My soul aches

Javier Barbero

I don’t feel like getting up today. Not today, not yesterday, not the day before yesterday, nor four months ago, not since Gorka died.

Gorka left me. At the age of 32 he was a happy type of guy, a worker, as he himself said, he had overcome his problem with drugs out of sheer will power. He’d been working hard, really hard, after having finished his studies as an electrician, which he‘d found pretty difficult, so as to be able to leave home. He was just starting to see the colour of life again after an adolescence and youth that I would wish on no-one. Now his life came down to working, wining and dining Marisa –his favourite girl, as he liked to call her– and to looking after himself from his bloody AIDS. In the end it hasn’t been of any use to him…(I know that what I’m saying is not true because in the last few years I’ve had him with me in form and enjoying life, but it’s what I feel deep down inside of me…).

On 21st April, four months ago today, the virus snatched him away from me. In reality he didn’t leave me, they took him away from me. It was 3 o’ clock in the morning when the phone rang, “Come to the hospital, your son has got worse and it is really serious”. I thought that it must be a nightmare, it couldn’t be true… Dr. Iregua had admitted him with an aim to studying him in-depth because the changes in the hepatic markers, as he calls them, had drawn his attention. I took a while to get back in touch with reality. It was my daughter, Maite, who, crying, woke me from the impassivity to the crudity of what was happening, when she said to me in the hospital: “Mum, Gorka is dead, don’t you understand?”. To be honest it was my heart that couldn’t understand.

Four months of hell. Although Maite, the daughter that I have left, comes to see me a lot, nothing can alleviate my solitude. For me, going into my house and not finding him there is torture. It means opening the door and finding things exactly as I left them; it means finding myself laying the table for two, as if denying that his loss is irretrievable, and breaking down and crying. I have thought I have seen him in the park and even “heard” his voice, when I get up, saying his “Mum, breakfast’s ready”, as he did every morning when he went to work with his cables… The nurse at the national health clinic tells me that these are normal symptoms in my situation, that they are simply expressing my desire and my need to re-establish some kind of relation with him, but to be quite honest I believe that I’m going crazy… Everything is just so hard… On the one hand I need to cry and to “look for him”, to get in touch with him even if it is just in my thoughts: on the other hand I feel the need to suppress my tears to avoid the pain that follows the encounter with something that acts as a remembrance of Gorka. That’s to say, if I “encounter” him, I feel bad because it reminds me of his leaving; if I flee from his encounter I also feel bad because I feel as if I’m betraying someone so very important.

My pain as a mother is incomparable, non-transferable and, even though I try to express it in all possible ways, I am always left with the feeling that words are just not enough. There is no more and no less, there is just a mine and I want to keep it that way.
I think that no-one can imagine my pain. From very small, one way or another, we prepare ourselves for having to say goodbye to our elders; it is the law of life. It is logical for us to bury our grandparents and later our parents… but burying a son is the most unnatural thing that exists. Burying someone who you have brought into the world, in whom you have placed innumerable desires and fantasies, someone you have given your soul, your heart, your life to, in order to prepare him so that he can get on in life on his own merits. And he leaves you. I feel mistreated by life, I have the feeling that an Unjust God has undeservedly singled me out and is crushing me. If He hasn’t wanted it this way, He has at least permitted it. I feel furious with Him.

But my anger doesn’t stop there. Gorka started with drugs when he was very young. At the age of sixteen, as he himself admitted, he had already started to “shoot up” and by eighteen he’d already caught the virus. Since then I’ve been gradually discovering that, during those years, many of our do-good politicians said that giving the young methadone was like inviting them to take drugs, like paying for their vices and that what they really had to do was to give up taking drugs and to behave as they should. As if they were the ones to decide exactly what behaving as one should is, the bloody villains. Some friends from the Association Vihda* have told me that, as in other countries, many infections could have been avoided at that time if they had had methadone programmes and syringe replacement programmes, etc., what –I believe– they call “risk reduction” programmes. The problem is that our children were scum, the dangerous “junkies” who had to be thrown into prison and sentenced for life. Their sentence wasn’t just for life. It was to death.

On the other hand I do know that there are good people who try to help me. On occasions I would prefer their silence, because there are words which mean well but which make my pain even more acute. When they tell me to “think about something else, time cures everything and it will help you to forget, you‘ll see how quickly you recover as soon as Maite starts giving you grandchildren…”, I believe that they don’t understand a thing. I don’t want to forget Gorka, I want to have him permanently present in my memory and in my heart, I don’t want to betray his memory or my affection for him. How am I going to forget someone who I have loved so much! My son is irreplaceable, even with the best grandchild in the world… Let me express my pain! The expression of my pain acts as a corkscrew eliminating stress and pressure, creating small spaces of relief and calm that allow me to recover my strength even if it is just to be able to go on expressing my pain. My friend Candela, whose own son died of Cancer at the age of 11, says that only when I have been able to alleviate the pain by crying, spewing it forth, sharing it, will I realise that I can continue to be tender, sensitive, fun, eloquent and all those other characteristics that Gorka inspired in me and that somehow or other I will be able to continue being all these things even without him. Slowly, with great affection towards myself I will be able to recover what I once was and to share it with others. But before this happens I have to go through the pain.

Marisa will no doubt re-make her life; I think she even has a new boyfriend. I don’t reproach her for it but I have to admit that it pains me; she’s young and has to think about the future, for her Gorka is just history. Actually, she was always really good to my son and to us. She knew that he had the bug and she didn’t mind. But I am 64 years old, my recent past is heartrending, the present a torture and I have no future. Or perhaps I don’t want to have a future. I feel so confused. I know that in order to be able to live I have to accept the reality of Gorka’s loss, but also that accepting it entails breaking the fantasy of his possible –in reality, impossible– return. Nonetheless, I do feel the urge to advance, to grow, to overcome this exceedingly difficult situation. I know that this involves and will continue to entail not fleeing from my pain, and allowing myself to feel because this feeling forms part of my condition as a mother and as a person. I also know that I will have to adapt to an environment in which Gorka is no longer present. I will no longer have that magnificent chauffeur who took me on my monthly shop to the hyper-market, nor that marvellous and meticulous chef who gave me the gift of some delicious breakfasts as his way of saying, without words, “Mum, I love you”; nor will I have that very important economic support which allowed me to do more than just survive on my meagre widow’s pension…

Dr. Iregua –who I love as if he were one of the family– told me that the death of Gorka had particularly pained him. He had felt a great deal of fondness for him. Indeed Gorka had been a smashing patient, given that he always took his pills religiously, he never protested about anything and was even a grateful lad. Moreover, now that there are so many advances, like having almost all the patients under specific controls, especially if they really take care of themselves, just as Gorka did, in principle at least, Dr. Iregua is also witness to the oblivion into which these patients have been cast since, with the new medications, AIDS has been referred to as a chronic disease. As if what is chronic did not kill… Oblivion can also kill.

The first to be forgotten were our children, even though the medication was available. And the second, their mothers. With how many mothers have we shared sleepless nights in hospitals, so alone and so crushed! It was almost preferable for the husbands not to come, to not get on each other’s nerves. We were the regulars, those who never failed, those who brought messages to prison, those who took money out of their own pockets, those who were a permanent reminder to take the pills… And who has thought to remember us? No-one, no-one, no-one. Do you know of any programme to help heal the mothers who have lost a child to AIDS? Do you know of any public institution that has made an explicit and specific effort to alleviate our pain? At best, some NGO which, having a team of psychologists at its disposal, also widens the scope of its care to include us mothers…

Some of my battle companions have the satisfaction of their children having left them a grandchild or two, a gift that reminds them of the son or daughter they lost and who they look after as if he/she were that son or daughter. For others this is a poisoned gift, because at an age at which they should start to rest, with the onset of the infirmities of old age, they have to take on the responsibility, once again and with much less strength, of a midget who, because of their age, they do not understand, who gets on top of them and with whom they end up, yet again, taking on all the responsibility while they are small. That’s to say, you take on the responsibility of the irresponsibilities of others, whether they be of one’s children, specialists or institutions. They are the “grandmothers of AIDS” who, after having been called upon to look after their sick children, no-one normally asks how they’re feeling or if they need help in taking on the responsibility for those midgets.

I feel as if my heart is withered, almost dry. As if I had lost the ability to continue loving someone other than Gorka. I even feel more distanced from Maite, above all when she stubbornly insists on giving me advice that I have never asked for: “what you have to do, Mum, is…”. But I also believe that Gorka would never forgive me for not moving on, I feel that it is possible to keep on loving my son, without forgetting him, and at the same time to be able to express my affection to my nearest and dearest. It’s not going to be easy. I’m left without an answer to the meaning of my life (Gorka’s own life) and in its place a desperate question has arisen: Why Gorka, Lord? Why? My soul aches…


* Translator’s Note:
The Association Vihda makes use of the Spanish term for life (vida) and the Spanish for HIV (VIH); the play on words gives rise to the title of this association.

Juana, who didn’t even give us her name in her story, is today, two years later, a woman who has basically overcome the grief over the death of her son. This doesn’t mean that she isn’t sad every now and again, that she doesn’t remember him every day at some point or that the different anniversaries don’t stir things up for her to the limit… But, happily, Juana has accepted her loss, she is able to express her pain when necessary, she carries out her life with normality in practical aspects and relationship ones and, what is fundamental, she can carry on loving. Juana has found it very useful to attend a Self-Help Group of people in mourning and she recommends it from her own experience with heartfelt thanks. There she has felt listened to; not only has she been able to express information but also feelings –like her profound anger– without feeling judged and without having to listen to “forget about it”. There she has had the normality of many of her reactions confirmed and there she has been reminded, with a great deal of affection, of her right to being happy.

Javier Barbero-Gutiérrez, born in Burgos, Spain. Graduated in Psychology from the University Pontificia de Comillas. He was the Director of the first AIDS Sufferers Shelter from the year 1989 until the year 1993. Latterly he has worked as the Care Co-ordinator of the Social-Health Area of the Hospital-Residence Sant Camil (Sant Pere de Ribes, Barcelona), in Long Stay, Psycho-geriatric and Palliative Care Units, in which HIV/AIDS patients are also placed, according to their needs.

He has worked as a psychologist and co-ordinator of a Home Care team for AIDS sufferers in the community of Madrid.

He is currently the Director of and a psychologist within the "Pardo-Valcarce" day centre for the mentally ill young.

For many years he has been militantly active in the Anti-AIDS Citizens Committee of Madrid, fundamentally concerned with the care and imprisonment of people with HIV in prison.

As a psychologist he has specialised in Counselling, with particular attention to the care of patients in the terminal phase of a disease, socially excluded people and HIV/AIDS patients.

As a person interested in questions relating to care ethics he carried out a Master in Bio-ethics in the Universidad Complutense de Madrid (Alcalá de Henares University in Madrid), directed by Professor Diego Gracia, specialising in analysis and decision making in end of life questions.

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