Thank you for sharing your story and I am so sorry that you have to witness your son suffering. I have two brothers with schizophrenia or schizophrenia-affective disorder. I don’t know their exact diagnosis because they both refuse treatment and medication, which is an incredibly frustrating, but not uncommon part of the illness itself. My parents have been unbelievably kind and loving over the many years of their illness, which is the only reason my brothers are not homeless. As the mother of two young boys, my greatest fear is that one or both of them will develop this devastating condition. I wish you did not have to endure this hardship and I hope your son will find relief and peace with the right treatment.
4
Hang in there. Mine was good for 8 years then suddenly a psychotic break. I managed to get him back to normal with a med addition in only 4 days. It's not like people think... vitamins, diet, meditation don't work only antipsychotics work.
5
I was just reading an interesting article on the nih website about a boy who had mild attention deficit issues from 2nd grade onward with onset of mood disorder and then psychotic features at age 16. Luckily doctors ran tests til they found the cause, he had a vitamin B12 deficiency, caused not by a deficiency in his diet but malabsorption (due to an H Pylori infection.) After the H Pylori was eradicated, all his symptoms disappeared. Asylums in my state used to be full of people suffering from Pellagra (caused by another B vitamin deficiency) until people became aware it was a dietary issue. Various meds and illnesses can cause absorption issues of nutrients.
3
Yes, my dear friend, a counselor for over twenty years, has told me that having special blood tests looking for nutritional deficiencies, can often help people labeled as schizophrenic...One friend whose son was homeless and living on the streets , was found to have a D3 deficiency causing hallucinations and voices...is now doing great has a girlfriend and living on his own. So who knows what help your family may find. .but you need to locate someone knowledgeable in the Ortho Molecular Nutritional field. Common bloodtests will not find anything. Also, another friend, who has a daughter with this same diagnosis, found that after receiving electric shock treatment...12 treatments, her daughter was finally much better..this after a grueling ten years of seeing her suffer from this terrible disorder. She is now living in a supervised home with three other adults. Sending prayers and love to you and your family. Also, a great resource is NAMI...National Alliance for Mental Illness. They offer a 12 week course and I recommend it highly.
1
My heart is breaking reading this story. My beautiful oldest son was diagnosed 15+ years ago and it has been a hellacious journey. He is so much better all these years later, but dear loving God, it has been so very hard. Wishing you and your son every good thing, every wonderful therapist, doctor, program available.
8
This writing could have come from me. I'm sorry you're experiencing what I have. Please, keep an eye on him. I did all I could; put my son in what I thought was a good program to monitor his meds, make him go to groups, psychiatrists (a joke of a man,) and it failed. My son left his home to go to the gym and instead leaped off of a bridge into the river. I miss him terribly. I know he is no longer suffering. Now I am.
9
I am so sorry for your loss.
4
Sorry for your lost.
2
So sorry to read this heart breaking story and very best wishes to the author and her son. Of course mental illness may be inherited but so many other factors can be involved from infectious illnesses (which patients may not even be tested for), to the effects of medications and recreational drugs (sadly sometimes kids and families don’t know the risks and these causes might not be spotted) to environmental causes (mold has been linked to paranoia)...prayers for this young man’s speedy recovery and all people in the same situation.
1
Thank you so much for sharing...I do not know what to say,life is scary right now, stay strong and be hopeful!
1
As a parent with a child who has recently developed psychosis, thank you for this article. We are new enough to this experience that we do not have a firm diagnosis or treatment plan. Much of what is in this article matches my own feelings. Knowing that other parents are processing in similar ways...it is a comfort. It tells me we are not alone in this journey.
4
I know this is a testament about skitzo affective developing in early 20s but this article seems hopeless. When you put out writing about mental illness without providing several testimonials with different conclusions or without providing resources I don't know what it's giving besides perpetuating a negative stereotype, esp if it's an article like this. lets not reinforce stereotypes but instead have some instances of hope.
3
This is one of the most difficult disorders to effectively treat. Sometimes mental illness is simply heartbreaking. Even a lesser mental disorder diagnosis is difficult to treat. My own bi-polar and anxiety disorders took years and endless meds and bi-weekly therapy to simply function and feel moments of joy. Not every story has a light at the end. Shining a light on the illness brings people together and starts discussions and potential therapy.
6
Sorry but you got it wrong. This is not an article about any specific illness/condition. It's a statement about how we as mothers fell when our babies (no matter their age) fall apart with chronical mental illness and how our world falls apart along with them. I sincerely hope that your comment is fruit of not being in that situation because no son, mother or family deserves what we go trough.
2
I don't understand why I have to pay for this ... or forced to pay for it via the State. The assumption is if the State took care of her and her son he would be better off. What a foolish assumption.
1
right, kick them all to the curb. barbarian
4
I don't understand how you assume you are not paying for other people when you purchase for profit private health insurance?
I also don't understand how you can respond to such a heartbreaking article with such mean spirited partisanship. Have you no empathy?
I also don't understand how you can respond to such a heartbreaking article with such mean spirited partisanship. Have you no empathy?
15
The reason you have to pay for this is because other people pay for stuff they don't like or need you might like or need. Unless you think everybody should just foot their own bill then we can toss out museum and the like and other state/government funded programs.
That said I chose not to have kids so I am a bit annoyed at how much I have to endure other people choice to have kids. My choice to NOT have kids affects nobody's quality of life yet many of these people and their kids certainly affect my quality of life.
That said I chose not to have kids so I am a bit annoyed at how much I have to endure other people choice to have kids. My choice to NOT have kids affects nobody's quality of life yet many of these people and their kids certainly affect my quality of life.
1
I work as a college counselor. One of my students received this diagnosis. She started taking medication and was able to graduate college, find employment and has a healthy family life. The key is advocating for him to get the proper treatment.
7
This piece speaks to me, because my family is adrift with mental illness, and one of my sisters is disabled from schizo-affective disorder. It can be very hard to love someone who is so sick, who is paranoid, who screams. This man is lucky his mother loves him as he is.
8
Thank you so much for sharing this. As a therapist I've read a great deal. And yet when writing is clinical, it misses the gasp and the dread and the quiver between despair and hope. You speak of your connection with a refreshing lack of too much caring about what the books say about symbiosis being something to stay away from in later years. Rather, it feels to me that the connection between the two of you is life-saving. My hope goes with you.
12
I wouldn't underestimate the number of times people have been gaslighted, placed on medication and as a result suffered from various disorders.
1
Frankly I'm surprised by those who don't suffer from a mood disorder or two.
Please see No Letting Go on Amazon. This film is based on a true story of a family trying to get help for their son who is eventually diagnosed with bipolar disorder. Families who have children with any mental illness (not just bipolar) will see aspects of their lives played on screen. You are not alone.
2
" He will get better, and we won't have to mention this chapter in history to anyone. Ever."
Except the hundreds of thousands of New York Times readers. Thanks Mom.
Except the hundreds of thousands of New York Times readers. Thanks Mom.
4
A curious detail. The child's fears strike me as very contemporary, misplaced as they may be. Is he arriving at them on his own? Or regurgitating what he has learned from others?
Common paranoid delusions involve the government or religion. God speaks to the sufferer, or s/he believes the government is spying on him or her. No one has to teach this; the brain creates it all on its own
1
Do you have no reading comprehension? That was her attitude at the beginning. She is clearly at a different stage now.
We need more, many more voices such as Tanya's to help build an
army of scientists to attack these misfiring of neurons that imprison our children's brains. Only then will we begin to solve this life crippling disease.
The World Bank budgets triple or more dollars for AIDS in Africa than for mental
illness. Why? Because the Aids lobby made their voices heard in the 1980's.
Good for them. Can we not learn that only by public outcry can new and effective treatments be found for mental illness?
army of scientists to attack these misfiring of neurons that imprison our children's brains. Only then will we begin to solve this life crippling disease.
The World Bank budgets triple or more dollars for AIDS in Africa than for mental
illness. Why? Because the Aids lobby made their voices heard in the 1980's.
Good for them. Can we not learn that only by public outcry can new and effective treatments be found for mental illness?
6
Though it likely won't come as a consolation, even those of us who believe we're in control often aren't.
1
my question is this: did she get her son's permission before she published this article?
the mentally ill, as far as I am aware, have the
same rights to privacy as anyone else.
while the writing is deeply moving, I can't help but think that these family matters ought to be
kept in the family. I hope that there is no book
coming our way, though I suspect that there
probably is.
the mentally ill, as far as I am aware, have the
same rights to privacy as anyone else.
while the writing is deeply moving, I can't help but think that these family matters ought to be
kept in the family. I hope that there is no book
coming our way, though I suspect that there
probably is.
6
This shaming and hiding of family mental illness alienates families and doesn’t contribute to finding treatments.
5
Why keep secret something that is NOT OUR FAULT?
My daughter had anorexia- also a brain-based illness with zero choice component.
We talk and write and speak for many reasons - including to educate the public so we can get fair funding.
4
There are group of people who share the experience of hearing voices in their head not their own who learned to live with them and be productive with a life.
Hearing a voice is freightening, that can change. I would not want to have one, ringing in the ears is enough. But I know now, i would want the help of someone who will teach the development of a constructive relatrionship with this other self, without the medication that can create great difficulty, it is possbile.
Hearing a voice is freightening, that can change. I would not want to have one, ringing in the ears is enough. But I know now, i would want the help of someone who will teach the development of a constructive relatrionship with this other self, without the medication that can create great difficulty, it is possbile.
1
This hit home. My boy has what was one called Aspergers. My grandmother and uncle both had psychotic breaks via schizoaffective disorder and dealt with institutionalization, etc. Now a tween, my boy is doing so well, but I fear for his circuitry. I see his baby face in every homeless man I meet. I will never have enough to give. I will never live long enough if he is affected. We have a wooly poodle too. He is at my feet as I type.
3
Thank you for this article. There is so much stigma attached to mental illness. It's as though people feel the person is some how "flawed" due to their own "weakness" or "moral failings." In fact people with mental illness are our sons and daughters. They are loved and held as precious by their families who must watch as the child they knew changes in fits and starts into some one lost and unwell. Your personal story reveals the simple humanity behind the diagnosis of mental illness. Now if we can just get patients and families the help and care they need...sigh...
18
Here are some interesting resources regarding learning how to work with inner voices, delusional thoughts, and visionary experiences.
- Article - "Living With Voices" - theamericanscholar.org - by T.M Luhrman - Excerpt -
"The problem is not the voices but the relationship to the voices ..."
"The people who were comfortable with hearing voices told the same story: their experiences had a trajectory. Some voices had started out mean and difficult, and the hearers had first responded with startled fear, but once they had chosen to interact with them, the voices settled down and became more manageable, sometimes even useful."
- Website - Intervoice/A Practical Guide to Coping With Voices" - intervoiceonline.org
- Article - "Finish Open Dialogue: High Recovery Rates Leave Many Psychiatric Beds Empty" - beyondmeds.com
- YouTube - "The Voices In My Head - Eleanor Longden" - TED Talks
- Article - "A Conversation With Dr. John Weir Perry - global-vision.org - Discussion of Jungian approach to treatment of young people experiencing their first acute episode of schizophrenia.
In a residential treatment facility, empathetic staff members encouraged clients to freely express their visionary experiences.
Includes illustrations of the Inner Apocalypse and other metaphorical, archetypal imagery related to the the Hero's Inner Journey from psychological chaos and confusion to transformation and healing.
- Article - "Living With Voices" - theamericanscholar.org - by T.M Luhrman - Excerpt -
"The problem is not the voices but the relationship to the voices ..."
"The people who were comfortable with hearing voices told the same story: their experiences had a trajectory. Some voices had started out mean and difficult, and the hearers had first responded with startled fear, but once they had chosen to interact with them, the voices settled down and became more manageable, sometimes even useful."
- Website - Intervoice/A Practical Guide to Coping With Voices" - intervoiceonline.org
- Article - "Finish Open Dialogue: High Recovery Rates Leave Many Psychiatric Beds Empty" - beyondmeds.com
- YouTube - "The Voices In My Head - Eleanor Longden" - TED Talks
- Article - "A Conversation With Dr. John Weir Perry - global-vision.org - Discussion of Jungian approach to treatment of young people experiencing their first acute episode of schizophrenia.
In a residential treatment facility, empathetic staff members encouraged clients to freely express their visionary experiences.
Includes illustrations of the Inner Apocalypse and other metaphorical, archetypal imagery related to the the Hero's Inner Journey from psychological chaos and confusion to transformation and healing.
8
Thank you for this beautiful and honest article. It brought back many memories of my brother's breakdown over 30 years ago. He was also an incredibly bright, talented, athletic and charming 19 year old who seemed to have unlimited potential. Sadly enough, although after a couple of years he became cooperative in his own treatment, he has never really recovered and is on social security disability. The real tragedy is how many families deal with serious mental illness, and how extremely limited our services are. Closing long-term mental hospitals back in the 70's and 80's was the right thing to do, but nothing was put in its place. We need programs to help support the mentally ill and their families so that they're safe, are not on the streets or a burden on their families, and can recover and be as productive as possible. Good luck to you and your son!
22
My son also had a psychotic break and eventually a diagnosis of schizoaffective disorder. We struggled for 12 years of ups, downs, more psychotic and paranoid episodes. I understand the difficulty you are both facing.
But there is hope and you sound like the kind of supportive loving mother who would do anything to help your son.
Your son NEEDS you + psychiatric care and medications, which have improved in efficacy SO much.
After so many years of struggle, my son recently graduated magna cum laude from a good university, is a counselor at a mental health clinic and is so proud to be off Social Security Disability.
Maybe this "miracle" outcome will not be possible for everyone, but with your love & support, good psychiatric care and medication, improvement in quality of life IS possible. But he NEEDS psychiatric care and medication, too.
I wish you both well.
But there is hope and you sound like the kind of supportive loving mother who would do anything to help your son.
Your son NEEDS you + psychiatric care and medications, which have improved in efficacy SO much.
After so many years of struggle, my son recently graduated magna cum laude from a good university, is a counselor at a mental health clinic and is so proud to be off Social Security Disability.
Maybe this "miracle" outcome will not be possible for everyone, but with your love & support, good psychiatric care and medication, improvement in quality of life IS possible. But he NEEDS psychiatric care and medication, too.
I wish you both well.
29
Thank you for this article. I usually don't shed tears about stories like this anymore and I did. The story is fresh even after 10 years of looking after my younger, now adult brother, who has schizoaffective disorder. Yes, I'm my brothers keeper and changed my career to be a highly experienced clinician helping clients and their families navigate their thoughts, feelings, emotions and delusions related to the disease. Our mental health system is ill equipped to care for the severely mentally ill, it wasnt always like that(Dorthea Dix). Please be patient and kind to yourself. It's not your fault and I'm sure you wish you could trade places with your son, as you wish your love could keep him safe. Research shows quality of life improvement when a loved one has family support. Since you are from the UK, if at all possible please research the mental health services specifically for schizophrenia there(superior to US), CBT for psychosis(UK). NAMI(US), McFarland Group (that does family therapy for schizophrenia)and lastly the Broad Institute at MIT (very long term schizophrenia research ). I care about you and your sons suffering, with this caring may your suffering ease. God bless you and your son.
36
Our family has been through this too. It is incredibly hard at first. I couldn't imagine it being the new norm of my life to have a child with this diagnosis. I suggest taking the NAMI Family to Family class. If your child is an adult, I suggest working with a counselor to figure out ways you can be supportive but still have your own life as time goes on.
8
Having walked in your shoes I can tell you there is light at the end of the tunnel although it is a long journey…one that never ends. Thank you for your essay.
8
Thank you, Tanya, for this wonderful essay. Many mental illness don't come into play until our children reach the teenage years. I hope that your son gets competent help and you also find support during the grieving process of seeing what you thought was your son's future have to shift. (I know this may sound trite - but God bless.)
6
From my professional (Mental Health Practitioner) and personal (21 yr old nephew took his own life in 2014) experience, the cases of young people suffering mental illness is growing. In our case, my nephew was a talented, loved and vivacious young man until he had a traumatic experience that sent his depressive feelings into a completely psychotic break that had him being transferred from one hospital to another. He literally was lost through the cracks of the system. My sibling and their spouse had NO idea how to handle the situation and refused to take any family advice, only what the Doctors told them and in our case, the Doctors and Hospitals treated our loved one like a case that needed to be passed along since my sibling didn't think it was necessary to spend more money than what the insurance would pay for. It was quite the mess! Now, I work in a mental health treatment Hospital and though it's too late, I understand what happened. 1st and foremost, it has everything to do with the treatment facility! really good psychiatric doctors are hard to find! They need to be people who insist the patient gets treatment, not worry about how much money the facility is getting for starters! There was a psychiatrist who said he "thinks" my nephew could be diagnosed with schizoaffective/schizapahrenia but, "not sure." And then my nephew was sent home. No follow up, no help to find another facility, just released because insurance stopped paying! We need CHANGE NOW!
23
It's a shame that aftercare referrals aren't mandatory in some states. In NY, an individual discharged from a state Psychiatric center/local hospital must be referred to an outpatient mental health clinic, along with follow medical care, as psychiatric medications can have a negative effect on other organs within the body. There's also mandatory tracking that must occur by the discharging hospital to ensure that the client is making their appointments; if not diligent effort must be demonstrated to get that person to their appointment.
It's well know that family, specifically parents endure the behaviors of their mentally ill family the longest before they burnout. Unfortunately, whilst it's known, parents/family are occasionally looked at sideways when they state that they can't accommodate their ill child any longer based on their long history together. However, I say parents should stand their ground, as they know what they've had to deal with over the months or years prior to the child receiving appropriate service.
Also, Nami is a great resourcefor families and some hospitals in NY have family info sessions.
It's well know that family, specifically parents endure the behaviors of their mentally ill family the longest before they burnout. Unfortunately, whilst it's known, parents/family are occasionally looked at sideways when they state that they can't accommodate their ill child any longer based on their long history together. However, I say parents should stand their ground, as they know what they've had to deal with over the months or years prior to the child receiving appropriate service.
Also, Nami is a great resourcefor families and some hospitals in NY have family info sessions.
3
This article is written as if his diagnosis is a death sentence. Believe me, this attitude does not help your son in any way! Please stop feeling sorry for him, stop feeling sorry for yourself, and stop treating him like a child. When I went through a major depressive episode and had to move back in with my mom she had a very similar attitude - that I was a helpless little bit (even though I was 25 years old) and it made everything so much better. In my (unqualified) opinion, menta ilnesses aren't actually diseases. They're symptoms of a diseased culture. If you look at aboriginal and tribal cultures mentally illness is virtually non-existent. Modern society is just so screwed up that it makes half of us lose our minds. Whatever your views on mental illness, people diagnosed with serious mental ilnesses can still lead productive adult lives with the help of counseling or medication. Just be sure to get a second opinion on meds - they often do more harm than good!
9
Your opinion would be wrong - mental illnesses ARE real illnesses and need competent medical care. Yes, people with mental illnesses can still lead productive adult lives, but they need, just like people with diabetes, to be managed throughout their lives. This is a very, very difficult situation for a family to be in.
41
I have to agree with Modemmon -- there most definitely are mental illnesses which are real illnesses, and require professional care and medication ... and the loving support of family and friends.
6
What a peculiar response. This was the first night of a very long journey. Your response is as judgemental as you are telling her not to be. Her son asked for comfort; she gave it to him.
10
You lost me after gratuitously complaining there is no national health system followed by your ability to go to a psychiatric hospital.
Politics is the worst treatment for psychosis.
Politics is the worst treatment for psychosis.
2
A few days in a psychiatric hospital does not cover what a mentally ill person needs. Good care cost thousands and thousands. Much of which insurance does not pay for.
19
The author could, but the majority of Americans would not easily afford psychiatric help.
10
Are you aware of emergency hospitalization? He was involuntarily held for 72 hours (a 5150) because he was considered a danger to himself. The hospital can't turn him away. But she will have to pay the bills. No insurance company will. You're the one inserting politics into this.
11
I lost my husband to the illness and wrote about it in an essay, When He Died, that has very much the same tone. https://esme.com/voices/perspectives/when-he-died
6
Thank you taking care of your son. I lost someone very dear at the hands of a son whose parents could have, and did not. I wish you strength on your journey and hope you find all the help, care and support that you need. I hope other parents find strength to help their children, as you are doing, from hearing your story. The stigmatization of mental illness and the reluctance to take it as seriously as any other biological disease and the scarcity of treatment options has destroyed too much
16
Tanya, I am deeply thankful that you wrote this beautifully moving description of your son's psychotic break. My son had a psychotic break two years when he was 17 likely caused by a bipolar manic episode. His delusions were not dissimilar from your son's. He is stabilized with an antipsychotic medication and the life-saving guidance of a gifted psychiatrist. He is high functioning and living productive life. But there are ups and downs. One thing that got me through this seismic shift in our reality was reading other parents' accounts of their experiences with their children. Please write more. Your overwhelming love for your son shines through your writing. I know that feeling. You are all in on his survival. I hope he is doing well.
32
Thank you for sharing your and your son's story. So many of us struggle with similar difficulties alone because of the stigma still attached to "mental" illness. I have felt the feelings you describe - love, worry, fear, and sometimes helplessness. I cannot and will not stop caring for and trying to help friends and family members who suffer with these only imperfectly understood conditions.
11
Thank you for this piece. You write beatifully and meaningfully. Take good care of yourself- literally, while caring for your son. One day at a time.
15
I'm like your son. I'm grateful that he has someone like you to trust; Without my best friend, I would be lost most of the time. Thank you for caring about him, and for trying to understand. I've been like this since I was very young, and while I've missed out on some opportunities and some people have left my life from the effects, I am now living on my own, have two jobs that I am well regarded at, and have friends. I don't know if your son will ever be "recover", but I believe he will be able to be happy. I wish you and your family all the best.
61
Thank you for this response! I hope you continue to live a fulfilling life, and appreciate the hope you give others with this note.
4
Growing up with this from an early age - single mother , paranoid schizophrenic, two siblings and growing up with into adulthood - fully understanding its impact of my world- on hers, I came to the conclusion: some people are born to look after others, it's meant to be. I was born to look after my mother. If my children have the same illness, I will look after them. It's painful; traumatic and altogether soul destroying- but nothing compared to managing someone with this illness as a child. Now I'm ready for it should it befall my dearest girl or boy.
20
Having been married to a man with this illness, my heart broke when I read your letter. I cannot imagine what you went through. I've seen my boys struggle with an ill father, but they were always protected by me. I just wanted to reach back in time and protect you too. You may be right that some of us were born to care for others. But your little soul was born to be protected, too.
24
My heart goes out to you, your son, and your partner. You are coping so well.
My mother had paranoid schizophrenia, diagnosed in 1960, and had shock treatment. She had been a lab technician, and returned to that job. She had seen strange men in the house who were trying to do things to her: There were no strange men.
When my sisters and I were growing up, mostly she was fine, then she was not. She left for Mexico, and was babbling things that were not true. I talked her back to where she lived in the West and she was hospitalized, nearly 20 years after her first hospitalization. This was when she was put on an anti-psychotic, Prolixin.
She became a Licensed Practical Nurse. This worked well for her, until it didn't. She retired early. At times she acted on her delusions. This caused her to lose custody of me and my two sisters. She painted in acrylics and oils. She had a beautiful soul, to echo John Nash's story.
One issue I'm trying to research is a possible connection between tertiary syphilis and schizophrenia. Her father, my grandfather, developed tertiary syphilis from a relationship he had with a woman from the local reservation. Syphilis was not common in the mid-20th century, except on the reservations. He died early. There might be biochemical similarity between the spirochete of syphilis and schizophrenia.
This article is written by Dr. Fuller Torrey, MD
http://www.psychiatrictimes.com/articles/infectious-agents-schizophrenia...
My mother had paranoid schizophrenia, diagnosed in 1960, and had shock treatment. She had been a lab technician, and returned to that job. She had seen strange men in the house who were trying to do things to her: There were no strange men.
When my sisters and I were growing up, mostly she was fine, then she was not. She left for Mexico, and was babbling things that were not true. I talked her back to where she lived in the West and she was hospitalized, nearly 20 years after her first hospitalization. This was when she was put on an anti-psychotic, Prolixin.
She became a Licensed Practical Nurse. This worked well for her, until it didn't. She retired early. At times she acted on her delusions. This caused her to lose custody of me and my two sisters. She painted in acrylics and oils. She had a beautiful soul, to echo John Nash's story.
One issue I'm trying to research is a possible connection between tertiary syphilis and schizophrenia. Her father, my grandfather, developed tertiary syphilis from a relationship he had with a woman from the local reservation. Syphilis was not common in the mid-20th century, except on the reservations. He died early. There might be biochemical similarity between the spirochete of syphilis and schizophrenia.
This article is written by Dr. Fuller Torrey, MD
http://www.psychiatrictimes.com/articles/infectious-agents-schizophrenia...
7
With respect of this subject, syphilis was transmitted to Native Americans by American soliders who introduced many devastating illnesses like STDs to Native populations who did not previously have them. That period of time tribes were rounded up and forced into reservations always near military forts that resulted in complete abuse of Native Americans especially Native American women.
2
I had an incident like that with my 19 year old son 38 years ago. We got him into psychiatric care where he was diagnosed as being bi-polar and manic depressive. He has been on the border of mental disorder until about ten years ago when he managed to stabilize himself. A combination of medical psycho therapy and becoming a born again Christian -- (ouch! that really rattled my Jewish bones). But what the heck. If Jesus is keeping my boy sane, then let it be so.
I fully sympathize with you and hope things at least become stable with your son.
I fully sympathize with you and hope things at least become stable with your son.
56
Please be aware that "manic depressive" and "bipolar" are two names for the same disorder.
Hope your son is doing well.
Hope your son is doing well.
Tanya, I feel so much compassion for you on this journey. My mother was given the same diagnosis when I was in 4th grade. It really turned our lives upside down. It became a family disease. We were all mentally ill from it- literally. I will pray for you and your son. May you stay strong, and be able to handle whatever comes. I wish there was a cure. Mental illness is so rough for all involved. Peace and love to you.
27
An amazing story, wonderfully insightful. I hope the author has published this writing . It's an excellent explanation of schitzophrenia
13
There is so much misunderstanding around mental illness, which allows fear and false assumptions to permeate among so many and loneliness for those unfortunate enough to have this bestowed on them. In the process of trying to protect these special individuals, society has actually prevented the needed support and care due to restrictions placed on them. We, as a society, need to become more educated and human and put forth the energy for change that was made in the areas of HIV and the liberation of our gay community. We can do this, for those that are unable to.
12
Please investigate Lyme disease & Bartonella, a co-infection of Lyme. A family member after 2 years, was finally diagnosed by a Lyme Literate Doc who understands Lyme & what it can do to the brain. My family member had no physical symptoms, only psychiatric symptoms. Google Dr Brain Fallon at Columbia University. This is not "woowoo" as I had initially thought. Psych meds didn't help my family member but he is regaining his life with Lyme & Bartonella treatment. May not always be the cause, but should always be ruled out by a Lyme literate doc.
26
Having a family member with mental illness is an ongoing struggle. It took 10 years after being diagnosed with schizophrenia before our adult son agreed to get treatment. He was once hospitalized on a 72 hour hold without our knowledge; he now understands that he needs to indicate that his parents are to have access to him and his medical and treatment records. The HIPPA laws allow someone to talk to the medical professionals about their family member, but don't allow the docs to provide any information back without a release from the patient. Also, since he is unable to work because of his illness, we helped him apply for SSDI, so he receives a small monthly benefit. His medical costs are covered by Medicare, and in our state, the expansion of Medicaid. NAMI is an incredible resource. We took the Family to Family course, and our son also took the Peer to Peer classes once he had been in treatment and on medication for a couple of years. He is functional, but always hampered by varying degrees of disorganization and paranoia. We keep the phone numbers for Crisis Intervention handy, while hoping we won't need them. He is now 39, lives a mostly secluded and lonely life, unable to form lasting, meaningful relationships. It is not a happy existence, and it's very hard for him and us to accept that this likely will not change. There needs to be much more done to provide ongoing support for people with mental illness. I have heard many horror stories that are much worse than ours.
82
For all of you who are choosing to be judgemental and advise giving..... this essay is about the emotional response of a mother suddenly losing a beloved child, whom she bore in her womb and delighted in as he grew into a wonderful young man, to a sudden and frightening psychotic break and the realization that neither of them nor their life together would ever be the same. If you have been fortunate enough to never have had this horrifying experience, please, please, consider empathy rather than judgment, compassion rather than advise giving. From someone who has been there, the author has captured the thoughts and feelings of this kind of unimaginable experience exquisitely. Pray, pray, that you and a beloved never have to live through this type of experience and its aftermath! And for those of you who would like more information on the author and her son, click the link on the author's name.
95
Suzanne, Tanya's son isn't "lost". He's reading this article AND these comments. We must defer to HIS judgments about his mom's actions towards him and account of his life. That the compassionate way to treat the subject of a story.
If ever there was another reason for single payer health care in this country, this essay is certainly it. There are probably thousands of other families out there whose lives may be similarly disrupted by mental issues that are so hard to fathom, and who need help that might not be available. My heart goes out to the author and all those like her. I may be approaching a world that, while not as frightening as her son's, is not as secure as it was a decade ago. The words I cannot remember...not forgotten, just no longer accessible. I can only hope that my body deteriorates at the same rate so that my children are spared the pain of losing the mother they know for one who is a stranger to them.
26
Even if you feel you have become a stranger to yourself, you will never be a stranger to your children. If you don't know who you are, they will know who you are, and they will love you as ever, and you will love them. Love lasts. I hope this doesn't happen to you, but I want you to know that if it does, you will be loved and known. People often asked me if my mother "knew me." I learned to say, "I know her."
13
Beautifully said, Nancy. I completely agree.
1
I lived with this as a boy mostly in the 1950s.
My father was classified with what they then called Paranoid schizophrenia. It had started in his teens and by his 20s he was being detained at King's County Hospital for a trip to Pilgrim State Hospital where he'd be for months at a time.
He had all the worst stuff you hear of as treatment. Ice baths, insulin shock and electroshock. The drugs they prescribed when he was home would just put him to sleep for 1/2 day or more. Believe it or not he was capable of working as a sheet metal mechanic.
By his late 30s he was a lot better. I don't know if he was better or just getting better drugs but he was much improved.
Still he wasn't right though. I worked with him in my teens traveling to install commercial kitchens in restaurants and airports around Florida where we'd moved in 1964. Sometimes we'd go to eat and he'd swear people were talking about him or even laughing. I'd have to talk him out of it and calm him down. It persisted while I was an adult with a family of my own. My mother had divorced him when I was 35 and he leaned on me for support. I'd guess that she was finally through with it although that had come years before and staying together just made everyone else sick of it. The legacy of it all is a very dysfunctional family. I dreaded the telephone calls.
He remarried when I was 40. He was then 57. His new wife seemed able to deal with him and I got fewer calls and finally they stopped. He seemed a lot happier too.
My father was classified with what they then called Paranoid schizophrenia. It had started in his teens and by his 20s he was being detained at King's County Hospital for a trip to Pilgrim State Hospital where he'd be for months at a time.
He had all the worst stuff you hear of as treatment. Ice baths, insulin shock and electroshock. The drugs they prescribed when he was home would just put him to sleep for 1/2 day or more. Believe it or not he was capable of working as a sheet metal mechanic.
By his late 30s he was a lot better. I don't know if he was better or just getting better drugs but he was much improved.
Still he wasn't right though. I worked with him in my teens traveling to install commercial kitchens in restaurants and airports around Florida where we'd moved in 1964. Sometimes we'd go to eat and he'd swear people were talking about him or even laughing. I'd have to talk him out of it and calm him down. It persisted while I was an adult with a family of my own. My mother had divorced him when I was 35 and he leaned on me for support. I'd guess that she was finally through with it although that had come years before and staying together just made everyone else sick of it. The legacy of it all is a very dysfunctional family. I dreaded the telephone calls.
He remarried when I was 40. He was then 57. His new wife seemed able to deal with him and I got fewer calls and finally they stopped. He seemed a lot happier too.
19
I'd like this type of essay to focus more on what the 19-year-old son was thinking, feeling, and remembering during his psychotic break, hospitalization, and post-hospitalization. This essay describes the mother's reactions but she isn't the one with the serious work ahead of her. What was going on in the mind of the son? To be honest, some of the description in this essay didn't progress the narrative in any way. On the other hand, where was the description of why the grandmother was hospitalized for 20 years?
4
This is not English 101 composition class, and you're free to write the essay about coping with your own child's mental illness any way you please.
32
So, you give it a B- ?
10
It would be presumptuous if not impossible for the writer to have described what her son was thinking or feeling during this episode, or at any other time. Those are his experiences to share with us, or not. The writer's essay was respectful and moving. What more could we ask for.
22
What a profoundly beautiful piece -- it captures the heart wrenching and terrifying world that a family faces when a loved one is in a psychotic state and
then the ensuing ramifications. Thank you, Tanya Frank.
then the ensuing ramifications. Thank you, Tanya Frank.
23
I can relate as well. I'm a 21 year old girl who's mother was diagnosed 9 years ago. I gave up everything to make sure she was safe and am still battling with it today. There isn't a more hopeless feeling in the world. Stay strong.
51
Sometimes hopelessness pulled at me, seeming to embrace my entire life and rendering me and my affected son fathomless despair and resentment. I understand and share with you my strength and resolve. You will thrive, because the experience instills in those who care, as you seem to do, a knowledge of human limits and the shortcomings of modern science in treatment of mental illness. That is where hope enters the picture. Its never far away, but just seems so far; often appearing as just another trick that madness plays upon itself. This reader cares about your and your mother's situation. As much as possible, be strong and live strong.
30
Thank you for your beautiful, elegantly written essay. I look forward to your book.
13
I know exactly how you feel. My 34 year old son was diagnosed with the same illness five years ago. He is constantly monitoring Face Book and tv, for signs of being monitored by "them". He believes eventually they wii kidnap and then kill him. I do everything I can to try to help him, seeking doctors and new medications. Then I realize what he needs most is love and a big hug. I would be filled with despair if not for my strong faith. In the meantime I just enjoy the good moments and try not to get upset during the bad times. Thank you for making me realize I'm not alone.
37
Thank you for sharing. I understand your pain. My son's experiences began in his early 20's and sound very silmilar. He is now 32, refuses to be diagnosed and does not believe he needs help. It's a tragic situation. As others have suggested reach out to NAMI. I hope your son will allow you to help him.
26
My daughter has it. HIPPA laws prevent families from helping adults with mental illness, including those suffering with psychosis who are unable to make rational decisions. Hospitals sent her home when she refused treatment. She went homeless for eight days, so I filed for guardianship. It cost us $13,000 to pay lawyers. She is a 'cash cow' and pumps $1million into the hands of caregivers over the course of 8-9 years. Sure medicaid and medicare cover costs. Hospital stays average $30,000 from 11 to 21 days. She was hospitalized four times last year. She receives a monthly injection for an anti-psychotic drug which costs $1500/month. That's why there are so many homeless: families cannot access help due to HIPPA laws nor pay the costs for treatment.
36
I don't understand how the HIPPA laws prevent the family from helping other family members who are adults and not functioning? I thought HIPPA was mostly for confidentiality of health information. Is this what you are referencing or is there a lot more to the law than I am aware of? Can you help me out here? Thank you.
Under HIPAA an adult patient has to allow the health care provider to share information with named others. Without that express permission, the health care provider cannot legally say anything or work with the family/friends of the patient. That's the impact of the annual HIPAA form you sign at the doc's office. You have to affirm that you allow the doc to leave messages on your phone, a shared phone number, and notify other named individuals.
8
HIPAA prevents release of an adult's medical information, even to parents, even when the adult child is psychotic. A parent has to prove the adult child incompetent and get legal guardianship. A criminally stupid misapplication of the law's original intent.
16
I recommend DJ Jaffe's new book, Insane Consequences, to help accelerate your understanding of some of the truly bizarre American medical systems you may need to engage with to help your son manage his illness and find stability.
5
My son and I, he of the schizo-affective disorder, had our own version of disorder. It subsumed our lives in god, the police, and those of us who have been 'round the world. He was a poet. He was a singer of odes. Your narrative resonates with me and Jason, and I treasure the act of reading it. Thank you. You will understand this, it is a stanza of one of his last poems:
'The Living Poem by Mack'
The living poem
Is a slender thing
Made from feathers
Made from hair
The living poem
Burns with melody
A churns so very obviously, in the yard
I swell like beaches
I dry like death
Me, the scribbled line
The rotten lime
Me the dropping stone
The man.
'The Living Poem by Mack'
The living poem
Is a slender thing
Made from feathers
Made from hair
The living poem
Burns with melody
A churns so very obviously, in the yard
I swell like beaches
I dry like death
Me, the scribbled line
The rotten lime
Me the dropping stone
The man.
57
Beautiful. Thank you.
4
Your son is an adult. Does he have your consent to publish this very personal information? I understand that commentators are lending you empathy/sympathy plus giving advice, but as the parent of a young man (with or without a diagnosis of anything either psychological, social or physical), this piece appears to me to be a teaser for your memoir. Is your son okay with that?
21
Does she have his consent. All too often people do this to us. We are objects. Like calling ma "a bipolar" uh. I am not a bipolar.
3
Who are you to ask her that? Exactly, what business it is if yours?
2
This comment is a stunning clear illustration of what is wrong with the current mental health system. In the drive for "autonomy " we hide behind HIPPA regulations and privacy concerns rather than really attempting to understand what the SAD affected person and their family are experiencing. We would rather see these people live on the brink of terror and harm than give up on the notion violating their privacy. We do this because it makes us more comfortable, I do not have to deal with what I don't know. We should be ashamed as a society. These families need support, assistance and understanding if there is to be meaningful care. They do not need platitudes about privacy.
19
I'd like to let New Yorkers know about the Ontrack program for young people experiencing their first episode is psychosis. It provides therapeutic interventions, support groups, medication, job placement, educational assistance and so much more. They are doing an excellent job!
http://www.ontrackny.org/
If you live elsewhere look for Early Intervention in Psychosis programs.
http://www.ontrackny.org/
If you live elsewhere look for Early Intervention in Psychosis programs.
22
My heart is heavy for you.
My mother had schizoaffective disorder, and o became her caregiver from an early age, and this self-appointed position I took on didn't end until her death, when I was in my late forties.
Ten years later, I have a sister whom we've always suspected was bi-polar until shortly after my mother's death, it became clear that the stress created paranoia and delusions consistent with SAD.
She's isolated everyone---her own children and friends and family. I've been so frustrated with her inability to recognize she has a mental illness. She is so angry and abusive to the few of us who do try to help.
After leaving home and home, shelter after shelter, I don't know where she is, nor where she's been for over a week. and Not an hour goes by wherein I don't feel a pang of sadness, and at the same time, guilt and anger.
All who responded here with similar circumstances have suggested peer support through NAMHI and I will look into these programs asap.
We never know when our words will help another, and so I thank you for your candor. You article assured me that there are resources and that other families have walked in my shoes.
My mother had schizoaffective disorder, and o became her caregiver from an early age, and this self-appointed position I took on didn't end until her death, when I was in my late forties.
Ten years later, I have a sister whom we've always suspected was bi-polar until shortly after my mother's death, it became clear that the stress created paranoia and delusions consistent with SAD.
She's isolated everyone---her own children and friends and family. I've been so frustrated with her inability to recognize she has a mental illness. She is so angry and abusive to the few of us who do try to help.
After leaving home and home, shelter after shelter, I don't know where she is, nor where she's been for over a week. and Not an hour goes by wherein I don't feel a pang of sadness, and at the same time, guilt and anger.
All who responded here with similar circumstances have suggested peer support through NAMHI and I will look into these programs asap.
We never know when our words will help another, and so I thank you for your candor. You article assured me that there are resources and that other families have walked in my shoes.
67
So sorry you're having to deal with this. Best wishes to you.
8
Thank you. We come off islands of despair when we realize we are not alone.
8
Can relate only to well. My beloved son had his first psychotic breakdown at 19 and died last year aged 40, in palliative care, from end stage liver disease. One relative attempted to understand, the rest just thought it was all wilful misbehaviour. He smoked marijuana from age 14 (never, ever accept this is OK for adolescents and their developing brains). He was nearly always compliant with medication but was also an IV drug user and chronic alcoholic, as the medications are so sedating and he wanted to feel better. Serious mental illness suffers from crap ideology such as "living in the community" c.f. mental institutions. OK, some institutions were bad (they also cost a helluva lot of money) but what are needed are intensive community supports for chronic sufferers who are clearly not going to be that person who returns to work, no more episodes and so forth that all the mental health do-gooders keep promulgating. What about the cohort who are continuing to deteriorate as the decades go by? For them, living in the community means being homeless or terrifying (even very rarely, murdering) the last standing family member trying to prevent this. He was very, very disturbed: family assaults, serious arson, destruction of property, homelessness, theft, many court appearances, all very sad. And on top of it all, Mother of course is secretly, or quite openly blamed. I and my son deserved a whole lot better than we got.
112
Yes, you did and do.
15
I am so sorry you and your son went though this and that there was no happy ending for him. My condolences.
While this will not help you, I hope that some day there will be better treatment for people with serious mental illness so that they will be able to live normal lives, much like people with diabetes or other chronic illnesses.
While this will not help you, I hope that some day there will be better treatment for people with serious mental illness so that they will be able to live normal lives, much like people with diabetes or other chronic illnesses.
10
I can see why you got blamed. You've insulted your son, minimized the EVIL of snake pits, and neglected to tell us anything you did for him. He didn't need psychiatric narcotics. He needed a healthy, loving, and loyal family.
My daughter has it. She walked off and went homeless for eight days. HIPAA laws block families from helping victims of mental illness, even when they experience psychosis and are unable to make rational decisions. I became her legal guardian to advocate for her and to protect her from being victimized by a plethora of care-givers all making money off her case. She pumps a million dollars into the economy every 9 years. Sure medicaid and medicare are spent on her care. One hospital stay averages $30K from 11 to 21 days. Last year she was hospitalized four times. Guardianship cost us $13,000 to pay lawyers. That's why there are so many homeless--families let them go because of HIPAA laws and expensive medical treatment.
33
Yes, it can be so difficult to support a loved one with mental illness who also becomes homeless. HIPAA laws and the expense of treatment are serious challenges.
My mom has been mentally ill for almost 30 years, went off of her medication 13 years ago, and is currently homeless. She disappeared four years ago and reappeared a year and a half ago. I have tried since then to get her shelter and mental health care.
Her delusions prevent her from accepting shelter voluntarily. She also has anosognosia, http://www.treatmentadvocacycenter.org/key-issues/anosognosia, that prevents her from having the insight to know she has an illness.
The process to conservatorship, LPS conservatorship in my state, is extremely difficult. And it should be difficult to take away someone's rights in this way. It is nevertheless frustrating to have to wait till criteria are met.
So, I support her in the ways she will accept until I have other options. Still I can completely understand how sometimes family has to detach.
Sometimes, the ill person simply disappears. Sometimes, the ill person has also been violent with family. Sometimes, family detaches because it's simply too painful.
It's a very complex situation and each family has its own set of challenges. I feel for you all.
My mom has been mentally ill for almost 30 years, went off of her medication 13 years ago, and is currently homeless. She disappeared four years ago and reappeared a year and a half ago. I have tried since then to get her shelter and mental health care.
Her delusions prevent her from accepting shelter voluntarily. She also has anosognosia, http://www.treatmentadvocacycenter.org/key-issues/anosognosia, that prevents her from having the insight to know she has an illness.
The process to conservatorship, LPS conservatorship in my state, is extremely difficult. And it should be difficult to take away someone's rights in this way. It is nevertheless frustrating to have to wait till criteria are met.
So, I support her in the ways she will accept until I have other options. Still I can completely understand how sometimes family has to detach.
Sometimes, the ill person simply disappears. Sometimes, the ill person has also been violent with family. Sometimes, family detaches because it's simply too painful.
It's a very complex situation and each family has its own set of challenges. I feel for you all.
14
Heartbreaking. HIPAA laws do not provide freedom for people with mental illness; rather, it is the opposite as it blocks the possibility to help guide loved ones to make rational and positive decisions.
9
Please understand that you and your son can learn about his condition to be able to accommodate the changes in his moods and patterns of thought. He will be able to manipulate the complexities of life with a combination of techniques and medications. Your fears can be calmed as you learn more. Check out National Association of Mental Illness (NAMI), especially the marvelous workshop called "Family to Family."
24
NAMI was a lifesaver for our family under similar circumstances. I cannot recommend it enough.
5
My heartfelt sympathy for you from a mother with a son similarly affected since 2013. The worry never ends and I find the stress soul-crushing. Hang in there.
34
I am and have been in similar situation with a loved one. I highly recommend the organization NAMI, national alliance of mental illness, for education and support
8
perhaps i missed something herein...
is the author relating the situations that occurred in hers and her son's lives in '2009'?
pray tell: where are they now?
thank you.
8
This is not a journalist's news report--she is in the midst of writing some sort of memoir and we have been given a chapter, an important bit, the first time she had to put him into institutional care. What is the point of your question, exactly?
12
Angela, the obvious "point" is that SJ began to care about these people through reading the essay and would like to know how they fare currently.
2
The challenge continues to exist when a pseudo-scientific diagnosis, a stigmatizing and dehumanizing label and a complex person, kin, friend or a stranger with a name, and even a nickname coexist. With us. Near us. Far away. In an article like this one. In a film.Who this fellow human being is; his or her self identity, and ones created by others, is yet to BE, as well as may never be, somehow gets mixed up. With what s/he does,( maybe shouldn't). Doesn't do. Maybe should(ive). With what necessary, relevant, resources?Available?Accessible? Are the labelers, whatever their discipline, training, and experience resource experts? What enables them to be mavens assessing levels and qualities of daily coping, adapting, and functioning amidst life's uncertainties, unpredictabilities, impermanences, randomness and diversities? Having diagnosed and labeled, in what may be a lifetime of unexpected outcomes, what follows for the labeled, their kin, friends, various "others," as well as for the licensed-labeler? When named people transmute into descriptions which don't explain, and statistical analysis of numbers represent behavioral states of random-empowering-significance,in a post modern, secular, mantra, of "evidence-informed," in a daily violating world, what and WHO is normal?
15
In a daily violating world, psychosis is not normal. While it's true that the mental health industry makes up a whole lot of nonsense, diagnosis is extremely helpful if one has a developmental disorder, because the impact is typically lifelong. Medication is almost always necessary, compliance is difficult because most medications have complex metabolic side effects, and in this country, the right medical help is often hard to access.
9
Don't mix up a diagnosis with the individual. From what this woman has written, her love for her son is apparent. The diagnosis can bring --for some--a little relief. The diagnosis doesn't cure anything. But living with serious mental illness like schizophrenia or schizoaffective disorder can be unbearably painful. I think that is what this column is about.
8
I'm a sociology professor and have done work in health policy, so I get what you are saying about "others", labeling, and social construction. My ex-husband and the father of my children is also severely mentally ill and has had psychotic breaks. There is something in the latter than the former does not capture.
1
Beautifully, vividly, accurately written and absolutely familiar and terrifying. My mother mirrored everyone of your sentiments and I documented them in my soon-to-be finished film "That Way Madness Lies..." I hope you will visit the website and watch some of the trailers so you know that you have not been alone with this kind of suffering. Mental Health is vital to Health and we see it as something else. Thank you for your courage and articulate words.
17
My dear sister had this same affliction. Cognitively, she declined for some eight or nine years until her death. Her life and care was the centerpiece of my mother's life for the better part of a decade; losing her to the disease was devastating.
The symptoms described here, especially the irrationality, suspicion and delusional thoughts, were eerily similar to my sister.
My sister had the best care. We were educated and my partner is a physician, meaning we were very up on meds management, as much as family can be. Ultimately, we lost my sister to a tragic accident (circumstantially, ostensibly, caused by confusion intrinsic to the disease).
Comments suggesting supervised living, and independent living may be right. My mother blamed herself for a long time. She bore most responsibility for her care, and it was very difficult for her. If I could give some advice, it's to keep living. Forgive yourself, just do what you can. Then again, I feel like I didn't do enough, so what do I know.
Aside: When I was a young and immature teenager and saw someone suffering from mental illness on the street, I would marvel and almost laugh at the bizarre and often humorous behavior. Now, it makes me want to cry - it's not funny at all. I'm witnessing someone else's ongoing family tragedy.
The symptoms described here, especially the irrationality, suspicion and delusional thoughts, were eerily similar to my sister.
My sister had the best care. We were educated and my partner is a physician, meaning we were very up on meds management, as much as family can be. Ultimately, we lost my sister to a tragic accident (circumstantially, ostensibly, caused by confusion intrinsic to the disease).
Comments suggesting supervised living, and independent living may be right. My mother blamed herself for a long time. She bore most responsibility for her care, and it was very difficult for her. If I could give some advice, it's to keep living. Forgive yourself, just do what you can. Then again, I feel like I didn't do enough, so what do I know.
Aside: When I was a young and immature teenager and saw someone suffering from mental illness on the street, I would marvel and almost laugh at the bizarre and often humorous behavior. Now, it makes me want to cry - it's not funny at all. I'm witnessing someone else's ongoing family tragedy.
106
My heart goes out to you. I have a similar situation that have been dealing with for over 10 years. Please read "I am not sick and don't need help."
Keep him out of jail. Find other families dealing with this to help both of you. Don't walk this path alone- no shame.
Keep him out of jail. Find other families dealing with this to help both of you. Don't walk this path alone- no shame.
41
No they don't.
25
Chinese herbs? Are you serious?
9
I have schizoaffective disorder bipolar type.. It's really not a big deal. Just find out if something is exacerbating it, in my case a combination of Sinus Headaches and SUNCT headaches (both of which started 3 months before my first mental health episode in 1996) were making it worse. Last year I had sinus surgery, and this year I found out SUNCT headaches are treated with meds like topamax, tegretol, and trileptal -- all of which are 'also' mental health medicines which benefit mood stability, so a psychiatrist can treat it. I wouldn't call myself "cured" but without the head discomfort my mood and psychosis is much much improved.
28
One person. Not a doctor. Please get more help for your child (writer of the article). Help while the person is young is the most important thing. (This is what doctors told us. I pass it along for what it's worth.)
3
Chronic pain is responsible for increased symptoms so very often. Thanks for commenting.
10
Tanya,
I will keep you and your son in prayer. Mental illness is rarely understood and daunting. I encourage you to find a support group like Nami, but also encourage you to inquire if your local police station has received Crisis Intervention training, specifically police officers who are trained to deal with individuals experiencing psychosis. He sounds like a sweet young man and with CBT coupled with the right medication and doses, he should do well.
When he is better, he may find enjoyment in attending a NAMI consumers group.
You are not alone in this journey. Stay encouraged and thank you for sharing this heartfelt piece. :-)
I will keep you and your son in prayer. Mental illness is rarely understood and daunting. I encourage you to find a support group like Nami, but also encourage you to inquire if your local police station has received Crisis Intervention training, specifically police officers who are trained to deal with individuals experiencing psychosis. He sounds like a sweet young man and with CBT coupled with the right medication and doses, he should do well.
When he is better, he may find enjoyment in attending a NAMI consumers group.
You are not alone in this journey. Stay encouraged and thank you for sharing this heartfelt piece. :-)
24
Many areas have a "crisis intervention" line that can be called. Much better than local authorities.
3
I feel this writer's pain and desperation. I have a close family member who is schizophrenic and has a similar history. It started for him when he was 15 and has defined his whole life. The whole family have been profoundly impacted by his illness, lucky for them they live in Canada. One thing people may not be aware of is that people affected by schizophrenia are often not self-aware of their illness. They truly hear and believe and follow the 'voices' that they hear. They're often reluctant to allow doctors to help. So anyone who talks about self-reliance and taking responsibility for your own health are in denial about some conditions. And talk of 'lifestyle' modifications like exercise are just ignorant. My relative is severely ill and handicapped and is not capable of taking responsibility for his illness. How can you when you don't know you're ill? I shudder to think of what would have become of him if he lived here in the U.S. I wish the writer and his family all the best.
37
Yes. My brother remained in denial his entire life that he was ill. We managed to get him to doctors for short periods of time because he suffered and he was aware of it but he would ultimately reject the idea he was ill and the medication.
The United States is no place to be mentally ill. Little or no financial/social help/understanding and guns readily available (in homes) is a nightmare situation.
The United States is no place to be mentally ill. Little or no financial/social help/understanding and guns readily available (in homes) is a nightmare situation.
29
I agree with your opinion of "lifestyle" modifications. Another one that is creating guilt and denial and non-compliance with meds? The idea being shoved down our throats that we can achieve "recovery". Here in the states this is the new "push" against people with mental health issues. We can achieve some kind of stability. We do not "recover".
7
Be sure to get a second opinion, and from the most respected psychiatrist you can. Pay full price, hourly rate. The diagnosis could be modified and the treatment plan include a very low dose of an anti-psychotic medicine. This approach does have a chance to work, which means alleviating your sons delusional thoughts- and at the same time preserving his sanity, self image in tact.
I caution you to not overreact, take care of yourself and get another opinion.
I caution you to not overreact, take care of yourself and get another opinion.
36
My daughter had a psychotic episode (self-harming, hearing voices) at 19 (which I have read is the usual age) and her psychologist diagnosed possible schizoaffective disorder. She stayed out of school for a semester and saw a counselor weekly but was never prescribed drugs. She returned to college and has had a normal life for the last 13 years. Another opinion might be worth it.
And I found it interesting that when she applied for her first health insurance policy after college, they agreed to cover everything BUT mental health - the only insurance she had ever used. So, yes, politics is involved in our health care.
And I found it interesting that when she applied for her first health insurance policy after college, they agreed to cover everything BUT mental health - the only insurance she had ever used. So, yes, politics is involved in our health care.
2
Beautiful essay - humbling in so many ways. She feels so lost - but clearly she is doing all the right things. Comforting him beside her, with the dog as well - just right. I have hope for this sweet boy, and confidence in his mama who knows and loves him so well... one day at a time...
35
Beautifully written with all the feelings one would expect. Fear. Compassion. Anxiety. Guilt. Hope. All expressed in 1,000 (give or take) succinct words. Both your son and students are lucky to have you.
May all those who need it find succor. And to you, Ms. Frank, and your son most of all good luck.
May all those who need it find succor. And to you, Ms. Frank, and your son most of all good luck.
43
Yes, beautifully written, but as one who's child also went through something like this and got sucked into the mental health system with disastrous results, I think the author may be grasping a bit too tightly to the labels and paradigms that have hurt so very many people. Before thinking the diagnoses and medications are liberating and life saving, read widely and skeptically about both psychiatry and psychopharmacology. And before accepting that this young man is suffering simply from a debilitating brain disease, let's please have some context and some understanding of anything toxic or traumatic that may have precipitated the delusions and paranoia. Lots of substances as well as experiences can do this and pills are only going to exacerbate the problems over the long run. Hard for many to accept, but open your mind to this, become truly informed, and you are on the way to healing.
21
Tanya, if you have the money to hire a private counselor to further look into the events leading up to the first time you noticed something unusual (backtrack), I would. So quickly, only after 72 Hours of a Involuntary Confinement in a "not so sure the quality of the place you took your son to"---- is not good enough, is not substantial enough to draw such a conclusive diagnosis. I would hire someone who has a very high IQ, and is very well-educated. Perhaps a Professor at Stanford since you said you were in California. If you were in England, I would suggest Oxford University. (although you are faced with the issue of: some Professors are higher-ranked than others.... just like MD Doctors are). Your son, might actually be having a normal reaction, and not a psychotic abnormal reaction. And it might actually be a simple matter of stopping what has initially bothered him. It just might take a well-educated person to ask your son the correct questions, have a high-level conversation with him. The people who diagnosed him and "maybe" cared-for him in that facility might have actually made him worse, since now he has to recuperate from that shocking, involuntary ordeal. What you wrote about after you brought him home, sounds like the Mental/Behavioral Hospital did not find-out what brought this on. A Professor probably wouldn't charge money. It might be just a matter of switching his School, and being around new people who are highly intelligent, highly academic.
13
Mental illness is frightening to the person experiencing the breakdown also. There's that last moment of sanity where you know something is very very wrong but there's nothing you can do to stop the trainwreck that is unfolding. When you do return to yourself your whole life has been foreveraltered.
Please check out NAMI. They have recourses that will help both you and your son cope with this new reality. Having support from a community that deals with mental illness will help both of you. Never forget that your son is just as scared as you are.
Please check out NAMI. They have recourses that will help both you and your son cope with this new reality. Having support from a community that deals with mental illness will help both of you. Never forget that your son is just as scared as you are.
21
Get him a full physical check up fast. More than one doctor, if need be. Make sure they check and double check his thryroid, as low thyroid functioning can lead to psychotic episodes. Don't let doctors tell you these tests are unnecessary. Be stubborn and determined.
Learned this the hard way after ten years lost for my child, after which a $10 prescription of Synthroid fixed all those "schizoaffective disorder" symptoms and that was 20 years ago. It may not be the problem, but that doctors never consider a physical cause is appalling.
Learned this the hard way after ten years lost for my child, after which a $10 prescription of Synthroid fixed all those "schizoaffective disorder" symptoms and that was 20 years ago. It may not be the problem, but that doctors never consider a physical cause is appalling.
55
Most doctors will not help people with low end of normal thyroid.
2
"Most doctors will not help people with low end of normal thyroid." Yeah, you got that right. Just look at a current article about thyroid care in the Health section of the NYT.
I find it chilling that people are so militant about mental illness, yet be so against treating subclinical hypothyroidism--which can contribute (if not be the direct cause) to serious depression. It's a real disconnect in this society that some diseases are thought to be "more important" than others.
I find it chilling that people are so militant about mental illness, yet be so against treating subclinical hypothyroidism--which can contribute (if not be the direct cause) to serious depression. It's a real disconnect in this society that some diseases are thought to be "more important" than others.
1
My mother was diagnosed with schizoaffective disorder when I was 11 years old, my sister and brother were 6 and 5. Her life was a series of long and short stays at every psychiatric hospital in the Boston area throughout the 70's, 80's and 90's. Her agony was only compounded being married to my father, a mean and abusive alcoholic. I sometimes wonder how me and my siblings survived the nightmare that was our childhood with these two people completely incapable of caring for their three children. No one helped us. Relatives and neighbors stayed away. Yesterday was my mother's birthday. Had she been alive she would have turned 90. My heart still breaks for her, and for myself and my siblings who were never able to have a mother that so desperately craved.
84
You are not alone even though you are in a lonely place.
I can't agree more strongly with the comments stressing the importance of finding a sustainable antipsychotic medication and sticking with it. That is the very beginning...the child must be encouraged to be as independent as possible including disease management, education, employment, housing, and as mentioned in other comments therapy is vital to assist in understanding when a social cue exists or whether there is a paranoid thought, how to respond appropriately. Finally, my kid has a trauma component to his recovery...he was so mistreated (blamed and abandoned) by peers, educators and mental health professionals before his diagnosis and he has so much grief over having such a serious brain disorder he has difficulty trusting people for reasons independent of his mental illness.
There are a handful of private psychiatric hospitals in the US which are light years up the learning curve on treating these disorders and enjoy phenomenal success but they are also prohibitively expensive for most people. One example is Silver Hill Hospital in New Canaan Connecticut.
Finally, I will say it even though liberal New York Times readers will excorciate me for it. Keep your kid off pot. It is the furthest thing from harmless, it interacts with psychosis on the order of a mental health nuclear bomb.
Good luck, reach out, get help.
I can't agree more strongly with the comments stressing the importance of finding a sustainable antipsychotic medication and sticking with it. That is the very beginning...the child must be encouraged to be as independent as possible including disease management, education, employment, housing, and as mentioned in other comments therapy is vital to assist in understanding when a social cue exists or whether there is a paranoid thought, how to respond appropriately. Finally, my kid has a trauma component to his recovery...he was so mistreated (blamed and abandoned) by peers, educators and mental health professionals before his diagnosis and he has so much grief over having such a serious brain disorder he has difficulty trusting people for reasons independent of his mental illness.
There are a handful of private psychiatric hospitals in the US which are light years up the learning curve on treating these disorders and enjoy phenomenal success but they are also prohibitively expensive for most people. One example is Silver Hill Hospital in New Canaan Connecticut.
Finally, I will say it even though liberal New York Times readers will excorciate me for it. Keep your kid off pot. It is the furthest thing from harmless, it interacts with psychosis on the order of a mental health nuclear bomb.
Good luck, reach out, get help.
62
We're managing with Chinese herbs and yes - I never thought I'd say this - keep them off pot! The new strains are really bringing out MH issues.
9
I have no experience with this situation, but I would think that the use of any drugs not prescribed by the patient's MD would not be a good idea for someone with a psychiatric illness.
4
I am a liberal NY Times reader and I agree with you completely about the hazards of pot to a vulnerable adolescent brain, especially the potential for triggering or exacerbating a psychotic break. I have a young relative to whom that happened, and that bright young adult spent months in residential treatment at huge expense to her family. They felt lucky they could cobble together the funds.
What we middle-aged folks need to understand is that the "pot" available now is stronger than what our peer group smoked in the 1970s and 1980s, according to various sources, with much higher levels of THC (http://www.livescience.com/53644-marijuana-is-stronger-now-than-20-years.... Young people are also vaping synthetic marijuana, which may have more impact. It may be adulterated.
As someone still raising teenagers, I have not appreciated the NYT's editorial campaign to legalize marijuana everywhere as a recreational choice. Medical marijuana should be different, but my young relative easily got a card for that so she could purchase legally in her state.
What we middle-aged folks need to understand is that the "pot" available now is stronger than what our peer group smoked in the 1970s and 1980s, according to various sources, with much higher levels of THC (http://www.livescience.com/53644-marijuana-is-stronger-now-than-20-years.... Young people are also vaping synthetic marijuana, which may have more impact. It may be adulterated.
As someone still raising teenagers, I have not appreciated the NYT's editorial campaign to legalize marijuana everywhere as a recreational choice. Medical marijuana should be different, but my young relative easily got a card for that so she could purchase legally in her state.
2
I have experienced that "morphing into something new" and the resulting symbiosis.
Tanya, keep holding on!
Tanya, keep holding on!
8
What a beautifully written piece. If I wasn't at work, I would be weeping openly.
22
My husband had such a break. I cannot imagine the heartbreak of having it happen to a child. This is beautifully written.
27
Families confronting the reality of serious mental illness need far more guidance, financial and legal support than our society currently provides. Though it's a tough constitutional issue, forced treatment needs to be an option seriously impacted families can more easily turn to. To prevent abuse, a robust and independent case review system should accompany any changes in the law. Those with a form of mental illness which drives frequent and unpredictable breaks with reality need to be prioritized for treatment. Their families and society in general also need new legal tools to help them manage that treatment. It is the very type of situation described in this article that negatively impacts not only the sufferer, but family and friends. The effect of severe mental illness on family can be as potentially life disrupting as it is for the sufferer. Though many victims of diseases like schizophrenia can learn to become functional members of society, we must also accept that some never can. Better mechanisms must be created to care for them in a humane and protective manner, as well as to provide far more support for all those who surround them. Over the longer term, far more spending on basic research also represents sorely needed investment. Any reduction in this funding is the last thing society needs.
46
You are not alone. Today, thank the Lord, there are adequate medications to control illnesses. The down-side is that the most effective are too expensive for anyone to use on a regular basis; hence the cycle of fear, breakdown, hospitalization, outrageous medical bills, despair, breakdown.......it never ends.
Pray for those with chronic illness. There is no cure---there is merely temporary suppression of symptoms.
There are three things mentally ill people need the most: Competent medical care, low-cost treatments, respect as brothers and sisters in our human experience.
Pray for those with chronic illness. There is no cure---there is merely temporary suppression of symptoms.
There are three things mentally ill people need the most: Competent medical care, low-cost treatments, respect as brothers and sisters in our human experience.
26
you should be able to get medication through medicaid coverage, community mental health centers or through drug assistance programs. Some of the meds not affordable previously can be gotten through coupon programs without insurance for $10 to $20 dollars per month. Just takes some creativity and completing forms by provider, providing proof of income.
2
Thanks to the author for sharing this story. My mother has schizoaffective disorder. I know how hard it can be to deal with and communicate about. The more I open up my story though, the more I find others in the same company and there is strength in that.
For anyone dealing with mental illness or their families and caregivers, I highly recommend NAMI, https://www.nami.org/. In addition to other resources, they run amazing peer support groups. I don't know where I'd be without them.
For anyone dealing with mental illness or their families and caregivers, I highly recommend NAMI, https://www.nami.org/. In addition to other resources, they run amazing peer support groups. I don't know where I'd be without them.
41
Ms. Frank: My son's story was very similar to the account you've shared here. You may wish to contact your local chapter of the National Alliance on Mental Health to learn of available resources. Also, as has been noted in other comments, it is very important that your son seek out, under a physicians supervision, the medications that will control his symptoms with the least number of side effects. Unfortunately, this often takes time. My son was unable to endure this process, and finally resorted to various forms of self-medication with disastrous results. I wish you and your son a much more successful journey. Thank you for sharing your story.
30
Hi Jack - My son as well. We have him on Chinese Herbs from a reputable Doctor. It was recommended from a friend whose son hears voices if he goes 3 days without his herbs. It could help. I know it helps a few out there. I hope it continues to help us. - Diane
2
Your experience is anecdotal. It is irresponsible to recommend Chinese Herbs as a solution, as so many will grasp at any straw when under duress. There is no magic bullet. There are those, however, that have made it their life's work to understand, diagnose, and treat mental disorders. Often there is not a cure, only a better way. Treating major mental disorders with anecdotal remedies is naive at its best, lethal at its worst. We must balance our hearts with strong, scientific evidence when dealing with these tragic disorders. The cost of not doing so is far too great.
1
Appreciate the comments, @Loren Fisher, but what, pray tell, is this 'balance our hearts,' and what is your scientific evidence for it? My son, and I with him, experienced for 27 years those who made it their life's work to treat mental disorders at the top science/medicine institutions in the world. And to be sensitive but straightforward, the disciplines have barely progressed beyond the medieval ship of fools. There are horror stories I can relate, specifically about treatment of schizo-affective disorder and the associated other illnesses which accompany it, that would make your toes curl. So, anecdotal? What exactly do you propose in the face of science's spectacular failures in treatment of this illness?
3
We do have national heath care for the disabled. My brother who is autistic is covered by Medicare and Medicaid. All his medications are covered as well as all his medical care. One needs to find the right professionals to write disability application.
25
It can take weeks or months to get disability approved and in the meantime you are on your own. And even with disability, Medicare and Medicaid are not immediate and they are not guaranteed. If your disability check is too much (!) you have to get insurance on your own.
19
Yes, it did take time to find the right professionals to help my brother, but he has many medical issues and has received Medicare and Medicaid for 25 years. His disability check is less than one thousand a month. Medicare and Medicaid do not solve all his personal problems, but he might be dead without this help. Medicaid is provided because he is indigent. I think Medicare comes automatically with the disability status. Good luck to anyone investigating this route to some help.
11
Why yes, one does need to "find the right professionals to write the disability application." Aisle 10 at Wal Mart, right?
5
Thank you for sharing. Mental illness touches so many of our families but yet very few are brave enough to acknowledge it openly. Scientific understanding and treatment are so incredibly primitive. There is still so much stigma associated with these diseases because they are so poorly understood and involve our most basic sense of our human identity. Our society does such a poor job of taking care of our mentally ill. Starting with Reagan, we have consistently defunded care and treatment for the mentally ill. Instead, we rely on incarceration for the most part, especially if you are poor or minority. It is long past time that we treated the mentally ill as people deserving of treatment and understanding. We treat our pets better in this society.
64
As the author notes at the beginning of the piece, America is a nation without a public health service. This is her family's (and all others touched by mental illness) biggest problem. This has caused the disciplines of Pyschiatry and Psychology to take a different evolutionary path in this nation instead of others. Articles abound about how in America, the conditions are diagnosed to suit the drugs and not vice-versa as everywhere else. Though the piece is very well written, it isn't forthcoming. We know the symptoms of the child and the current feelings of the parent — that simply isn't enough to make any analysis or offer good advice. (And I don't suggest that's a problem, for consciousness raising alone is important.) I had a friend with a similar diagnosis, similar symptoms. He had been using heroin since around 14 (he was 18 at the time.) I knew his mother, she was in complete denial and perhaps ignorance of her son's drug habit, but she was an intelligent and sensitive person. I've also had several friends who were put on anti-depressants as adolescents, prescriptions written by unscrupulous doctors (no shortage in freedom's land). This caused them to grow up without a balanced sense of when to by frightened or not, and how to judge human qualities and intentions. What I have seen in my life in our nation is a cult like belief in doctors as leaders and drugs as solutions. They can be good, but love and deep knowledge of feelings are needed too.
23
This is such dangerous nonsense. There are many adolescents who have serious depression and need medication. To aver that taking an anti-depressant creates an inability to know when to be frightened or not and an inability to judge human qualities and intentions has absolutely no basis in reality. The shorter-term need for Ms. Frank's son absolutely was medication, an anti-psychotic to begin.
34
Anti-depressants inhibit the ability to feel depressed, they eclipse sadness. For a person who is genuinely depressed, possibly suicidal, of course anti-depressants are rightfully prescribed by physicians practicing their profession correctly. My reference was to individuals I know who were not clinically depressed, but simply passing through adolescene and not in agreement with their parents about the role they wished to play in their own lives. The parents took them to doctors and demanded that the doctors medicate them inorder to modify their behaviour, these "physicians"complied. What I wrote was not "dangerous nonsense", it spoke honestly about particular people I have observed and how the early and long term dependence on a pill to keep themselves from ever feeling sad, wether about circumstances in their lives or their own personal actions and the judgements they needed to make concerning them lead to problems. This was citing a cautionary and specific situation — drug abuse — not the correct use of the drugs.
7
@Arthur, Jim Hannon was correct--your first comment was dangerous nonsense, and the proof is your second comment.
You have a 1950s--or earlier--misunderstanding of the disease of depression (it is not equal or equivalent to feeling sad). As for the idea that an antidepressant is "a pill to keep themselves from ever feeling sad"--if that were true even 10% of the time, the pharmaceutical companies would run out of space to display all the Nobel Prizes they'd receive--and deserve. In other words (and without the snark) that is not what antidepressants are designed to do, though if treatment for depression is successful, ONE of the person's happy outcomes MIGHT be less sadness (if the person's particular depression includes a symptom commonly labeled "sadness"). As for your cockeyed belief that medications cause people "to grow up without a balanced sense of when to [be] frightened or not, and how to judge human qualities and intentions"--The Log is comforted by the knowledge that you are [pretty obviously] not a mental health professional. You are right about one thing: "...love and deep knowledge of feelings are needed, too." But that's common sense and compassionate advice--not a treatment plan.
Back to work:
You have a 1950s--or earlier--misunderstanding of the disease of depression (it is not equal or equivalent to feeling sad). As for the idea that an antidepressant is "a pill to keep themselves from ever feeling sad"--if that were true even 10% of the time, the pharmaceutical companies would run out of space to display all the Nobel Prizes they'd receive--and deserve. In other words (and without the snark) that is not what antidepressants are designed to do, though if treatment for depression is successful, ONE of the person's happy outcomes MIGHT be less sadness (if the person's particular depression includes a symptom commonly labeled "sadness"). As for your cockeyed belief that medications cause people "to grow up without a balanced sense of when to [be] frightened or not, and how to judge human qualities and intentions"--The Log is comforted by the knowledge that you are [pretty obviously] not a mental health professional. You are right about one thing: "...love and deep knowledge of feelings are needed, too." But that's common sense and compassionate advice--not a treatment plan.
Back to work:
7
This was a beautiful and affecting essay and I am grateful to the author for sharing. For her or anyone else in this situation- I encourage you to find the antipsychotic medication that produces the most tolerable side effects and stick with it religiously. Ceasing medication without adequate supervision leads directly to further psychotic breaks. This usually includes a week or so in an inpatient psychiatric hospital. This would be bad enough; traumatic enough. But schizophrenia and the related thought disorders (including schizoaffective disorder) are chronic and severely debilitating over their disease course. Each psychotic break causes widespread death of neurons of the cerebral cortex. Over time this has devastating effects on ones intelligence and ability to function independently. Research shows that the sooner one starts antipsychotic medications after their first psychotic break, the less cortical damage they suffer - as long as they are able to stick to a medication. Work with your provider to find the medication you can tolerate, and hopefully yet more tolerable medications will emerge. Do everything you can to prevent the neurotoxicity associated with psychotic breaks.
Thank you for reading. Sending strength to anyone who has to face this devastating illness in any capacity.
Thank you for reading. Sending strength to anyone who has to face this devastating illness in any capacity.
73
Nice theory but nonsense. We don't have the answers to many things esp. mind conditions. Having psychiatric episodes does not limit neurons by which you imply a person's ability to think, function, do impt. work post
episode.
episode.
2
A nice essay and several very good Comments. As a retired psychiatrist, may I just throw in my two cents: this then 19 year old had a first episdoe in 2009, and the diagnosis, and treatment, may have solidified since then, I will say that it was always to avoid "definitive" diagnosis in someone so young, and in first break. Tentative, tentative, tentative, with lots of support but minimal meds. Okay, this might under-treat, but some of those "classic" cases got better without a second episode.
And second: getting the person to acknowledge problems, and get curious about what is helpful and what not, builds on the ability of the patient to be a participant in solutions.
And second: getting the person to acknowledge problems, and get curious about what is helpful and what not, builds on the ability of the patient to be a participant in solutions.
124
Thank you for this comment. Three of the four children in our family have had one psychotic break, and to my knowledge no more than that. Once of us (me) has had substantial and ongoing follow-up care with therapy and anti-psychotic drugs, but the rest have not, and all of us have had reasonably happy and productive lives. I can say the same of many friends. One friend with a bipolar diagnosis at age 18 has beautiful children and successfully works as a psychiatrist, despite more than one hospitalization over the years. Another had two successive and highly-awarded careers end because of manic-depressive cycles, but earned her way into a peer counseling job and off of disability. Another became a successful writer at a young age, even selling a script that was made into a major motion picture based on his hospitalization for depression, but ended up ending his life at the age of 27. Three other friends went on disability after continued psychotic episodes without finishing college, and remain on it. Those of us who made enough peace with ourselves to acknowledge our psychiatric disability were often the ones who seemed to have the best long-term results. But the consequences of being viewed as mentally ill or dependent on medication are so severe that it is a very difficult thing to acknowledge. It would be better for all of us if the world were a more open-minded, understanding place.
9
one mother speaking to another. thank you!
21
Your son is not a closed case. Everything changes. Look into this therapy and see if anyone practices it in LA. It could really help.
http://www.dialogicpractice.net/
http://www.dialogicpractice.net/
4
Sounds terrifying. I admire her strength in keeping this "boy" at home instead of sending him to live in a psychiatric institution for his and the family's safety. What was he going to do with the knife that was in his bag? Scary.
9
Send someone to live in a psychiatric institution? After one episode of psychosis? That's like sending someone to a nursing home after they get flu. I had a serious psychotic break in January (I also have schizoaffective disorder.) By March I was well enough to travel abroad on my own. It's a bloody awful illness but we're still people and our lives continue.
11
You obviously have no experience with having a family member with mental illness. This is a cruel, antiquated and bullying response. You should it comment on things you know nothing about. This article was not meant to entertain.
7
Frank and thousands of other American families did not in 2009 and do not now have the option of "sending" mentally ill loved ones to "live" in psychiatric institutions even if that option were desirable, which it isn't. Other than a scattering of state facilities that are more like prisons for those whose symptoms are intractable, there ARE no publicly-funded long-term psychiatric facilities. And the few lovely, private-pay, long-term-treatment psych rehab communities are so exorbitantly expensive ($300K/year) that only the 1% can afford them. Psychotic episodes are transient and treatable with extended short-term (but much longer than the current 72 hours) inpatient treatment with outpatient follow-up. State funding for adequate short-term care varies dramatically, and sadly for Frank's son, CA doesn't top that list. I speak from many years of experience with my own son, and extend hope and courage to Frank and hers.
29
A beautiful essay.
32
This is a beautiful account of how a family and sense of security can be shifted after a break. Thank you for sharing.
35
I'm very sorry this happened to your son and to you, but get him back to the UK. The United States is no place for someone with serious mental illness. We don't have a national health program, we allow everyone access to guns, and we have heavily armed, aggressive, fearful police officers who, when confronted by someone like your son, are likely to kill him. This is a dark portrait of my nation, but it's accurate.
301
Sage advice.
6
Possibly, not sure the idealistic UK healthcare system will be the answer. Yes it is free, but the stigma is attached in the U.K.as much as here, and the results are similar - drug management. I speak from experience.
1
Start making plans for your son's future now. Check out supervised living, see what programs exist to help him before you and your spouse cannot care for him due to old age or whatever the vagaries of life visit upon you. Involve the people in your community who you think will understand because you and he will need friends and confidantes who will watch out for your well being and that of your son's. Never underestimate the ability of others to manipulate situations in ways that make your son look like the guilty party. I know, my brother is autistic.
However much it worries you, get your son to be as independent as possible. If he's learned how to drive let him and tell him to keep his license current. If he's in college and can still handle the work, let him. Try not to yell at him in extreme anger. It won't help either of you. Let him know you're angry and why. If he lets you, hug him. Tell him you love him. If he no longer picks up on social cues, explain them to him again. It's going to be hard. Neither of you asked for this but you will have to cope with it. Talk to your friends and family. And never ever feel that it's your fault. It's not.
However much it worries you, get your son to be as independent as possible. If he's learned how to drive let him and tell him to keep his license current. If he's in college and can still handle the work, let him. Try not to yell at him in extreme anger. It won't help either of you. Let him know you're angry and why. If he lets you, hug him. Tell him you love him. If he no longer picks up on social cues, explain them to him again. It's going to be hard. Neither of you asked for this but you will have to cope with it. Talk to your friends and family. And never ever feel that it's your fault. It's not.
129
Seems like you're assuming this is a worst-case scenario situation, and we don't know that is the case.
Families who have had to deal with schizophrenia always seem to be walking on eggshells for the rest of their lives. Medications have significantly advanced during the decades but the uncertainly creates tremendous anxiety for all family members.
95
Not only schizophrenia. So many mental illnesses cause family members to live with the relentless "eggshells" feeling. Or, as I have often felt, "that strolling-through-a-minefield-feeling".
8
Well said! I am still walking on eggshells...25 years after my mother was hospitalized. It shaped my character more than anything: always expecting something to kick off.
2
I'd like to know the denouement of this story. I know of a 13-year-old boy w/ an even more alarming diagnosis who is a danger to himself & others & whose parents have been unable to find suitable long-term residential care for him despite a year's worth of strenuous research. The US falls very short on resources for people such as these.
1