Not My Son

A glorious one year!

iam writing after exactly one year.
The changes all around in this one year have been phenomenol so great that I can only see these as Magic happening in a big way.
My son is now on less than half the initial dose and so has been for the past 8 months or so hence I have lost the fear too that this may be temporary.
He is now in his last year of college : a bachelors in Business, has consistently scored well above B+ and attends office on his days off.
he gyms /plays tennis five to six times a week and above all has lost over 24 pounds of excess weight.
he is also driving the car once again.
He looks good, is feeling good and reveals that it seems he is "seeing life" once again.
Yes he is self absorbed still, is hesitant to socialise unless it is really close friends or family and yes needs to be reminded of things at times.
And ofcourse oversleeps.
But from having lost him almost completely it is boundless joy to see him in his current condition,
Thanks to.... his doctor,his own self motivation,his constant humour,the support that we could give...thanks above all to HIM who has made it happen.....

JULY 2006

Iam writing in after a really long time...
I do regularly check into the site but somehow havent written into the blog.
Probably because so much has changed since last year and I have been there standing on edge watching it all, "waiting to exhale"
Yes I was and am apprehensive. Will he get into the flow of studying again after a traumatic four year gap,how will he cope with college life ,would he be able to complete his assignments.Will he manage to wake up in time for his classes.
Well some good news yes he has been able to...and has gathered in his first year a respectable gpa.
How?
Well primarily because of his own grit and determination
second beacuse he is gifted with a natural optimism /easy going nature.
third because he has been helped along at home.
And most importantly studies has not been made out to be the be all and end all of his life.
And we see it day by day/week by week and he is assured that when ever he finds the pressure too much he can give it up.

Life now

Looking back to when I first started writing in, to now, life has moved eons.
My son now goes to college he is of course still on medication,still has a few symptoms and side effects but is at his functional best.
By the grace of God and human beings in Gods guise he is today much better.
My life now offers me far more time and space than I ever had before.
Thank you every body specially this site that has held my hand through my worst moments and given me some of my closest friends today.
For every one out there I reiterate that it is love and hope that makes it all work out in the end.
Seeing his progress I am more and more convinced that after the medicines do their bit(a large bit,from personal exerience I would say about 60%)the rest is done by a loving and caring psychosocial rehabilitation and reintegration into society, so do hold his/her hand and help them find their way.

Thought

A thought plagues me again and again, what if his schizophrenia was caused by drug abuse?What if it would be possible therefore to see him absolutely cured in a few years time.And this thought worried me constantly, especially after I met with a friend of my son who had also abused drugs,been prescribed an anti psychotic but thereafter was weaned off it and is so well now.Will the same be true for my child, will it ever be possible.Or am I dreaming still?

November2004

It has been a long long time since I last wrote in.
In October we all took a holiday out of the city into the mountains.It was absolutely fantastic for us all and so good for my son.He really enjoyed himself,sitting in the lounge restaurant in the evening listening to music, watching the people eating,befriending the restaurant manager and the waiters,discussing food,the choices on the menu.Walking in the evenings.It was wonderful!
He adapted to the new surroundings very well and the mountain air did a whole lot of good.
He is busy now like before into day care routine for three hours in the afternoon and basketball in the evening.Is reluctant still to go into any other academic or work routine.I trust it is still too early since his recovery only really began in July this year.

Hell

"The journey into darkness has been long and cruel,and you have gone deep into it" from a Course in Miracles.
We are more afraid of life than we are of death.
And this is how I feel exactly.Iam paralysed by self loathing.Turned inwards it has become a personal hell of obsessions,compulsions,depression,illness,anger, frustration.
The painful thoughts are my personal demons.
Knowing the familiar patterns,being able to verbalize these, is but the first step,it doesnt help pull me out of my personal hell.
Time and again the demons return..
And then I ask for a miracle and do not hesitate to say 'God please help me'

Humour

Nick your comments are useful and timely.
Yes the illness should not be mentioned by name when not asked for.In face of the current "studied" non awareness infact almost a revulsion to mental illnesses shared by the majority.It is in the best interests of the patient that the diagnosis is garbed under medical treatment/counselling/care etc.
At home we deal with it at most times with humour this I find finds a resonance with my son...who laughs along too.
In moments of crack up more often than not it is my serious response/depressed response/response full of foreboding that has distorted matters more. At other times my response is coloured deeply by my emotions vis vis my child.
Iam trying to curb all these.
Thanks once again ...all of you who write in. And please read one story under success stories written by a daughter sent in by the mother it has beautiful insights into the "mind" .The title is "People that have won."

Projection

I continue to project my own deep fears onto to my son,time and again I have blown situations completely out of proportion and exploded into anger and rage.
When it happened once again recently I did a very serious looking into my own self and was startled to note that that it had actually been me and not him or the external circumstances that were truly responsible for the distorted reactions.Memories of the past,my own insecurities,complexes gathered and created the hell. Looked at from a position of fear all good recedes and the entire focus becomes dark and menacing..
Fear and the frustrated anger that follows can take us back several steps in establising a trusting loving relationship.
All that I had built up in the past was threatening to come apart.
I had to make sure that my life force and conditon was always so high and positive that each situation threatening or not could be handled with love,wisdom and clarity.
Chanting is my pill for reaching there. One hour a day and Iam in a better position to handle life.My head is clearer,thoughts are not scattered and optimism comes more naturally.
If this is a "tapasya" and is to bear fruit it can only be done in a spirit of grace and surrender.

Positives.

The positives:
Is talking avidly and lucidly with family and friends.
Is smiling genuinely.
Sense of humour is returning.
Is begining to concentrate on written material.
Is not depressed.
Is working very hard on exercising his body.
Follows routine at day care except Yoga.
The negatives:
Voices return sometimes.
Has an obsessive urge to repeat movements.
Occasionally gets peculiar sensations in his body.
Feels lonely when friends do not respond.
Often speaks of how "difficult" each day is, for him and wonders at the ease with which the rest of us "live".

And it this last, which is "IT" isnt it?

Super Kid

There is my son just about begining to cope with normal life,trying very hard to fit in and on the other hand is my daughter a "super kid" who got brilliant results,was admitted into the best college and course,doing a million things simultaneously,madly busy and some what hyper.Determined in her heart to do the best,aching at many places, at having lost a brother she had looked up to and for never having experienced fatherly comfort and love.
I snap at her many times. on time scheduling, on taking it slow, we have many arguments, sometimes nasty.I wish her to spend more time with her brother,I wish she would include him in her social outings.She doesnt unless Iam there.Am I expecting too much?
Her conversations with him sometimes border on the motherly which irritates him,she is unable to strike a balance.Perhaps Iam being too demanding after all she is only 17.
Or perhaps I must strictly schedule at least one day a week when we can all go out together for a meal and just chat.
What will work I really dont know?
And then my son is moving rapidly into catching up with old friends and Iam so frighhtened that very soon they will distance themselves from him.So many fears .

Day care.

The day care centre was closed for two weeks during which it was opened on a few occasions by the special request of parents and I volunteered to help on these days,the experience was very useful.
It clearly showed how important routine and structure and precision in instruction is in recovery.These have helped my son enormously,the speed with which he has recoverd his abilities would not have been possible without their inputs.Each client also has a personal counsellor available on a daily basis to deal with the many cognitive distortions that accompany most clients who are finally stablising and responding to medicines.
The maximum time given to clients is two years,I do not know what happens afterwards, do they slide back,do they continue to improve, apparently a close check is maintained on progress in each case and the parents/caregivers are advised as and when the centre feels that maximum benefit has been obtained by the client and no more improvement is expected by a continued stay.
Today the centre opens once again and I certainly am joyful for life has been kind of chaotic without it.

July 2004

Time has aquired strange properties.It has in real time been only two weeks but it seems like months.Occasionally I wonder if me too is experiencing the surreality that my son experiences. In a sense it is like being truely alive so intense is each moment.
Two days ago my son slipped on the soccer field trying his best to run as fast as he used to before. He is advised now to rest his foot for at least two weeks.Panic set in when he had high fever the next night. Panic for he is on clozapine and it remained unclear if the fever was due to a drop in blood count or resultant of the injury,as it turned out,it was because of inflammation.
The morning was full with calling up doctors, checking on the antibiotics,arranging for a blood test and hoping and praying that the fever was not due to sudden TLC changes.
The positives of this medicine are many if one bear the tension, each week, of the blood report.I was hoping that at the end of four months there would be respite however I hear that the drop can happen any time and a once a month check is sacrosanct.

Jigsaw

At the end of 8 difficult months there is respite.. a certain predictability to events and long spaces of time to relax mentally especially. There have been days of dropping things, forgetting to eat,panicking at the slightest sound,days with jumbled thoughts,days when just about every thing has gone wrong.Nights when I have crept into bed completely exhausted,days when I have wept at the unfairness of it all.
The puzzle is finally coming together we still have a long way to go but the puzzle is begining to take shape.
It is a giant jigsaw puzzle with millions of tiny pieces and each day we fit in a new piece perfectly.

Right Now

Dear katrina,susan,moeder,survivor,ruby,puzli,nick,moe,Red...thank you for your supportive and encouraging comments...it sees me through the bad times.
Life is good at the moment..(I really must begin to stop seeing the good times as temporary) and my son is much much better Iam overjoyed and and so happy.
This medicine is a miracle for him I have not seen me this good since his diagnosis over a year ago. In fact he is moving too fast into "normal" ways and I must hold him back sometimes for fear that it may get too much to handle for him.
I shall be begining soon a training stint at the day care centre and am looking forward to it.

after the seizure

Its now two weeks since the seizure happened,very slowly we are going back to the earlier life style.
Clozapine has been reduced to 400mgs and an anti seizure added.
Iam upset with the doctor for he paid little attention when my son reported to him twice about feeling these electric shocks for brief seconds.Two weeks later the seizure happened.
I find that our doctor is difficult to talk to,he has many many clients and spend 10 minutes with each does not give an emergency number and refuses to give out his mobile no.
As I found out this crises time around it is imperative to have an emergency number to call.
Iam now seeing another doctor who facilitates all the above,on meeting him I felt instantly that here was someone who actually will see us through everything and give sufficient time too.
He suggests remaining on this dose for at least another one month without raising it.
Paradoxically I find that my son is better in a lot of ways after the seizure,cognitively he is much sharper and so say the counsellors at the day care centre too.
Peculiar but true.

seizure

Just as I was sliding into complacency something happened to jerk me rudely back into red alert.
My son had a seizure on Sunday night,it was a frightening experience and completely shook me up I thought I had seen it all obviously I had not.
The seizure was related to an increased dosage of the medicine he is on.
The doctor has reduced the medicine and added an anti seizure to reduce the chances of it occuring again.
Thats the maximum promise I could extract from the doctor I have learnt not to expect more they really cant give any guarantees.
After a day of slight daze he is back on his feet and fortunately remembers nothing of the seizure expect knowing that it took place.
My panic has still to subside, according to others who have experienced the same, it will take some weeks to fully recover from the fear.
Crying is the best possible release I cried after many months and felt strangely uplifted and clear.

One day at a time 2

Today he watched TV for a full 20 minutes with the volume on normal(not turned down),he wrote two pages for a presentation he was to give at the day care,he searched his cd collection,he expressed the desire to go out,he did not slump with his head down..simple things for most, accomplishments for him,green markers in his progress diary.
I have never been the most scheduled person or giving to making lists and planning for the day..most of my life I have planned impromptue,done things that suited my mood,changed jobs and styles rapidly and now Iam perhaps the most scheduled person 8am wake up time..bath time..going out time..return..meal time,medicine time, sleep time and so on...
Soon after he leaves for the day care I spend time with myself ..relax,have coffee,complete my prayers.
Planning is intrinsic to his survival ..one day at a time.. any plans running further than sleep time vex him..any talk planning weeks or months ahead are met with complete disinterest ..the day is so full for him in his head that one day at a time is all that he can take.
Each chore,action that happens so unconsciously for us is a conscious effort a planned out move for him. Any disruption especially a negative ones throws him off balance.
Yesterday a friend asked how long more and I had no answer tentatively I said at least two symptom free years and then we shall see how much responsibility he can carry himself...perhaps it is life long for the family..I dont know... so it is one day at a time and I let God take a hand in my affairs for the tighter I seek to control the less space He has, to do anything.

These days

Days when mission turns to drudgery,joy to resignation when all the highs are gone and you are left with a deadening recognition that you may actually be heading nowhere.
Days when the resposibility of not just yourself and your feelings and emotions and whole being but of another human being wears you down completely.
Days when you get that sickening feeling that perhaps you are doing it all wrong and then you want you start all over again not just from today or tommorrow but rewrite the whole past 20 years .
Days when you spend hours hopelessly staring at the wall wishing you could have prevented this that many years ago.
Days when you wonder what the next birthday would bring...new medicines,an ambiguous blood report....another addition/ deletion to the medicines,another diet program...a more interesting activity.. a relapse perhaps..another symptom...I wonder sometimes what it shall bring this year.

Rebirth

Once a week I go to the daycare centre and have chat with the counsellors there and together we work out the new goals to set for my son.
The earliest goal I set for myself,for him and got the counsellors to work on was to make him smile.
Two months later it started happening more there than at home but I caught glimpses of it and my heart was full of joy.
Today he is still symptomatic but relates to reality more avidly,makes interesting eye contact, colors drawings given to him with firm definite strokes,strikes off designated alphabets from a piece of writing as part of the concentration exercises and participates in group sharing of feelings.I brought back his work from the day care and see the rebirth of a child..unfolding softly before my eyes.
I have already been warned of what lies ahead, as reality creeps in so does the "shark" of depression.
I visualise it however as a dolphin bearing new life which carries him painlessly into his new life.

This is mine

"This is mine and I seek a spiritual solution to this situation"Wayne W Dyer
And i do on a daily basis.
This is not a problem and i fulfill my destiny without guilt/anger or remorse.I was assigned this task in this body and whatever his condition is in this incarnation it is not him and iam not it.
A young child may be an ancient soul.Who is to know?
By teaching my son to adamantly refuse to think of himself as limited in anyway.
and to help him see that his spirit is perfect and always connected to God,regardless of his impairments is the way to implant a spiritual solution in the mind of any young person.
To make this happen i try each moment to keep my thoughts centered on what i want rather than on what i dont.And use my thoughts to keep the enegy on healing rather than the illness.