to be relaxed, it is easier for everyone. He asked, "Does it hurt?" I said, "No, I can bear it." When he finished he asked me it I was alright, and I said I was. I told him that it had been worse for him because he had been sweating more. He laughed.
From that day the fever began to lower, and I got better. In fact, the following morning a doctor from the ICU, where I should have initially been admitted (you know, one of the bad guys who had met me when I came to hospital), came to see me and told me that I was going to be transferred to another ICU, and left. As he was leaving, a great fear entered the body. In a second I shouted out when he was walking down the hall, and he came back a little haughty. He told me that I shouldn’t be shouting in the ICU (I wish they had been that thoughtful the day I was hospitalized). But, I knew he was right and, since I wanted to win him, I apologized, and he accepted. I told him that I had been told that for my disease I needed to be calm, which I had achieved in Coronary. I still have trouble understanding how he agreed and respected my wish.
I was a little rebellious, and since I was feeling strong, sometimes I forced the situation. It's funny, it was as if I had more strength, perhaps mentally, but my body did not always respond. Many times I had to prepare my meal, and I tried as I could to prick with a fork. At times I couldn’t control my arms. Sometimes it was a mix of lifting up the fork a little and lowering my head at the same time and having them meet halfway. Other times, I couldn’t lower my head because then I wouldn’t have the strength to lift it up. Little things. When I was going to get into bed, they always called the hospital assistants. I used to tell them that it wasn’t necessary to lower the bed. I could sit down, I would let myself fall down slowly. and it was as easy as that. But in the ICUs they are very careful. I remember that one day, while sitting on the edge of the bed, I asked for the urinal bottle. They asked me if I could do it alone, and I said yes. It was true. I had strength to stand up, my legs could hold me, but suddenly my legs lost strength and the floor approached my face really fast. The nurses were more scared than I was, but I didn’t get hurt. In those moments when my arms, legs, tongue, etc. failed me, I admit that I felt a little depressed. I thought it was going to be like that forever, and it scared me. In fact, when it occurred, I tried to hide it. I do not know if it was because I didn’t want to worry Eli or for my own fear.
Whenever I had to do number two, I would sit down in the armchair. I used the urinal and they would put a screen, and then the nurse would wipe me because I wasn’t able to. I remember that on the 17th they opened the vein line and until the 20th, when they sent me back up to a room, nothing very remarkable happened. Perhaps the food. In general, I could choose from a menu that they would give me the day before. When I was back in the hospital room, I always expected the menu, but it never came. Let's say that in the ICU I ate like in a hotel, and in the room it was like a diner with a single menu.
I was sent up back to the room and, fortunately, I never went back down to the ICU. I don’t remember if they had already taken Jose to the residence. If not, then it was shortly after. The brought me a new roommate. His name was Paco and he had problems with his kidneys. He wasn’t as talkative as I was, but as he began to recover, we exchanged newspapers, played cards… The atmosphere was completely different than with Jose.
I realized that I had to organize myself. In order to make my day less tedious, I would get up at six and go to a waiting room. Early in the moring you could be there, later on in the day it became a smoking room. You coulkn’t even reach the drink machine. Besides the fact that smoking wasn’t allowed, they had the habit of sitting next to the machine, which you couldn’t even see with all the smoke. Well, have I exaggerated a little, it’s licensed by the author... I used to drink a cappuccino. I'm not fond of coffee, but at that early hour and all by myself, it tasted very good. Then at about half past six, I took a shower. It was the best time, no one bothered you, and you annoyed no one. I lay down in bed for a while reading and waiting for the start of day. Nurses, punctures, blood pressure, breakfast, leaving the room while they make your bed, waiting for the doctor’s visit... And at one, lunch -almost always before- and at that time I would have any visit except Eli. She had to start working, and she would come in the afternoon. Many days, after lunch I got pissed off. I used to sleep a little right after eating, I became sleepy. At night I couldn’t sleep very well. In fact, I had to take a pill to help me fall asleep. Many times, when I woke up I used to find a newspaper. It was left by my brother who didn’t want to wake me up. I wanted to see him, so I got pissed off. In those days, I think he was very good with me. At five o'clock, snack time. After that hour, the day became heavier. At eight o'clock, dinner. And then I tried to have Eli out as soon as possible so that she could rest. Then, at about eleven, I liked to phone her to see if she had gotten home alright.
Some mornings, since I had more strength, I took the elevator and I went to the library. But the library was always closed, so I went to the chapel. Luckily, it was open. I would go down to see my mother, and I also went to see Sandra, the daughter of Peter and Julia, who had undergone a delicate operation. She was about fifteen years old, I reckon. What surprised me when I saw her is that, even though she was a child and having had an operation, she shared the room with a woman in her eighties who was a little bit out of her mind. It sure is the best thing for a girl to take courage... Luckily, Julia was with her all day, otherwise I think she would have run away.
One afternoon I went down to the bottom floor. My brothers-in-law, Fernando and Isabel, had come to see me as well as their daughter Raquel -my neice- with her husband, David, and Roberto. I think he was about two years old and since kids weren’t allowed up in the rooms, I went down to see them. I think that Susana was also there. I couldn’t recall having seeing them before. I think that they were on vacation when it all happened. I do remember that Susana was the first person I saw when I woke up, then she came a Saturday with David. They were all going to have lunch at Fernan’s and Vero’s house, which was very near to the hospital. My brother-in-law also came other afternoons, but as I said, many people came to visit me.
Although everything was fine, new infections emerged: some fungi in my feces, and who knows what else. One afternoon I went to the bathroom, I had to call Eli to wipe me. It was impossible for me. Then little by little it all got corrected. I remember that till the day I was discharged it was all a little more tedious. A weekend was close and it seemed that I could be discharged, but it actually didn’t happen until July 5th. I think that Fernan offered himself to come pick me up if necessary, because we knew that I would be going home that day, but I said no. After so much waiting, I could still wait for the afternoon, and go home with the person who had gone through all the bad times: Eli.
It’s funny. You can’t wait to be discharged, but when finally are, you have a strange feeling. It’s as if you have to leave your house, your bed. After over a month it’s as if a part of you is being left behind. Of course, it’s a part of your life and of the memories of people who have been very good to you.
Before leaving, I want to remember some small things. The day they gave me the croissant in the ICU, they told me it was given on Sundays, as something special. I was tired of always the same breakfast –coffee without caffeine and a pear- it’s boring. So I looked forward to Sunday mornings as if the arrival of Santa Claus. Then the day comes and there is no Santa Claus. They gave me muffins. I think my blood pressure went down and all. I had been scammed. Andrew came to see me. We worked together, and he usually came to see me on Sunday mornings so we could talk more calmly. We agreed that the next day, he would bring me the croissants. They were so good! I had spent two weeks waiting for them, so I sure had to like them.
It was a very small room. In fact, you had to play Tetris to come in. It’s funny. I had been to that hospital thirty years ago for the first time. My grandfather had been hospitalized for a few days. Back then the rooms had seemed big, but the passing of time makes us see things differently. When, in the mornings, the doctor came in, I remember he would end up moving the bed aside. He could hardly examine me. The armchair couldn’t even be leaned back. The cleaning ladies had to to their job in strikes. One moring while I was sitting, the broom of one of the ladies slipped out of her hands. I was right in front and the stick fell right on top of my right testicle. I lost my breath, but I had no choice but to laugh. The lady got a little worried, and then after a while she came back to apologize. There was no need. She brought me a donut. I told her that if she brought me donuts, she could hit me every day. I asked my brother to bring some chocolates for the nurses when I was going to go. It made my mouth water to think that when they opened the box, they would give me one. I was wrong, they didn’t even offer me one.
In the first ICU, some nurses want to take such good care of you that many times they treat you like a child. I remember that one evening they have no better idea than to wet my head and to comb my hair parted, as if I were a little boy. As the nurse turned around, I managed to move my hand and my head to meet halfway and I ruffled my hair all I could. When I felt at ease with someone, as soon as they asked me something, I would ask them for the alphabet or they would directly give it to me. I managed to be very fast with it. In the end they would tell me to slow down because it was hard for them to follow me. When someone I disliked asked me something, I pointed to mouth with my finger as saying: "I can’t talk." The truth is that I think I did that only with one person, but she was not very communicative with me. It was the doctor who explained the tracheostomy.
It was very hot for me in the ICU. It was summer and the airconditioning wasn’t working or there was none. All I know is that I didn’t feel it. The respirator is secured with gauze, which runs behind the neck, and, moreover, I have a beard. It bothered me a lot because with the drool it was wet almost permanently, and I couldn’t ask them to change it every five minutes. It's funny, they wanted to shave my beard from the very beginning, but I refused and they accepted it. It wasn’t for the beard (it grows back), but I was terrified with the thought of them touching the rubber in my nose, the one for feeding me. When they touched it, it was so disgusting! It was like the one for the urine. Whenever they accidentally touched one of them, and they realized that it bothered me, they always said the same thing, "Juan, it was nothing." And I would think, “No shit! If you had it, you'd see how it feels ".
When I was brought down to the second ICU, a detail bothered me a lot. Someone wearing the respirator called the nurse, because it needed to be cleansed. I already explained before about putting the straw. About two seconds, and you feel like dying. Well, that nurse was annoyed by having been called, and she told him that she couldn’t be cleaning it all the time. As it fills with mucus, the noise implies that it needs to be cleansed. It’s is not something you ask as a whim. It is a very unpleasant feeling, as well as when they clean it. It’s something I don’t wish to anyone. Well, except to those “unprofessional” nurses so they know what it feels like and to make them more human. Fortunately, I was not conscious when they put all probes, respirator, etc., but when the time came to remove them, I had some qualms. It was very simple, though, the nurse who removed my catheter told me to breathe deeply and it was out before I knew it.
I previously mentioned that I didn’t want two people to come in to see me. Basically because at that time I thought that they would emotially affect me a lot. The next day I said that if they wanted to come in, they could.
I am going to try to remember some of the people who came by, to help makes things easier. If I don’t mention someone, it’s a misprint. The order has no importance; all the people who came to see me at any time, more or less frequently, were a great consolation. Even my uncles, who couldn’t come, but the telephone conversations with them really comforted me. Well, it’s a way of speaking. I remember that it was almost impossible to talk with my aunt, I got so excited that I couldn’t speak. And I know that if they could they wouldn’t have left the hospital. I just don’t say so, I really mean it.
Eufemia, my mother -who died recently-, my brother Pepe, his wife Luisa, my sister Mamen, Emilio, her son, and Antonio, her husband.
ANTONIO, JOSEFINA, ANTONIO, MARI JOSE, MR. ANTONIO, HIS WIFE, RAFA, MARISOL, JAVI, MONTSE, FERNANDO, ISABEL, SUSANA, DAVID, RAQUEL, DAVID, ROBERTO, RAFA (THE FIRST DAY I SAW HIM I SAID, “I MUST BE REALLY AWFUL IF YOU, WHO HARDLY TALK, ARE TALKING MORE THAN I AM.), JESY, CRISTINA, MARCOS, MY GODFATHER, CHIQUI, PEDRITO, NURIA, MARI CARMEN, MANOLO, ALBERTO, PILI, DOMINGO, GALO, PEDRO, JULIA, ANDRÉS, ELIAS, SUSANA NANI, JOSE AND MANOLO, LOLI AND HECTOR (i AM NOT AWARE OF HAVING SEEN THEM. tHEY CAME AT THE BEGINNING, WHILE i WAS ON A JOURNEY)
JOSE, MARISOL, SARA, CREMA, JUAN, RAMÓN, ATTGELINES, PEPE, RAUL, LETICIA....
If I have forgotten anyone, please forgive me, but I’m sure that at some time I have remembered themor I will remember them.
I knew I was missing someone…
FERNAN AND VERO. OH! I THINK ELI ALSO WENT.
COMING OUT OF THE HOSPITAL
When Eli came, I was ready. I had dressed and had collected the few things I had. I had been more than a month in pajamas, and the fact of getting dressed was like the first moment of returning back to normal life. We said goodbye to the few nurses we saw and we reached the elevator. As I was leaving that hospital ward, I didn’t feel great joy. Yes, I wanted to leave, but it's as if I had gotten used to living there. We went out to the street, and I finally felt the air outside. Well, more than air, heat. We were in the middle of July and in Madrid it is usually quite hot. Upon arriving home, Eli had to buy something in the supermarket, and I wanted to accompany her. I wanted to test my strength. I was slow, but I managed to take that little walk. When I got home, I felt a great relief. I was already feeling that that was more mine than the hospital.
I left the hospital taking lots of corticosteroids, which caused me to swell a lot. After seeing a photo that I took of myself, I think that when others saw me, they felt pitty for me. Although I had lost 10kg, my appearance showed otherwise.
Since I wanted to collaborate at home, I went to a mall the following day to buy some things. It didn’t require much effort to take the car, but when I had to change to reverse gear, I had to use both hands, because I didn’t have enough strength. Once at the mall I was thinking that I had to pick up things three times. Only the thought of it tired me out. Most of what I had to buy were drinks. I had to put them in the cart, take them out of the cart and place them on the cash counter, and then back to the cart. When I parked the car, I took out the shopping trolley. It was full, and I couldn’t manage to walk up the stairs that lead to my door. I had to go around the other way in order to avoid the stairs, my neighbors’ have a ramp. It was longer, and I had to stop two or three times. When I reached my door, I was so exhausted that I had to wait for a neighbor to come to pull up the trolley from the last step. For me it had been absolutely impossible. It really tired me out, but psychologically it was great for me. It had been my first outing.
In the mornings I tried to go out for a walk, but I felt uncomfortable. With so much medication, after walking for a while I felt unsettled, and, in fact, twice I didn’t make it to the toilet. It was impossible to control. This made me change my mind at first about the walks.
Sometimes, Marcos came by to go out for a walk together. One day we went to Xanadu and another day we went to a park where there were gym machines. Moreover, I couldn’t control my urine and I had a terrible infection in my testicles. Almost every day I had to prepare my lunch and then I washed the dishes. As the water poured out of the tap, I had to leave everything and go running to the bathroom. In those first days, the fact of preparing meals and cleaning up the kitchen were a great physical effort for me.
In those days, the calls were constant and, in many cases, I couldn’t even pick up the phone. I know that on more than one occasion, more than one person was annoyed. They didn’t understand that, apart from physical exhaustion, I was also emotionally tired. I was bored of telling the same thing every day to the same people. I am infinitely grateful for the telephone calls and for people showing they care about me, but everything takes time. I think that the only person I know who can understand this is my niece Veronica, the rest of the people can only imagine it.
Now I think that the first months after leaving the hospital were a little hard to bear, both for me and for those around me. First you have to accept your reality, and it takes a little. Perhaps the sufferer doesn’t realize it, but his character changes. You see that others treat you with a lot of care. Often, people came home and they suggested going out for a drink, but it took me a long time to feel in the mood of accepting. However, I would tell them to go and to take Eli along. I had no problems with that. In fact, what really bothered me was when others didn’t go out because I couln’t. I couldn’t stand it because it made me feel guilty.
A lot of months have gone by since I stopped writing, and I can’t think of anything else. The only thing is that I still carry on with the routinary visits to my neurologist, every two months. The last results were quite good, and I feel quite well.
Having gone through what I have gone through, I send out a hug to everyone who reads this. One way or another, you are part of my life.
JUAN BUENDIA AVILA
ADMITTED ON 6-2-2005
HOSPITAL 12 DE OCTUBRE
To all the medical team, who saved my life at first, and a very special greeting to doctor DARIO.
To all the doctors who followed-up my recovery.
To the nurses and assistants for their constant cares, for washing me, for encouraging me, etc.
To the hospital assistants, who lifting up our bodies, damage theirs.
To the cleaning ladies for the warmth in their eyes.
To the physiotherapist for her kindness.
To the alphabet, I don’t know how I would have gone through it without it, it was my means of communication, even if it seems simple and unhuman.
THANKS to everyone, and sorry if I forget to mention anyone.
And also forgive me if, due to my state, I was impertinent with anyone.
Without annoying anyone, I wish to dearly remember…