EPILEPSY. (First published in THE QUARTERLY)
I joined The Samaritans. I reasoned that if I couldn't walk too
well at least I could pick up a phone and listen. I did the training to
see if I was the right temperament for the job and the right person
for the job. You see, I didn't think I could do it. Oh yes, I could
speak to people and I could do my share of listening, which was half
the job, but what about my EGO. Was my ego telling me to let everybody
know that you do Samaritan work, that you HELP ‘people’. And what a
good person I was; or would be. This troubled me. Was I doing it for
the right reasons? Was I doing it for the right moral reasons? And then
the phone in the Samaritan office rang. It was my first call and I was
urged to answer it by my fellow, more experienced, Samaritans. I picked
up the phone: ''Hello, the Samaritans. Can I help you?'' There was
silence. Then a huge sob that nearly broke my heart in two. She had
family problems. HUGE family problems and needed someone to offload on.
I listened and I listened. Putting in a sympathetic 'yes' and 'no'
here and there and the occasional 'aha'. Then she brightened up. Made a
decision as to what she was going to do. Thanked me for listening and
all that I had done and hung up. Never once during that call did I
think that I was doing her a huge favour. Never once during that call
did I think anything only my concern for the client. I had passed my
own personal test!
During my nine years with the Samaritans I became what is known
in the Samaritan trade as a day leader. In other words I had to stay
within reach of my telephone in case certain decisions had to be made
and then it's down to me to take responsibility for that decision,
usually concerning a client. Like, do we drive out (flying squad) to
see a client if they need a home visit? Maybe that client had a history
of violence when they had had a drink. Or maybe they were just wasting
our time. Nine times out of ten I would say ''yes, call the flying
squad'' (those Samaritans who are nearest the client who will get called
out whether they like it or not. Of course they are not pressed into
going and maybe they're just not in, or are just about to pick up the
kids from school, and like that. But usually someone (an old, reliable
trooper) would be found.
But I held firm on not becoming a group leader. That area
involved the politics of the Samaritans. That wasn't for me. But I WAS
interested in training new recruits. Part of this training concerned
acting out the part of Samaritan and client. As a radio actor this was
right up my alley. But before we tried it out on the prospective new
recruits we tried acting it out with just the director of the local
branch of the Sams and a Group Leader. The Group Leader took the part
of the Samaritan and I took the part of the client; With me, crying
with snot running down my face as well as tears, angry one minute and
in denial the next, swearing like an f…ing trooper and then apologising
profusely. Me taking the part of an epileptic with no job ''I might
just as well hang a fucking sign round my bloody neck saying
epileptic,'' I wailed. I finished my performance by quietening down and
accepting the offer of the cup of coffee that she had offered me at
the beginning of the interview. The GL was open-mouthed. The director
had thought that we had tapped something deep within me that I just had
to let out. I looked at them and burst out laughing. ''I'm an actor,''
I said, ''that is what I do!''
Then we had to do it in front of the raw recruits. The director
couldn't watch. Instead he sat on the stairs OUTSIDE of the room, his
back to the door.
During my 9-year stay with the Samaritans I met some people who
in my eyes are HEROES. People who you could call on, day or night, to
come out and deal with some poor soul. Or just listen. People you could
rely on in a crisis. People who were full of compassion and love yet
knew when to be tough, when it was appropriate to be firm. Yet in their
firmness and toughness there was LOVE working. Always working.
I met Paul Booth there. He was a fellow polio person. But he was
in a wheelchair where I could walk. He was of the Ba'hi faith. In
between calls we would talk. He on what motivated him and I on what
motivated me. We always spoke of the Power of Love. We sometimes spoke
of psychic matters. Many years later we met up again. We had both moved
to Sussex, he to Uckfield and I to Lancing. We had a standing joke
that he (I being a veggie) would always have a cauliflower cheese in
the oven no matter what. And guess what? When I visited him in Uckfield
we had cauliflower cheese! It must have been in his oven for years! He
was a good worker for his faith and dedicated his life to the Ba'hi's.
After I had finished the cauliflower cheese it took me ten minutes to
figure out how to stand up! Not because of the vast meal but he only
had one chair that I could sit on and it was a low chair. Through the
years I, like him, had deteriorated. The curse of Post Polio Syndrome.
Anyhow, I eventually managed to haul myself up, said my goodbyes and
was off.
The last phone call I had from him was in Wales. He had cancer
of the liver. There was nothing anyone could do. But the nurses were
absolutely amazed. They expected him to be the colour of a banana and
in considerable pain. But the weight of healing prayer sent out to him,
that and his 'Chinese Herbs' kept it at bay. He lost the fight,
however. He was becoming weaker and had to be hospitalised. But still
no pain. He died peacefully in his sleep.
I got a call from his sister Wendy. I knew that he had gone.
After the call I went to bed. I turned the light off. I knew that he
was there. I tuned in. And there he was, standing up now for the first
time in his polio ridden life. He stood about 5' 10'', though I
couldn't see his legs. ''Tell Wendy that I'm so happy. Will you do that
for me, Paul? I'm SO happy. I knew that you were the person for the
job.'' He took my hand (I felt nothing physically but I know when
someone takes my hand) and I instigated a hug. He responded. The tears
came then. He left me. But there was, so very far away, if you can
measure distance in a situation like that, a heavily bearded man
wearing a turban and robe. I got the impression that he had brought
Paul to see me.
I wrote to Paul's sister and told her what had happened. I sent
the letter to Paul's address, as I had no other. Wendy rang me. She had
been at Paul's place to clear up and had opened my letter beneath the
picture of the now leader of the Ba'hi faith. This leader wore a turban
and a robe and was heavily bearded. Wendy was also of the Ba'hi faith.
These years later, after the brain tumour was removed, I became a
real epileptic. The tumour was the size of an orange. Benign, thank
god. A meningioma type. The epilepsy is treated with drugs, sort of
'chemical insulation tape' to prevent the electricity in my brain from
'sparking over'. When I do have a 'fit' it's like being plugged into
the mains. I have a 30 to 40 second warning. If deep breathing doesn't
ward it off (which is rare) then I lay on my right side and let it
happen. THERE IS ABSOLUTELY NOTHING I CAN DO ABOUT IT. I go into spasm:
my head jerking uncontrollably, pulled round to the right. My eyes
roll and my right arm goes walkabout. It lasts for between five and six
minutes. I'm conscious all the time but cannot speak. My breathing
making a strange, slobbering sound. Crazy as it sounds but my mind, or
consciousness, remains calm and reassuring, like the eye of a storm,
repeating over and over: it'll soon be over. You just have to ride it
out. And yet it's horrible. And that's an understatement. There is
absolutely no control what so ever. And when it's over I cannot speak
and my arm is paralysed. Gradually, over half an hour to an hour I
regain normal speech and the arm gathers strength. It's rather like a
spark plug that is arcing over, the wire having worn thin, the outer
insulation temporally gone. The engine will not function properly
unless something is done about the insulation. In my case chemical
insulation. More drugs? Well not always. It's taken nearly three and a
half years to get the balance right. But that's another story.
I've often thought of my father when an operation for a duodenal
ulcer went wrong and a clot of blood went to his brain causing a
paralysis of his left arm and the side of his face. The strength in his
arm was there only he just couldn't feel. He too became epileptic. I
vividly remember him being stretchered out by two ambulance men through
our restaurant. He was screaming wildly and grabbing on to anything
that came to hand. So they had to strap him down. Again they controlled
the fits with drugs.
My father took to drink to drown out the fact that he was once a
very athletic man, an ex-professional wrestler. When he drank he was
no longer the father I once knew and respected. I knew that he was
suffering. But I also knew that he could and did throw fake fits. He
was an expert at Pratt Falls and could throw himself on the floor and
fake a fit just to get attention. I remember saying at just 14 years
old that he'd ''lost his self respect''. He'd steal money from the
restaurant till just so that he could get smashed down the pub. Again
and again he'd promise that he'd give it up. But never did. Then we had
an argument, he and I. Over what, I don't remember. He threw one of his
fake fits. I just stepped over him and went out the room. But WAS it a
fake fit? I shall never know for sure. Perhaps that's why I chose
epilepsy as my subject for the ''client'' acting as an epileptic? Maybe
I felt such guilt at stepping over my father and leaving the room that
it all came back in my acting scenario! I don't know and never WILL
know. At least not in this life.
My mother and father divorced after he had an affair with my
mother's best friend. He got her pregnant. My mother also found out
that he had cheated at cards: marking the cards. Grandfather Bura was a
professional gambler and taught his sons all the tricks of the trade.
She had thought it odd that his close friends and business associates
didn't call anymore and socialise. This incident was BEFORE his
operation.
When my father died he came to me during a musical meditation
and asked for my forgiveness. He was kneeling down on his haunches (an
idiosyncratic habit when he had something important to say). I answered
him by saying: ''I only wish I could have loved you more, dad, and
there really is nothing to forgive on my part. Complete your journey and
go with god.'' He smiled and was gone. Even that, I thought later, was
a bit pious. But I'm absolutely sure that he did. Sure that I made him
just that little bit happier on his final journey!
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