A few weeks ago, we got the news that my husband's youngest brother, was diagnosed with Stage IV lung cancer. It had spread to his bones, liver and brain. The prognosis was 4-6 months without intervention. The family (my husband and his other brother) decided to treat him palliatively; aggressive treatment wasn't really an option. My husband made plans to fly out to California to visit him. But just three weeks after the initial cancer diagnosis, we got a call that he had died in his sleep.
How do you sit shiva for someone you didn't really know?
My brother-in-law was nine years younger than my husband, and they didn't have much contact since my husband left home at age 18 and moved far away.
But there were other factors.
My brother-in-law lived in a board-and-care home for more than 30 years, the result of a devastating mental illness that left him a shell of the person he used to be.
My husband called him on the phone, but the connection was usually poor and he was not really interested in talking. My brother-in-law didn't really enjoy visits, either. He was always in his own strange delusional world before cancer struck, and it had been no different during those final three weeks.
He was just shy of reaching the Grand Master designation when mental illness reared its ugly head.
His schizophrenia was especially devastating because of the person he used to be. At age 5, his father taught him to play chess, and that became his passion. He wasn't just good – he was a chess genius, a young Bobby Fischer-in-training. He played in tournaments everywhere, and by age 14 was the US Western Division chess champion. He became a chess Master and by age 18 his only losses were to Grand Masters.
He was just shy of reaching the Grand Master designation (based on points accumulated through tournament games via the US Chess Federation) when mental illness reared its ugly head. Tragically, at age 20, he stopped playing chess forever. On meds, he was all spaced out and couldn't play; without meds, he heard voices that confused and distressed him, and got him into all sorts of trouble.
My brother-in-law could no longer care for himself. Things were constantly happening to his possessions – clothes, bed linens, personal hygiene items - either they were stolen, lost, or he gave them away. Once, my mother-in-law was horrified to find him laying in a bedsheet so dirty it was black; in the winter he was shivering with cold because he didn't have a coat. He only had one pair of underwear. She hurried to replace everything anew, with several duplicates to spare, at great expense with money she didn't have.
But within a day or two they'd be gone, and once again he couldn't really say what had happened to them. He just couldn't keep track of his possessions. Nor did he seem upset or distressed by their lack. He always just said, "It's okay."
He also couldn't drive. When he did drive in the initial phases of the mental illness, he got ticket after ticket, but paying them wasn't something he could do. Not because he didn't want to, but because they just weren't part of his reality. One day when he got yet another ticket, the police saw that he had a warrant out for his arrest due to all the unpaid tickets, and he ended up in L.A. County jail. It was only when a missing persons report was filed that we even knew he was in jail. He couldn't remember a phone number of someone to contact to let them know what had happened, so he sat in jail – this poor, sick young man amidst murderers, rapists and violent gang members – until we found out and got him out.
Judging the Family
It saddens me deeply to tell of my brother-in-law’s diminished, very ill self. Mental illness is a tragic condition that none of us truly understand and few of us tolerate – but it's not shameful. Despite many trials with different chemical cocktails, none were able to really help him.
It's easy to judge those who seem uncaring toward a family member who suffers from mental illness. How could we let him be in a board-and-care home instead of bringing him to live with us? Well, we tried (we lasted two weeks) and my husband's other brother and sister-in-law tried (to their credit, they lasted a few months).
His mother tried and with her very last bit of savings even bought him a small mobile home in a trailer park not far from her residence. She thought if he had something nice he would take pride in it and take better care of it and himself. But he ended up burning it down. Was it during an attempt to use a toaster? Or perhaps caused by careless placement of a cigarette, one of a 4-pack-a-day smoking habit? (Interestingly, studies have shown that cigarette smoking provides some relief of symptoms for schizophrenics, which perhaps explains their subconscious, widespread prevalence of cigarette smoking.)
Unless you have walked in those shoes, you cannot imagine the difficulties, the pain, the heartache.
Typically, one is afraid of what others will think if it's known that someone in the family is mentally ill, and this segues into the scary possibility that no outsider will want to marry into a family beset by mental illness. The family is also concerned that they will be judged for their care-taking decisions. But each mentally ill person's situation is unique, as is their family dynamics. Unless you have walked in those shoes, you cannot imagine the difficulties, the pain, the heartache. Perhaps you could do better – and I honestly hope you never have to find out.
No, I don't think we were heartless by admitting him to a board-and-care home – just heartbroken. My brother-in-law – who could play 20 opponents in simultaneous chess games; who could play chess blindfolded; and whose chess games were frequently reported and studied in the L.A. Times, in books, and Chess Federation newsletters, was in a world of his own, one that we could not share.
The day after he died, his niece googled his name, and was connected to a chess forum. She noticed a query posted the day before he died, more than 35 years since his last public game, asking whatever happened to my brother-in-law. “You used to hear about his games all the time, and I never hear about him anymore."
My niece responded that he had died only one day after the query. Word spread quickly via the Internet, and the accolades began pouring in. It was such a comfort to us that his legacy lived on. Imagine: even without playing a single game in 35 years, he was still ranked #414 in the entire US!
Despite his tragic life, my brother-in-law was not a bitter person. He was a gentle man. He never had a sour word for anyone. He was truly a nice person. If someone did something to him that wasn’t nice or even downright cruel, he just let it go and said, “It’s okay.” And he meant it. My brother-in-law was a good person, and in his own way, in better times, he made a difference; in worser times he wasn't a complainer or angry at his fate of years of illness. He was happy with nothing – literally nothing. That is a character trait we can all learn from David ben Yisrael, may he rest in peace.
(19) Anonymous, July 18, 2018 10:04 AM
Beautiful
What a beautiful well-written tribute to your brother-in-law. How true it is that not a single person should ever judge family members who live with this heartbreak.
(18) Anonymous, July 17, 2018 4:01 PM
This article brought tears to my eyes. Thank you for sharing about your brother-in-law. I have a sister that has suffered from mental illness since the age of 16. She is now living on her own and managing well. I remember not wanting to tell anyone about her and the shame involved and all the anguish on decisions made in her life from my parents. Really we don't know and cannot judge until we walk in that person's shoes. My sister is the most loving person i have ever met. They do have something in common they are so innocent of wrong-doings in this life and I believe hashem has a very special place for them in the next life and it will be much better than the lives that we have lived.
(17) Gahl, June 11, 2017 7:44 PM
Very beautifully written, thank you
(16) Sharon, June 11, 2017 3:51 PM
Tragic case but must not discourage others
Clearly the family of this man tried to help him to the best of their ability and the fact that they were not more successful is terribly sad. There is absolutely no room for judgement other than to see that they tried their best.
But surely each case is indivdual and the same diagnosis doesn't necessarily mean the same outcome. Any psychiatric illness will come as unwelcome news, but the spectrum of possibilities still must exist. I say this because my son who studies social work treated a man who suffered from schizophrenia and that patient does seem to have more of a meaningful life than the one described here - including a wife and child. Obviously no one will choose this diagnosis, but we don't get to choose. And if it happens to a loved one, you must not give up until everything is tried.
My heart goes out to the mother. I have some idea of what she suffered. It's hard to understand why some people are so tested. Hopefully the man himself did not suffer too much.
(15) Jacob, July 3, 2013 1:30 PM
Hope
As someone who has struggled with severe depression for over a decade, I can relate very much to your family's worries.
All this is very difficult to understand. Why are some people's lives affected by such horrible diseases? What should relatives do?
I pray for you, your family and your brother-in-law.
(14) Anonymous, July 2, 2013 10:34 PM
Mental Illness and Cancer
I came across an old magazine article on Bipolar disorder and a mother who was dealing with one child with that issue and anothe child with cancer. She couldn't help but notice how people reacted to the one with bipolar disorder with negativity and condemnation for his sometimes bizarre actions. On the other hand, they couldn't do enough for the child who had cancer and offered sympathy and support. Very sad mental illness is often trivialized or demonized.
(13) Anonymous, July 2, 2013 4:02 PM
Thank you for sharing this
I never cry--it made me cry. So often in the observant community mental illness is a taboo subject out of fear that it will affect the shidduchs of the children. A psychiatrist friend of mine says that the patients he sees all day could be our friends--they are interchangeable. Thank you for writing a clear, balanced and compassionate article.
(12) susannah garbutt, July 1, 2013 2:19 PM
anti psychotic drugs
Dear Raphaelle
To the best of my knowledge, antipsychotics are not addictive. Indiscriminate use is not advised - it would cause some harm I imagine, but also to the best of my knowledge, patients do not develop a tolerance to them, but in psychiatry, sometimes the dose of an antipsychotic has to be increased a little according to symptoms at the time, a fact which many people may not be aware of. Finding the medication regime that suits an individual at one time is a slow ongoing procedure, as symptoms can change over time, in my experience. Accurate diagnosis can be a problem also, I have been given several different diagnoses from different health professionals. At the moment, I seem to have bipolar, with mainly depression a problem. It has been different in the past. I wish I understood mental illness much better, but fuzzy thinking hinders my brain. Usually, the mental health professionals are compassionate and patient people. If you are not happy with any of them, change therapists if at all possible - you need to feel comfortable and trusting with them. The mind is a delicate thing. Lastly, I wish the media would stop using the term 'schizophrenia' as if it were 'split personality' - there is no such thing as a split personality, (there is multiple personality disorder), and schizophrenia is more of a fragmentation I believe, but I have never quite understood how or why. I hope this helps. Shalom
(11) susannah garbutt, July 1, 2013 12:27 PM
personal experience with mental illness
Dear Galia
Thank you for writing such a touching story - as a sufferer of mental illness with two of my three brothers also afflicted and my last seemingly untouched brother suffering from major depression and choosing slow suicide (alcoholism) after a marital breakup I know that it is a true tragedy. Three of us never achieved our potential in life, and it's a daily struggle that those who don't have a mental illness would not understand, it truly is a tragedy. Word needs to get out, and some day there will be effective treatment and management without the stigma.Thank you for your compassion and understanding, and for writing this article. Susannah Garbutt
(10) David Altschuler, July 1, 2013 2:06 AM
Bill & Joe; may you be comforted...
Sharon and I wish you and your respective wives well. It's been a long time; all the best.
(9) mordi, July 1, 2013 12:49 AM
until
Until you have come face to face with a mentally ill person, and their complete circumstance, you cannot understand. Hearing it from a doctor or a nurse is quickly forgotten.
Hear- you forget
See - you remember
Do ( contact ) - you learn
Here and See is where it seems to stop. Learning is minimal. Stigma is maximal.
(8) Anonymous, June 30, 2013 11:06 PM
So very shameful!!
My husbands family is going through a mental illness phase from one of his siblings. They are putting a lock & key on this sibling......shame & embarrassed are putting it mildly!!
So instead of giving this sibling their love, care & concern....they give this sibling the cold ( freezing) shoulder & forbid their extended family from speaking with this sibling. It breaks my heart.
(7) Tova Hinda Siegel, June 30, 2013 7:26 PM
Thank you
Dear Galia,
Thank you so much for sharing this very touching story. Our best regards to you and your family.
(6) Bracha Goetz, June 30, 2013 7:00 PM
Thank you for this important piece!
(5) Robin, June 30, 2013 5:51 PM
Thank you for sharing
We have struggled and suffered as a family with mental illness in one of my parents, a brother and two of my children. When my boys became teens I just could no longer raise them as a single mom. As a mom and nurse I've thought I should be the one... I have all knowledge resources and connections right? I devoted my life to raising them only to send them off to live with dad who does not ensure they take meds. As adults they aren't incompetent enough to have a custodial guardian yet. I see what is coming ahead and just pray to G-d will heal them, make them want to take meds or make me rich so I can hire a huge staff to take care of them so I can be their mama again . I have thought it was adolescence that I was not good at , I realized it was worsening mental illness during adolescence I'm not good at, because they are still the sweet unselfish little boys with smart intellect and great wit...hiding under the guise of Autism.
(4) Anonymous, June 30, 2013 5:20 PM
The Shame of Mental Illness
Galia, you are courageous to share your brother's life story. In the frum community there is abounding ignorance about mental illness. Most stories published are either about major success stories concerning people who function very well usually w/ depression, or those with illnesses such as bipolar disorder, or schizophrenia who commit violent crimes etc. I am glad to see you publicize that your brother who had schizophrenia was a good natured person who was even happy with nothing. We can all learn volumes from him. We have experienced the painful reality of rejection by a family regarding a shidduch due to my child's revelation concerning mental illness in our family. That was devastating to him/her. We did our due diligence and consulted a psychiatrist who specializes in genetic research concerning the correlation of mental illness to genetics, who essentially said, in our case the chances of a child inheriting mental illness due to our child's sibling and parent having mental illness is statistically insignificantly more than the child inheriting mental illness in the general population. Still the prospective shidduch's parents rejected our child. We thank G-d, as ironic as that sounds. What they did not factor in, is that life happens. Anything can happen and someone can develop a mental illness/other very "inconvenient" physical or mental medical conditions. NO ONE is immuned to these possibilities. If the in-laws cannot accept our reality, how would they deal w/ "a situation" if it occurred. Blame us or our child? "Go crazy" themselves? If this proposed shidduch could not stand-up to his/her parents that also did not bode well for the shidduch. The frum world has a lot to learn about acceptance. If we analyze each other regarding genetic defects w/r to shidduchim--cancer, heart conditions, diabetes, mental illness, there is no end to it. Ain sof la-davar!! No one is perfect. With reasonable fact checking we must accept each other. And must also trust G-d.
(3) Anonymous, June 30, 2013 4:06 PM
thank you
Thank you so much for that article. I understand exactly how you feel. My mother has dementia & I feel that other people criticise &/or judge me because
a) She is now in an assisted living home & not living with me anymore, which she did for 13 years.
b) I only go & visit her once a week, as each visit takes all of my energy. It is so difficult listening to her talk when it does not make any sense or when she acts like a 2 year old
(2) ruth housman, June 30, 2013 3:30 PM
as the bough breaks
I was talking about schizophrenia just yesterday, and have not had such a conversation in a long time.. speaking about my psychotherapy patients and something that amazed me, in all their word salad. A young man who seemed to totally brighten up when he brought in a dictionary game. It feels like there is something going on with the processing of language, in a kind of bicameral breakdown. And it also seems like there is a stress vulnerability here, that something internal that is felt stress triggers a cascade of inability to cope and there is yes, these terrible thoughts that keep coming, what in milder forms perhaps, we call, the yetzer. I have always been afraid of chess for my own personal reasons, and perhaps because I felt the game was fixed. A difficult place to go. Given my thoughts on schizophrenia, I have often felt, it's about merger, and that it's a cruel kind of merger, because it's so hard to treat and so difficult to re establish those boundaries. This man sounds truly like a very good person, and it's a tragedy, he had to suffer in this way.
Raphaelle Do Lern Hwei, July 1, 2013 6:07 AM
A Special Life
Thanks for the comments, Ruth Housman. I have an interest in age onset psychoses ever since I started my nursing career in a speciality ward of that condition. It is quite possible that David Ben Yisrael was a very competent chess player till the day he died. The elderly clients in the psychiatric ward can play a mean hand of mahjong, a game I can never pick up even after 4 months of watching them. Hope that families and friends of institutionalised psychiatric patients can visit and go out with them regularly. Perhaps set up a schedule so 2 to 3 persons go at a time in a way that the patient is never forgotten and still is in touch with the general community. This will be good for their gradual recovery. I also agree with Yehudith Shraga. Indiscriminate usage of meds can harm as anti psychotics are addictive and the client will develop tolerance to meds and the dosage will have to increase to maintain the same effect.
(1) Yehudith Shraga, June 30, 2013 9:02 AM
Thank you so much for sharing!
Your bravery to share the story of your brother-in-law is the example of the outstanding courage to speak about the things which usually people try to hide.
The personality of the mentally ill person is very complicated and it is very difficult and very often wrong to try to take care of such a person at home, because it may be dangerous for the person himself and the people around and so there shouldn't be any feelings of guilt or shame thought and experienced by those families who decided to leave their sick relatives in the institutions. In most of the cases it is right to have a special placement for them and to continue the relationships through visiting the sick people and taking them home for the holidays, if their mental conditions allows it. As for the society attitude to mental sick members, their tolerance and care show the real humanistic standard this or that society has and the real spiritual, ethic and cultural growth the society has reached up to now.
God bless the soul of David ben Yisrael, because the handicapped people be it physical or mental disability are the owners of the very special souls and having the Honor of knowing their Way of seeing and judging this Life and World may enrich any of us in the highest degree we could ever only imagine.
Thank you, again for your absolutely true written story, and the efforts all the family and especially his mother have made to be with David at the times when he lived with them and at the times when he was hospitalized.
It is a good example of the family which is dedicated to their member, no matter what problem he is in, because the Life is not about of being Ideal, the Life is about our OPTIMAL behavior in all the situations we may be confronted with during our earthly way.