Ligia Maria Eusébio da Anunciação Santos (47) is a dialysis patient in our Estoril clinic in Portugal. Despite many difficulties she got married last year and on this occasion we spoke to her to congratulate the couple. The result was a very honest interview with deeply emotional insights on life as a patient:
How long have you been on dialysis?
It’ll be twenty years this year. I was very young, I was 6 and a half years old and had lots of problems and health issues, a lot of pain. My mother took me from doctor to doctor and there was one who told her to take me to the Estefânia Hospital where they ended up removing one of my kidneys when I was 8. From then on, I was in hospital for about 4 years. There had been many complications. For example my bladder ruptured as a result of that intervention. Then I was taken to Santa Maria Hospital in very bad condition and ended up returning to Estefânia where I ended up losing the ability to walk. They concluded that I suffered from renal tuberculosis. They also said I suffered from Crohn’s disease which, in retrospect, had already been going on for a few years but had never been diagnosed. Meanwhile, I was taking very high doses of cortisone, which increased the calcium in my body, resulting in the removal of two of my fingers.
Why did you come to Lisbon?
When I was about one year old, my father had to go to hospital. At that time we lived in Torres Vedras, my parents and my two brothers. My oldest brother was already walking but me and my other brother were still at the crawling age. When my father recovered, the doctor advised him to move closer to the sea. My parents knew the area around Cascais and so we moved to Azóia. My father died from cancer some years later.
In what way has your renal disease influenced your life?
Since my childhood, I have never really been ok: I have several difficulties, I have been deteriorating day by day, I find it hard to get dressed, cook, do household chores… I do them, but with great difficulty. Due to all the hospitalisations I was already 19 years old when I finished the 9th class. I had very good marks so they wanted me to finish also 12th class but then I was hospitalised again. During that time I met a social worker who arranged for me a course as a switchboard operator in an institution for the blind and visually handicapped. This was very good for me, I learned braille, computers and typewriter but always being treated as if I was blind by using a blindfold. Following this course, I did an internship at the Hotel Sintra in Estoril. I’ve always been known for my commitment and dedication. Since then I have been working as a secretary.
Lígia, you got married recently. Do you want to tell us a little about that?
In 2001 I got married in the registry office but now we had our church wedding. I always had this dream of a church wedding since I met my husband. He is working as a facility manager in the Consolata missionary and the priests and missionaries like him a lot. They do have their own church and so the idea was born to have our wedding there. With the help of all his colleagues and our friends my dream became true! We had 70 guests and as a surprise we told everyone it would only be an informal lunch but actually it was the wedding ceremony. So we did all the preparation. It was very emotional when our guests arrived and saw me in my white wedding dress and all the chairs facing the altar. It was a perfect surprise and a great feeling, an unforgettable day!
How would you describe your relationship?
We do have a very normal relationship I would say. We do have the same problems as other couples. At the moment I see many couples around me separating and I do not say this might not happen to us as well someday but I will fight for this relationship. I have had so many difficulties in my life so it is a really good feeling to have him on my side. It is the small things that matter for me. He is so attentive when he for example cuts the bread or meat for me. I have always lived a very independent life but he analysis very carefully where I do have difficulties and supports me exactly with those things. Regardless of my problems, I am his rock and he is mine! We really wanted to have kids but being a dialysis patient, this is impossible for me. He would love to be a father and I keep feeling guilty for not being able to give that gift to him. I even told him he could go seek happiness elsewhere… but he never went.
Is it totally impossible for you to have children?
Adoption would be an option, but unfortunately we don’t have the financial means. The children I looked after have always been a little bit ours: we’d take them to the beach and taught them much.
Any other dreams?
Always do the best I can every day! It is the small things that make me happy. Sometimes it is just a cake that I make.
What is your relationship like, with patients in this unit?
They are generally very playful, but without being nasty… we laugh, joke, and we also know how to talk seriously. We talk about the news, about football, a little bit of everything. About death. When I’m really down and walk in the room they immediately see it and play with me to cheer me up, calling me “piquena” (little one).
Do you think about death a lot?
Yes, every day! Death is a natural thing and I’ve been close to it so many times… I’ve found myself so many times surrounded by doctors who don’t know what to do with me. When I was 14 years old, or even younger, I was transferred from the Estefânia Hospital and all of a sudden I had 20 or 30 doctors at the foot of my bed and my mom had already gone home to cry because they had said that there was nothing they could do. I remember that when I opened my eyes everyone was amazed that I’d woken up. Death is my companion: when it wants to come for me, I let it come.
Is there a message you’d like to leave for the readers?
Always live life to the fullest, not just looking at yourself but also at others; the others are also important – they are very important to us, just as we are to them!