“I get involved because I could be that mother whose son has been diagnosed with an illness, in some cases incurable”
TEXT: CRISTINA BISBAL PHOTO: ALBERTO CARRASCO
Colombian by birth and trained in Spain (she studied Psychology in Madrid), Paola is a volunteer with Guerreros Púrpura [Purple Warriors], a non-profit association for parents of children with neurological, metabolic and endocrine diseases being treated in Madrid’s Niño Jesús Children’s Hospital.
As soon as she learned of this association – barely one year in existence – Paola was enthusiastic about its work. And, while the cause does not directly impact her, she decided to get involved as a volunteer in this enterprise. Part of her work is as a psychologist (she is a specialist in Psycho-oncology and Palliative Care, Fertility, and Neuropsychology, and is a Certified Instructor from the Compassion Institute at Stanford University), but also “I offer my time and my services at solidarity markets and other charitable events.” She does all this in the spare time remaining after exercising her profession in a private psychology practice and running a mindfulness website on which she delivers courses.
Had you ever been a volunteer before getting involved with Guerreros Púrpura?
From a young age my mother included me in the team of volunteers she herself ran, helping distribute food and clothing to the homeless, lepers or disadvantaged elderly people in my city, Ibagué. She was the one who instilled in me and my siblings the need to think of others and be generous, whether with time or affection.
And as an adult?
I started actively collaborating with the Red Cross when I was 18 but, due to a lack of time, I stopped and became a fee-paying member. For just over a year now, I’ve been a member of two associations: Guerreros Púrpura; and ACM112 (Acompañamiento Compasivo en la Muerte), in which we accompany people living alone as their life comes to an end. Two factors drive me to be a volunteer: participating in social change, raising awareness, and accompanying people in situations I could find myself in.
Why Guerreros Púrpura? What made you opt for this association?
I started for two reasons, the first being social: it’s important not to limit yourself to merely wanting things to change; you have to engage with tangible actions that can make it happen. The second is a personal reason, an awareness of our common humanity. It’s funny how, every day, we hear about relatives, friends or people around us suffering diseases, accidents or calamities of various kinds, and yet we still believe that it will never happen to us. I could be that happy 38-year-old mother whose young son has been diagnosed with an illness (in some cases incurable). Should that happen (something I won’t be able to avoid), I’d like to be able to have the best medical assistance, care and support throughout that tough process.
What does your work in Guerreros Púrpura entail?
Principally looking after the ‘Warrior’ mothers and fathers. We have set up the “Café entre Guerreros” [Coffee with Warriors], offering an emotional care haven for the children’s parents. These are meetings where they can discuss things they wouldn’t normally mention. By listening to others, this shared comprehension affords them fortitude and company. This provides emotional help to regain their selfcare and refrain from defining themselves in terms of the disease. This is neither psychotherapy nor group therapy, but simply accompaniment. I also offer care programs for healthcare personnel in the hospital and thus integrate them into the care chain. Not only the patients and their families matter, but also those who care for them on a daily basis.
What kind of support do the parents need?
What happens nearly always is that these families become dysfunctional when they receive the diagnosis, adversely affecting the couple, their self-care and social life. The little ones take up all their time. This is normal in crisis situations, but in the case of chronic diseases where complications occur continuously, it’s hard for them to return to their normal routine or find time to look after themselves. We must remember that, by caring for the caregiver, we can also take care of the patient.
How much time do you dedicate to your volunteer work?
It depends on the needs at any given moment. The Guerreros Púrpura solidarity markets last the whole day (usually at the weekend) in Madrid or in nearby cities, and the coffee sessions last one or two hours, once a month, also in Madrid. But when children are admitted and the need arises, I also accompany them in those complex moments of the disease.