Reflections on Death
Buddhist Hospices & HIV/AIDS

This article is designed to help partners and loving friends at this difficult time and is arranged under the headings:

• AIDS and disenfranchised grief
• Learning to deal with your guilt and anger
• Forever changed
  You have a feeling of shock, numbness, a yearning and a protest! You have lost part of yourself.
  
  

You feel disorganised and you cry a lot, you’re restless and you may even feel guilty.

Perhaps you could have helped the person who died more, but you didn’t know how.

You are angry because this person has died and you’re angry at the world. You feel so alone. Loneliness is one of the biggest problems of grief.

But it is your problem and you are going to have to live through it. He, that special person, is not here to help.

The first stage of grief is shock, and this stage helps us cope temporarily.

A grieving person is not always overwhelmed by the tremendous loss of the loved one immediately after death. There are so many things to do that you often do them automatically.

You tend to keep busy and try to think, to believe, that the loved one is not gone.

You hope for a better tomorrow.

Then the pangs of grief begin: intense feelings of yearning and pining for the dead person.

You become aware that this awful thing has really happened, that the partner you loved has died.

This realisation comes in waves of grief and yearning. You will feel vague anxiety, and your body will ache and you will be unable to sleep.

At times you may feel panicky, thinking you might be going out of your mind, and you may not be able to function the way you want to.

All this is natural.

AIDS AND DISENFRANCHISED GRIEF

Disenfranchised grief is experienced when the death of someone loved is not acknowledged or socially supported. Unfortunately, many survivors of AIDS deaths are disenfranchised. They are frequently denied the opportunity to openly express their feelings or to be emotionally reinforced by friends and family.

Because of the social stigma surrounding the disease, survivors of AIDS deaths feel the pain of loss, yet may not know how, or where, or if, they should express it. But just like other bereaved persons grieving the loss of someone loved, AIDS survivors need to talk, to cry, sometimes to scream, in order to heal.

Instead, AIDS survivors are often shunned by a society already uncomfortable with death and grief. As a result of fear and misunderstanding, survivors of AIDS deaths are often left with a feeling of abandonment at a time when they desperately need unconditional support and understanding.

Newly bereaved gay men often have a preoccupation with their own health – the slightest bruise is quickly construed to be Kaposi’s Sarcoma and the merest sniffle, Pneumocystis Carinii.

And other physical symptoms of stress which are seen in all bereaved people – insomnia, diarrhoea, gastrointestinal problems, headaches and fatigue – are quickly interpreted as symptoms of AIDS and, indeed, the symptoms are similar.

Knowing that these physical symptoms occur with all losses of significance will help to keep your anxiety in check, and a visit or two to your favourite doctor will help to keep you reassured, too.

You will experience a strong impulse to get your friend back, going over events leading up to the death, and you may want to describe in detail the happenings surrounding the death and the funeral.

This is an important, although frequently overlooked and oft-times resisted, reaction to loss.

You may find yourself talking to the dead person as if he were present, maybe buying a carton of his favourite fruit juice when you go to the supermarket.

You may think you hear him coming in the door and call out, “I’m in the kitchen” – and then realise he is no longer here. He will never walk through the door again.

This imagining is very common, and does not mean you are losing your mind.

It simply reflects the need to find one way or another to get back the partner who has died. Dreams and nightmares may be experienced but while distressing, and on occasion terrifying, these too will fade away in time.

LEARNING TO DEAL WITH YOUR GUILT AND ANGER

During acute grief you may find you are often very angry, an unpacifiable anger directed toward some person who appears to you to be responsible – an incompetent doctor, hospital, or that careless acquaintance who refused to practise safe sex.

It may even be directed toward the lover who has died. “How dare he die and leave me!” Anger is a profound and frequently uncontrolled emotion and it is one of the more difficult aspects of grief for you, the surviving partner.

You feel the need to verbalise feelings of guilt, particularly if you weren’t with him when he died, even though you spent every available moment at his bedside, bar those hours spent at work or getting much needed sleep.

Often death occurs when a lover is not present, giving rise to the unanswered questions, “Was he in pain?” or “Did he reach out or call for me?”

These cause much pain and guilt, frequently expressed as, “I promised him I’d be with him. I never said the final I-love-you. If only I’d stayed with him instead of…”

Often the dying person waits until the person he loves most leaves the bedside and then, totally in control, spares them the moment of that last breath. This, I believe, is a last gift of love to the beloved.

Guilt may strike you again some months later when you meet a new man and are attracted to him, accept an invitation to go out, laugh and enjoy yourself and feel less sad.

You may then suffer inner private recriminations about disloyalty and reflections of “How could I?”

It is important for you then to recognise your own needs and humanness – another milestone in the process of grief.

You are learning to let go of your dead lover and learning to live again.

He will always have a special place in your thoughts and heart.

You may never love that way again but you will have grown more mature, sensitive and compassionate.

Dealing with anniversaries, birthdays and holidays may seem impossible to you because many gay men have created their own special holiday celebrations over the years and you may find yourself at a terrible loss when it comes to facing these times alone.

If your lover has died only recently you will still be so sad and depressed you won’t be able to imagine being in a mood of joy and happiness.

If your loss was a number of months before, looking to past celebrations may be painful, and the future uncertain and unknown.

It’s a trying time that you must recognise and acknowledge.

Disposing of possessions and belongings is always a difficult task, but it is very therapeutic in the grief process.

The task may be complicated by relatives and family members who don’t recognise the bereaved lover as the spouse or ‘significant other’.

Sometimes you may have to deal with the anger and frustration of coping with an estranged family who has come in and taken all his belongings, particularly if they have never accepted the relationship.

Not infrequently, you may find, those family members have been out of touch for long periods as well as unsupportive during the illness.

These same relatives may go ahead with funeral plans which were very different to what the deceased wanted and to compound the injury, may not invite or actually prohibit the bereaved lover from attending the service.

Friends frequently have no idea of how to befriend their brothers in grief.

Young people, in particular, who have had little or no experience of death can feel their role is to distract you from your grief. Going to bars or bath-houses won’t work, although you may feel like going places you both frequented in an attempt to feel close to him.

If you are a friend wanting to help your grieving brother, simply say to him: “TELL ME ALL ABOUT IT”.

But when you do so, be prepared to listen to whatever he wants to say. For him, there will be no easy way around his grief, no thinking that tomorrow will be better.

He must work through it and that’s hard work.

Tomorrow will be better only if there are sympathetic people prepared to let him tell his story of how it was and how it is – over and over again,

Otherwise he will have to learn to swallow his grief – that proverbial lump in the throat that will surface later as one of the usual symptoms of anger, insomnia, helplessness, guilt or despair.

The tomorrows will be better if we can go on our backwards emotional journey together.

“Memories light the corners of our lives,” the song says, and it is these memories, good and bad, which need to be talked about and made peace with before a hopeful tomorrow can be lived.

FOREVER CHANGED

As people who have been blessed with the capacity to give and receive love, we are forever changed by the experience of grief in our lives. We, as human beings, do not ‘get over’ our grief but work to reconcile ourselves to living with it. We hope eventually to find some meaning for these sad happenings in our lives, to heal and to grow.

Life is not fair. Life is a series of tragic losses but we cannot lose something unless we have first had it so the magnitude of each loss becomes the measure of life’s gifts.

Memories made in love can never be taken away from you. If your memories bring laughter, let yourself smile, if memories bring sadness, let yourself cry. If your faith is important to you, express it, and remember to love yourself.

I wish you all love, peace and wellness.

Teresa S. Plane