How do I find you?

The morning I left for Scotland was grim.  Margaret is dying.  It would be our last time together.

But there were other issues.  The previous night my daughter wounded me to the core.  What she said was too deep to sustain.  Something inside me died.  I knew that I was dying as her mother.  I could not and would not take any more.  It had gone on for years.

It came at the worst time possible.  Driving long distances with M.E. isn’t much fun.  Neither is the journey on crowded motorways, followed by over a hundred miles of bleak moorland, to reach the west coast. That twisting stretch of road is unforgiving of the tired or careless driver. I dread it every time.

I very rarely cry in front of other people, especially not my children. There is nothing wrong with tears but the Burden Basket is part of my shamanic path. The lesson that it teaches is, that you should not put your burdens on others,  as you do not know what pain they carry in their hearts.

That does not mean that you never ask for help.  But you must check out if it is safe to give your pain to another.  They must agree to accept it and share it.

We can needlessly burden others.  Two days after Jo died I was standing in the queue at the Post Office, deep in thought.  The woman next to me started to complain about the weather and time wasted standing in queues.  She picked the wrong person on the wrong day.  Instead of passively listening or nodding to agree with her, I told her that my friend had just died and would have loved to be walking in the rain or standing in the queue.  Not only did it silence her, it made her think.  ”We forget to be thankful for small mercies, don’t we?”, she replied.  We all do.

However, Margaret’s impending death, the fear of the journey, and the pain inflicted by what my daughter had said, was too much.  I cried in front of my son but I couldn’t help it.

”Why does she say and do such awful things to me?”,  I asked.

”Because she can and you let her”, was the simple reply.

He was right.  I do.  It should have been dealt with a long time ago.  How often have I told others not to get into the victim role?  You cannot be trashed unless you permit it.  But it had to wait.  My journey to see Margaret was more important.

Surprisingly, I reached Scotland in four hours without stopping and went straight to Alice’s house.  She is my other sister-in-law.  She explained how Margaret was and how she looked.  Nothing prepared me for the reality.

Margaret is untypical of the Scottish race – striking in appearance but not conventionally beautiful.  She has green eyes, white skin and thick, raven black hair.  Despite being a grandmother, there are no white hairs at all. Perhaps her bone structure is her best feature.  The high cheekbones always gave her the appearance of a native North American, the only difference being that their skin is brown.  I always thought that she had a wonderful face.

Death can be very ugly.  Cancer has ravaged her.  Her pallor is yellow grey.  The brain tumour has distorted her high cheekbones to a puffy mass.  The shining hair has been replaced by dry, dead hair with the texture of mattress stuffing.  It looked weird.  Clumps have come out round her ears and temple area leaving bald patches which accentuate the swelling.  For me, it is gruesome.

It is not death that is bothering me.  It is the decay that I find revolting.  Why couldn’t it have been clean like Jo’s death?  Margaret didn’t deserve this.  She was so proud, strong and independent, yet here she was, huddled in a chair rotting away.

I was ashamed of my own feelings.  It was repulsive yet there was nowhere in the world that I would rather have been.  It was so good to see her while she still had time to recognise me.

She smiled when I came in.

”I’m really glad that you came, Eve.  I didn’t think that you would have bothered coming all this way till the funeral.”

This response shocked me. Why would I not have come?  Margaret and I had 26 years together and I love her.  But then Margaret had so few expectations of life.  There had been many betrayals throughout her life and, rather than face any more disappointments or hurt,  she had closed the doors on expectation or excitement.  If you let your hopes and dreams die and don’t expect anything, you don’t seem to get very much out of life. That is where we are different.  I want it all.

Margaret walked out on her husband never to return.  She was only in her early thirties.  In all the years that I have known her she had never dated a man, never entertained them as friends, and never let another man touch her.

I cannot imagine never making love or being touched for 26 years.  That would be a nightmare.

There was no way that I could coax her into a night out with the girls, never mind the men.  She hated public bars and the smell of alcohol.  But she was wonderful with children spending hours teaching them to play games and read books.  They were always on her knee for a hug.

We all exploited her in the early days.  We were party animals and just expected that Margaret would baby sit.  I don’t think that we ever asked her.  She was left with the children and that was that.  They would be bathed and fast asleep on our return.

Margaret had to be handled carefully.  25 years ago we fell out over a joint of beef.  We had all gone out for the day leaving Margaret to cook the dinner.  On our return, the meat was still lying raw on the sink top.  No Sunday dinner and we were all starving!  How could she!  She said that she forgotten. We thought that she was being spiteful and a major row blew up. We didn’t speak for two years after that.  It seems ridiculous now.  What a blessing that we made up and moved on.  Feuds are such a waste of energy.

Sometimes it is difficult to know how to do things right without offending people.  When Margaret first had cancer of the bowel three years ago I sent her £100 as she had very little money.  She returned it and said that she did not need charity.  That hurt but she didn’t mean to hurt me.  All she had was her pride and independence. That mattered to her. Yet she would willingly accept other things.

When I first lost my job and salary, I had to explain that the trips to the Edinburgh Festival, the Tattoo, the restaurants and all the other things would have to be curtailed.  This made me feel guilty.  Margaret always loved me taking her places that she could not afford to go to.  My visits were one of the highlights of her year.

She handled my embarrassment beautifully.

”When you had the money, Eve, you were always generous.  There’s lots of things that we can do.  It won’t matter.”

It didn’t matter.  Margaret came into her own.  She taught me a lot about simple pleasure, how to have a wonderful time without money.  That took away my fear of scarcity.  There is always enough and more to spare.  I seem to have more now than I did when I was working – more time, more pleasure, more quality of life and, funnily enough, more money.  I just don’t buy so much needless crap.

The initial shock of seeing her passed quickly.  The kettle went on and the laughter started.  She was still my Margaret and she was still alive.

But there was no time for pretence.  We pretended last time.  But her surgeon gave her the ‘all clear’ so nobody talked about cancer and any possibility of a recurrence.  That is my regret.  I could have made more of the time.

I told her that I knew that she was dying and how much the last 26 years had meant to me.  It may not sound much to you but it was an immense thing for me.

I have no family.  Well, that is not strictly true.  I have had a mother, a step mother, a father, a step father, a sister, a step sister and four half brothers and sisters.  But my mother was abusive to me and my children so I just left.  My father disowned me when I left my first husband but the links were fragile anyway.  The relationship with Margaret’s brother did not last.  But that made no difference.  I was welcomed as part of the family and was grateful.  I told Margaret that.  She had never realized how much it had meant to me.

Death was forgotten.  They say that life flashes in front of you when you are ready to die.  This went on to fast forward as all the wonderful memories flooded out like rays of sunshine.

She reminded me of the time my son made snow pies.  It was nearly New Year’s Eve.  The adults had crowded round the roaring coal fire laughing and enjoying ourselves.  We forgot about him.

A bucket and spade were always packed as he loved making sandcastles.  Deep snow, high seas and sub zero temperatures put that idea out of the window.  Undeterred, he made snow pies and lined them up on the new hall carpet.  By the time we discovered what he was doing most of them had melted leaving an indoor lake.  The carpet shrunk and smelled of damp for months.

That was some winter.  We had snow fights – adults only – it was too wild for children.  We used shovels to hurl the snow at each other.  I got alsolutely pounded but what a laugh we had.

As we were laughing, reality hit me and I wanted to cry.  Feelings of helplessness overwhelmed me.  What could I do to show her that I loved her?  Margaret wasn’t a ‘touchy’ person so I could not hug her.

For the first time ever, she asked me to make her something to eat.  I had often cooked for the family but this was different.  She wanted two boiled eggs mashed up in a cup with butter.  The directions were specific.  The water had to be boiling, then the eggs had to go in for three minutes – not too hard and not too soft.  I have never put more care into boiling eggs in my whole life

By letting me do something for her, Margaret took away the awful feelings of helplessness and impotency.  I had to do something, I wanted to something and I did.

But there was much more.  Margaret was an emotional fortress.  Nobody ever got to know what she really thought or felt.  Sometimes you would get a glimmer but not often.  This time the drawbridge came down.

She asked me bluntly how things were for me.  There was no time left for dishonesty.  I felt a failure as a mother and told her so.  What a blessing that I did.

Margaret’s son is not good to her.  He knows that she is dying and has only made two very brief visits while she was in hospital.  He has never been near her since she has been home.  Sometimes my daughter stays away for months at a time.  We never have an argument.  I can never understand why, but that is how it is.  It is really painful when an adult child will not talk to you and blames you for everything that has gone wrong in their lives.  You can become guilt ridden.  I did.

It would have been easy for us to commiserate with each other about how bad, neglectful and inconsiderate our children were.  But, neither of us wanted to be victims.

Instead we looked at ourselves.  We hadn’t done everything right.  We had made mistakes but our hearts and intentions were good.  We hadn’t got it perfect and we didn’t care anymore.  I wasn’t the kind of mother that my daughter wanted and Margaret wasn’t the kind of mother that her son wanted.  In truth, we couldn’t work out what would make them happy.  Their expectations of us were too high.  We were acceptable to our other children so we must have struck the balance  somewhere.

It is actually a relief to admit to failure.  No one can burden you with their expectations any more.  Why ask anything of me?  I’m a failure and I don’t care – go and ask somebody else to meet your needs!

This may sound strange but I watched the years of pain melt from Margaret’s eyes.  There was no shame left for either of us.  We were both off the hook. We found each other perfectly acceptable and we did the best that we could.  She could now die more peacefully without torturing herself with regret.  So could I.

The next thing was her fear of dying.  Death wasn’t the problem but the process was.  She did not want to go into a hospice.  Margaret wanted to stay at home but she knew that the burden would become intolerable for her sister.  Very little nursing care was offered.  That was a disgrace.  The health authority failed her badly.

Arrangements were made with a friend who had saved up ‘special sweeties’ – a concoction of drugs to end it quickly.  Thank God she did not ask me to be part of that but the arrangements gave her comfort if things became intolerable.

This is probably cowardice on my part.  Two years ago I had to put my dog down.  She was a glorious Border/Lakeland cross with the courage or a lion.  Rosie was 15.  Her heart was giving out and her lungs were filling with fluid.  She should have gone by New Year’s eve.  I wanted her to die at home in her sleep.  My selfishness.  I made her hold on till the 2nd of January.  I wanted death the easy way.

Rosie trusted me with her life.  Taking her to the vet’s was awful.  I stayed with her till she died. Her eyes never left me and stayed open.  I watched the light fade.  I felt that she was watching me even in death.  What a Judas!  I cried for days.  I could not help Margaret with this one. Her friend must be stronger and kinder than me.

We had talked for hours despite being told that Margaret could only manage an hour at the most.  I don’t know where the energy came from.

It was ten o’clock when I returned to Alice’s house.  It had been such a long day and the drive had worn me out.  Bed seemed like bliss when the phone rang.  It was my niece, delighted that I had arrived.

”Get a taxi and get down to the ‘V’ but, for God’s sake, don’t tell my mother where you are going.’
‘
I protested that I was still wearing the clothes that I had travelled in and hadn’t even washed my face.  Ali had gone there straight from work and assured me that I would fit in perfectly.  Again, she told me not to tell her mother where she was.

It was too late.  Alice had overheard the conversation.  She howled in protest telling me that the place was full of gangsters, rogues and drug dealers and that I would get murdered.  It sounded good to me and she always exaggerates.  I was going and she insisted on coming with me.

As the taxi drew up we could hear the music. Making our way up a stone spiral staircase we found things in full swing.  It was more than the heat of the room that hit us when we entered.  The warmth, the welcome and the laughter swept us up and I was soon on the dancefloor.

Life kissed me full in the face.  But my sister-in-law was disgusted and walked out much to the delight of my niece.

”Thank God my mother’s gone.  We can really have a good time now. We’re going somewhere else.”

The next place of alleged ill repute was magnificent.  If Margaret and Alice had known where I had been with Jo, they would have thought that these places were convents.  Bodies glistened with sweat; the music made the room vibrate with energy and the Scottish loudness and lust for life pulsated everywhere.  The place was packed to capacity and it was only Thursday night. We were all on a high – what a life force and what a laugh!

I danced for hours without stopping and fell out of the door at two in the morning still full of energy.  My hair dripped with sweat and my clothes stuck to my body
What did I have to drink?  Three and a half litres of pure Scottish water and most of it seemed to be on the outside.  The streets throbbed with life as groups, arms linked, made their way home laughing and shouting to each other.  We were on our way back to V’s for a ‘lock in’ – after hours drinking.

What about these rogues, gangsters and vagabonds that would murder me?  They were just a treasure trove of stories and experiences.  I couldn’t have been safer with the F.B.I. round me.  I was in no danger.  They liked me and I liked them.  The only one that I felt sorry for was my sister-in-law.  She had missed out on a goldmine but that is what you get if you are judgmental.  They say that you should never judge a book by its covers.  It’s just as daft to judge people by their tattoos and their haircuts.

They gave me what I needed.  Death is intermingled with life.  Margaret was dying but they were alive.  I wasn’t trying to hide or fix my pain.  I was being realistic about it.  Life always has a balance.

I learned that secret of survival many years ago.  When my stomach aches, I try not to forget that my feet don’t hurt, I don’t have a headache,  my back is fine – everything is working normally except my stomach.  This helps not to let the pain swamp me.

I do the same emotionally.  My daughter is hurting me badly but my sons think that I’m great, I have many friends, life is good to me, I’m living in the house of my dreams and so on.  How can I begin to tell you how blessed I am?  That is how I cope.  I don’t displace pain.  I just put it into context.

This also applies to Margaret’s impending death.  While she is asleep, I am dancing.  Music and dance have always helped me to heal.  Both change the patterns of the brainwaves, alter the heartbeat and galvanic skin response.  Dance releases endomorphines.  It is a lot better than drugs.

Pain always has an antidote.  Wasn’t it pain that produced all the wonderful black music like the blues.  Maybe that is why oppressed people, like slaves, sang so much.  They sang to ease the pain.  But they never forgot how to celebrate.  They gave us rock and roll, rap, gospel and jazz.

I love my niece and I wanted time with her.

All her life she has been criticised for the places she goes, the company she keeps, the clothes she wears, for not buying a house, for refusing to save and get a pension fund.  I could go on.  But she has got it right.  You will never find Ali on drugs and anti-depressants.

Ali works with severely disabled youngsters, most of whom have been institutionalized from birth. It is her job to give them independence in the community.  This she does with passion and commitment.

She takes them to nightclubs, shopping malls, cafes, bars, parks, amusement arcades, swimming baths.  They go where she goes.  But much of this is not in her job description.  Ali talks about her clients as if they were the pope in Rome or the queen in Buckingham Palace.  Every little accomplishment thrills her.  She wants the best for them and fights to get it.

Many of her clients have been abandoned or have infrequent visits from their families.  Such is the disgrace of disability in the West;  we who are so advanced in technology, culture and world affairs yet so impoverished in common kindness.

How many times have you heard the story of the Good Samaritan?  How many times have you seen one in action?  Ali is one of them but it goes well beyond her work.

Death is an integral part of her job.  If she knows that someone is dying, she stays with them.  That is what human beings do for each other.  It doesn’t matter if her shift is due to finish.  She’ll wait.

Socially she is popular.  Everybody in the town seems to know her.  She frequents ‘dives’ that the watchdogs of public morality would shut down.  These tend to be the fun places where the whole kaleidoscope of humanity can be seen.

Ali always has time to chat to old men and women.  Some of them are incontinent after a few drinks.  This does not deter her.  She sees them as harmless and lonely.  She understands the misery of isolation.  That is why she fights so hard to make disabled people part of the community.

”They are going to pee themselves anyway so they may as well be out enjoying themselves as sitting at home lonely and depressed.”

I think that she is right.  I’ll bet that Hitler never pissed his pants yet look what he orchestrated.  There are worse things in the world than wet knickers.  Perhaps intolerance of those less fortunate than ourselves is one of them.

India is criticised for its caste system and having a group called the Untouchables.  We do the same and worse.  We do it with those of different colours and creeds.  Just watch what happens when severely disabled people are out in public places – the stares, the jibes, the sniggers.  If a child has AIDS or cancer they are often shunned.

I am no better.  I am disgusted by decay but I will sort that.

Instinctively Ali knew the misery that I would be feeling seeing Margaret in such a state.  She also knew the antidote.  Humour and laughter do it every time.  In the midst of death, life is still in full throttle.

The following day with Margaret was more bearable.  It had to be because I was unprepared for the next episode.

Margaret had vomited in her bed, the hallway and the bathroom.  The home help had asked her when she had been sick.  Margaret did not know.  She had not noticed.  How can you not notice that?  However, she was showered and in a clean nightdress when I arrived.

We talked again.  She wanted to be cremated.  So do I.  There was one important factor.  There had to be no alcohol at her funeral.  Not a hope in hell at a Scottish funeral. Margaret never drank but alcohol had blighted members of the family, her marriage, her son and friends.  At least, she was promised that not one penny of her hard saved cash would buy anything but food, tea and coffee.

The next issue was the Afterlife.  When Margaret first got cancer three years ago I sent her Many Lives, Many Masters by Dr Brian Weiss.  She read it without comment.  Now she was ready.  I told her what I knew and what I had experienced. I am not religious at all but totally believe that my spirit will live on.   I also know that there are parallel dimensions that we rarely get to see, but I have seen too much not to believe.  But there was no way that I would have misled her and given her false hope.  She wanted that hope. Sharing my experiences was all that I could do.

None of that was difficult.  I can talk about fears, funerals or other dimensions.  The hard part was my feelings of revulsion at the decay of such a lovely woman.

Margaret had false teeth. They were discarded on the arm of the chair.  She had pulled clumps of hair out and it was strewn on the hearth.  She was not repelled by her own vomit.  In all these years I have never seen Margaret without her teeth.  I have never even seen her in her underwear.  She was so private, proud and particular.  The degeneration was horrid and I was ashamed of me and my feelings.

I had made the mistake of thinking that I was more competent and capable than most people.  Why was I handling it so badly?

I can honestly say that I am not offended by bodily functions.  I like the smell of sweat.  It’s a turn on.  Seminal fluid and vaginal secretions have a lovely texture and taste.  Open wounds and blood are no problem.  I can clean them and dress them.  Many years of working with deprived children accustomed me to the smell of urine and unwashed bodies.  They all sat on my knee and had a cuddle.  Head lice are no more than a pest. This feeling was something else.

I had asked the guardians and the Universe to teach me about death.  I wanted it full frontal but I hadn’t expected this.

Probably the most destructive human emotion is disgust.  I used to think that it was hate but it is not.  Normally it is the actions of others that makes us hate them – they are cruel, unjust, unfair and make us feel powerless.   So we retaliate

Disgust is different.  It needs no reason to destroy, shun or annihilate.

I don’t hate slugs, maggots and cockroaches.  I know that they have an important function in the Universe.  They don’t deliberately try to harm me but I kill them because they disgust me

Disgust allows us to justify our darkest human emotions.  The Jews and the gypsies disgusted Hitler so he justified mass slaughter.  Some people are disgusted by gays.  That gives them the excuse to punish them for nothing.

I watched a programme on sex for the disabled.  It was awful.  Disabled people have the same needs for warmth, touch, affection and sexual activities as we do.  But they are made to feel dirty if such needs are expressed. They are publicly shunned. What is disgusting – their human needs or our intolerance?

I can’t sort out the Universe.  I can only deal with my own dark emotions.

Again, Ali came to the rescue.  I had to meet her in the town on Saturday afternoon.  Her mother was appalled.  I am not sure if she thinks that I am a bad influence on her daughter or that her daughter is a bad influence on me.  Who cares!  Ali and I have a great time.

The venue was down a side street behind scabby, black doors.  What a ‘dive’!  The karaoke was in full swing and the noise and laughter was deafening as people tried to shout above the music.  The floor near the bar area was already awash with spilled beer and the air hung with blue tobacco smoke.

We went to a table in the carpeted area which sported a thousand cigarette burns and just as much ground-in chewing gum.  The whole of humanity had gathered for this afternoon session from newborn babies to ancient grannies and granddads.  A toddler, with a face covered in snot and crisps, was sharing a lollipop with a bull terrier pup under the next table.

Spotting us it crawled over.  Ali shouted to its mother,

”Why is your wean dressed like a snow man?”

‘Wean’ is the Scottish equivalent for child.  The mother shouted back,

”It was raining when we came out”.

I couldn’t stop laughing.  It was mid summer and this toddler was zipped up in a white, winter fleece suit – originally white beneath the Coke stains and muck on the knees from crawling about on the filthy carpet.  It was kitted out for the antarctic not a Scottish pub in August.  The horde round the table were tattooed up to their armpits, men and women.

This may cause some sections of society to cringe in disgust.  It is not exactly the Dr Spock method of child rearing.  But that child was loved.  It beamed smiles everywhere.  I have worked for too many years with child abuse not to spot that ‘faint soul’ look in the eyes of a child who is hurting.  This child was learning social skills.  Everybody came and talked to it.  It saw the world as a friendly place and responded.

What impressed me most was the life force and the laughter.  You couldn’t fail to laugh in a place like that.  It was magic.

It was time for Ali to talk.  She was angry and fed-up by the criticism of her life style.  She was frustrated that some people couldn’t see the good in her.  Ali explained how difficult and demanding her job was with severely disabled and dying youngsters.  Old age was not an option for them so they had to make the most of their time.  It was her job to help them do just that.

Looking round the room, she sighed.

”This is my therapy.  When I finish a shift I need to go out and dance or I’d go mad.  I love these places.  Everybody accepts you and you have a great laugh.  I can feel the energy as soon as I come in the door.  You understand what I’m       saying, Eve.  I just wish that everybody else did.”

Life is kinder to some people so they don’t need these extremes.  We all find our own antidote to pain.  I prefer this to mind numbing drugs.  It’s a lot more fun but many would find my way of coping, and the places that I go to, disgusting.  Do I care!  Not a jot!  Walk my path and tell me if you could do any better.

I had found my antidote but it was not enough.  I had to find out why I had this revulsion.  Clean death does not upset me.  This one is dirty.

Death and decay are natural functions but death in the West is a great taboo.  It is becoming more and more remote.  Everything is done by professionals.  People die in hospitals, not at home.  Relatives are rendered impotent.  We have forgotten the art of dying and tending for those whose time has almost gone. We have forgotten how to cope with grief and pain and the anger that comes with it.

One of the most beautiful stories that I ever read was Odour of Chrysanthemums by D.H. Lawrence.  A dead miner, killed in a pit accident, was brought home and laid in the front room.  His wife and mother tenderly washed the coal dust from his body and wept as they dressed him in clean clothing.  What a perfect completion for a story.  What about the reality?

This is not exactly the best bedtime story to read.  Some months ago I chose it to help me go to sleep

I plumped up the pillows, pulled the duvet up, snuggled down and started to read, even though I had read it many times before.

Before I knew what was happening, the tears started to roll down my face and the sobs deepened.  I became that mother, and the body of the miner was one of my sons.  I had stepped right into the heart of the story.

Soon my pillows and duvet were wet with tears.  I chose not to get up but stay with the feelings of grief and sadness.  It was just too much to contemplate it being either of my sons.    Death was teaching me another lesson – how to use my time wisely.  I fritter time like confetti in the wind.

But there was something else.  Not only would the miner have been filthy,  he would have had open wounds.  He would have reeked with sweat and probably more.  Men got mangled in pit accidents.  But they were all taken home to their wives and mothers.  Caring for the dead and dying was a natural part of life.

I think that we have become remote and abnormal.  Well, I have.  My reaction to Margaret’s physical state tells me that.  But I refuse to accept it.  Disgust is only a feeling.  This will be my last time with Margaret.  I won’t have it spoiled.  She never disgusted me in life so why should she disgust me in death.  Vomiting, decay, incontinence are all natural processes.

I will have to go back to my Mother Earth for my answers.  She has never failed me yet.