She was 30 years of age then in 1981. She was able to extend her life 33 more years.
How did she bring this to such fruition, despite all the odds? How much was a blessing?
She was very capable in her metamorphosis with her cancerous pathology, pursuing her sense of purpose and goals with perseverance to: (1) foster what she most wanted with what life she had on Earth; (2) explore a possible ´yes I can try it´ when told ´it can´t be done´ or it is ´not convenient´; (3) co-opt her doctors, this partner, her parents and many other people to help explore these possibilities and accompany her daring effort; and (4) be disciplined with the treatments prescribed and/or found in surfing social networks.
This meant challenging what is taken as “normal”, and looking for more “functional” options for her particular situation. We had to question and even disagree with many common assumptions regarding what is “terminal,” “incurable,” “vegetative,” “deteriorated,” “handicapped,” “disabled” or in “excessive suffering,” utilized too often to denature or stigmatize the patient, or they underestimate and undermine the patient´s intentions, stamina or inner well-being.
We had to deal with two intervals of her episodes, each about 7 years, one of radionecrosis (effects of the radiotherapy manifested years later) and another of vascular dementia. She also had other pathologies, including another brain tumor (meningioma), and during those 33 years, needed 60 imagining tests (MRI, CT, etc.) to diagnosis them.
Doctors consulted in Costa Rica and the United States were very attentive, but at times we had to make recourse to second opinions on line and with medical researchers and practitioners with more effective solutions during my missions for the United Nations to other countries like Canada, Romania and Mongolia. Their contributions contradicted disturbing previous messages of her having dementia, and she was calmed a lot on learning that it was radionecrosis and adjusting her medicine intake.
Fundamental to this is understanding the importance of what is called neuroplasticity, and how with a partial handicap, our cognitive reserve releases potential to develop other individual competences. As Helen Keller shows in her autobiography, being deaf-blind can make one more sensitive and perceptive regarding much that surrounds her than is normal for most people.
Art therapy and imagery helped a great deal. It facilitated overcoming inhibitions to express stressful emotions, preparing for different therapies, and strengthening that plasticity (making us conscious of what we don´t otherwise see or remember or exhibit). In her last phase of episodes, Nidia could be not talking for a couple of days. But then other neurons could be liberated. We took her to a swimming pool exercise group, moved her a bit and before long she was leading the other women singing melodies robustly.
Her approach led to very unusual achievements for brain tumor patients, our always studying the risks involved and her physical, emotional and environmental immunological defenses. We are preparing publications to be more precise regarding those defenses, as much psychosocial as physical, and I can send a summary of them in my conference on psychosocial oncology: firstname.lastname@example.org. It is so important to take lessons from patients with extraordinary prolongation and quality of life, like those 5-10% of cancer patients in so many clinical tests who live more than three times as long as the average, following the experiment with them. She certainly prepared me better to deal with my prostate cancer.
Among these achievements are the following:
We had to be very thankful for so many enhancing and unexpected lures and blessings. I miss her tremendously, but am thankful being with her 33 years rather than the predicted one year.