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2023 – European Year of Skills

I’m starting my blog in the eye of the storm, which means that this year is the best year to talk about what this blog is about: Living with a disability in a world where people should be able to cope.

What is the value of a disabled person? A disabled person is an excessive burden, both for the state (medical consultations, exams, surgical interventions, exemptions from payments, tax returns, potential subsidies, co-payments, medication, etc.) and for the family in which the disabled person lives (medication, equipment, housing/car adaptation, etc.). Being disabled is not worth it, neither for the state nor for any family. I will never earn the money that I have spent (and will continue to spend until I die) on the National Health Service, so my taxes will never pay “my bill.”

On a family level, the “scares” that I have given and continue to give are not easy to bear, leading to alarming levels of anxiety for the whole family. The cost of medication is extremely inflated compared to my income, and my disability is scary – in the sense that I think the scares I give are not worth the good moments I foster. Even making jokes to devalue these scares, the way I live them is not at all rewarding compared to the laughter I provoke.

If you were to ask my friends and family if they could live without me, they could, of course, but with much less fun. It’s no wonder they say that if I didn’t exist, I’d have to be invented…

And then I think of my mother (who is disabled like me), and how her experience taught me. It was with her that I learned her unusual way of appreciating every moment, even the bad ones, and how she stimulated so many people she met.

She used to say that the bad moments we go through are a learning opportunity, and the humor with which she moved forward was hilarious.

Fortunately, I was lucky to have fantastic parents in this sense of enjoying life to the fullest and getting everything good it has to offer and being very similar to them.

That’s another reason why I write this blog, because there are surely people out there like me, and I would like to meet them or, better yet: people I can help.

Skills? I have many. And I’m going to rock this year.

Pilgrimanges to Our Lady Of Nonsense

This is the time for pilgrimages to Fatima, and this post has nothing to do with the fact that I am disabled. It’s more of a venting than anything else.

I used to think that people who went to Fatima on foot were more evolved beings than me, in the sense that I understood their mission to be higher than mine, or because I believed that this sacrifice was so difficult to make (something I couldn’t do in the time frame set by the pilgrims – which is only a few days) that I thought only people with a strong belief in God could go to Fatima on foot. I myself have made this promise before, but I never put myself in a position to fulfill it because I never thought I had the conditions to succeed – physically or in terms of integrity towards God.

I am a lousy Catholic: I don’t go to Mass, and when I do, I search for the smallest coin in my wallet to give as an offering. I don’t pray daily, the only prayers I know are the ones I learned in the first year of catechism (I had to write a cheat sheet on my hand when I received confirmation, and I still don’t know the Creed by heart), and the only thing I do for religion is have a bunch of Bibles at home, all inherited from my mother, but I never use them. In other words, I consider myself a fraud – any religion I follow should be offended simply by this fact. But I can’t completely distance myself from religion because I’m still alive, and that, indeed, is a non-human achievement.

I couldn’t help but baptize my nephew, force him to make his First Communion (which is quite difficult because someone who doesn’t have Christian habits suddenly making another person follow those same habits is a challenge…).In case I needed to enroll him in a Catholic school, I never even considered the possibility of putting him in a non-Catholic one. I even considered the seminary as a possible school for him.

I also can’t go to Vila Facaia without going to the cemetery, at least to pray (the two prayers I know) for my loved ones. Fundamentally, I believe that I am a Christian simply by the way I am: I educate my nephew to be a good person, not to think evil thoughts, to be happy because being happy is the main reason for doing good things for humanity. I believe more in the path traveled than whether or not I go to Mass every Sunday.

When I need to contemplate fundamental aspects of life, then I go to church and, in the end, I pray. It seems that I can think better and I take the opportunity to pray for the people who are no longer with me. My religion involves trying not to offend, trying to participate in charitable acts towards others who have less than me, trying to follow God’s commandments… I try! And most times, I fail. And that’s why I don’t think I have a pure enough heart to go to Fatima on foot without feeling like a complete hypocrite.

The same thing happens when I occasionally go to Mass: I never receive communion because I feel that my mind is not clean enough, that I am not good enough. And worse! Because I love communion wafers! When I was little, I used to steal and eat them in secret, and the only reason I’m not going straight to hell is that they weren’t blessed yet…

So, for me, faith is a very serious matter; above all, it is a journey. It’s doing the best I can as I travel along. Above all, it’s believing in myself so that I can believe in something greater than me. And believing that the good I do, no matter how small, can impact the world we live in.

Another very serious thing for me is my job. I confess that I’m much less concerned now, but still, I like to follow the rules and expect others to do the same. I work in construction, specifically in linear projects. These are projects that are signposted, fenced off, and restricted. Only people working on the project should enter, and others should refrain from doing so (and be aware that the word “should” is used in the legal sense: it’s an obligation) because there are works, machinery, equipment, scaffolding being assembled and disassembled, soil being removed from slopes, etc., and various constraints inherent to the works themselves. The signage at all entrances indicates the requirement to enter with the necessary personal protective equipment (PPE), including basic items such as a helmet, vest, and boots with steel toe caps and soles.

Yesterday, I was mistreated on the construction site along with another colleague: About ten pilgrims decided to enter the construction site despite our warnings. They were mostly men and wanted to take a shortcut to walk less. Initially, they tried to appeal to their status as pilgrims, saying that they had come from Tondela and had already walked so much, asking if I couldn’t show solidarity with them. When I didn’t agree, they resorted to verbal violence. In the end, they said, “We’re going in whether you like it or not… Call the police if you think they’ll approve!”

I immediately questioned their faith: What kind of faith is this that allows them to disregard everything and everyone to walk less, when they surely made a promise to “go to Fatima on foot”? In other words, to walk from point A to point B? Can shortcuts be taken, reducing the distance promised to walk, including the effort? And, I mean, from Tondela to Coimbra is never as far as from Coimbra to Fatima… does the suffering of having already walked so much on foot justify mistreating others along the way? Or is the ultimate goal to reach Fatima on foot, no matter how much harm they do, how many people they mistreat, how much damage they cause, and ultimately how much they hurt themselves?

Yes, because my biggest fear was that they would get hurt – they didn’t have helmets or boots suitable for a construction site, and if accidents can happen to people who are properly trained and equipped, much greater accidents can happen to those who don’t have those means or don’t know they can’t climb that hill of dirt because there’s an excavator waiting on the other side and they could get hit by the bucket on the head…

I can’t do it, but I concluded that I could start receiving communion recklessly, that I could go to Fatima on foot as I pleased, stealing along the way, compromising individual integrity, that I could overcome any obstacle, disregarding everything and everyone because, after all, the goal is to get there, not the principle of doing everything that should be done along the way.

I think I’ll just pay the church tax so I can go to heaven. In the end, I sent a message to my team to tell them what had happened to me. To finish, I added, “They were on their way to Fatima. They should go to hell instead!”…

No one knows more about themselves than themselves

And what happens when doctors don’t listen to patients and insist that something happened to them in order to meet all the requirements of the disease they have chosen to diagnose?

No one knows more about themselves than themselves.

Once, I can’t remember if it was after my first stroke or after my first pulmonary thromboembolism, a doctor appeared in front of me (he was on the morning rounds with about 10 other doctors following him, and you could tell he was the boss of the ward). He asked me if I remembered having rheumatic fever and explained the symptoms. I had never had rheumatic fever and told him so.

He insisted, “But don’t you remember your parents picking you up and taking you to the hospital, worried?” (That never happened, my parents were fantastic storytellers, we knew every detail of what happened to us from the moment we were born. Even before that).

When I denied it, he looked at the other doctors and said, “That’s what happened – rheumatic fever and blah blah blah (doctor talk),” and they left.

I was astonished.

When my parents came to visit me, I asked them, and they said no, I had never had anything like that.

There are doctors who have no regard for what the patient feels or expresses. I never liked those doctors. Because no one can tell their own story better than the patient, and no one can describe what they are feeling better than the person themselves.

Assuming that the other person felt or feels something that never actually happened is also disrespectful.

He wasn’t the only one who did that, assuming that I had things that I didn’t have in order to insist on a diagnosis:

The “top” disease (the worst diagnosis I was given) was Multiple Sclerosis. But I also had sarcoidosis, and lymphoma of I don’t know what, among others on a smaller scale…

I usually do sessions/classes, mostly for medical students and master’s students, and one of the many things I usually say is:

Always believe what the person in front of you says. They are scared and want their situation resolved as much as you do. Why would they lie?

After all, blessed restrictive cardiomyopathy!

Climbing Green Park: A lifetime goal

While the objective of mountaineers is to climb Mount Everest, and that of athletes is to reach their peak of productivity versus efficiency, mine became to climb Green Park in London (I do not compare myself physically to any of the previously mentioned individuals, I only intended to give an update on life goals in terms of physical activity).

This is because at the beginning of the year I had the transplant, I almost died “climbing” Green Park (this “climbing” is in quotes because Green Park is not climbed, it is crossed! – It has a slope of about 10 degrees at the beginning, regular, followed by a short, steep ascent of about 30 degrees until reaching the nearest metro station).

Compared to the act of climbing a mountain, which I believe even the most professional mountaineers find challenging, crossing Green Park is nothing for a normal person. However, for me, it was the maximum difficulty.

I often found myself in situations of vulnerability, but never in this context (in another country, alone (see “consequences of traveling alone with a disability”), and stuck in a certain place – without the physical ability to leave).

I had woken up very early to secure a good spot to watch the Changing of the Guard at Buckingham Palace. It was more than 16 years ago, we were at the beginning of March, there were no stands like there are today (so I had to stand the whole time). I remember it being freezing cold, and I was bundled up to protect myself from the cold. I arrived quite early, and the spot I chose was elevated relative to the palace, but it quickly filled up.

I recall being disappointed – I was expecting to see guards dressed in red with those black hats like Marge Simpson, but I was presented with guards dressed in gray with caps. It seems there are two uniforms, one for winter and one for summer, and in March it is still winter – this information was not mentioned anywhere in my two guides, and it made me furious…

The Changing of the Guard ended, and I had to leave there, but Buckingham Palace is a “far” place from everything else – I chose to exit through Green Park because it was the shortest distance possible (when you have this kind of disability, you pay more attention to these things – calculating distances, finding the shortest routes, etc.).

It was a little past 12:00 when I left Buckingham Palace.

I needed to have lunch, and I had the afternoon free, although I had a scheduled time at the London Eye for 5:30 p.m. I planned to stroll around the Houses of Parliament, near Big Ben, during the afternoon, and take my time to notice (slowly this time) the details of the city’s architecture.

It was the end of my trip, and I usually like to dedicate an afternoon or a whole day to relax from the stress of having to be on time at the places to visit and to wander slowly. I planned to call home and talk to my parents, sit by the riverside and think about the next steps in my life. At that time, I was about to become unemployed and needed an action plan. And trips usually help me “unblock” and come up with ideas.

I started crossing through the park, and I immediately felt tired. I looked back and realized I had only walked a few meters, and I still had about 2 km left (or so I thought).

It was quite cold, and my mouth was covered by a scarf. I decided to take off the scarf to breathe better, and the cold was cutting my lips as I walked.

The fact that people were going about their normal activities amazed me. When someone ran past me in shorts and a T-shirt, I “woke up to life”. I thought, “Look at that tough guy running almost naked while I complain about being cold and tired! Come on, Ana Catarina! Let’s keep going, I thought!

The truth is, I was too heavy, and the energy from breakfast had long run out (I had been standing the whole time). I had many coats, the scarf, and I had a shoulder bag with 2 London guides. I thought: the guides are no longer necessary; I’ll leave them here and continue lighter.

I took out the guides and left them on the bench where I had sat down, and I started walking again. But as soon as I did that, I realized that the 2 books made no difference, so I went back to get them – I usually keep travel journals, and I had written everything in those guides. I needed them, I thought.

At the time, it was astronomically difficult for me to reach the metro station. I would walk and regularly stop at flower beds, lampposts, trees, anything I could lean on, until I reached the next bench. The benches were about 50 meters apart from each other. There, I would stop, rest, catch my breath for the “next journey”.

I feared dying there. I remembered Dr. Fátima’s instructions: “Slowly, Catarina. No effort. You’re prohibited from getting tired.” And there I was, experiencing precisely the opposite. I was in a hurry to get to the London Eye (Because, I forgot to mention… it was already 4:30 p.m., and I was still there, trapped in that body that wouldn’t respond to anything I wanted…).

Finally, after an enormous effort (probably one of the biggest of my life), I managed to reach the metro station. I bought something to eat from the vending machines and headed for the London Eye.

I arrived at the London Eye right on time for my ticket.

And that was my memorable stroll through the park – a life goal I didn’t even know I had to achieve.

Last week, I went to London again.

I used the same guides as before, but this time I didn’t travel alone; I went with my husband and my nephew.

I tried to tell them, but I don’t think I could convey the joy of being in a place I never imagined I would be able to return to.

Green Park?

Of course, I didn’t cross it; there are things that should not be done, that should be “saved for another time”…

I noticed that the distance I thought I had walked was much shorter than my perception at the time – the 2 km back then were nothing more than just about 640 meters…

But this time, I walked about 100 km in 7 days of the visit. Walking, that “simple” act of putting one foot in front of the other… I covered about 14 km daily.

I didn’t climb/cross Green Park by choice, nor did I make any steep ascents, but being able to walk all that was already an achievement!

Was I fine?

Of course not, since the second day of the trip, I have had terrible pains in my feet, hips, legs, back, shoulders, arms, and neck – these pains increased from day to day. One day before returning to Portugal, my mouth (lips and oral cavity) and the inside of my nose exploded.

My body tried to warn me with pains, enough is enough. When it couldn’t, it acted in other ways to stop me – it tried to prevent me from exerting myself by affecting my airways. Nature is truly amazing.

I knew something was going to happen to me.

But above all, I also knew that this time, I wouldn’t die.

NOTE – After my first trip to London, when I returned to Portugal, I fell into a coma.

A disability just like mine

Many years ago, when my disability had not yet been diagnosed, I went with my mother to have an echocardiogram (commonly known as an “echo-cardiac” test). My mother had received a diagnosis at the age of 20 (which I discussed in the post “My Mother’s Diagnosis”), in which Dr. Fernando Padua told her that her life would reach a point where she would need a transplant. (This was in the early 1970s, shortly after the first successful transplant in the world had taken place in South Africa.) However, transplants were not yet being done, and would not be for many decades, in Portugal.

So, we were in the waiting room of a cardiac imaging clinic in downtown Coimbra when my mother was called by an intercom. I didn’t go with her because there were several ultrasound rooms, and I might be called to a different one. Usually, I would go in with her to help her undress and dress again. But as it happened, no one else was called, and when my mother came out, I heard my name on the intercom – the same voice that had called her, telling me to go to the same room.

I entered, undressed behind the screen, lay down, positioned myself on my back facing away from the doctor (I had been born with a misdiagnosed heart murmur, and was frequently examined, so I knew the procedure), and the exam began. The doctor was already halfway through the exam, and I can say that he had never looked at my face, so I assume he had not looked at my mother’s face either (because we looked quite similar physically). He said, always with his eyes fixed on the screen while manipulating the ultrasound probe:

“I don’t know if you know who came out of this room before you came in… is she your relative?” I replied that she was my mother, and he said:

“This is the first time this has ever happened to me – to see two identical hearts. They are exactly the same.”

At the time, I didn’t think about what that might mean, because the heart murmur was as real to me as the restrictive cardiomyopathy was to my mother. So I spent a few more years in my innocence.

So yes, my mother’s disability was exactly the same as mine. But with nuances!

My mother’s diagnosis

My mother’s diagnosis was made by Professor Doctor Fernando Padua, who was following the progress of the disease. She was around 20 years old at the time.

After my mother graduated, she continued to have regular appointments at Santa Marta Hospital to be seen by him.

My mother often recounted a conversation she had with him: “Professor, do you have land? Do you have a vegetable garden?” Upon receiving an affirmative response from my mother (who was teaching far from her hometown at the time, but did have a vegetable garden and went there every weekend), he said, “Then plant cabbages, beans, and potatoes, and make a soup with everything. Don’t eat meat, it’s bad for you.” And my mother followed his advice from then on.

I always saw her eating soup. Soup was her main meal. She always avoided meat. Of course, when it was time to eat meat, she did, but soup was always her priority. Soup and apples. When there were only a few apples left, she would complain, saying “there’s nothing to eat in this house!”

My nephew (soon to be my son) is also like this: he loves apples, and when they’re gone, he gets upset. Going back to the past, we would eat soup and then the main dish, but my mother often just ate soup.

Even after we moved to Coimbra and taking care of the vegetable garden was no longer an option, my paternal grandmother took care of it, and we always had fresh seasonal vegetables ready to make soup.

Once, as she saw her condition deteriorating, and knowing that she lived in a rural area with rivers and streams, he told her to walk in cold running water because cold water acts as a vasoconstrictor and she would improve, naturally reducing swelling. Despite taking medication that did this, the natural way is the best way. And she always followed his advice: she woke up early to have time to go to the river and walk in the cold water, and when she came back from work, she did the same. This must have somehow helped to reverse the progress of her disease because she received a transplant one year before I had the same intervention, even though she had much more serious problems than me.

And that’s the story of my mother’s diagnosis. It was simple. It helped tremendously to have a doctor who was able to make the correct diagnosis on the first try. My diagnosis, on the other hand, was much more complicated.

My own diagnosis

The detection of my disability has as many subtleties as obvious things: Since I started having problems at the age of 21, no doctor had bothered to find out about my family history.

It was a doctor, who, after talking to my mother on his first visit to the intensive care unit (explained in detail in the post “As Televisions”), following my first cardiac arrest, decided to take me and “turn me inside out”. His name was Dr. Nuno Bonito. He would ask Doctor X to perform a certain test on me because he was the best at that test. If someone else did it, he would schedule the same test again with that doctor and come with me to make sure it was that doctor who performed it. This happened twice.

And these were not easy tests. Then he would ask me to have a consultation with Doctor Y, and as Murphy’s Law is the summarized explanation of my life, Dr. Y saw me and said, “No, you don’t have restrictive cardiomyopathy.” So Dr. Nuno Bonito printed out Doctor X’s test, even though the test was already in my file, and scheduled another appointment with Doctor Y. (This story happened in a public hospital, so with the associated waiting times, it took a good 2 years until I had this consultation).

When I sat in front of him and he asked me why I was there again, I showed him the test. I will never forget his face. He read the test, stood still, and stared at the test for a long time. At a certain point, it was clear that he was no longer reading because I had already read it, and the test was upside down…

Then he took a deep breath (I had never heard such a big breath) and exhaled as well, but not as forcefully as he had inhaled (I was fascinated by his breathing…). After this endless time of one breath, he looked at me again, and his posture had completely changed. That’s when I realized that the thing was really serious.

Meanwhile, back at home, I knew that having restrictive cardiomyopathy was horrible. My mother had this condition, and I knew that it was not a good thing to have.

Little did I know that I had always had it.

Not satisfied with what I knew (the internet did not specify that it was restrictive), I called Dr. Regina, a doctor who was very friendly with my parents, to tell her about my last consultation. I asked her what it was like to have restrictive cardiomyopathy, and she didn’t tell me, but she showed up at my parents’ house shortly afterwards. She opened and closed her hand rhythmically, about 4 or 6 times, to simulate heartbeats, and said, “This is a normal heart.” Then she put her hand more or less straight, and began to tremble her fingers. And said, “This is your heart.”

And it was that Dr. Y who took me to Dr. Fátima Franco. Not without wishing me good luck first. The story continues… in another post.

And they were not easy exams

Some of the most difficult exams I have taken were requested by the best doctors. In this post, I will mention some of these exams and provide insights and needs to improve patient treatment or prevent worsening of their condition.

Transesophageal echocardiogram (I think that’s how it’s spelled) – It is essentially a semi-endoscopy using an ultrasound probe that needs to reach the heart and visualize it from different angles. We have to remain awake and rotate on the examination table so that the doctor can obtain better views of the heart. It induces constant vomiting, and we feel the “thing” rotating and moving inside the chest, causing pain when we move. It is a kind of endoscopy (which I have also undergone without anesthesia), but it takes longer and is much more painful.
Breathing inside a vacuum box – Yes, the whole body inside a completely closed and sealed box. It was horrible when the vacuum was activated, and I inhaled, but nothing entered my lungs. All kinds of thoughts go through a person’s mind – What if there’s a shutdown or a power failure, and the generator doesn’t start, and the door doesn’t open, and I die here? It is a terrible way to die, and I almost felt it. Information about what to expect in such an examination should be provided to the patient. This was one of the most difficult exams I underwent, and it greatly affected me psychologically. It made me contemplate the potential end of the world and the speed of negative thoughts. Today, I know that the end of the world is not necessary for such experiences. When my nephew grows up, if he wants to know how his mother died, I will post here about an experience that was a million times worse than dying without oxygen.

Moving on:

Bronchoscopy – I underwent this examination when I had pneumonia in Italy. I had to wait for over a week for a tube from the pediatric hospital because the normal tube couldn’t be inserted. Even with the tube, it was difficult, but not as difficult as the same examination I had in Coimbra, at the HUC (Hospitais da Universidade de Coimbra). I mentioned the tube to them, but I wasn’t heard, and it was extremely painful. The tube goes from the nose to the lungs, and we have to be awake so they can detect if we are feeling unwell. They should insert a liquid because I felt like I was drowning. After the examination, as I was leaving, a man who was entering asked me if the procedure was very painful. I told him it wasn’t. I thought that by the time he finished, I would already be in the ward. However, they took a long time to come and get me, and I encountered the man leaving, who scolded me saying, “So, the young lady told me it didn’t hurt at all, but it was horrible! They stuck a tube down my nose, and I had to breathe liquid!” I was still recovering from the procedure, and I had to get upset with the man scolding me.
There should be information about the expected level of pain for each examination, and this information should be communicated to the patients undergoing them. Instead, we have to sign a document indicating our authorization for the hospital to perform the examination. It shouldn’t be a person who is not yet feeling well who informs the next patient.
Lung biopsy – It is horrendous because they remove pieces of the lung, and then the lung bleeds, and when we breathe, we almost drown in blood. When I underwent this emergency examination, I was already at my limit, and I cried. I don’t remember if I started crying right away or due to what I’m going to tell next: While I was crying, my ability to breathe diminished, I coughed up blood, and when I inhaled, more blood entered my system, making me cough more, and with each cough, more blood came out… It felt like a slow death by drowning in one’s own blood. I cried out of fear, realizing that I was at my limit (and I really was) and out of pain. I thought I would die, but I refused to do so without assistance. I was in the imaging corridor, and there was no one around. I was waiting for someone to come and take me to the ward. So, I had to control myself and stop crying.
Another hospital need: There should always be someone available to collect the patient before they are discharged from observation.
Cardiac biopsy with catheterization, when the heart one has developed nerves – Normally, after a heart transplant, the heart becomes “denervated,” meaning it loses its nervous connections and, therefore, its ability to feel pain. I am such a remarkable person that I managed to develop nerves out of nowhere (it happened after my sister died, and I started experiencing intense heart pains, which I thought were panic attacks). I had already undergone dozens of biopsies without any pain. But since I developed nerves in my heart, fear takes hold of me when I have to undergo the examination. It feels like a shock from a power substation. The examination involves extracting pieces of the heart using a kind of “crocodile mouth” (a clamp with “teeth” at the end of a tube) that is inserted through the groin until it reaches the heart. Nowadays, while biopsies are done through the groin, catheterization (which is performed simultaneously with the biopsy) is done through the wrist.
There was a time when both examinations were done through the groin. In my perception, it hurt much less because I cannot live without my right hand – eating, writing, picking up things, holding ourselves up when one leg hurts… and it’s extremely difficult to clean oneself.
Stress test – When our frailty is such that we can’t take a shower without fainting, can’t sleep lying down, can’t stand, and don’t have the strength to have a bowel movement, why do we have to undergo a stress test? And why are we told, “Just hold on a little longer”?
Here, the blame was solely mine. I thought I had more strength than I actually did. If I had told my doctor that I couldn’t do it, she would have listened to me.
Mammography – I understand that it is an examination that should be done regularly. But when I had pimples instead of breasts (because I was extremely thin), it was excruciating when they pulled my non-existent breasts to perform the exam. Today, thanks to cortisone, I have decent breasts, and they flatten them between two plates. It’s terrible.
With the new technologies, wouldn’t it be possible to use a magnetic resonance imaging machine or perform a CT scan on the breasts to achieve the same result? It’s my dream to stop having mammograms altogether.
Colonoscopy without anesthesia – for obvious reasons.
It should be prohibited, and heavy fines should be imposed on those who perform this examination without the patient being sound asleep.

Arterial blood

Before oximeters existed, and even after their existence, withdrawing arterial blood was the most reliable way (I think it still is) to know the percentage of oxygen in the blood. They started measuring my arterial blood after my first pulmonary embolism (PE). Since then, my lungs began to suffer, so much so that every year I had pneumonia, which left me hospitalized for a minimum of 2 months, during which this collection was mandatory.

As arterial blood squirts out, we have to press down with all our strength to stop the bleeding. The consequence was that I had a black wrist pulse. It was not pleasant, especially because I was pricked practically every other day.

After my first hospitalization since the PE, there were days when the blood was red one day and black the next. I never understood why these fluctuations happened, and I suspect they didn’t tell me so as not to worry me. But I need to know what I’m dealing with: I prefer to joke about my defeat than about ignorance. Because I can’t joke about what I don’t know…

I have scars from those pricks. And terrible memories…

Since I had my first cardiac arrest, Dr. Nuno Bonito was the one who followed me in internal medicine. He was one of those who told me everything, for better or for worse, he didn’t spare the sordid details. I think he was the first doctor who did that to me. Of course, I immediately started liking him. When I didn’t understand a word of the medical terms he used, he explained them to me with examples:

One day, after saying something unintelligible to me, he explained that I had the lungs of a 90-year-old who had smoked his whole life.

That doctor wore a monster watch, huge in his left hand, the same hand in which he also wore a very thick wedding ring. I joked with him, saying that in a few years, he would have back problems because of the weight he carried on his left hand, but maybe it was that weight that made him withdraw arterial blood like no one else. He pricked me, and the blood came out right away.

I remember that the blood was dark, almost black, at the beginning of the hospitalizations, which left him with a worried face. Towards the end of the hospitalizations, when the blood came out red, his expression became lighter.

Blood should always be red.

Do you remember those anti-heroes/villains who always have black blood?

I saw myself like that, and perhaps that’s why I didn’t think highly of myself; I thought I belonged to evil. It seems that black blood contaminates us…

Vulnerabilities of going to the dentist

“I cried for what I had and what I didn’t have, and even though I didn’t understand why I was feeling that way, I felt such a deep sadness that I thought there was no way out. The reason? A visit to the dentist that went wrong.

As a handicapped person, I don’t go to normal dentists – I can only go to the hospital, because if something goes wrong and I have bleeding, only the hospital has a certain type of gel (supposed to be very expensive – so expensive that regular dentists or private clinics don’t have it on hand) that can stop it. The procedure is complex, because parking at the hospital takes roughly the same time as the evolution from Neanderthal to Homo Sapiens Sapiens. The number of white hairs that I have on my head is proportional to the number of hours that I spent looking for a parking spot in the hospital. I could just wake up at 4:50 in the morning to find a spot, but I am too lazy to do so.

Then, when I leave home, I have to consider the time it takes me to park, because I have to take an antibiotic with 2000 mg of the active substance of antibiotics (some “micin” or another), exactly 1 hour before the appointment. If I arrive earlier, I have to wait until that time has passed to have the procedure done. In other words: I have to be good at math and master the art of divination to go to the dentist.

And there was one day I went to the dentist.

It should be noted that at that point, I no longer had anyone in my family who loved me “no matter what” – I no longer had parents, my younger sister had tragically died about 2 years ago, and I, who was not old (I was 42 at the time), felt overwhelmed. Everything that happened to me suffocated me.

I parked and went to the dentist. As I have advanced divination techniques, I was called immediately upon arrival, since the antibiotic had already been active for 1 hour. Inside, things started to go wrong from the beginning.

My dentist (who knew all my circumstances, including my fear of dental instruments) was leaving. She told me she should already be in Leiria and that she had to leave “now,” but that she had two substitutes. I should have left right there, at that moment. But she looked at me and reaffirmed: “Two!” She said it in a tone that suggested that two would be better than one. But they weren’t. Two inexperienced dentists don’t do the same thing as an experienced one does.

In this case, they do more: Two inexperienced dentists, with access to drills, make more and larger holes than an experienced one. Fortunately, my mouth “only” needed cleaning because I didn’t have any cavities.

But the dentist started off badly. He started by cleaning my gums, not my teeth. I audibly signaled the pain I was going through, until, almost in tears, I raised both hands and said, “This isn’t going well, maybe I should leave.” But he pushed back with, “Just when we’re at the part where you have the most tartar?! If you stop now, your mouth will feel uneven,” as if it were unthinkable.

Meanwhile, a nurse arrived, who immediately warned the doctors that I was afraid of that place, which wasn’t a total lie. The only thing I liked about the dental clinics was the slightly mentholated clove antiseptic smell, nothing else. I hate those torture instruments.

Once, I was in so much pain from a root canal that the doctor asked if I was going to bite her. It wasn’t my intention to do so, I was just slightly closing my mouth because I thought it would reduce my pain, but that reference to biting gave me ideas.

I became immediately occupied with imagining the ways I would bite the doctor and her different reactions to different types of bites, which actually led me to suffer less.

He (the doctor) assumed that the reason the consultation was not going well was solely my fault, and continued to cause damage in my mouth until the drill went from my gums to the inside of my lips.

It passed once and hurt my lips in two different places. It passed again, another hole, but then I spat out that thing that holds the tongue and made him stop what he was doing, and said, “And now, I’m leaving. You’ve hurt me during the consultation, so I’m leaving.” Despite his objections, that’s what I did.

As I was leaving, my lips hurt, my gums hurt, and I started to feel like the most miserable person on earth, and I started to cry. At first, the tears were disguised. They fell without any sound – I hardly ever cry, but I’ve gotten used to crying like that when it happens.

As soon as I got in the car, I started to sob. I wanted to get out of there, to not see the hospital, to not be there, to not exist. I wanted a meteor to fall on my car and crush me.

I turned on the car, the fog of tears in my eyes made it hard to see clearly.

There was a fog on me, but of a different kind. It was the weight of pain – my sobs were accompanied by deep groans, and the exhaustion from the long, loud exhales made each sharp inhalation sound like a wheezing search for air. This noise didn’t go unnoticed, and soon I realized people were passing by the car and slowing down – I figured they were trying to see what was going on.

Not long after, the windows were fogged up from the condensation of my breath.

Today I think I should have stayed there crying more. I should have done it for hours. I owed days to crying, and I should have paid the debt there: I needed to cry all my pains, but unfortunately, it was the feeling of embarrassment (what if someone knows me/knows my car?) that made me stop. I didn’t cry everything, but I cried a lot – immensely, actually. In the end, I had to turn on the AC of the car so that the windows would defog. At that time, I felt stupid for crying because of some wounds on my lip and gums, when I had already gone through strokes, TIAs, cardiac arrests, a coma (more if we count my mother’s comas), a transplant (two if we count that my mother’s transplant cost me more than my own), and a bunch of extremely invasive and complicated tests that I had done. Plus, the deaths of the people I loved the most, in which I cried little or nothing. Days later, in psychotherapy, my psychologist said it was a trigger. It could have been a smell, a memory, seeing something that I don’t remember but was impactful, to have caused that reaction. I confess that I had some doubts, and at the time, I needed more concrete answers and action guidance, but I didn’t get them. I only understood the existence and need for that cry some time later. Perhaps it was the need to vent all the negative emotions that I had been holding back. The “emptying of the cup.” That makes much more sense to me. Or maybe it was those triggers after all! Blessed triggers. Damned social preconceptions.

Resilience

Resilience means sticking it out when things are tough, facing and getting through challenges so you can deal with them over and over again. Of course, this state tends to be trivialized by ourselves when we spend too much time in this mode. It even becomes neglected by us. Is that bad?

No, it’s fantastic to forget that we are disabled.

The resources to overcome it will transform over time or depending on circumstances. Currently, my way of dealing with bad circumstances is humor. I specialize in sarcasm (although, according to psychologists, this ends up being a reaction to trauma). But to hell with trauma. What I want is to laugh and make others laugh!

But I have been through situations so bad that it was impossible to laugh, very difficult situations. I have often felt helpless, many times with reason, and fortunately few times, seemingly for no reason at all. I have felt myself fall and hit bottom. I even wondered if I would ever be happy again, but time and our own change, our own growth, transform everything.

Because time doesn’t help ease any pain, time allows us to grow around the pain or use it as support. And there is no better growth than that. I see it in myself and in my nephew, who tragically lost his mother when he was seven.

I’m not someone who cries a lot. I always thought too much about things and rationalized too much instead of crying. I cried little when my parents died; I felt a tremendous emptiness and was stunned by it. When my sister died, I was too concerned about my nephew to cry for my own pain. So I cried when I went to the dentist. I cried when my mother was going for a transplant and was literally dying. I cried during my first bath after waking up from a coma. When my nephew spent a night in Faro Hospital after falling off a bench and hitting his head on the ground while we were on vacation, I cried when we left the hospital.

The other day, I cried watching two movies—one at home and the other in the cinema (which never happens—I tease my friends for crying in movies)… These “cries” I’m talking about are compulsive cries, where I become breathless, with extreme difficulty breathing and pain throughout my body. It’s an act of total loss of control, not just tears that come out of my body, but also anger, pain, overcoming, sadness…

The posts in which I will talk about my vulnerability will have this word in their title, associated with the situation in question. They will be posts in which my vulnerability helped me to let out all the bad in me. Ok, not everything, because the bad still lives inside, but a lot…

Vulnerabilities of a bath

It was a very difficult bath. It was before my heart transplant, and I had just woken up from a coma of over a month:

After my father had come to see me (very happy – to mention on another post), they transferred me to Cardiology A – which was not “my” cardiology…

I was in a room with 6 other beds, which was good for me. I had never liked being alone; I always felt like I could help those around me – sometimes I did.

I asked the nurse if I could take a bath, and she told me, “Baths here are only in the morning.” So, I asked, “Can I take a bath tomorrow?” Her response was, “We’ll see.”

When a patient hears a “we’ll see,” they immediately sense a disguised “no.” There had been times before when I fell into that trap, but this time was definitely not going to be one of them.

So, my focus throughout the night was to get out of bed and prepare myself for a bath the next day, which meant sitting in a chair.

The lights in the room went out at 9:00 PM, but in the ward, they stayed on until midnight. From 9:00 PM to midnight, I managed to take a nap.

But then I realized the reality when I started moving. Any movement was a challenge. I dragged myself across the bed to get the chair, which was at the foot of the bed. I moved it to the front of my nightstand on my right side. Just that took about an hour. Then, I had to position myself to be able to sit down. I tried to do it facing the chair, but I couldn’t, I couldn’t turn around. So, I hoisted myself onto the bed, turned around (please note that all these steps were done with great effort and took a considerable amount of time because after each movement, I had to stop to catch my breath), and very slowly started sliding, facing away from the seat. I realized that even though I could get on my feet, I couldn’t take steps, nor did I have the strength to sit down (I couldn’t control the strength in my knees). So, I managed to pull the chair back a little – just enough so that when I leaned back, I wouldn’t fall with my backside against the chair’s backrest, which would make me tip over and hit my head on the floor.

After all the calculations, I managed to sit on the edge of the chair, even though the bed was constantly moving, and I had no stability while holding onto it. Then, I tried to settle into the chair and find the best position to rest leaning on the bed.

Meanwhile, I looked at the wall clock, and it was around 4:00 AM. I thought I could sleep for another 3 hours.

As soon as I lay my head on the mattress, I fell asleep.

I woke up around 7:00 AM, with many nurses and a doctor surrounding the patient in the bed to the left of mine, right next door. She had passed away during the night.

She was a strong lady.

These things were always tough for me because I was the one who could press the call button. In that room, I was the most lucid person, and I felt responsible for everyone else (I always wanted to be near other people – often elderly ones – so I could help, to feel useful at a time when I had no utility).

Being so occupied that night prevented me from hearing any signs that the lady was really unwell. That’s why I didn’t call anyone. I immediately thought of my selfishness…

I was mentally berating myself when one of the nurses asked me, “What are you doing sitting here?” and began calling a colleague to help me get back into bed.

I replied, “I’m not going back to bed because I need to take a bath.”

They deflected, and they were starting to undo the mess I had made during the night (sheets and blankets) to put me back in bed and give me a bed bath. I repeated what I had just said and added, “I haven’t had a bath in 2 months (exaggerating). I’m not leaving here. I’m taking a bath today.”

“Oh, but we don’t have the means to take you to the bath; you’ll have to take a bed bath.”

I had spent nearly the entire night getting up, and this lady had passed away without me hearing. So, I couldn’t call anyone, and now I couldn’t take a bath? I thought. That’s the last straw!

I said, very calmly (I didn’t even recognize myself!), “Every ward has the means to take a person to the bath (I had spent years in different wards, and as an observant person, I knew that). When I left the intensive care unit, I asked the doctor if I could take a shower (true), and he said I could. So, either you give me a bath willingly, or you give me a phone, and you’ll be forced to do it (I was a bit arrogant, but sometimes you need to be)…”

The “means” were just a shower wheelchair – a wheelchair made entirely of rigid plastic, with a seat that resembled a toilet. And someone to take me to the bath.

They had it, of course. After the customary question to the doctor, they put me in the shower chair and took me to the bathing area. I knew I’d be one of the last to take a bath, but I knew that my insistence had a price to pay.

Baths, after all these things happened, are truly cleansing. I think they make up for everything you’ve been through – they wash away everything: memories, and it seems like everything becomes lighter.

The nurse washed my hair, my back, my legs, and my feet. There was a handle on the wall that I grabbed, and I managed to stand up relatively easily (I was surprised by how easy it was, but the truth was, I was so thin that even a child could have lifted me). I showed her that I could stand and sit in the chair, and I asked her for a few minutes to finish washing me. The chest, neck, face, armpits, belly, and intimate areas still needed to be cleaned. I convinced her with, “I know you have a thousand things to do. I can do the rest. And if I need help (I looked at the call button, which was within reach), and I made a face and gesture pointing at the call button, accompanied by ‘tada!’ and laughed. She asked, “Are you sure?” I said, “Of course!”

The nurses and aides don’t know the precious resource they have here – I’m one of those people who can be dying, but still do everything alone, I thought to myself as she headed for the door.

Before opening the door, she turned and said, “I’ll be right here, if you need anything, you don’t even have to use the call button.” I asked, “Two months without a bath like this, can I have a little more bath time, please?” And I made a face as if I were pushing it. Thank goodness for the faces I make because she laughed as she left.

As soon as she left the bathroom, tears that had already been welling up (hidden by the water falling on my face) burst out… I cried, at first, without doing anything, just leaning against the wall. I knew it wasn’t a despairing cry like the ones I had experienced before. It was a cry of relief, of acknowledging everything I had been through. I had clearly hit rock bottom – I had touched death. It wasn’t the first time, but it was the one that made me feel the most powerless, like I was nothing. The other times I had brushed with death had been too quick but pleasant (I’ll tell about it in another post).

After crying out all these things, with some restraint because there were people nearby who could hear me (I could hear the staff cleaning the bathing area, so the sound of my crying was easy to guess if anyone cared to listen), I began to wash myself. I washed my hair, face, and neck again. Then I moved on to the armpits and chest. When I washed my chest, I remembered waking up from the coma and thinking I had already had a transplant, and even though there was no scar, I thought it had been a laparoscopic transplant. Even as I continued to cry, I laughed at my own madness. While washing my belly, I thought of the other Ana, the one who was next to me when I was in a coma. I cried even more, thinking about her life and how lucky she was to be able to give life to her children. Then I washed my intimate areas and remembered when I thought I had been pregnant, but it turned out to be the other Ana (I’ll tell that story in another post). I cried for the necessary time and was thoroughly clean.

When the nurse opened the door, tears were still streaming down my face.

More than my fingertips, my hands were wrinkled from being exposed to water after such a long time without touching it. I told her, “It’s almost done.” She entered, I turned off the tap, grabbed a towel, and dried myself. Then she helped me where I couldn’t reach, helped me get dressed, and I cried again. Silently. I had spent years taking bed baths given by nurses because I wasn’t allowed to get up, and none of them had been as difficult as this one – it was hard to accept this service. It was the first time I needed someone to dress me and help me take a bath while I was standing and apparently functional. Other nurses would have asked me what was wrong and tried to make it seem less dramatic. This one didn’t say a word.

“Do you think we can leave now? We just need to clean this shower,” she said. I nodded, tears still flowing.

She took me back to the room, helped me lie down, brushed her hand on my forehead, and said, “See if you can rest.”

Without a doubt, the best nurse in the world.

I thanked her, my eyes filled with tears, turned to the empty left side, and continued to cry, knowing it would soon be occupied.

PS: While writing this post, I cried from the beginning of the bath until the end of the text. And I kept crying for a while.

Holidays, Faith and Horrors

The beginning of my holidays was marked by a gathering. It was fantastic, except for the fact that on the morning before that lunch, I had tried to trim my toenails and had only managed to do it on my left foot. I was too tired to do the same on my right foot (the story of my life…).

I don’t have faith that I can accomplish this task all at once, but I have to do it in the hours or even days to come.

Instead, I spent the entire vacation (17 days) with the toenails on one foot cut and those on the other foot uncut…

I think I was fortunate that no one seemed to notice that I hadn’t cut the toenails on one foot. If they had noticed, it probably would have affected my comfort for the rest of the vacation.

My vacation coincided with the Pope’s visit to Portugal for the World Youth Day.

Since I only go to the beach after 5 PM (transplant recipients take medication that can induce cancer, and when other factors are involved, extra caution is necessary), I took the opportunity to watch various live broadcasts with the Pope.

I adore this Pope; he’s a perfect leader, a servant. And Pope Francis does it with inspiring devotion.

Moreover, he manifests the inclusion of everyone in the church. I felt like I had been excluded for a long time because my first priest used to say that we are sinners from birth.

I never understood how a baby could be a sinner, or why we could all take communion as long as we had received our first communion. I didn’t understand how a mass (the first communion, for me, was nothing more than a mass – in fact, it was more boring than a mass because it tended to last longer), was supposed to absolve us of all the sins in the world.

In other words, despite loving communion wafers and eating them by the handful when my grandfather was a sacristan (when they weren’t blessed yet), officially, I avoided them like the plague: I always thought that the act of taking communion was unthinkable for someone as sinful as me. I confess that when I was little, I only wanted to take communion if I confessed before (and for that priest, all sins were abominable). Since those occasions were rare, I took communion only because if I didn’t, the catechists would ask me why I hadn’t done it, and I was afraid to tell them that I had eaten a candy secretly from my mother, or that I had fallen and hadn’t told my father for fear of reprisals, or that I had lied to someone, and therefore, I couldn’t take communion. And so, I did it, with the certainty that I was committing a greater sin than if I didn’t. I assumed that sin to such an extent that today, I can’t take communion. I only do it on rare occasions when it would be socially reprehensible not to (for example, at my wedding).

Yes, I’m a hypocrite.

That’s the exclusion I felt from the church from an early age.

I left catechism, and I rarely took the communion wafer again.

Decades later, I was with my nephew, and one day he asked me if playing was a sin (my parish priest was of the same kind as my first priest). So, I decided that I had to get him out of there as soon as possible. I made a point of attending his catechism classes (fortunately, the catechists approved of this habit) to tell my nephew the truth. We stopped going to mass (to the great joy of the child), and the main focus was his baptism, which would coincide with his first communion. Then, the void (which eventually filled up when he went to a Catholic school).

Pope Francis issued this warning to the priests, which pleased me very much, although it didn’t remove my trauma; perhaps it can change some minds. I have faith in that.

Of course, today, I believe mainly in the goodness within us, not in the goodness obtained from a specific place. I know that the invention of the church was made to take the divine within each of us and allocate it to someone else in a specific context so that we could become “controllable” (although evil has remained with us). For this reason, and for other reasons, little by little, I stopped believing in the God of the church because the church itself and its members made me disbelieve in it.

So what do I believe in? I believe in myself and the vast number of good people out there and their inner greatness, which is so great that it overflows with kindness and well-being for others.

Sometimes I can’t believe that there are people as good as the ones I meet and interact with daily, especially in times of danger and panic, like what happened one of these Fridays at Praia do Barril. Being an island (part of the Tavira islands), it’s obvious that access is difficult, and institutions (like 911) didn’t seem to care about my nephew’s condition (he was in a state of severe dehydration, vomiting continuously, which later turned into convulsive vomiting and diarrhea, almost fainting).

It’s terrible to see a child in that condition, especially when it’s your own child.

The speed at which doctors, nurses, medical students, and random people came to help was almost immediate. And even though my nervous state was not suitable for answering to everyone who approached me, I recognized them all and offer them my heartfelt thanks.

My heartfelt thanks go to all the lifeguards at Praia do Barril, who were tireless and quickly and efficiently evacuated him from the island. They didn’t spare any effort, consumables, or equipment in trying to find a reason for why he was in that condition (normal blood sugar, low blood pressure, and high heart rate). My nephew is very thankful.

He thanked them when they took him away on a stretcher. He said he had never felt so good in that moment, even suspecting that he might be in limbo (I once told him what it felt like to die, and he referred to that memory to categorize what he was feeling). I told him no, that if he felt so bad, any improvement in his condition would make him feel like he was in heaven.

At the end (after we had crossed the island), when I had given everything to my husband (who had gone to get the car), I thanked a lady who gave me a bottle of water, which was a lifesaver at the moment. At that time, a pediatrician started asking Dinis questions, even though they were tiering him and annoying him, I recognized them: the answers indicated that he was conscious and oriented. She was very nice. This pediatrician was called by a medical student, also tireless but asking more technical questions. Good job, young lady. Empathy is very necessary when dealing with patients. You’ll go far.

I didn’t get anyone’s name; the situation and urgency didn’t allow for it. But I am deeply grateful to all of them.

Finally, but not least, I thank the friend who never left us, never. He bathed my nephew, and I imagine he got diarrhea on his feet, like others (my flip-flops went straight into the trash, just in case, because I’m a germophobe…), Marcos.

In the end, he accompanied us to the hospital. He was always by my nephew’s side. While I wandered around like a headless chicken, not knowing what to do, Marcos was a rock, guiding me through the chaos. His calmness, attention to detail, and availability were indispensable for everything to go well.

Ambulances in a crisis like this? There were none. They refused to come and get the child because, as they indicated, the “condition” presented didn’t warrant the use of such a resource.

It didn’t warrant it? What nonsense! The child could hardly sit up without either vomiting or fainting. If he were the child of someone important, there would have been three ambulances waiting at the scene already… What a messed-up country!

At the hospital in Faro, in the pediatric emergency room, the lack of access for a stretcher to pick up the child from the car was a clear indication of the lack of inclusivity (a hospital where stretchers couldn’t enter or exit? Does that exists in a so called 1^st world country?!). I was barefoot, in a panic, in an emergency room, yelling for a stretcher, while the security guard was getting ready to kick me out…

Finally, at the end, he came out, quite weak, and had a some days to recover.

Then came my “fanico” (Portuguese word for when something goes wrong) as usual (something less than pleasant always has to happen during every vacation…). On the beach, I ventured into an area adjacent to Arrifes Beach with my nephew, full of seaweed and rocks that made it impossible to see where we were stepping. In an attempt to enter the sea, I almost fell (I braced myself with my hands on the rocks to prevent that from happening), and when I removed that hand from the midst of the seaweed, my pinky finger was bent 90 degrees outward.

As I cursed profusely, I submerged my hand in the water (I knew it would hurt, and the water was quite cold, plus I didn’t want to see the mess I might have made). I managed to straighten my finger again (although it doesn’t mean I put it in the correct position because it’s visibly crooked). We kept it a secret from everyone until it was no longer possible due to the pain and swelling. I treated the condition with a good dose of “endurix” and a lot of ice – I managed to avoid hospitals and such. Who cares about the finger? It’s just a pinky; the guys can do the dishes from now on. I confess that I was afraid: if it was broken and they put plaster on it, I wouldn’t be able to go in the water for the rest of the vacation. And I can only bear all year to be in the water, on holidays.

My nephew told me that I said all the swear words he knew (I remember, after we laughed about it, I got worried because I remembered saying all the swear words I knew, but how did he know all the swear words I said? He is 13!).

In the end, after all the stress and regular days, I finished my vacation almost the same way I started: a bit more stressed and tiered, a pair of new flip-flops, and one foot with trimmed toenails and the other with uncut ones.

Thank goodness for the regularity of life.

The Laws of Thermodynamics applied to me

One thing that is always difficult for me is the act of taking a shower. Because I have to check if my blood pressure is compatible with the act and if I have enough energy to do it.

If my blood pressure is low, it’s better not to even get up.

Many times, I almost faint in the shower (since after the transplant, this kind of pre-fainting is very frequent. Before, I used to faint for no reason at all) – my doctor says it’s a combination of low blood pressure, which, with the vasodilation effect of hot water, tends to plummet. I’ve had to leave the shower and crawl to bed many times, all wet, to avoid fainting completely. Another trick is to take a cold shower. In the summer, it’s easy. In the winter, not so much…

In fact, I can count on one hand the times I actually fainted (lost consciousness). I detect a pre-fainting sensation like no one else and act accordingly: I crawl with my head lower than my heart to a place where I can lie down, and I elevate my legs higher than my head. That’s the only way I can prevent a complete faint.

The other day, I completely fainted after the X-ray because I had to undress and put on the gown, and then walk about 5 meters to the waiting room for my appointment. I sat down and asked someone to call for help. Nurse Marta came with a wheelchair shortly after. I managed to get into the wheelchair, but I don’t remember turning the corner to enter the ward. Nurse Marta said I even talked to her after entering the ward and that she had to hold me up only when we were at the counter. A clear sign that my brain is wired for talking, not fainting.

These pre-fainting episodes happen whenever I’m weaker and have to exert any effort with my arms or whenever I have my arms above my head: washing my hair, hanging clothes, fetching dishes or anything from the top shelves, lifting weights (pots, the computer, the food tray, for example, are a risk), changing shoes (that’s why I gave up changing work shoes: I put them on once and keep them on all day, no matter how dirty or smelly they get), and so on.

As for energy, it depends – some days I wake up with just enough energy, and during those times, I can take a good shower, get dressed, although putting on shoes is a struggle because my energy is almost depleted… on those days at work, I try to visit the construction site at least once or twice and spend the rest of the day in the office.

Other days, I can’t even take a shower, so I wash my intimate parts in the bidet to minimize movement and effort. Getting dressed is complicated, and putting on shoes is a Herculean effort, and if I manage, I only go to the construction site once, at work.

There are also days when I can’t even do that. On those days, my husband steps in: I wash myself, he dresses me and puts on my shoes, and at work, I stay in the office all day.

And then there are fantastic days, the days when I’m at my best – on those days, I take a shower, get dressed, and put on my shoes with ease. At work, I’m always at the construction site, and when I get home, I still have enough energy to take a shower and wash off the construction dust from my body. This would be my ideal life because if I take a shower at night (which rarely happens), I don’t need a full shower in the morning.

It’s a difficult logistical puzzle:

On Sundays, I reserve time to take a shower at night so that on Monday morning, I only have to worry about personal hygiene. On Mondays, I visit the construction site 2 to 3 times. If possible, I go on Wednesday as well.

Since I don’t have the energy for a nighttime shower anymore, on Tuesday, I take a shower and visit the construction site once or twice.

By Wednesday, I can’t take a shower anymore, just wash up, and I only go to the construction site once.

On Thursday, I’m dragging, and I don’t go to the construction site (helped by having meetings).

Fortunately, I don’t work on Fridays. If I did, Fridays would be a cardiac arrest day.

If Sundays are complicated, it changes the whole plan and completely delays my schedule – by Wednesday, I’m ready to drop.

My illness doesn’t align with schedules but with goals.

I don’t work on Fridays, and as a result, my salary is based on the 4 days of actual work. However, I meet all the goals of someone working at 100%, which is not fair for what I receive. Not fair at all.

Why doesn’t the system value efficiency over the time spent at work, often doing something just to pass the time? This is one of the things I hate most about this system.

Activities after work are out of the question: I will never have a full life like hobbies or things that normal people do because when I finish work, my day ends there. My level of exhaustion doesn’t even allow me to do laundry or remove stains from clothes, let alone take laundry off the line or set and clear the table – these tasks have to be assigned to other family members.

My house is always a mess because I don’t have the energy to do anything else, and my husband, who has hobbies, cooks dinner. The rest? The rest can go to hell! It’s a messy house, but fortunately, a much-loved one.

My doctor still asks me to try to walk in the evening (to help unclog arteries), but walking when you’re already on the brink of collapse is not the right thing to do…

And then I suffer from insomnia, which is another energy drain. If I see that I’m going to have insomnia on a night that will set me back for the next day, I have to prepare: between 6 and 7 pm, I add another medication to my extensive list of medications (which fills an A4 sheet), and I entertain my nephew (the medication I take is an amnestic that makes me sleep but not before doing a lot of clowning around).

And in the summer, it’s much worse because the body uses energy to try to balance body temperature. Cardiac patients hate the heat. In people like me, everything changes with heat: fatigue increases, blood pressure goes haywire, heart rate rises, the heart becomes overloaded, working mostly for the brain and forgetting less important functions, leading to fluid retention, which prevents us from breathing properly, and stomach problems become commonplace (because digestion is an energy drain and unnecessary for the heart). It’s a vicious cycle. Every summer I manage to endure is a victory for me. I still work in the summer, but I’m aware of how much I wear myself out and how this wear and tear deteriorates my health.

In conclusion, managing energy is very complicated for someone like me.

The good thing in all of this is that I have amazing doctors and nurses who are there for me when needed, and the most fantastic husband in the world who always helps me. Oh, and a nephew who records my craziness to tell me about it the next day, making me even more tired from laughing.

It’s tough being me…

Friendships

Fortunately, I believe that I have my fair share of friendships. I want to believe that I have the friendships I deserve, and that makes me happy.

Once, I thought a friendship had ended. And it wasn’t just any friendship, it was “the best,” “the forever” friendship. But the truth is, those kinds of friendships never really end. They cool off, drift apart, stay in the same place when we have to move on because our interests change, and they no longer align with the interests of that friend.

And that’s not a bad thing, because it’s through moving up these levels that we evolve.

The level above doesn’t have everything that the level below had; it’s empty, and we have to build it. In that construction, we need to see if what we bring from the level below is useful for building the new one.

I took that friendship with me, but I realized it was more of a hindrance than a pleasure because it was taking up too much time that could be spent on essential things. On days when I would look back for phrases or actions to justify leaving that friendship behind, my self-esteem would plummet, and I would question myself a lot…

Today, I recognize that leaving the friendship where it wanted to be was the best thing for me because I still have a friend—not as close as before, not as present as they once were—but the memories are all there, and the gratitude for having that person as a friend and for the moments we shared is so great that this friendship can never be erased. Never.

It was extremely difficult for me to make the journey back to leave that friendship where it wanted to stay, and I can say that I only managed to do it through psychotherapy, which stirred emotions in me in unimaginably sad ways (at the time, I was going through a tremendous process, being forced to change and leave many things behind all at once). And in those comings and goings, I often found myself wondering if I really had friends, or if friendship was just a disguise so we wouldn’t feel so alone in life…

As I moved back and forth, I noticed that a big instigator of these doubts was, usually, Mr. Facebook. Because the simple act of scrolling down would bring me face to face with a party or some gathering where “everyone” was there, and I wasn’t even invited.

And then “it” wouldn’t stop there. I would keep looking and checking the perfect lives of those I knew (and who had gone to the party): vacations here and there (usually in extraordinary places), confirming what I had seen a few weeks ago on LinkedIn, that one of them had a new job, an amazing one, and I would start to feel like absolute crap, with a completely insignificant life.

The truth is, I also sabotage many situations… I’m either tired or in pain, and I use those facts as excuses not to go to gatherings with friends, when, in reality, I would be just as tired and in pain even if I stayed home. It’s not like staying home would make me less tired or in less pain… And this, coming from someone who used to be everywhere at once (like in the movies), despite everything I was feeling and going through (which, usually, wasn’t good stuff).

That reflection came during a session with my psychotherapist. She usually asks me to think about my problems (or the problems I create). But I don’t have much time for that because, with each passing day, I get more tired, new problems arise, and life gets in the way, and so on. I want and need ready answers, for her to teach me mechanisms to counteract my problems or thoughts, and one time she gave me what I wanted. She asked me if I really thought their lives were so perfect, if their starting point in life was the same as mine, and how I dealt with that.

My starting point is very different from my friends’. I have a disability, with everything that entails, so the conditions are completely different. I could never compare myself to a healthy person, yet I always fall into that trap…

And of course, no one has a perfect life. For example, I complain from time to time, but the truth is I’m going through an extraordinary phase because I feel immensely happy. But it’s still a phase, which I know will end sooner or later; I’m aware of that (I’m already dreading the next crisis because I imagine it will be huge). Sure, I would love to have an amazing job where I could help others without neglecting my primary field, and I would be thrilled to go on vacation to places where there are turtles, or crocodiles, or kangaroos, or elephants, and lions, and zebras (yes, I get a real thrill from wildlife). But since I don’t have the money to go to those places, I make do with what I have (which is already fantastic), even though it might not relax me as much as I’d like. But it’s still a different place with different routines.

My psychotherapist told me something that gave me hope (which is what keeps me going). She said, “What if you see that party not as something you weren’t invited to, but as an open door for the future? When you sabotage those situations, it’s normal for people to stop thinking about you, but I believe they leave the door open for when you want to go.”

I think the solution lies in assuming that people will be happy to see me, whether I was invited or not. And the funny thing is, I used to be like that: I was everywhere, even at parties where I wasn’t invited! So, I don’t really have to change much, I just need to reclaim that sense of ease…

I love the new friendships I’ve made at this level, and I continue to enjoy the ones I’ve brought with me. I really like getting a message from “that friend” saying she’s in Portugal, and it so happens that dinners with her also include other friends from high school, or when I go to the Snail Festival with a friend, and she doesn’t show up because her child is sick (because it’s not just me who doesn’t show up, others have the right too!), but I still have fun “no matter what,” because, you see, there are snails (I relate to them a lot, because of their slowness), and they happen to be an extraordinary delicacy, or when I fight (because I really do fight) for the annual lunch with “the liver and heart” friends, the ones from the year I was a freshman (it should be every three months, but one of them never lets it happen…), but whenever it does happen, it makes me immensely happy. And I hate when I say or hear someone say, “Hey, we need to arrange a lunch,” but then no one ends up arranging anything, or when I don’t go where I’m invited because my energy level is too low (or I think it is because after not going and dealing with insomnia, I realize I always had enough energy, at least for an ice cream disguised as coffee).

I also hate not inviting people to my house often, “just” because I have to tidy up the house (before and after, because my house is always a total mess, and I’m a bit ashamed), and clean the house and the kitchen afterward.

However, what I really need is to stop sabotaging outings or thinking that I’m a burden (this is a difficult situation because every day I feel like I need someone’s help, even though I can manage on my own most of the time), or to stop thinking that I’m not welcome (when in reality, there will always be someone who will be happy to see me).

These are some of the stigmas that follow me (and I believe they are stigmas for many people with disabilities, if not all), and that I need to overcome. That we need to overcome.

The Story of Two Strangers Who Never Met Again

At the hospital, just before my first cardiac arrest, I was next to a student who had tried to commit suicide (I realized this from what the doctors and nurses were saying to her and among themselves), and they were doing everything they could for her because her heart function was rapidly deteriorating. She was a beautiful girl, and I just wanted to understand how someone (apparently healthy, as the doctors said) could commit such an act.

It was total chaos, with so many doctors and nurses around us, machines beeping constantly. It was hard to see who was taking care of whom because all the uniforms were the same, a frenzy of carts with medication, screens with red numbers and fluorescent green lines, linear traces that would suddenly spike, and IV bags, with needles full of liquid that the doctors systematically injected into the bottle’s entry point or the rubber area that connected a tube to the catheter, closer to the vein entry point.

While the doctors and nurses tried to find out the cause of her act (as if there were a plausible reason for someone to kill themselves), she would either cry or talk in a shaky voice. Sometimes she said disjointed words, at other times she was delirious, saying she wanted to fly with the black bird, that she could see it, and she screamed to let her go with it. At one point, she made herself understood: apparently, in her mind, the cause of this act was her boyfriend.

We were in a room within the emergency area, but at that time there were no curtains separating the beds. I was by the door, which was always open, with people constantly coming and going, and I could see some beds on the other side. So, I saw two different kinds of decrepitude: on one side, the girl, who must have been about my age; on the other, mostly elderly people lying on stretchers, some screaming, others dead. In my mind, those with their eyes closed were all dead. I could see everything that was happening within my field of vision, and I remember feeling the need to focus on just one person to maintain control of my mind and avoid unnecessary stress. Since she was right next to me, I ended up focusing on her. Mainly because I wanted so badly to understand the nature of a suicide attempt.

There was a moment when they turned her towards me. She was looking at me but without seeing me, and I didn’t have the energy to turn my head or avert my gaze. It was uncomfortable. So, there we were, the two of us, lying there, me looking at her, her looking into the abyss, until I spoke. I told her: “I’m dying. Don’t let anything or anyone dictate your death. You only die when they come to take you; don’t hand yourself over like this. Never again.” And she closed her eyes and started to cry continuously, trying to reach her eyes with her hands but unable to because her wrists were taped to the bed rails.

As soon as I said it, I realized I shouldn’t have. You should never tell someone whether to kill themselves or not. Although all the doctors and nurses trying to keep both of us alive emphasized my words and told her she should listen to me because she had ruined her health with what she had done.

I immediately realized that it wasn’t my place to say that, but rather hers to discover a love for life.

Living (and dying) are the most amazing things there are, but I wasn’t anyone to tell her that. No one is. No one should say that to anyone, especially not in the situation she was in.

After saying it and realizing I shouldn’t have, I wished I could have explained to her the value of life, the amazing thing it is to have something that depends only on us, our actions, nothing and no one else. That taste of living, which sometimes tastes like hydrochloric acid or crap, and corrodes and contaminates us from within. But other times it tastes like black and white, like summer or Christmas, or it tastes like a parent’s proud smile, or a salty kiss in bed from someone who is loving us, or it tastes like a foreign country full of possibilities and hopes, or laughter shared with friends, or even a wet kiss on our face from a small child (at that time, for me, it was from Samuel and Laurinha). And that the flavors keep changing, and no matter how bad those flavors might be at a given moment, after the storm, the sun always comes out. There is never a reason to end a world full of future flavors, and there are so many, so many!

And that this world of endless possibilities cannot be reduced to just one already bitter taste that has passed. It has already passed, it is already the past, it no longer exists! And even if you experience that bad taste again, you won’t feel it the same way because that bad taste has already changed us forever, and that’s what growing up is.

I should have told her this, should have explained somehow that death is never the solution, but in a different way. More subtly.

But I didn’t have the energy to do it.

I really wish that girl could read this. It’s a kind of apology…

Right after that, I was the one who tasted death: a hot, acidic taste that quickly ran through my veins to my heart (already enlarged), which suddenly grew even more, tried to beat two or three more times (it felt like I had a huge heart, so big it couldn’t beat because it couldn’t expand), and those last beats weren’t normal beats: they felt like they were in slow motion. I felt a “blop… blop… blop…” and then I died. I still heard the “beeeeeep” of my machine (which might not have been mine, but someone else’s) until I stopped hearing it.

A Fun Game

These folks give me reasons to write…

The image I’m sharing here appeared in an article in The Economist after THAT shameful debate between Biden and Trump. Since then, much has happened, but I came across this image after the attack on Trump, and it irritated me. So, I’m writing about it.

To say that someone who uses or should use this device isn’t fit to govern is, to me, equivalent to saying that no one with any kind of disability can govern.

I have no intention of governing any country, but if someone had told me last week that I couldn’t do it because of a disability, that’s when I’d want to do it (yes, I’m that kind of person)… If they asked me this week, it would be different because I received the results of the 24-hour blood pressure monitor (MAPA), and the results were concerning.

Regardless of my belief that the person suggested by this image should have already stepped down and never sought re-election, I believe people should take a true introspection about their real capabilities and the possibility of doing a certain job to the best of their ability, preferably in a way that meets their objectives, without being attached to power.

When I say “people,” I obviously mean “others,” because I’ve been asked to stop working on sanitation projects because they were killing me, and I didn’t stop, and clearly, I did work that I often couldn’t do (I’ve written this article, now I just have to find and publish it)…

I know this article is about ageism, which is just another kind of prejudice. But I didn’t read anything in either the U.S. or Portuguese Constitution that prevents anyone from running for any of these presidencies, especially regarding age or disability. That doesn’t mean I don’t think there should be some basic conditions to fulfill. The only requirements are to be over 38 years old and be a natural-born citizen of the respective country. In the U.S., you also have to have lived there continuously for some years, and in Portugal, there must be a list of a certain number of signatures to submit the candidacy. It doesn’t mention a maximum age, disability, health issues, sexual orientation, religious orientation, football club orientation… nothing.

I’m sorry that such news appears “out there.”

So, I decided to do something I had thought of doing but never had the right context. And there’s no better context than this!

My dear readers, let’s play a rather amusing game that will reveal your choice for a president, based on their characteristics, which I will list here.

Of course, some characteristics were omitted for some, to the detriment of others, similar to what happens in real life.

The original game is different; it’s from the perspective of the potential death of many of them.

I’ll present it from that perspective (so I don’t have copyright issues), but afterward, you can also choose who you would vote for as president of your country.

Here’s the game:

There’s been a nuclear catastrophe, and the future of humanity is at stake.

There’s an underground shelter that can only house six people besides yourself, and it’s up to you to choose who will stay in the bunker.

Make your choice and decide, from the list below, six people, considering their diverse skills, personality, and potential to contribute to rebuilding the “new” society:

A young aristocrat, homosexual, owner of a boys’ school.
A Black pastor, theologian, revolutionary, and pacifist convicted of causing public disorder.
An unemployed craftsman, friend of thieves, condemned to death.
A musician, son of a woman with syphilis, deaf, temperamental.
A man who was a difficult child, didn’t speak until he was three, dyslexic, failed primary school, anarchist pursued by the FBI.
A shy man, unpopular at school, disobeyed his father, and dropped out of university in his second year in mathematics to start a company based on a revolutionary invention.
A scholar with multiple disabilities caused by a rare, degenerative, paralyzing, and incurable disease.
A scholar, doesn’t smoke or drink, single, a great organizer and manager, author of a famous autobiography.
Adoptive son of aristocracy, a great administrator, lover of music and theater, built great works while governing, also a musician and poet.
Very shy in adolescence, volunteered and was a soldier. Married and father of a family, son of aristocrats. Had an excellent education. An engineer with experience in civil engineering, he is a successful entrepreneur.
A prostitute persecuted and condemned to death by the justice system.
Son of immigrants, was an altar boy as a child, athlete, studied up to the third year of medicine, then switched and completed a law degree. Was sentenced to 15 years in prison, later pardoned.
Orphaned father, shy, made a vow of chastity, and had heart problems.
An orphan raised in an orphanage, adopted several times, until she married at 16. Dedicated to the arts and addicted to drugs.
Cocaine addict, specialist in psychology, smoked a pipe, and loved sexual relations.
Father refused to acknowledge his paternity, was accused of public indecency at a young age. Volatile and inconsistent. As an artist, left many works unfinished.

Write down the numbers (you only need to write the numbers) of the ones you chose to save, and in the end, remember to choose one of them to be the president of your country.

In the next post, which I’ll put online next week, I’ll write the result of your choices.

Have fun!

3 de Maio de 2023

I’m not a complete crap…

But inside… oh boy!

The chaos that goes on there!

I was born with a supposed heart murmur that completely masked my actual disability – I actually had a completely broken heart that continued to deteriorate until it had to be replaced by another one.

But that change didn’t make me a new person without problems: the broken heart made changes to my body, and in reality, what I needed was to have all my organs replaced and only keep my brain (this way I would still be myself, because grabbing all of this and throwing it away might be an option). But the doctors’ effort to keep me alive was impressive!

Do I deserve all of this? I thought about it many times. The conclusion I reached is… of course I do!

This blog is about the difficulties of living with a disability like this (heart failure, which extends to the whole body), and how this disability affects me and the world around me. And how the world we live in affects me, given this disability. I plan to write true stories – everyday stories, stories that I consider hilarious and stories that have touched me in some way.

There will be sad stories, but with a twist at the end. I will talk about what happened to me, how, and where. I will try to be true to my memory. I may also post thoughts. Since I am an activist, I cannot promise that these stories will be devoid of certain observations. Perhaps with this blog, I can help “wake up” someone, and, above all, help someone… Happy reading!

P.S. – The posts will be biweekly, but I may post more frequently. Subscribe!