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Today I asked the Doctor.... is this a symptom of the illness or a side effect of the medicines or is it a symptom not of the illness but of his new found insight into the illness.....
he had no answer it could be any one or all three.
As I progress more deeply into knowledge of the illness the less knowledgeable I get.
It is one of the most mysterious and mind boggling of illnesses.No two people diagnosed are alike either in the patterns of the progress of illness or in its paths to recovery.
Each takes his or her own path to their own levels of "equanimity".
Be prepared for the worst but never never stop believing in the best outcome.
For the illness thrives on despair,grief and tears.
I treat it like one very very spoilt child who startles with his evil and mischief on the one hand and endears and enchants with another.
.
Up against the biggest battle of my life which I dont know if I will ever win.
often I sink into feelings of sadness,guilt,anger betrayal,disapointments...however these only increase my own feelings of being the victim..and time and again I have to remind myself it is not I who is the victim but him.
The Chinese word for crises is written in two syllables translated they stand for danger/oppurtunity both simultaneously.
The crucial issue is whether or not we recognise and act upon the opportunities presented to us amidst the danger.
I have to tap myself often to remind me of this.
The oppurtunity to improve ourselves,the opportunity to serve,the opportunity to be kind and loving,the opportunity to set aside all fear. And more than anything else the opportunity to challenge the illness.
Towards achieving all these I began gathering forces some two years ago..I did not know at that time that this illness is long and trying..emotionally,mentally and physically.
I did Reiki,pranic healing,Art of living,I chanted for hours.. I prepared a spiritual web site.
I completed a three month course in cognitive behaviour therapy.
I had to rehabilitate myself before I could rehabilitate my son.
Touch the soul through love.The soul is indestructible and intact, touch it with love and he shall be whole again.
Mine has been love which has been untainted,blind,absurd,irrational,powerful,determined bordering on the stubborn.
Love for him and Him.
Often friends have said what about your life...what about us..are you sure you are doing the right thing by being so single minded.
Why have you cut out so much of what you had done earlier.
how to explain to them..when something like this happens to your child something inside just dies.
And can only be replaced with love for him and Him.
We had done all required..
There was medicine compliance,not a dose skipped,loving,unconditional,nonexpectant enviornment at home,gentle yet firm
approach, therapuetic communication techniques,psychosocial rehabilitation at a day care,loving detachment, minimal stress,no strangers at home...
But the subtle waiting never ceased,the whys resurrected time and again..there was a firm resolve to never let things slip again, to minimize disruption,to minimise pain.
Chanting helped me enormously it settled my mind .I wanted to find my son who I had lost somewhere between the haze of schizophrenia and the medicines correcting it.
Books give you only one kind of knowledge I had to supplement it with real experiences of people affected and so started our little bunch of siblings,parents
with real life experiences.Our own little club.
So often I have wanted to jump into his head and see where his thoughts carry him.What happens inside.I try very hard to understand his silences or be able to decipher the feelings in his eyes.Often I have had this very bizzarre thought what if it was possible to give him my brain.
If it is possible to lend hearts,kidneys,liver then why not the brain.
And if it became possible it would mean that he would carry my memories,my knowledge, my likes and dislikes,my interests my hobbies,my thresholds of tolerance and pain.
Then what happens to the SElf we learn about and experience in spirituality.If all lies in the brain what is this?
The Self/the soul is ever existent it is the essence/the enegy that vibrates through every cell of our body it is neither male nor female it is the yin and the yang,the ardhnarieshwar.
Is his soul broken too, if I could mend it would it make him feel better?
If I cant reach his thoughts can anyone anything touch his soul?
Alzeimers is alzeimer,cancer is cancer,diabeties is diabeties,parkinson is parkinson, then why is schizophrenia schz/scz,or ummentionable.
When we shorten names do we strip it of its dignity?
I wrote schizophrenia a million times ..I twirled the loops ..swung the circles..I wrote it in a myriad shades of colours of the rainbow..I embellished and decorated it with ribbons and flowers...I decided to give it dignity and grace.
The more I embraced it the less it had the power to tyrannise.
Dear Moeder,survivor,ally,nick,puzli, and all the others out there..
On my newest guidance from my spiritual guides I was told ...Your son is the Treasure Child..so precious and with a deep mission to bring you closer to faith.
Be grateful to him for showing you new ways of being.
In a universe where even a tiny snow flake is so perfect and beautiful there is simply no way that any thing could be treated as imperfect or not by Gods design.
If this be His design then so be it and I shall only learn lessons from it.
Minimum must do the maximum. A sentence I repeat often in relation to my sons medications.
From my own personal experience having watched him through five different medicines I have seen that his threshold lies somewhere in between when most symptoms disappear and there are manageable side effects.
As soon as the dose goes up to remove the still lingering symptoms there are huge payoffs to be made in terms of the side effects and the medicines have to be changed once again.
So each time the medicines are switched I pray let the minimum do the maximum.
Very Zen and so is my life.
Gone are the parties and socializing,gone are the fears of lack of money and a frantic search for more,gone are feelings of ennui and lack of direction, the friends are few yet true,the family is closer than ever before.There is less time to talk and more to express in all other ways.
Each moment is precious and there is little time to waste on frivolities and negativities.Forgiveness comes easier and it doesnt occur to criticize others.
Stoic yes but not solemn.
For at the "lowest" ebb of my life I embarked on the most elevating journey.
For today Iam writing in an extract from my "bible" Never gonna give up.
... "Whitney Houstons words are memorable... 'many nights we prayed with no proof anyone could hear in this time of fear when prayer often seems so vain'...'who knows what miracles you can achieve when you believe'
..to believe in Him when you have absolutely no reason in sight to believe him,thats faith.When all doors close,when problems have totally taken over you,when family cant help, doctors put their head down,and work seems a trial and putting on a happy face a burden,when healers and gurus and stones and chants and all else including yourself have failed and you feel unspeakably alone and abandoned do you still believe?Do you with understandable anger and deep disapointment throw God and goodness out of the window?Or with faith do you still maintain your poise and patience living life with dignity,doing your duties, waiting with grace?Can you love Him and trust Him even when he gives you no appparent reason to?
"I know people who have. I know stories too long and too personal to detail here,of love for God which was so big and true"
"Ive seen people razed to the ground with unimaginable pain,rise again only with faith.
And these people have not only overcome hell but even spread heaven while they lived through their coldest hours."......from Heartfelt by Cyrus Merchant.
No prayer goes unanswered.
Iam not terribly religious have never been so but do believe and now even more, that if you want something really badly and do all the correct things towards achieving it,there is no way that the universe shall not respond adequately.
Now whatever grace comes my way I accept it with gratitude.
Simple happenings enchant me and give joy.
My child has taught me plenty.
Patience,gratitude,compassion and simplicity.
Today Iam a much nicer person than I ever was.
1% of the world Population has schizophrenia or related degrees of psychosis.
Another 1% or so have other ailments, probably another unknown % dies of unknown causes, another unknown % has cancer so on and so forth...
I didnt ever ever think that very soon my family would be part of that percentage which is miniscule yet has consequences of unknown dimensions.
I dont take that 1% casually any more!!
One percent chance of the wbc count falling due to clozapine. I wasnt going to take for granted any more being part of the magical 99%.
What do I do to ensure my child is in that 99%?
The doctors offer no solutions,care at home has little to do with it so I turned to prayers..
Looking after my son was like looking after a baby,a big baby who spoke, was stubborn, had temper tantrums.
What worked eventually was calm anxiety free communication.No explanations,logic,emotions...Simple short sentences... it seemed to work.
One day at a time was what I had learned at the Alanon meetings I had attended during his drug days.
Well that is what it continued to be all about.Regardless of the diagnosis..regardless of the extent of the "tragedy" it is one day at time infact it is moment to moment, yet this living wasnt to be like living on the brink with anxiety and fear, it had to be calm,hopeful,loving,compassionate,joyous..I was perhaps taking the easiest journey after all it was to do with my child, there are many who extended the same energy, to not one, but many.
How did they reach there?
Unravelling almost simultaneously in my life was the spiritual.It gave the answers to all my WHYS ?Support and understanding came in the guise of a tightly knit powerful Buddhist group.
Mystically it entered my life just a month before all else happened.
It was as if providence/god/nature/universe was preparing me for the later events.
My very first introduction was to another mother with exactly-as was to reveal later -the same experiences as mine.
I was fascinated and revolted inturns by her story..little did I know that very soon I would be in exactly the same place as she.And she would be my most consistent and compassionate support.
Acceptance how bravely I had written this word just a few days ago..and guess what happened..when I read the term paranoid schizophrenia on my sons latest report..I felt again this paralysing chill all over.
We are just out of the hospital after his sixth change of medicines this time to Clozapine.
Hope again... for neither me nor the doctors can predict the outcome.Each medicine arrests some symptoms forgets others..each promises only some side effect which as it turns out are often too many to count.
Each brings out a different personae and somewhere in all this I have lost my son completely.
My heart breaks when I see him trying to cope with daily life.All things so natural and automatic to us are long, ritualistic and difficult for him.
Often Iam left wondering about what I can do to help him.
I must relearn acceptance once again.
I must learn loving detachment.
Imust do this for his and my sake for Iam useless when reduced to an emotional heap.
After three months of what are called post withdrawal symtoms my son went into a full blown delusional episode..he had been off drugs now for over 9 months.
This was certainly something else..but hope remained ..I refused to accept that this was an indication of Schizophrenia.The first time this word was mentioned by the doctor I could have wrung his neck!
And I spoke to deaddiction experts,and Iwent to the scientology office recently opened in India,I read all anti psychiatry literature,spent hours over Ron Hubbards words and prayed and prayed and hoped like crazy.
It wasnt to be...medicines were absolutely essential, that much was clear to me.
Acceptance...it took me one long year to simply accept and move from there.
Acceptance of it as an experience not a problem!
By the end of six months of looking after a boy crazy for drugs I was actually on my knees.I was tired exhausted depressed angry guilty by turns.
having reached the end and having tried all possible means to get him off the substances, it was decided that he be sent for deaaddiction.
In retropspect that decision delayed his treatment by one year.
Deaddiction centres especially here do not prescribe medicines hence we were all lost between symptoms of deaddiction and /or symptoms of schizophrenia. Neither they nor me knew what exactly was happening.
In fact at that stage my knowledge of psychiatric disorders was limited to clinical depression..Schizophrenia was as alien as the Mars and what the term denoted was vaguely connected to the memories of the movies I had seen.... The Shining and One flew over the Cuckoos nest..being fed on the 70s hysteria against psychiatry and medicines, I was virulently anti medicines and hated all Doctors especially Psychiatrist..