Little Things Make the Difference

A blog about an ALS patient and her experience from the onset of the disease to her everyday life in an ICU.

Thursday, March 01, 2007

A Testimony

Dear friends,

I am Maria Dulce, Josélia´s oldest sister.

Since I know that you are interested in knowing a bit more about my sister’s story I will try, in the best possible way, to transmit what I have lived and learned with her.

Much is left unsaid, yet a part of my sister’s story is part of my own story and makes up a very important part of my life.

No matter where I go, and how much time I have left to live, her life intertwines with mine, as a marvelous part of my past, present and future.

It is my intent, above all, to transmit what Josélia has transmitted to me and that I, myself, have assimilated: the objective of one’s life is to feel the existence of life within us.

A hug to all.

Maria Dulce


A Testimony

It has passed almost 15 years since the onset of the first symptoms of the disease. My sister, at that time, had a very active professional life, working as the Commercial Director of the Hotel Quinta do Lago in the Algarve. She traveled throughout Europe in meetings, returning home on the weekends. Her family which consisted of her, her husband Vítor (who worked for TAP) and her son, André; all tried to adapt to this rhythm and amongst whom the chores were divided and accepted naturally.

When the summer of 1992 arrived we all went on vacation (both our families), as we usually did. We stayed in different places hence, we got together frequently. On that day in July we had decided to have lunch together and I remember vaguely her asking me to slice the bread because she felt that one of her fingers was weak. I laughed and of course, performed the task! It could hardly have passed through our minds…it had already all begun.






Returning from vacation and each one with their own occupation, we’d get together weekly at our father’s house. After awhile I started to notice that my sister was different: I saw her weak and limping a bit. I insisted that she see a doctor, and she responded that she already had an appointment booked.

On Christmas Eve, always spent at my house, Josélia told me that her doctor, after she had done some medical exams, had referred her to a neurologist. That was all that I needed to hear, at that moment my heart told me what was to come!

In February the results of her MRI arrived and we were faced with the cruelest test: she had been diagnosed with Amyotrophic Lateral Sclerosis, a degenerative disease which would confine her to a wheelchair in a short period of time. At the time of the diagnosis my sister was forty, she had a beautiful family and a splendid career ahead of her.

In an almost heroic gesture she reacted in a very pragmatic way (as if that was possible) and continued to work although, as it is obvious, at a slower rate. When she told me the results of the medical exams, much to my despair, she said to me: “there are people who win the jackpot and don’t reject it, in my case I won the complete opposite and I will have the strength to go ahead with my life”. It was as if the appearance of the disease made her responsible for her destiny, discovering a new and more profound value, and not giving up in a masoquistic manner.

It wasn’t easy for me to find the availability to act with subtlety in order to help. I felt lost with preoccupation and I asked myself if the image she transmitted publicly (including to us) was real or, if it was a defense mechanism used in order not to suffer. It is here where the mystery lies, at the heart of each individual.

During all of 1993 Josélia maintained professionally active, although the difficulties she had to walk were very visible. She also had difficulties in writing and one of the first symptoms was not being able to do her signature – she had to stop signing documents, cheques, etc. She then started to delegate, and in a moment of great lucidity, asked my husband to be André’s tutor (it is as if she had a premonition that Vítor, her husband, may also become sick).

In July of 1993, now very conscientious of the disease and with the diagnosis made by the best neurologists in Portugal, we went to England where she was observed at the research centre for the Motor Neuron Disease by Professor Nigel Lee, a well-known English neurologist. The consult, which lasted many hours, confirmed everything that we already knew and after having said that, we were told that there was no point in returning. Professor Nigel Lee told us, in a gesture of humility, that the doctors in Portugal knew as much about the disease as he did, in other words, almost nothing.

In October of 1993, and after dinner at my house, my sister fell. When I arrived at their house, after my brother-in-law’s telephone call, I found her in a miserable state: with contusions on her face and her front teeth literally broken. From this moment on it became unviable to maintain her professional activity so she went on sick leave. Nonetheless, she was still able to work at a home as a technical consultant. I remember seeing her very motivated professionally, enthusiastic with her work and vibrating with happiness when all went well.

The most painful moments were, with no doubt, her conditioned movement as well as, the great difficulty felt with basic activities such as, personal hygiene, lying down, getting up, getting dressed, etc. Everything had to be done slowly and with much concentration, and took a lot of time. It was very painful for all of us to accept what seemed to be, and was, an intense suffering.

In March of 1994 we returned to London, but this time she returned already in a wheelchair. The summer of 1995 was the last time we vacationed together: the three of them and the four of us. We rented a house with a swimming pool and enjoyed ourselves greatly, having long walks – us on foot and her in her wheelchair.

In the middle of 1997, much to everyone’s disbelief, Vítor was diagnosed with a malignant tumor in his left leg.

Throughout two years and until he died, he underwent various admissions, a painful operation and various radiotherapy and chemotherapy sessions. I always accompanied him and always loved him as a true brother.

Once again, all hell broke loose in that home. My sister had always known about her husband’s situation and I, myself, believed that she wouldn’t be strong enough to resist another one of life’s bad jokes. On the contrary, she got even stronger although physically she was much debilitated.

I have no doubt that she lived for her son, with affectionate care and bitter suffering. At that moment being a mother was not only guaranteeing André’s physically survival and his studies, it was much more than that, it was maternity in its complete definition, a mutual foundation, permitting the survival of both through the contact with the experience and mystery of life.

In August of 2001 Josélia stopped being able to swallow. She was admitted to a private clinic, where she stayed during a month and a half. From that moment on she started being fed through a nasogastric catheter.

In the early morning of December 13, of that same year, Josélia was taken to the Hospital of Curry Cabral’s Emergency due to a cardio-respiratory crisis. Thanks to the nurse’s aid who accompanied her every night it was possible for her to reach the hospital still alive. Once there, both André and I were informed (with some coldness on behalf of the doctor which attended us) of two possible scenarios: a) undergoing a traqueotomy and being connected to a machine for the rest of her life; or b) not resisting and dying.

I prayed for a miracle to occur and for it to possible to once again be with her.

It was necessary to resort to artificial respiration; they put a tube going from her mouth down through her throat. I think my sister was pre-comatose during the following days, but slowly became better. My sister, using only her eyes, was able to tell me: “I want to stay here”.

A few weeks later a traqueotomy was performed. She never left the Intensive Care Unit again. Also, never again was it possible to hear a single sound coming from her.

It is obvious that communication is very difficult although, we all are now able to understand her due to an enormous capacity to observe. When things are more complicated we say the alphabet and she blinks to let us know the letter, in order to spell the word. We’re able to speak about everything and, it is still she who gives opinions and counseling.

Various tests with computers have been done, but it continues to be very difficult since she is unable to move.

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