Lost in the Dark Side of the Moon

I made a new friend when I was about 14 years old. We liked the same music. We read the same books and shared our Phan­tom and Man­drake comics. I used to be fas­ci­nat­ed by his col­lec­tion of Life mag­a­zine, with the stun­ning pho­tographs of Apol­lo moon land­ings. He used to be fas­ci­nat­ed by my home-made tele­scope. At a time when we were strug­gling with our Eng­lish, he was study­ing Russ­ian on his own — not from books, but by lis­ten­ing to Radio Moscow over short-wave radio. We spent our aca­d­e­m­i­cal­ly impor­tant 10th grade of school­ing by study­ing long hours togeth­er, late into the night. We were ‘dif­fer­ent’ in a way, from the rest of the crowd in our area.

We then went our sep­a­rate ways in col­lege. Our meet­ings became less fre­quent as my world expand­ed in many dimen­sions. It was after a year or so, that I first began notic­ing changes in him dur­ing our infre­quent meet­ings. He seemed dif­fi­dent and unsure of him­self. After a cou­ple of months, a com­mon friend said some­thing was real­ly the mat­ter with my friend. I went to his home and met his mom. She was in tears. She said he almost nev­er left his room, and sat by the win­dow the whole day, his hands grip­ping the win­dow bars. Even chil­dren had start­ed mak­ing fun of him. I went in his room. He saw me out of the cor­ner of his eye and looked away. He was clear­ly afraid. Afraid of some­thing, I didn’t know what. I decid­ed to act nor­mal, and asked him if he would come with me for a walk. We walked for about 15 min­utes, dur­ing which I made gen­er­al con­ver­sa­tion while he seemed ter­ri­fied.

When I came home lat­er that day, and thought about my friend, I real­ized he was sick. Men­tal­ly ill. He need­ed to see a psy­chi­a­trist. I did not know any­one who knew a psy­chi­a­trist, or even any­one who knew any­one who knew a psy­chi­a­trist. I myself was bare­ly 16. I knew my fam­i­ly wouldn’t help; they’d rather take him to some mir­a­cle work­er or rec­om­mend him to an astrologer. I then remem­bered that the clin­ic where my den­tist prac­ticed had a psy­chi­a­trist too. The next day, I again went to his home, met his par­ents, and tried to explain that their son need­ed to see a doc­tor.

My friend was Pun­jabi, a North Indi­an fam­i­ly. His mom was peren­ni­al­ly in tears. His dad, who was almost dou­ble my size looked men­ac­ing, and couldn’t under­stand. He sim­ply want­ed to shake his son out of what­ev­er he was going through and ‘be a man’. After much per­sua­sion, they agreed to let me try and help, so the next day, we were off to see the doc­tor. The doc­tor spoke a few min­utes with all of us and pre­scribed some med­i­cines, after which I spoke with him alone. He said it was schiz­o­phre­nia, and the med­ica­tion would help only to a cer­tain extent. He didn’t seem hope­ful about my friend.

I was busy deal­ing with the vicis­si­tudes in my own life for the next few months, after which I once hap­pened to meet my friend. I took him to the ter­race of my apart­ment build­ing, where we used to spend time togeth­er. He would nev­er look at me, and start to leave the moment I looked direct­ly at him. I tried my best to make him com­fort­able, and he began talk­ing slow­ly. He told me he spoke to Lee Falk every day. Lee Falk spoke to him for hours togeth­er, telling him what’s hap­pen­ing and what he should do. He had even shown him his own pri­vate lux­u­ri­ous bed­room in his rich man­sion, some­thing he nev­er showed any­one — my friend glee­ful­ly revealed.

In our next meet­ing, he told me why he was afraid. He was being pur­sued and fol­lowed day and night by LTTE ter­ror­ists, who were out to assas­si­nate him. He nar­rat­ed detailed expe­ri­ences of how Lee Falk gave him advance inti­ma­tion of where they were going to kill him and how he had clev­er­ly foiled five such attempts on his life.

In Zen and the Art of Motor­cy­cle Main­te­nance, Robert Pir­sig writes:

He was insane. And when you look direct­ly at an insane man all you see is a reflec­tion of your own knowl­edge that he’s insane, which is not to see him at all. To see him you must see what he saw and when you are try­ing to see the vision of an insane man, an oblique route is the only way to come at it. Oth­er­wise your own opin­ions block the way.

The far side of the moon is nev­er seen from earth. Humans first direct­ly observed it only when Apol­lo 8 orbit­ed the Moon. Is that why insane peo­ple are called lunatics? When there is Brain Dam­age, why does there have to be an Eclipse? Why is it Us and Them, and not We? Today, I feel a com­plex web of emo­tions. There is a feel­ing of guilt that I didn’t help as much as I could have. There is also the real­iza­tion that even if I knew about men­tal ill­ness at that young age, it was only from an aca­d­e­m­ic per­spec­tive. I didn’t have the psy­cho­log­i­cal or real-world where­with­al to effec­tive­ly help. At the end of it all, there is a sense of loss.

I lost my friend to the Dark Side of the Moon, and he must be say­ing:

And if the cloud bursts thun­der in your ear,
You shout and no one seems to hear,
And if the band you’re in starts play­ing dif­fer­ent tunes,
I’ll see you on the dark side of the moon

(In remem­brance of World Men­tal Health Day, 10th Octo­ber 2007, and my friend.)

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  • Mahen­dra: This is very trag­ic and alas, hap­pen­ing in India by the mil­lions. Yet offi­cial data sug­gest that the inci­dence of men­tal health issues is very low and soci­ety does it best to sweep it under the car­pet. What a filthy under-the-car­pet we must have!

    I had writ­ten a post on Indi­an Econ­o­my blog in July the respons­es to which are very telling:

    http://indianeconomy.org/2007/07/06/mental-health-in-the-workplace-food-for-thought/

    I am sor­ry for you, for his par­ents and above all for him, because it is such a waste of a life.

    Thanks for telling us the sto­ry.

  • One thing which I have heard psy­chi­a­trists say is that you can or should nev­er get mar­ried to a schiz­o­phrenic. It is impos­si­ble to do so, it seems.
    Inter­est­ing sto­ry, and it is impor­tant to bear that these dis­eases run in fam­i­lies, too.…

  • She­faly: Thank you for read­ing. Your arti­cle is very well writ­ten.

    Yes, the under-the-car­pet in India is its Dark Side.

    This sto­ry is from the 80s. Since then things have changed a lot…for the bet­ter. For e.g. refer­ring to the con­text of your arti­cle, IBM in Pune has a con­fi­den­tial coun­selor pro­gram free for employ­ees. Any employ­ee hav­ing any prob­lems can direct­ly, con­fi­den­tial­ly approach the coun­selor. These kinds of work­place ethics are now gain­ing accep­tance here.

  • Ram­bodoc: Thanks for your com­ment, but I’m sor­ry I didn’t get what you meant by “you can or should nev­er get mar­ried” — did you mean can­not?

    Yes, some of the men­tal ill­ness­es are hered­i­tary and that makes the treat­ment and recov­ery all the more dif­fi­cult. This friend’s fam­i­ly was starked­ly dif­fer­ent and aso­cial, indi­cat­ing hered­i­tary issues, and that’s why the doc­tor was not hope­ful.

  • Ram­bodoc:

    One thing which I have heard psy­chi­a­trists say is that you can or should nev­er get mar­ried to a schiz­o­phrenic. It is impos­si­ble to do so, it seems.”

    This is an exam­ple of how mis­lead­ing impres­sions are per­pet­u­at­ed by psy­chi­a­trists too. In adults, their late teens or 20s appear to be the most com­mon age at which a psy­chot­ic episode hap­pens. Late diag­no­sis is rare. Usu­al­ly pre­cip­i­tat­ed by some oth­er dis­or­der such as para­noid psy­chosis. Almost always this is the point at which diag­no­sis hap­pens and treat­ment starts. (Exper­i­men­tal pro­ce­dures such as brain scans may allow ear­ly ‘detec­tion’ but there is no pay­er will­ing to cov­er these pro­ce­dures in most coun­tries.)

    Near­ly a third of these adults recov­er ful­ly and nev­er remem­ber the episode and go on to lead nor­mal lives. A small per­cent­age suf­fer from chron­ic repeat episodes. The rest cope with sup­port from fam­i­lies and com­mu­ni­ties.

    Need­less to say many get mar­ried and have chil­dren. Yes there is a finite pos­si­bil­i­ty of chil­dren hav­ing schiz­o­phre­nia too but it is about 10% with one par­ent. Peo­ple take larg­er risks with many more pos­si­ble — and more def­i­nite­ly hered­i­tary — ail­ments with hav­ing chil­dren.

    Mis­in­for­ma­tion apart, rogue prac­tices in psy­chi­a­try in India run to GPs who are not qual­i­fied, but pre­scribe anti-psy­chot­ic med­ica­tion, which phar­ma­cies fill with gay aban­don.

    As the eco­nom­ic con­di­tions change in India, and social struc­tures col­lapse, peo­ple will need bet­ter cop­ing strate­gies and bet­ter aware­ness of these issues.

    Psy­chi­a­trists need to play a role in cre­at­ing this aware­ness too, rather than just using the grow­ing inci­dence to print mon­ey…

    Thanks.

  • Mahen­dra: Thanks for read­ing the arti­cle over on the IE blog. I am still a guest writer there and will return after the the­sis with more.

    The num­ber of desi blogs dis­cussing their work pres­sures is scary. We need to do some­thing now — aware­ness and action — before like all oth­er boats, we miss this too.

    My s-i-l, a very com­pas­sion­ate doc­tor, and I have dis­cussed cre­at­ing a foun­da­tion for aware­ness of such issues main­ly in the poor and tak­ing cop­ing strate­gies to them. Lets see how it takes shape. We need funds, exper­tise and seed pro­grammes…

    Thanks.

  • Such a touch­ing sto­ry Mahen­dra.
    I hope genet­ic test­ing becomes manda­to­ry for preg­nant women at least the non inva­sive triple test. Espe­cial­ly con­sid­er­ing the lack of facil­i­ties and knowl­edge to care for men­tal­ly ill patients.
    I remem­ber one of our col­lege trips to a water­falls in Tamil Nadu. A bus full of men­tal­ly ill women patients were brought to take bath in the water­falls, they were all chained and made to squat togeth­er using a wood­en stick; that is the sin­gle most hor­ri­ble mem­o­ry i have of the entire trip.

  • Mad­huri:

    The speed with which preg­nan­cy has been “med­icalised” in the last quar­ter of the 20th cen­tu­ry is scary. The genet­ic par­a­digm can blind us to the envi­ron­men­tal fac­tors that dri­ve up the inci­dence of a dis­ease. Yes odd­ly genet­ic expla­na­tions are lib­er­at­ing to some extent, because it removes blame from par­ent­ing, but it is a slip­pery eth­i­cal slope.

    Dif­fer­ent coun­tries hav­ing dif­fer­ent stan­dards for PGD or pre­na­tal diag­no­sis cre­ates asym­me­tries which leave the whole thing open to exploita­tion.

    The sto­ry of your trip is a great illus­tra­tion of the big lacu­na of under­stand­ing of men­tal health issues in India. It is sad and for me, per­son­al­ly, an impe­tus to act.

    Like you said on Nita’s blog y’day, we have to start with our own ecosys­tem first.

  • Mahen­dra — You wrote this so well and out­line the famil­ial atti­tudes that arose in response to your friend’s decline into schiz­o­phre­nia. My own sis­ter expe­ri­enced a psy­chot­ic break in her third year at uni­ver­si­ty. Yet, in spite of the fact that our father was a physi­cian, our fam­i­ly refused to acknowl­edge her dif­fi­cul­ties and to seek help for her. “What’s wrong with I?” became the hope­less and help­less refrain, fol­lowed by “She needs to buck up.”
    She has strug­gled her whole life to cope with all that liv­ing threw at her, and only sought treat­ment in her ear­ly 50s.
    Sweep­ing such a real­i­ty under a rug does a dis­ser­vice to the indi­vid­ual suf­fer­ing, the fam­i­ly and the whole com­mu­ni­ty.
    Here in Cana­da we have groups of home­less peo­ple liv­ing on the streets under hor­rif­ic con­di­tions. Many of these per­sons are men­tal­ly ill. Still, a preva­lent atti­tude toward them is “Move them on… into anoth­er neigh­bour­hood, back into men­tal hos­pi­tals, into group homes (but not in our com­mu­ni­ty 0 you know what that does to prop­er­ty val­ues, etc.) G

  • A touch­ing story.It is infact scary.People in India are still hes­i­tant to vis­it the psychiatrists.We def­i­nite­ly need coun­cel­lars at workplace.Workstress is increas­ing by the day and peo­ple are find­ing it hard to cope up with the day to day pres­sures of life.

  • Very dis­turb­ing and very touch­ing. Men­tal health prob­lems are hard to come to terms for the fam­i­ly. Thanks for shar­ing this per­son­al expe­ri­ence.

  • @Shefaly,
    I know that envi­ron­men­tal fac­tors do play a big role in men­tal health but at least one step to counter some of the oth­er caus­es like hered­i­tary would be to make PGD manda­to­ry. As you say it should be uni­ver­sal­ly gen­er­al­ized.
    I under­stand it is easy to blame it on the ‘genes’ and i was think­ing of writ­ing some­thing about it, but my con­cern is that there are many genet­ic caus­es of men­tal ill­ness and at least PGD would make it pos­si­ble for par­ents to have an option, espe­cial­ly when there is no absolute cure for these dis­eases yet and since there is mas­sive amount of igno­rance relat­ed to them.
    A few years back i was all set to go back to India and work at Manovikas kendra at kolkata, but due to cir­cum­stances things did not mate­ri­al­ize.
    How­ev­er as you are prepar­ing to open an aware­ness pro­gram, i would love to be a part of it.

  • @ Mad­huri:

    Here is a ques­tion.

    Let’s say a par­ent has schiz­o­phre­nia and knows it. He/ she gets mar­ried and there is a finite chance that the baby will prob­a­bly get schiz­o­phre­nia. Hav­ing lived his/ her own life on his/ her own terms, to what extent is it jus­ti­fi­able that the par­ent can decide to ter­mi­nate the foe­tus with a risk that the par­ent is pass­ing on to the foe­tus?

    Eth­i­cal dilem­mas like this require PGD to be close­ly con­trolled. Schiz­o­phre­nia can be man­aged with med­ica­tion, coun­selling and sup­port sys­tems. Cys­tic fibro­sis, for instance, can­not. Which is why some things are allow­able in test­ing, oth­ers are not.

    I did some work on gene ther­a­py for the UK Par­lia­ment, and got to see an ethics com­mit­tee in action. I do not envy them their job frankly!

    I am not ready yet for an aware­ness pro­gramme but am con­sid­er­ing cre­at­ing one with my sis­ter in law and a friend. I shall keep you post­ed.

    Thanks.

  • She­faly,
    No eth­i­cal issues here in the hypo­thet­i­cal sit­u­a­tion you described. It is the mother’s pre­rog­a­tive alone.
    Mahen­dra,
    Sor­ry, that was a typo, as you would have imag­ined.

  • Ram­bodoc: What if the father is the per­son pass­ing on the ill­ness?

  • She­faly and all: an impor­tant update to my com­ment above about IBM’s con­fi­den­tial pro­gram for its employ­ees: I just learnt that most prob­a­bly, the pro­gram is NOT con­fi­den­tial at all.

    The coun­selor has to “report” on each employee’s ses­sion, and send a report to IBM, includ­ing what tran­spired in the ses­sion AND “goals” for the next ses­sion. Worse, the employ­ees do not have any idea that infor­ma­tion about their ses­sion is being com­mu­ni­cat­ed back to their employ­er, IBM.

    I have 95% con­fir­ma­tion of this at present, will dig out more and update. This is ALARMING!

  • Mad­huri: Thank you. I’m glad it touched you.

    I’m not aware and have not yet thought about genet­ic test­ing for preg­nant women. Thank you for get­ting me think­ing about it.

    //A bus full of men­tal­ly ill women patients were brought to take bath in the water­falls, they were all chained and made to squat togeth­er using a wood­en stick…//
    Yes, this is hor­rif­ic indeed. I have many indi­vid­ual sto­ries to share, but this group con­dem­na­tion is indeed very, very, hor­rif­ic. You touched my heart with your comment…I don’t know what to say.

  • Sub­ur­ban­Life: Thank you.

    It is in a way illu­mi­nat­ing and in a way very sad, to see how peo­ple from dif­fer­ent cul­tures, eco­nom­ic stra­ta, and nation­al­i­ties, tend to treat peo­ple with men­tal ill­ness in the same con­de­scend­ing way out of pure lack of edu­ca­tion.

    Thank you for shar­ing your sister’s sto­ry. I’m all the more shocked by what you share because your father was a physi­cian! I just fail to under­stand this. If sci­en­tif­i­cal­ly edu­cat­ed med­ical prac­ti­tion­ers fail to under­stand the dis­ease, what hope can we have for the ordi­nary folk?

    //Sweeping such a real­i­ty under a rug does a dis­ser­vice to the indi­vid­ual suf­fer­ing, the fam­i­ly and the whole community.//
    You write very well. You’ve tak­en the words that I hoped I would’ve writ­ten. Because I think exact­ly the same way.

    It is not just the home­less who’re men­tal­ly ill in India. Here, men­tal­ly ill peo­ple come from all walks of life, from all eco­nom­ic stra­ta, and they’re all equal­ly dis­crim­i­nat­ed against.

    All: Those who’re read­ing this are indeed inter­est­ed in the men­tal health sit­u­a­tion regard­ing schiz­o­phren­ics in India. I would like to share one more “belief” that is preva­lent in India: girls who suf­fer from schiz­o­phre­nia are not diag­nosed as such, but mar­ried off by par­ents who think that “mar­riage will cure all her prob­lems”.

    I’m not speak­ing hypo­thet­i­cal­ly. I have sources to back what I’m say­ing.

  • @Shefaly,
    Do you at least agree that for those dis­eases that can be con­trolled with med­ica­tion, PGD will pre­pare the par­ents bet­ter to deal with a child’s ill­ness right from the begin­ning instead of years after onset of symp­toms? I do.
    It is bet­ter if the par­ent has con­trolled his/her dis­ease because that will at least give them a knowl­edge to raise their chil­dren.
    Not to men­tion there are lot of men­tal ill­ness caused due to age relat­ed chro­mo­so­mal abnor­mal­i­ties which should def­i­nite­ly be checked before the baby is born.
    One of my clos­est friends, did not under­go amnio­cen­te­sis and had a baby who was oth­er­wise nor­mal but had a cleft palate. The two day old baby had to under­go hoards of blood tests for genet­ic dis­eases which could lead to the cleft palate. This caused my friend and us a lot of anx­i­ety for so many weeks. I think like her, i would def­i­nite­ly do a one day of genet­ic test­ing rather than have months of anx­i­ety and suf­fer­ing.

  • Pre­rna: Thank you. I’m glad it touched you. It not only was scary, it is still scary to me. I remem­ber talk­ing to my friend in vivid detail. When he was glee­ful­ly point­ing out how Lee Falk had cho­sen him, I had to glee­ful­ly respond with empa­thy. Only then would he reveal more. I know (almost as a fact), that I’m the only one who knows what he was see­ing and believ­ing. This was the great­est chal­lenge to my empa­thet­ic skills: to be able to empathize with a hal­lu­ci­na­to­ry schiz­o­phrenic per­son who was my friend.

    Yes, no enlight­ened per­son doubts that we need to cre­ate a bet­ter envi­ron­ment so that peo­ple are freely able to con­sult psy­chi­a­trists. As you point out, increas­ing work pres­sures are mak­ing this more and more impor­tant!

    Dot­Mom: Thank you for your sen­si­tiv­i­ty. I’m so glad I can reach so many peo­ple through this blog. I’m prob­a­bly reach­ing out to more peo­ple about this than I per­son­al­ly was able to do so in my life since!

  • @ Mad­huri:

    Do you at least agree that for those dis­eases that can be con­trolled with med­ica­tion, PGD will pre­pare the par­ents bet­ter to deal with a child’s ill­ness right from the begin­ning instead of years after onset of symp­toms? I do.”

    On that this is what I believe:

    I believe that no amount of prepa­ra­tion actu­al­ly read­ies par­ents to face the ill­ness and decline of a child.

    Most par­ents — in the west — even with­out PGD etc are told about the risks their child has, based on the age and health pro­file of par­ents. A friend who just had her first baby at 36 was told that their Down’s syn­drome prob­a­bil­i­ty was 1 in 1200. It means noth­ing real­ly in tan­gi­ble terms till the baby is born..

    Some peo­ple also refuse to have tests which are now seen as ‘nor­mal’. A friend in Cam­bridge and his wife refused amnio although his wife was geri­atric moth­er, and they have a daugh­ter who has Down’s. For my part as a friend, I keep him abreast of all research in this area and all pol­i­cy devel­op­ments which will help them as par­ents.

    Mad­huri, both of us know that inci­dents may make things tan­gi­ble for us as humans but they do not address issues at a pop­u­la­tion lev­el, which is where the ethics get murky. The fur­ther removed it is, the eas­i­er

    If we elim­i­nate all the pos­si­ble ‘imper­fect’ peo­ple, how far are we from gen­der selec­tion (cf female foeti­cide thread on Nita’s blog) and design­er babies?

    @ Mahen­dra: That empa­thy is the hard­est thing to find inside us. Say­ing we agree with them when we do not…

    That IBM pro­gramme not being con­fi­den­tial does not sur­prise me. Patient con­fi­den­tial­i­ty in India is a non-exis­tent con­struct. At the work­place, an employ­ee is done for if the man­ag­er is unsym­pa­thet­ic..

    Thanks for shar­ing this thread with us. I feel pas­sion­ate­ly about this issue — hav­ing seen some lives destroyed by the igno­rance around them. I have also seen how a family’s sup­port, empa­thy and courage can help a per­son recov­er ful­ly. At the same time I feel for­tu­nate that life allowed me to learn so much so I can do my bit to pre­vent oth­er promis­ing lives go the same way.

    Thanks.

  • She­faly: //This is an exam­ple of how mis­lead­ing impres­sions are per­pet­u­at­ed by psy­chi­a­trists too.//
    I request you not to see the opin­ions of psy­chi­a­trists and psy­chol­o­gists prac­tis­ing in India from an aca­d­e­m­ic, uni­ver­sal, and med­ical­ly objec­tive ‘lens’ that can lead you to myopic obser­va­tions like the above. While your opin­ions might be jus­ti­fied med­ical­ly, men­tal ill­ness­es and their treat­ment are a very social affair, not just med­ical ones.

    If you per­son­al­ly talk with a psy­chi­a­trist or coun­selor why this “you should not mar­ry schiz­o­phren­ics” opin­ion is held and prop­a­gat­ed in India, you might get bet­ter insights. Remem­ber, it is not just a med­ical issue, but large­ly, a social one.

    //In adults, their late teens or 20s appear to be the most com­mon age at which a psy­chot­ic episode happens.//
    Schiz­o­phrenic symp­toms typ­i­cal­ly start appear­ing after puber­ty. Typ­i­cal­ly, it is diag­nosed between 15–25 years of age.

    //Late diag­no­sis is rare.//
    I do not know how you’re gen­er­al­iz­ing this, and whether you’re refer­ring to uni­ver­sal sta­tis­tics or Indi­an ones. In India, in most cas­es, the truth is that there is no diag­no­sis at all. Thou­sands of peo­ple are sim­ply admit­ted to men­tal insti­tu­tions as being “mad”, with­out there being any diag­no­sis at all.

    //Usually pre­cip­i­tat­ed by some oth­er dis­or­der such as para­noid psy­chosis. Almost always this is the point at which diag­no­sis hap­pens and treat­ment starts.//
    Not in India. Like I men­tioned in a pre­vi­ous com­ment above, when the symp­toms start appear­ing, it doesn’t lead to diag­no­sis, but to mar­riage (in case of girls).

    //Nearly a third of these adults recov­er ful­ly and nev­er remem­ber the episode and go on to lead nor­mal lives. A small per­cent­age suf­fer from chron­ic repeat episodes. The rest cope with sup­port from fam­i­lies and communities.//
    Again, I do not know which base pop­u­la­tion you’re refer­ring to when you cite these sta­tis­tics. If you’re say­ing near­ly a third of Indi­an schiz­o­phren­ics recov­er ful­ly and go on to lead nor­mal lives, let me again cau­tion you. I checked with a pro­fes­sion­al coun­selor and she con­firms that there can­not be any Indi­an sta­tis­tics regard­ing men­tal ill­ness­es worth talk­ing about, for­get ref­er­enc­ing.

    When you say a small per­cent­age suf­fer from chron­ic repeat episodes, you’re vast­ly, I repeat, vast­ly, under­es­ti­mat­ing the prob­lem. I per­son­al­ly know how schiz­o­phren­ics are treat­ed in India, how they are ostra­cized not only from soci­ety, but from their own fam­i­lies as well.

    //Needless to say many get mar­ried and have chil­dren. Yes there is a finite pos­si­bil­i­ty of chil­dren hav­ing schiz­o­phre­nia too but it is about 10% with one par­ent. Peo­ple take larg­er risks with many more pos­si­ble — and more def­i­nite­ly hered­i­tary — ail­ments with hav­ing children.//
    Risk has two attrib­ut­es — prob­a­bil­i­ty and impact. The extent of risk is the prod­uct of the two. Which ail­ments have a high­er risk? From heart dis­ease to dia­betes, many dis­eases have a lot of prob­a­bil­i­ty, but the impact is con­trol­lable and treat­able. In the case of schiz­o­phre­nia, the prob­a­bil­i­ty might be less­er, but the impact is so high, that pro­fes­sion­al psy­chi­a­trists and psy­chol­o­gists advise against hav­ing chil­dren with schiz­o­phren­ics.

    Note that when inter­pret­ing someone’s opin­ion of mar­ry­ing or not mar­ry­ing, the respon­dents assume that it is chil­dren that is under the dis­cus­sion radar. But, mar­riage doesn’t nec­es­sar­i­ly mean chil­dren. So, I also checked about what is the pro­fes­sion­al opin­ion regard­ing mar­riage with­out chil­dren, and the answer is the same in the Indi­an con­text: it is not rec­om­mend­ed. The rea­sons are too man­i­fold for me to elab­o­rate in these com­ments.

    Giv­en all this, both psy­chi­a­trists and psy­chol­o­gists advise against mar­riage for schiz­o­phren­ics. I am cur­rent­ly research­ing a lot into this issue with the help of a pro­fes­sion­al coun­selor and am still learn­ing from her expe­ri­ence. But I can safe­ly state that the opin­ion against schiz­o­phren­ics mar­ry­ing in the Indi­an con­text is not borne out of lack of knowl­edge, stub­born­ness, com­mer­cial­iza­tion, and the like. It is a very knowl­edge­able, rea­soned opin­ion borne out of knowl­edge about the Indi­an soci­ety.

    //Misinformation apart, rogue prac­tices in psy­chi­a­try in India run to GPs who are not qual­i­fied, but pre­scribe anti-psy­chot­ic med­ica­tion, which phar­ma­cies fill with gay abandon.//
    True. For­get GPs, I would even say that all that psy­chi­a­trists in India, are inter­est­ed in, is pre­scrib­ing med­i­cines. That is why, I think that it is the psy­chol­o­gists, the coun­selors, who are real­ly the most help­ful.

    //As the eco­nom­ic con­di­tions change in India, and social struc­tures col­lapse, peo­ple will need bet­ter cop­ing strate­gies and bet­ter aware­ness of these issues.//
    No one in India seems to be need­ing any bet­ter strate­gies or aware­ness. They con­tin­ue to flock to the reli­gious and super­sti­tious folks. The changes in eco­nom­ic con­di­tions in India are irrel­e­vant! Social struc­tures col­laps­ing — what­ev­er you’re refer­ring to — have noth­ing to do with men­tal ill­ness and how it is per­ceived social­ly.

    //Psychiatrists need to play a role in cre­at­ing this aware­ness too, rather than just using the grow­ing inci­dence to print money//
    Absolute­ly

  • You are right she­faly,
    Aware­ness and knowl­edge is most impor­tant.
    But i do not see aware­ness and knowl­edge sud­den­ly trans­form­ing the Indi­an soci­ety with­in my life time, look at what hap­pened to the dowry sys­tem. Do you think the peo­ple who offer dowry are not aware or knowl­edge­able?
    Dont get me wrong, i do not think of any­one as imper­fect. I am not for design­er babies at all. But until such a day when a men­tal­ly retard­ed per­son is treat­ed equal­ly in our soci­ety, i do rec­om­mend genet­ic coun­sel­ing for every­one. This can and should occur hand in hand with spread­ing aware­ness.

  • Beau­ti­ful­ly writ­ten.

    I do not want to go in the social lin­guis­tics of what you wrote.

    What mat­ters is that you tried to be there for him as much as you could.

    I have lost a cou­ple of friends who were very much a part of my child­hood. And even today when I remem­ber them, I regret that I could not say a prop­er good­bye.

    You wrote this piece amaz­ing­ly well.

    Thanks

  • Mahen­dra,
    It seems I am (as I remarked in Ashok’s blog) a Mas­ter Baiter with An Unqui­et Mind!
    Harharhar. 😀

  • I guess I am late here, and most peo­ple have said what I want to say. A touch­ing sto­ry.

  • Very touch­ing and scary indeed… and a per­fect end­ing by Pink Floyd’s writ­ings. In India we still have taboo about going to psy­chi­a­trists and most of us think of men­tal ill­ness as incur­able. But all I can offer here are my sym­pa­thies… and good that you were there for him.… thats the best help, to start with.

  • Mahen­dra:

    The cru­cial seg­ment miss­ing in my post was “if access to the best treat­ment were avail­able, then…”.

    To help 2 fam­i­lies in India whom I know, over the last 5 years or so, I have served as a coun­sel­lor, albeit for­mal­ly untrained — if the para­noid schiz­o­phre­nia patient can make even one rela­tion­ship based on trust then there is hope and usu­al­ly it is the psy­chi­a­trist but in these cas­es, it was I who was the keep­er of this trust. Nat­u­ral­ly I have had to draw upon oth­er peo­ple. One of them is my rakhi-broth­er who is a Har­vard Med­ical School Pro­fes­sor in psy­chi­a­try; he also put me in touch with 7 or 8 psy­chi­a­trists and psy­chother­a­pists in India. I also made con­tact with NIMHANS and spoke at length with spe­cial­ists there. So these are not my idle opin­ions based on human com­pas­sion but things I have learnt from serv­ing as the sup­port mech­a­nism for 2 peo­ple who chose me, out of all human­i­ty, to be the recip­i­ent of their trust. One has recov­ered and is func­tion­ing with­out med­ica­tion after near­ly 2 years; one is find­ing her life is in dis­re­pair. One patient accept­ed there was a prob­lem, one did not. One had a high rate of com­pli­ance with drug reg­i­men, the oth­er shunned them. The for­mer got help from a ther­a­pist and fam­i­ly and me, the lat­ter did not.

    Alas, psy­chother­a­py has its lim­its and even psy­chother­a­pists acknowl­edge that. Chem­i­cal inter­ven­tions are required in many cas­es.

    Thanks.

  • Dear Arzan: Thank you very much for your kind words.

    //What mat­ters is that you tried to be there for him as much as you could.//
    Thank you. Unfor­tu­nate­ly, at the same time that he was slip­ping into greater depths, my mater­nal grand­fa­ther was on his deathbed in our home. He was the only grand­fa­ther I had because my pater­nal one passed away when my Dad was 4 years old. It was a very dif­fi­cult time, with all rel­a­tives from dif­fer­ent places stay­ing at our place because of our grandfather’s con­di­tion. It was unfor­tu­nate that this hap­pened simul­ta­ne­ous­ly.

    //I have lost a cou­ple of friends who were very much a part of my child­hood. And even today when I remem­ber them, I regret that I could not say a prop­er goodbye.//
    Once again, like Sub­ur­ban­life above, you’re tak­ing words out of my mind. I deeply under­stand your feel­ings as few peo­ple do. Not being able to say a prop­er good­bye leaves a last­ing, per­ma­nent, mark in the heart. It nev­er goes away.

    //You wrote this piece amaz­ing­ly well.//
    Thank you. I feel very hon­ored and hum­bled, but am glad that it touched you.

  • Ram­bodoc: Thanks for that! 🙂

    Nita: Thank you.

    Oemar: Nice to see you back. Thanks for being the first one to com­ment on the Pink Floyd angle. Many months back, when I first start­ed this blog, I had an idea for a post that jux­ta­posed Pirsig’s com­ment in Zen and the Art of Motor­cyle Main­te­nance with Pink Floyd’s Dark Side of the Moon. I was in fact going to post just about this link between the two as I thought it to be extra­or­di­nary. I nev­er came around to post­ing it. Then on the occa­sion of The World Men­tal Health Day, I came up with this post, and brought those long await­ed thoughts into this post. My wife calls this atti­tude (I dare not say abil­i­ty) — “knit­ting” ideas togeth­er!

    //good that you were there for him… thats the best help, to start with.//
    Thank you. I tried, that’s all I can say. You are very right, being there is the first step towards help­ing.

  • She­faly: //The cru­cial seg­ment miss­ing in my post was “if access to the best treat­ment were avail­able, then…//
    Yes indeed. And that is a very, very big If-Then. And over and above it, even if access is avail­able, that doesn’t mean peo­ple will avail of that access. That is the sad part about soci­ety in India, as some of the com­ments above show.

    //…if the para­noid schiz­o­phre­nia patient can make even one rela­tion­ship based on trust then there is hope and usu­al­ly it is the psychiatrist//
    I know how para­noid schiz­o­phren­ics are suc­cess­ful­ly reha­bil­i­tat­ed in India to some extent. There is a con­cept of a “half way home”, and I know peo­ple who’ve worked as psy­chother­a­pists in such homes. The “half way home” is a place where recov­er­ing patients live in a sim­u­lat­ed fam­i­ly life. Those who are able to con­trol their hal­lu­ci­na­to­ry episodes are then sent for­ward to their real homes. Some of the sto­ries from such half-way homes are indeed grue­some, some are inspir­ing.

    I know of a girl who was “mar­ried off” by her moth­er think­ing that her appar­ent “strange­ness” would be cured with mar­riage. The moth­er did not divulge any details of the girl’s sick­ness to her elder sis­ter and father, both of whom were busy with their own lives.

    She was ulti­mate­ly divorced, because her in-laws couldn’t deal with her sick­ness, and she’s back at home. Now, with full treat­ment includ­ing med­ica­tion and coun­sel­ing, she is liv­ing with her fam­i­ly. She has been trained in such a way, that when­ev­er she has hal­lu­ci­na­to­ry and self-harm­ing ideas, she express­es them to her moth­er and sis­ter. She says, “Now, let us all kill our­selves.” Her moth­er and sis­ter are now trained as well, and know how to respond to this.

    This is the trust that can exist only between her and her moth­er. It doesn’t and usu­al­ly can­not exist with any in-laws, how­ev­er sup­port­ive they may be. This is one of the rea­sons, why psy­chi­a­trists and psy­cho-ther­a­pists advise against mar­ry­ing schiz­o­phren­ics in India.

    //So these are not my idle opin­ions based on human com­pas­sion but things I have learnt from serv­ing as the sup­port mech­a­nism for 2 peo­ple who chose me, out of all human­i­ty, to be the recip­i­ent of their trust.//

    I can­not tell you how glad and inter­nal­ly hap­py I am that some­one like you is tak­ing these pains! How I wish soci­ety were like you! Alas, that is not the case how­ev­er. I am not refer­ring to your opin­ions as ‘idle’, rather, I’m very hap­py that you are respond­ing to this con­ver­sa­tion with the pas­sion that is so obvi­ous. I wish more peo­ple respond to it like this — it is far from ‘idle’.

    //One has recov­ered and is func­tion­ing with­out med­ica­tion after near­ly 2 years; one is find­ing her life is in dis­re­pair. One patient accept­ed there was a prob­lem, one did not. One had a high rate of com­pli­ance with drug reg­i­men, the oth­er shunned them. The for­mer got help from a ther­a­pist and fam­i­ly and me, the lat­ter did not.//
    Thank you for shar­ing your expe­ri­ence. Each case has to be han­dled and treat­ed indi­vid­u­al­ly. As I’ve said before, this is a social issue, as much as it is a med­ical one.

    //Alas, psy­chother­a­py has its lim­its and even psy­chother­a­pists acknowl­edge that. Chem­i­cal inter­ven­tions are required in many cases.//
    Of course! Chem­i­cal inter­ven­tions are required in almost all cas­es of schiz­o­phre­nia. Psy­chother­a­py is just a sup­port­ing fac­tor. The sad fact, as many have point­ed out in these com­ments, is the social stig­ma asso­ci­at­ed with going to a psy­chi­a­trist in India. A psy­chother­a­pist is not labelled as a “men­tal doc­tor”, unlike a psy­chi­a­trist, and hence is more acces­si­ble in the social con­text. While they do their best in refer­ring cas­es to psy­chi­a­trists, not all patients and their fam­i­lies do so. The peo­ple who actu­al­ly vis­it psy­chi­a­trists is a minis­cule num­ber in terms of per­cent­age. And giv­en India’s pop­u­la­tion, this minis­cule per­cent­age turns out to be hordes of peo­ple in queues out­side and inside psy­chi­a­trists’ clin­ics. No won­der then, that all that psy­chi­a­trists do is pre­scribe med­i­cines, give ECTs, and send them back.

    The num­ber of peo­ple wait­ing to get an ECT in a pri­vate hos­pi­tal in Pune will amaze you! One has to wait for 4 or more hours, or come back anoth­er day.

    This is the men­tal ill­ness scene in India. If you want to under­stand more, you need to talk to psy­chother­a­pists, not psy­chi­a­trists.

    Once again, I’m shar­ing this out of pas­sion, because I see you are pas­sion­ate about this as well. And I can­not tell you how much I respect and admire your pas­sion, because there are very few peo­ple who are even think­ing about men­tal ill­ness in India, for­get doing some­thing about it. I humbly say “Thank You”, to have the patience to read this and your pas­sion behind doing so.

    She­faly, once again, thank you.

  • Mad­huri: I’d said “I’m not aware and have not yet thought about genet­ic test­ing for preg­nant women. Thank you for get­ting me think­ing about it.”

    Now, after think­ing about it, I think no. No test­ing of any sort should be manda­to­ry. It is up to the wife as well as the hus­band to decide what sort of test­ing is required before and after mar­riage.

    She­faly: //What if the father is the per­son pass­ing on the illness?//
    I agree with Ram­bodoc, that there are no eth­i­cal issues involved here for me. Whether to have a pre-nup, whether to have AIDS tests done, whether to have any and all sort of tests, before or after mar­riage, is a pre­rog­a­tive of the male (hus­band) and female (wife) involved. The gov­ern­ment can­not and should not have any such say in the mat­ter. (You didn’t say ‘gov­ern­ment’, this comes from ‘manda­to­ry’ from Madhuri’s com­ment).

    To con­sid­er your exam­ple:
    //Let’s say a par­ent has schiz­o­phre­nia and knows it. He/ she gets mar­ried and there is a finite chance that the baby will prob­a­bly get schiz­o­phre­nia. Hav­ing lived his/ her own life on his/ her own terms, to what extent is it jus­ti­fi­able that the par­ent can decide to ter­mi­nate the foe­tus with a risk that the par­ent is pass­ing on to the foetus?//

    When your par­ent got mar­ried, did he or did he not reveal his schiz­o­phre­nia to his wife? If he did not, he has been dis­hon­est. Talk­ing about fur­ther and future ques­tions of his moral­i­ty, and whether they are jus­ti­fied or not, is imma­te­r­i­al — he may act dis­hon­est­ly in what­ev­er way he choos­es.

    From an objec­tive view­point, there are no eth­i­cal ques­tions involved, as the mas­ter-baiter says.

  • I have had a some­what sim­i­lar expe­ri­ence. There was this class­mate of mine, he was very anti social and used to have huge dif­fi­cul­ties in stud­ies. It was quite obvi­ous that he had prob­lems but his par­ents want­ed him to study in a nor­mal school, not in a school for ‘retards’ as they called them. It was only when they real­ized that their son didn’t have a future in this sys­tem, that they decid­ed to trans­fer him to the school for men­tal­ly chal­lenged stu­dents. Many many years of his life were wast­ed in our school.

    BTW very touch­ing write up.

  • Dijo: Wel­come and thanks!

    Thank you for shar­ing. Par­ent­ing such kids is a tough task indeed. I sym­pa­thize with such par­ents and hope they gain the courage to deal suc­cess­ful­ly with their sick kids.

    You are so right — the obsti­nate wish to school them in a nor­mal way led to so many years of his life wast­ed…

    I also know of the oth­er side of the coin: chil­dren who are excep­tion­al­ly intel­li­gent. Even in such cas­es, nor­mal school­ing doesn’t work, in fact, it caus­es many prob­lems. I know of a case in Pune where the par­ents of an excep­tion­al­ly intel­li­gent child were advised to admit their child to a dif­fer­ent school, that spe­cial­ly dealt with such chil­dren. It was heart­en­ing to know that such schools also exist in India! 🙂

  • That’s news. Nev­er heard of schools like that. And thanks for the com­ments on my blog. You seem to be keen on build­ing some­thing of a com­mu­ni­ty no?

  • Dijo: you’re wel­come. That’s what blog­ging is all about, right? 🙂

  • Vivek Khad­pekar

    Mahen­dra,

    After our cou­ple of inter­ac­tions of Shefaly’s blog I thought I’d check out yours. This was the first link I clicked, a very mov­ing and very dis­turb­ing sto­ry.

    It gave a whole new sense to the Pink Floyd album to the title of which you allude. I pulled it out and, since my turntable is not func­tion­al, just read the lyrics print­ed on that icon­ic jack­et. More than thir­ty years since I acquired it, I dis­cov­ered some new, unset­tling mean­ings which, I hope will not cause me sleep­less nights.

  • Vivek,

    Wel­come to my blog and thank you for your kind words.

    This inter­pre­ta­tion of the lyrics has become quite a pop­u­lar one. The ‘must be say­ing’ link at the end of my post will lead you to a site which is one of the most defin­i­tive inter­pre­ta­tions of the Dark Side’s lyrics.

    If you dis­cov­ered new mean­ings after more than thir­ty years, I feel very hon­ored — but please don’t have sleep­less nights! 🙂