My Journey Through My Daughter’s Madness, My Research, and My Book

Elahe Hessamfar
41
688

My precious daughter, Helia, was diagnosed with “schizophrenia” fourteen years ago at age of twenty-three. Her illness was sudden and shocking to all who knew her. Helia had a good life by all worldly standards. She was stunningly beautiful, with a kind and sweet personality. She had recently graduated from one of the country’s top universities. She had a good job and had recently been promoted. She lived in NYC, the city she loved, was about to be engaged to the man she deeply loved, and was very involved in her local church. She was a devout Christian who had had a major conversion experience while she was in college, and whose life was centered on her faith in God.

Those created with an unusual sense of perception and intense sensitivity can feel the pain and the joy around them in an immeasurable way. Their antennas receive “frequencies” that the “normal” mind does not have the capacity to access. When triggered, their sensitive souls can be pushed to cross over to other realms not comprehensible to most of us. Some argue that they have a different biology; but undoubtedly they have a different spirit: one that can love immensely and can easily be shattered by pain due to overwhelming tenderness. Helia is such a person.

I, on the other hand, was a high-flying corporate executive in those days, a marginal Christian, and my life was focused on my career. Our family looked great from outside. In many ways we were the envy of everyone around us. We had everything that everyone else dreamed of: a beautiful family, wealth, health, successful careers, wonderful kids, powerful friends, etc. That is why Helia’s Illness was absolutely incomprehensible to us. But we were blind to our own flaws. Like all other families, it took us a crisis and some sobering self-assessment to realize the dysfunctionality that had ruled us so pervasively. We were all living for ourselves, and could see no wrong with our life style.

“How could something like that happen to us?” we asked. And foolishly enough, we thought that with all the resources we had at our disposal and all the important people we knew, we could overcome this problem easily. We imagined there was no treatment that we could not buy with our money, no famous doctor that we could not hire! I even knew people in management ranks of famous pharmaceutical companies. It was as easy as talking to them to get insights into the research they were doing before the rest of the world.

How foolish of me. How naïve I was in those days. God was about to shake me out of my stupor!

And so I embarked on the darkest journey of my life, one for which neither I nor my husband were prepared. I soon found out that there was no one who could help us. The psychiatrists, even the more sympathetic ones, were not making sense to me. I was coming from the business world and I was not used to accepting superficial answers. They could not tell me what was wrong with Helia and why this had happened to her. They could not answer my challenging questions about the scientific research in the field. The best doctors, the honest ones, would tell me: “We really don’t know what this is, but we are sure that something is wrong with her brain.” But why? “Why are you so sure that it is her brain?” I asked. Their response was, “because it can’t be anything else.”

And that is exactly where the problem lay. They could not get out of the box that they were forced into by their guild. Biological psychiatry, in my opinion, suffers from a flawed and reductionist conception of how the human mind works and what might be needed to help it to function optimally when it is not doing so. Thus, the main tool in psychiatrists’ hands is medication, which does the most destructive thing of all: it silences the suffering patient so she cannot fully voice what she is trying to tell the people around her. Sure, the medication is typically given with the good intention of minimizing the misery of the sufferer. However, that is how recovery is blocked and the sufferer becomes a chronic patient for life.

For recovery to be attainable, the voice of the illness must be heard. Human beings are not random byproducts of physical and chemical operations, and what we call madness is an important God-given human phenomenon with a voice that needs to be heard. The cure is hidden within the illness and starts with the madness itself. It is only after the illness has fulfilled its purpose that the person can return to sanity.

The question is: “How can we understand the natural progression of the illness if we never allow it to progress naturally?” Our conception of people with “schizophrenia” is filtered by how the medications shape their personalities, image, and behavior. Medicated, we lose these people, their true selves as created by God. In our pursuit of removing what is bothersome, difficult, and challenging, we lose the opportunity to unravel one of the greatest mysteries of being human. What do we gain in return? Possibly a sense of false security!

Helia was given many diagnoses, from psychotic depression to bipolar disorder, to obsessive compulsive disorder, to schizoaffective disorder, and finally schizophrenia. She was put on all kinds of medications, and was hospitalized forcibly several times. But nothing was helping her. She was spiraling into the abyss of darkness, deeper and deeper every day. This downward spiral continued until she became catatonic.

There is not enough space in this blog to recount the mistakes that both the mental healthcare professionals and our family made on this journey. After so many trials and errors, I was convinced that soon I would lose Helia if I continued on the same path. Life was confusing and nothing made sense. I had lost control completely and I was losing my precious daughter. She was engulfed in darkness and I could not find hope anywhere I turned. Even God was absent and I could not figure out why He had allowed such a consuming fire to destroy the life of one His own, a girl who worshipped Him sincerely.

I had to do something. I could not sit back and see our lives destroyed by forces of darkness. More importantly, by observing Helia’s behavior, I was convinced that this was not merely a brain disease, and that there was a lot more to this phenomenon than anybody around me understood. Theological and spiritual signs were written all over her language and her behavior. I believe that it is only by God’s grace that she is alive today.

That is when I, a marginal Christian, decided to go back to school and study Biblical Studies to see if I could figure this out from a totally fresh perspective. I wanted to get to know the God who had allowed this to happen and I wanted to understand the nature of His love and His wrath. Taking that step changed my life and that of those closest to me.

As I cared for Helia every day for years in the most awful and frightening conditions, as I cried to God on my knees, praying for a miracle, God sustained me, revealed Himself to me, and guided me through the journey that saved my family. I cannot describe in this short space all that went on in the intervening years. Caring for Helia taught me so much about this illness, way beyond what I could find in scientific papers, and the wooden categories of the Diagnostic Statistical Manual (DSM). Two years after stopping the medications, by God’s grace my prayers were finally answered and Helia finally came out of her catatonic state.

After I had finished my MA in Biblical Studies, for other’s sake I knew that I had to tell the world what I had learned. That is why I went through a PhD program to formalize all my research and document it for publication. My book, In the Fellowship of His Suffering: A Theological Interpretation of Mental Illness – A Focus on ”Schizophrenia”, is birthed out of my PhD thesis. It is based on my personal experience and on numerous theological, anthropological, social scientific, and psychiatric research findings. I hope that my book can make a dent in understanding this most mysterious and crushing human phenomenon of madness.

It is easy to speak up about human dignity but most of us fail when it comes to valuing the awkward, the disheveled, the confused, and the unclean—the mad.

My book is not primarily about my biographical journey, although it is heavily informed by it. The book is about a gift I found in Helia’s madness from my God, the God who loves the ugly, the marginalized, the poor and the persecuted, indeed the God who Himself became poor, abandoned, mocked, and crucified in Christ. Helia’s Journey opened my eyes to life in its deepest sense and changed not only my life, but the life of many around us.

41 COMMENTS

  1. Hi,

    Thank you for sharing your story as a mom…I am so glad to hear that your daughter is doing much better. I am curious if you ever tried an Open Dialogue approach with your her during her extreme experiences? This worked with my son last summer and he came through his extreme state after a few weeks…It was one of the most humbling, difficult times for me as a mom…. I am thankful that he is back on track and continues to be fine and seems to enjoy college. I understand how hard these experiences can be and my heart goes out to you as a mother.

    I also wonder if the traumatic hospitalizations and medical model treatments don’t worsen and create many of the problems that people experience. My hope is that we build more true, non medical model alternatives…such as
    Open Dialogue in the US.

    Best Wishes to you, your daughter and your family

  2. This sounds like a fascinating book, Elahe, and it’s one written by a woman who, “comes in the name of the Lord.” My best wishes to you with it.

    I, too, was one whose “illness was sudden and shocking to all who knew her. [I] had a good life by all worldly standards. [I] was [pretty enough], with a kind and sweet personality … [I] had a good job and had [often been] promoted. [I] lived in [Chicagoland, but previously NY], … [another] city [I love.] [I] was …[married to a] man [I] deeply loved, and was very involved in [my] local church. [I] was a devout Christian who had had a major conversion experience while [I was in my mid 30's], and whose life was centered on her faith in God.

    “Those created with an unusual sense of perception and intense sensitivity can feel the pain and the joy around them in an immeasurable way. Their antennas receive “frequencies” that the “normal” mind does not have the capacity to access. When triggered, their sensitive souls can be pushed to cross over to other realms not comprehensible to most of us. Some argue that they have a different biology; but undoubtedly they have a different spirit: one that can love immensely and can easily be shattered by pain due to overwhelming tenderness. [I, too, am] … such a person.

    “… And foolishly enough, we thought that with all the resources we had at our disposal and all the important people we knew, we could overcome this problem easily.” Neither my husband, nor I unfortunately, knew at the time that I was rendered senseless with psychiatric drugs because the psychiatric industry was actually in the business of covering up the sexual abuse of children for the mainstream religions and easily recognized iatrogenesis for the incompetent doctors. Now I understand the “dirty little secret of the two original educated professions” reason for the scientifically invalid psychiatric industry.

    “How foolish of me. How naïve I was in those days. God [did] … shake me out of my stupor!” And, unfortunately, our current too powerful psychiatric stigmatization “system” is about attacking as many well insured people with fictitious “mental illnesses” as possible, as well.

    I could continue to quote your wisdom, as it’s almost exactly what I also have learned. Rather than doing so I will send my prayers and best wishes to your daughter and family in your healing process.

    We truly do need to take away the power of those whose belief system is based upon no valid science, those who believe in the DSM, to force medicate the kind and decent Christians who are experiencing a “spiritual journey.”

  3. I look forward to reading your book.

    My 24 year old daughter, not God, has been my teacher ever since her first ‘break’ five years ago. The lesson has been how to remain hopeful in the face of powerlessness.

    I continue to be humbled by her ability to keep hope alive. Her psychiatric incarceration and institutionalization, the forced drugging, the restraints, the isolation, labeling, all of it is a type of crucifixion. Every day, she must perform mental and emotional gymnastics to be kind and ‘appropriate’. Every six months, while attempting to be true to her soul, she must verbally defend herself to psychiatric authorities who lay traps so they can justify the appropriateness of taking away her freedom. The meds make her sleepy, emotionally, flat, disassociated, lacking in desire, cause her hair to turn grey and fall out, and obstruct her bowels. She is injected monthly. She has given up trying to resist, as she once did years ago. But she has run away several times to ‘remember’ what it was like to live in the hope of freedom. We called the last AWOL a ‘holiday’. I thought it did her some good. Always she is caught and returned to the system. She is afraid to tell her psychiatrist about her side effects out of fear that more meds will be added to her cocktail. She doesn’t do well in therapy. Once she complained of being sad and they offered an SSRI. Once she complained about not being able to concentrate and they offered Riteral. Every time she runs away she is put on higher doses of anti-psychotic ‘medicine’. These things that are marketed as ‘anti psychotics’ are horribly misnamed. They aren’t addressing the root cause of her psychosis. They just make her worse. Her brain is impaired by them. We can only pray the damage to her brain by the ‘treatment’ isn’t permanent. Once day, we hope to get her to a sanctuary where she will have the option of safely titrating off them or at least be on a very low dose. She doesn’t believe anything she says will be taken seriously. Taking contrary positions to the medical authority is used as proof of her disease and lack of insight and justification for her continued commitment. I think our family would get better care for our daughter in a foreign country. We have discussed selling everything to move far away. My father, husband, and son are Veterans. They took an oath to protect our constitution. Our constitution doesn’t apply to people with psychiatric labels. Our society is very sick.

    • madmom it is encouraging to hear you speak out on your daughter’s behalf and sad to hear what she is having to go through under psychiatry. I am sorry that things are so tough for you and your family in this respect.

      As a mother of sons who have gone through the psychiatric system here in Scotland I can understand something of what you are going through. All the best, Chrys

  4. What a beautiful story of grace. Thank you for sharing your journey and wisdom.

    “Helia’s Journey opened my eyes to life in its deepest sense and changed not only my life, but the life of many around us.”

    Sounds like your daughter is the ‘family healer.’ Those through whom we face our greatest challenges are our guides to expanded awareness, our spirits. She is lucky to have you. My very best wishes for continued success.

  5. I am in tears after reading your story. We have lost two of our sons, ages 21 and 24, in the past year and a half (less than seven months apart) by suicide. They were both seeking professional help and on psychiatric medications. The oldest had developed epilepsy in college at age 18, and was on some heavy meds for seizures, which led to difficulty concentrating in college, so was prescribed meds for ADD to help him focus, and the combination of those led to “social anxiety” (who wouldn’t be anxious if you thought you might drop to the floor at any moment with a grand mal seizure?), so was given meds for that, and ultimately got laid off from his very good job as a computer whiz for the college (traveled to China, Kenya and Brazil with a team to try to help third world countries reduce their carbon emissions), and became depressed about that, and was given an anti-depressant. While switching from one anti-depressant to another, and not being closely monitored (his “therapist” does not even know he died…I have been too distraught to call him to tell him, but no phone calls, no letters checking in to see how he is doing, etc.), he overdosed on a combination of all his meds and alcohol.
    My youngest son had been struggling with anxiety so was on Xanax and was also using alcohol. He became depressed after the death of his brother and was put on about ten different anti-depressants to try to get help…moved to Seattle and was being switched from Paxil to Zoloft, using Xanax (still using alcohol!)to help with the unpleasant side effects, and jumped 300 feet from a cell phone tower. This was hours after sending us texts and beautiful photos of Seattle, saying how much he loved it there, and partying with friends.
    We have six children still living, ages 28 to 15, and they are all reeling from the loss of their brothers. My husband and I have been reading stacks of books on the subject of meds/suicide/mental illness, and are firmly in the camp that these drugs and most of the psychiatric/drug industry are, if not complicit, are at the very least turning a blind eye to the epidemic of harms resulting from these treatments, from the “bio-chemical, broken brain theory” which is increasingly discredited.
    We have been Christians for about 40 years and have tried to raise our children according to biblical principles (making many mistakes along the way because of our pride!), and we believe that the Church is the place where real, full healing can take place, but that the Church has abdicated its role in these matters, being convinced by the “industry” that it is their domain, that they are the true experts…that the Church trying to help in these matters would be akin to visiting your pastor for cancer/diabetes treatment, and would of course be irresponsible.
    The only place where we have had our views validated on this subject is in Dr. Seth Farber’s excellent books, “Eternal Day”and “Madness, Heresy and the Rumors of Angels”. He believes as you do that the “mentally ill” are those who are particularly sensitive to the real spiritual battles in the world around us, and are going through very important struggles which, if left unmedicated and provided real caring, compassionate listening and validation, can emerge with a deeper understanding of God and of life!
    Several of my kids have (on the advice of pastors!) gone for counseling, only to be offered medication, which they refused. I was told that we could do an “inpatient” facility for a few days for one of my kids, and I refused. Although it is scary to see the depths of their feelings and behavior during grief, Dr. Allen Frances states that the symptoms of grief mimic the symptoms of clinical depression, so why are we being medicalized and diagnosed? In order to get reimbursement from the insurance company, we had to have a “diagnosis code”, which I found out can follow us for the rest of our lives! According to them, two visits with daughter’s therapist to give him collateral information about the behavior I was concerned about earned me the DSM code of “Adjustment Disorder: Less than 3 months”! I am FURIOUS about this! Do they think it is strange that I am worried about my other children, and their potential for following in their brother’s footsteps into darkness and despair when studies have shown that suicide is very “contagious”, and occurs often in clusters? Yes, you betcha I’m having trouble adjusting to our new normal…our family splintering, relationships shattered, bitterness, strife, blaming, despair, etc. We are all functionally “bloody stumps” right now, in essence it is like having our skin stripped off, everything that touches us hurts, having a heightened sensitivity to comments from others, perceived judgement or loss of friends, etc., those who want to help but distance themselves because they are uncomfortable..etc. It is so hard to be a teen/young adult in this world anyway, without adding these complications.
    We have tried going to support groups for grief, but in almost every case there is a HUGE emphasis on the bio-chemical imbalance theory, and all the advice is to “get counseling”, get on meds to “fix” the problem, as of there is something wrong with us…forgive me, but I think if we were NOT devastated there would be something wrong with us! In one group the leader told us we may not mention God or religion because we might offend someone….I was so angry about this (believe me, I was not there to proselytize, but if I find comfort through my faith it would be good to be able to say that out loud. ) and decided that I would reach out to other moms who had lost their kids to suicide in a more intimate way…invited four of them over to my house for brunch, and they invited four others, so we had nine of us that day, and three more have asked to join us. We are all Christians and trying to sort this out through the eyes of our Christian faith.
    You are very inspiring to me, and I will keep you and your family in my prayers. I plan to purchase your book and share it with others who are like-minded. Thank you for your honest and open sharing of a very painful experience…it is for the healing of many of us! Forgive me for rambling so long…it is still very fresh and painful.

  6. I am reading your book and finding both your experience and struggles to be a message of hope for all who battle mental illness. It is a call to action, to love and to dig deeper. Thank you for sharing your life with such compassion. Yes, the body of Christ has to come out of it’s cage and embrace the afflicted as they cry out for it. I pray your work will start a love revolution founded on Christ.

  7. being made conformable to his death

    Summary
    Background

    Studies of schizophrenia by single photon emission computed tomography (SPECT) and positron emission tomography (PET) have shown both regional cerebral hyperperfusion and hypoperfusion. The aim of this study was to examine the inter-relations between regional cerebral blood flow (rCBF), psychopathology, and effects of neuroleptic therapy.

    Methods

    24 never-treated patients with acute schizophrenia were examined with hexamethyl-propyleneamine-oxime brain SPECT and assessed psychopathologically according to the positive and negative syndrome scale; they were studied again after neuroleptic treatment and psychopathological remission. rCBF values that deviated from those of 20 controls by more than 2 SD were regarded as abnormal.

    Findings

    Both hyperperfused and hypoperfused patterns were found among schizophrenia patients during acute illness. The seven positive symptoms on the symptom scale showed different correlations with rCBF: formal thought disorders and grandiosity correlated positively (and strongly) with bifrontal and bitemporal rCBF; delusions, hallucinations, and distrust correlated negatively (and strongly) with cingulate, left thalamic, left frontal, and left temporal rCBF. Stereotyped ideas as a negative symptom correlated negatively (and strongly) with left frontal, cingulate, left temporal, and left parietal rCBF. After neuroleptic treatment (and reduction of positive symptoms), only negative symptoms correlated exclusively with bifrontal, bitemporal, cingulate, basal ganglia, and thalamic hypoperfusion.

    Interpretation

    Different positive symptoms are accompanied by different rCBF values—some related to hyperperfusion, others to hypoperfusion. This finding may help to explain observed inconsistencies of perfusion patterns in drug-naïve schizophrenics.
    Dr Osama Sabri, MD, Ralf Erkwoh, Mathias Schreckenberger, MD, Ammar Owega, Prof Henning Sass, MD, Prof Udalrich Buell, MD
    The Lancet
    Oxford University Press

    The advances in modern medicine are mindboggling. Hoping Helia, you and all her loved ones continue to sense god in every leaf that trembles, in every grain of sand

    It is obvious why she must be so beautiful

  8. dear Elahe – i’ve just now read an excerpt of your book plus this article and all the comments in order to get an idea as to where you’re coming from in regard to yr daughter’s diagnosis of schizophrenia and all the horrors that have ensue as a result. and i’m left wondering … taking into account that Helia’s troubles began after a ‘major conversion experience’ and ‘an intense religious experience’, i’m surprised that there seems to be no mention at all of spiritual crisis or spiritual emergency or extreme states of consciousness – which are transpersonal psychology terms for the phenomena which so closely mimic the ‘symptoms’ of schizophrenia – visions, hallucinations, voices, being one with God, ecstatic states etc.

    i’ve quite possibly missed it – but did you not come across this phenomenon as an alternative explanation for your daughter’s experience and her subsequent, quite-possibly, more-than-likely MISdiagnosis of schizophrenia? thee is a vast amount of research in the field of transpersonal psychology, specifically by Stanislav and Christina Grof who originated the term, spiritual emergence/y. and there is now a DSM category ‘religious and spiritual problems’ as a result of transpersonal psychologists lobbying over many years.

    the major difference is knowing that a spiritual crisis is transient, not a biological illness, certainly not anything that’s incurable. as a transpersonal art therapist, i’ve attempted to introduce this phenomenon to various Christian ministers – with varying degrees of success.

    I wish you well and i thank you for your work – karen