“Alone Together”: Mental Illness and Covid-19

(originally published in the Times of Israel; reprinted here with permission)

As I write this, the world is turned on its head, still in the grip of the Covid-19 pandemic and its economic repercussions, which is to say that all humanity is still living with news reports of death and illness, and in a state of uncertainty and anxiety. Yet, while our lives are on hold, we must still simultaneously perform the rudimentary aspects of living. We still need to eat, so we shop for food, or have it delivered. When we must move about  in public  - only as “essential” (meaning that we only shop for food, or seek emergent medical care), we wear masks, stay away from one another, and carry bottles of hand sanitizer with us. Each time we venture out of our cocoons to come in contact with or speak with others – while socially distanced - we are conscious that we face the possibility of contracting a virus which has proven fatal and has taken the lives of people we know. It has proven to be unnerving.

I’ve never experienced a pandemic, so why, I ask myself, did I have a feeling of déjà vu? I couldn’t shake the nagging anxiety, though I am not anxious by nature. It felt both deeply personal and so palpable; it was a weight on my heart that wouldn’t leave. And, it felt so completely familiar.

I awoke one morning with the stunning realization that I had lived with the constant awareness of the “sword of Damocles” hanging over my head once before. I lived this life during the latter part of 2012, from the day I discovered my son’s near lifeless body after he attempted suicide the first time, on July 20^th, until the day of his death on December 16^th. It became my life the moment I acknowledged the reality and severity of his mental illness. The only difference between my personal experience of then and now is that these days I share my existential dread with all of humanity.

Fear and anxiety have hijacked our lives and have become the wallpaper of our minds as we cope with a socially distanced reality and await a vaccine. When we speak with friends, family, or strangers both near and far, the conversation inevitably turns to: the state of the world enmeshed in Covid-19, our feelings of heightened stress, our hope for a return to normal, and a review of the difficulties and uncertainty of the future. As the wife of a physician who works at a hospital I am often asked: What does your husband think? When does he think this will end? When we see friends in the distance while walking they ask him directly whether it is safe to visit with their elderly parents/children and grandchildren or have them over for holidays, about how it will be possible for schools to open, and when a vaccine might be developed. The questions are many, but they are singularly focused. It is all about when we can finally let our collective guard down and return to normalcy. There are no definite answers, but there is comfort in sharing the questions, thoughts, opinions, and information. It is as though the entire world has become a support group. In stark contrast, during the time between my first awareness of Jonathan’s illness and his death by suicide my family and I endured on our own, in secret and isolation, without support.

Reliving these painful emotions and feelings of helplessness and uncertainly in the context of Covid-19, I believe that not only do they correspond to those emotions experienced by parents of mentally ill children, but the need for communal support is similar as well. Sharing frustrations and anxiety with friends makes things somewhat easier to bear and we might even get some new information or ideas on how to cope. Though our situations are unique, we do not need to suffer alone in our emotions. We can be “alone together”. It’s my hope that we can achieve this same ability to reach out in support when dealing with mental illness. Sharing our humanity helps us all. As with Covid-19, every life might not be able to be saved, but we can heal ourselves and move forward.

The Ghosts of Purims Past - Honoring Jonathan's Memory

Originally published in Kveller; republished here with permission.

My kitchen was bedlam, resembling a “winter wonderland” scene, with flour on counters, cabinets, floor, and inside drawers. The delicious aroma of cookies filled the air. It was our annual “Roth Purim bake-a-thon,” a family tradition in which the four of us — my three children and I — baked cookies to give to friends and family.

We each had our own cookie assignment and, remarkably, much like dogs tend to resemble their owners, there seemed to be a poetic logic as to who chose which cookie to bake. Danielle, the oldest, tried a different cookie each year, usually a more subtly flavored delicacy — something sweet, but not cloyingly so. (“These are perfect and just the right amount of sweet,” she’d like to say.) That’s my Danielle, interested in trying new things, and just the right amount of sweet.

Nina had fallen in love with nutballs. A recipe retrieved from the Ahavath Torah School for Girls Little Balabustas cookbook — which randomly appeared in our mailbox one day — these were bite-size creations with walnuts and chocolate chips, dipped in confectioners’ sugar. You could easily pop them in your mouth — a whole cookie in one bite. She loved them so much that she often quadrupled the recipe in order to share them with her friends. (“Mom, don’t worry, they will all be gone before Pesach,” she’d say.) Lots of concentrated delight in one bite — that’s Nina.

Jonathan, the youngest, chose to make seven-layer cookies. This was a concoction that had graham cracker crumbs mixed with melted butter as the base, upon which layers of coconut, walnuts, chocolate chips, butterscotch chips, and condensed milk were added. This cookie was packed full of different and complementary flavors, so rich and delicious that one nibble had you panting for the next. (“Mom, these are the best,” he’d say. “Let’s make another tray so we can share them and also have them for ourselves.”) That was Jonathan, so richly complex, and so easy to love.

(My own assigned cookie, the almond cookie, was simple, and given the mayhem in the kitchen, I confess that “simple” was the operative word — though I hope that it doesn’t describe me!)

When we completed our cookies, we’d move on to the team experience: making hamantashen. I’d make the dough and roll it out; Jonathan would cut out the circles; Nina dropped dollops of filling onto the circles; and Danielle did the pinching into a triangle shape. A considerable amount of emotion went into these cookies: “You’re cutting out too few circles, Jonathan — you have to put them closer together,” or, “You’re putting in too much filling! I can’t close them well,” or, “Mom, do we have to do poppy seed? Nobody likes those but you.”

As each child left home for a gap year in Israel or college, I lost a baker, whose cookie became the responsibility of the remaining crew. Finally, once Jonathan left home, I was sure that the Roth baking tradition had run its course.

Not so, according to the my children. “Mom, you can’t stop!” I was instructed. “How can you break with tradition?” So, I baked. Working alone, there was no flour everywhere and no frenetic kitchen activity. It wasn’t quite fun but it was still joyous; just me, baking neatly and efficiently, and, then packing and shipping a package to each child, along with several for their friends.

Then the phone calls came: “Everyone loved the cookies, Mom. They are so good. I miss baking.” (Danielle and Nina said this; Jonathan confessed that he just loved the cookies, not the baking.)

The first Purim after Jonathan died, having taken his own life almost seven years ago, I thought that our cookie tradition would come to an end, that its inherent joy could not pierce the sadness of his passing. But, that first year, my daughters — who were each living independently — called to say she wanted to come home to bake with me once again. They arrived, and the three of us began to measure and mix. We were efficient and silent, and, in the end, we baked and packed our cookies. As in the past, we saved a few of each kind of cookie to sample. In turn, we bit into Jonathan’s seven-layer cookies, each of us inwardly noting our deep loss.

With Purim almost here this year, it is time to bake again. It is once again a solo act on my part, so, once again, I asked my daughters if this should be the year I finally let go of the tradition. Again, they encourage me to bake and mail out the “Roth mishloach manot packages.”

And so, yet again, our tradition carries on. This year’s packages, like the others, will include all of our traditional selections, including Jonathan’s seven-layer cookies. I have begun to understand the additional depth of meaning to our cookie tradition; it is our commemoration, our way of remembering Jonathan with sweetness. It is our special way to include him, in the absence of his physical presence, as we celebrate the holiday. Jonathan will remain part of our family and our tradition. May his memory be a blessing.

Hidden things - Mental Illness Stigma

(Originally published in Times of Israel; republished here with permission)

The hidden things

“You have to find out the hidden things.” That’s what a friend explained to me about the importance of ‘investigating’ the individual that one’s son or daughter is dating. This was his way of explaining why he and his wife called the rabbi of (and several people whom they knew in) the community of their son’s ‘almost fiancée.’ When I asked exactly what sort of facts, if uncovered, would cause them to persuade their son to sever the relationship, he demurred. “It could be anything,” he said.

“So, in other words, you wouldn’t allow your son to marry either of my daughters,” I responded. As the words left my mouth, his face fell. “No,” he said; “because that wasn’t hidden.” The unhidden fact under discussion was my son’s suicide. When our son, Jonathan died, my husband and I decided that we would be open about the cause of his death.  We had chosen not to hide it because we knew we would be unable to endure the pain and resulting isolation engendered with having to lie forever, or of having to always have an ‘outside face’ to the world. Nor would we mar our son’s memory by acting as though we were ashamed of an illness over which he had no control; it was bad enough that his and our secretiveness had, in our opinion, augmented his suffering during the time he struggled with mental illness.

Despite his feeble protest, my friend and I both knew that suicide and mental illness were the precise examples of his investigative focus. He couldn’t deny it. That was the last time that I spoke with this friend, approximately four years ago. It was simply too painful to actively continue our relationship.

My son had taken his own life about two years prior to this interaction. Through the time of our climb out of the abyss of deep grief, we had not socialized at all for the first two ensuing years. I avoided people, and had taken to doing as many errands as possible at times and in places that would reduce the possibility of running into familiar faces; I didn’t accept invitations to any events, social occasions, or even to a Shabbat or holiday meal with anyone but close family. It was too difficult and unnerving because all at once I might be reminded of Jonathan and my eyes might begin to tear. Or, someone might say something that, while not intentional, could be hurtful. So, when it came to starting to circulate “among the living” again, I took my time, knowing that I would eventually get there, but at my own pace.

This invitation to get together had come at a point when I was ready to push myself to rejoin the world socially and I felt safe with these people, who had always been dear friends. We had lived in the same neighborhood and been members of the same modern orthodox congregation, though perhaps they had recently veered slightly more toward the “yeshivish” end of the spectrum. I was, therefore, not prepared when I came face to face with the deep-seated stigma of mental illness, from which we had sheltered ourselves. It was there, even among our closest friends.

Almost six years after Jonathan’s death, I continue to be in contact with parents whose children struggle with mental illness. They call to ask for an opinion, advice, for a referral to a competent clinician, to check on the reputation of a particular clinician or program, and sometimes because their child is in crisis and they need a safe, non-judgmental place to emote. They are fearful of the reactions of others. At times, some have expressed the need to keep their situation secret, because they have other children who are as yet unmarried, and they fear that any potential stigma will get in the way of those children finding a spouse. The very day after experiencing this stigma with my friends, I counseled my daughters to reveal their brother’s cause of death as soon as possible when starting a new relationship. I had three reasons for making this request.  First, if they and their family history were going to be the subject of investigation, I believe it would be far better to be open and let this come up right away; if it was going to be a deal-killer it might as well happen sooner rather than later. Second, I didn’t want my daughters to be ashamed of their brother. And third, the litmus test goes both ways; I wanted each of my daughters to find a young man who was compassionate and kind and a response would provide insight into his character. While I am pleased to report that both of my daughters married wonderful young men, despite our having been open about their brother’s suicide, it grieves me that so many parents’ fear of stigma causes them to live isolated and secret lives. They are afraid to take a chance.

Years ago, I recall the same secretiveness applied to cancer. In those days, the mere word was uttered in hushed tones, or code words, at times in a foreign language. Many a “shidduch” was no doubt set aside because a family member had the dreaded disease, for fear that it was hereditary. Mental illness has sadly become today’s “cancer.” I can only wonder what additional illnesses are on the list for investigation. There are a host that might be included, for example: diabetes, heart disease, auto-immune diseases, allergies. Should ADD, ADHD, dyslexia, other learning disabilities, even a language delay also be included on such a checklist? There are so many more potential issues to consider – so many, in fact, that it may not be possible to find the “hidden” information on all of them. What of diseases that show up later in the lives of the parents or siblings? It is exhausting to ponder the vastness of imperfections in a human being, and I pray, that by offering this incomplete list, I am not giving anyone ideas for additional areas to “investigate.”

In this era of the discovery of all the details of the human genome the potential for disease is both completely before us and, at the same time, completely hidden. While we now can ascertain whether individuals have genes that predispose them to certain disorders, there are many other genes that may be protective, and still others that are a complete mystery. Put in another way, regardless of what we are able to discover about potential spouses and their families, the potential for endless disorders lies ahead for everyone, no matter how well they have been “vetted.”  While diseases can certainly have adverse impacts on life, they also frequently have treatments and cures available, and always with more on the horizon.

There is only one flaw that cannot readily be remediated by modern medicine and science - the flaw of poor character. Its symptoms are unkindness, lying, lack of integrity, and cheating, among others. If I were giving advice to parents seeking a mate for their child, or on approving one, I would advise them to spend their time trying to discern the true character of the young man or woman, and not what supposed malady they may possibly contract during their lifetime.

Having been married for 42 years, I would like to posit that my erstwhile friend’s search for “hidden things” missed the point and neglected both the reality of marriage and the development of a trusting relationship. What my husband and I always tried to help our children understand is that integrity, kindness, and excellence of character are the priorities upon which they should focus. Indeed, it is not a simple thing to ascertain the values and character of another individual. Attraction, the excitement that accompanies the early stage of a relationship, and the desire to be part of a couple can often cloud an objective evaluation. It is in helping to ascertain these vital qualities – the ones that endure for decades – that parents might be able to offer the most meaningful assistance to their sons and daughters.  

Where Was My “Ruth”? Mental Illness Isn't 'Other People'

(Originally published in "Times of Israel". Republished here with permission.)

Had you asked me five years ago, I would’ve said that I didn’t personally know anyone who struggled with mental illness. Those days, my only awareness of this scourge occurred when I encountered those unfortunate souls who lived in the subways. Mental illness seemed an issue that had absolutely nothing to do with me.

On Friday, July 20, 2012, I learned, in fact, that mental illness and I had a very close relationship when I found my son almost dead, having attempted to take his own life. At that time I believed this happened without any warning.

But, in fact, there had been warnings. There had been some acts of poor judgment that had started materializing in the past year, and certain times when Jonathan seemed to behave out of character completely, seemed so deeply sad for no apparent reason. It seemed bizarre, but, other than during these aberrant stints, he was so “normal”, respectful, helpful, introspective and analytical, affectionate, and I assumed that these ups and downs were the expected behavior pattern of a 20 year old adolescent boy. It wasn’t fun, but it seemed standard. This was the form and depth of our denial.

There was no friend in whom to confide, even in my moments of worry. When I disclosed some behaviors to certain friends who had adolescent sons, they didn’t express alarm or suggest anything might be awry. It was easy to stay blind.

Once the truth pounded our heads with a club and we needed to find a way to help him, we still had no idea where to turn for information or support. We were utterly alone and isolated by stigma and ignorance. As far as we were aware, our terrible problem was unique in our community. Who would have the knowledge to guide us even if we were willing to reach out?  

Over these past four years, I have been contacted by many whose lives have been disrupted by mental illness. Those who suffer themselves contact me to understand their parents better. They speak with me about their own behavior and seek words of comfort that they wish they could hear from their parents. Parents contact me to ask for referrals for treatment. Or, they present their child’s behavior and ask if it is possible that these are signs of mental illness. They almost always deny when I tell them that they might consider that their child has an illness; I recognize the language of denial. Sometimes, they contact me to talk about how they feel. Siblings contact me to ask for ideas on how to help their parents deal with their brother’s/sister’s illness, which is tragically destroying the family. They ask how they can help their parents “face” the illness and the steps they can take to survive emotionally. At the end of every contact, I am thanked profusely, and often tearfully. 

With this writing, though there may still be ignorance, I encourage people to reach out to their friends if they suspect their child is ill, or if they are already aware of their child’s illness. I appreciate that this is difficult to do in a society that stigmatizes mental illness.

To those who need help I would say: The stigma is slowly decreasing and will eventually go away; don’t wait until it’s gone. Don’t wait, because there is too much at stake and you might not have the luxury of time, as I didn’t. Don’t stop with one friend; that “pearl of wisdom” that you need may reside with the next friend, or the next.  Don’t be afraid of being judged. Even if your friend is not able to offer advice, you may get the support so essential to help you soldier on.

I had no “Ruth” to whom to turn because of our own, and others’, fear of stigma. Now, with deeper understanding, I am gratified to be able to help others; it won’t bring Jonathan back to us, but it is the only thing that brings some measure of healing. People call me courageous as a result. That adjective isn’t accurate; I simply envision myself in a “post-judgmental” and “de-stigmatized” world, and act accordingly.

To those who need the support or can offer it, I promise that in taking this approach you won’t be sorry. You may discover that others share these very same issues; you may decide to check your assumptions. Your burden may be lessened. For certain, you will be helped, and you will help someone else, and with that you will have made an enormous difference.

On Sadness, Happiness, and Billy Joel

On Sadness, Happiness, and Billy Joel

(“This originally appeared on Modern Loss. Republished here with permission.")

I remember the first time I was able to feel happiness after my son took his own life in December of 2012. It was on May 28, 2015, at a Billy Joel concert. My family – what was left of it – had planned this as a birthday gift, knowing how much I loved the music. Before this day I could smile, function, and even laugh, but, I was a fraud.  In the aftermath of Jonathan’s death, life had taken on a “Stepford Wife” quality, where chores got done, meals prepared, conversations had, work organized, and so on. But, my emotional range no longer extended to exuberance or happiness; I had learned to navigate within strict limits, as though moving along a narrow path, not able, or even desiring, to wander off of it. Before I got these tickets, I “managed to live”.  Now, faced with them, I couldn’t imagine this future experience within my current boundaries. Would I be able to enjoy this gift with my family?

I left for the concert anxiously begging myself to be able to fully enjoy this time with my daughters and husband. Once there, as the lights dimmed I began to take my first tremulous steps along a broader trail. I acted my part like all the other Billy-lovers; I swayed, danced and sang along, and bonded with the couple behind me who also knew all the lyrics. Slowly, I felt the borders of my emotional road widen, and observed myself as if from an invisible perch, sharing joy with my daughters and husband, smiles and laughter passing between us. We were united in a shared moment of fun and happiness, immersed in the work of creating a new memory for our abridged, reconstituted family.

The loss of Jonathan had eradicated me, as I used to be. Even though I participated in the functions of life, I believed that no one was able to discern that I wasn’t wholly present, not even my family. But, if this was true, then why did I feel the continuous tug of my daughters’ need? Why did my husband’s eyes follow my gaze during moments of silence? Why did it feel as though they kept searching for me?

They were relentless. They asked my opinions, sought my advice, and leaned on me for comfort, guidance and support as they always had. They studied my expressions, my voice, and my intonations for the strength they needed to carry on with their lives. It was, at times, unbearable. In my head I screamed and wondered how they could turn to me for strength when I no longer had any left to give them. Was it merely force of habit? They reached out for direction from me, a soul lost with no compass and no GPS. They still believed that I had answers to their questions about life, and words of wisdom to help them make sense of the world.

They had purchased tickets to see Billy Joel. “Be happy with us! Come back to us. We still need you.” With these tickets they implored me to return to them, to not let them be lost from me. My family called to my spirit, which had become frozen in a place of sadness. Through their love, I had become unfrozen at a concert, where I learned to carry happiness and sadness together in my heart, side by side.

There will be no patching up and being whole again and there will be no happy ending. There can only be the back and forth battle between happiness and sadness, always seeking to arrive at a cease-fire, albeit temporary. But, there can also be movement towards a new configuration, and perhaps like the creation of a new mosaic from shards of shattered porcelain, while it can’t ever be the same as it was, it can still be beautiful. My family called me back with a birthday gift. Billy Joel had saved me.

An Open Letter to Reid Hastings, CEO of Netflix, about "Thirteen Reasons Why"

Mr. Reid Hastings

CEO Netflix

100 Winchester Circle

Los Gatos, CA 95032

May 8, 2017

Dear Mr. Hastings:

I am sure that you have heard from many people requesting that you remove the recently aired Netflix program, “Thirteen Reasons Why” from your roster of programs. I would like to add my name to those making this request.

Unfortunately, even as I write this to you, I know that my appeal to you may be futile and may be ignored, as I just learned this morning that not only will Netflix not remove this program, but that a second season is now planned as well. To hear this is very painful for me personally, and for many other parents of children/adolescents with mental illness. There are so many of us out there, and many of us are Netflix customers.

Recently, I watched the program to see what the whole brouhaha was about, and as the mother of a child who took his own life, I can promise you that you have sent a very dangerous message out into the world. Your "Hannah" is a hero; she records her tapes and 'sacrifices' her life, with the result that the other characters evolve or get their just desserts. For example, as a result of listening to the tapes “Jessica” finally deals with her rape, “Bryce” finally is outed as a rapist, “Sherry” faces up to her responsibility in a crime, etc. - all because of Hannah’s suicide and how she approached it. This program has been, and will be watched by kids who are struggling with mental illness; they will find glory and nobility in suicide. Even without the overlay of mental illness, this is a dangerous message to send to adolescents; but in particular, for those who suffer from a mental illness, whether it is known to them and their parents, or unknown, it can trigger suicide, by feeding into a desire to make sure their lives “count for something” – something that they doubt to the depth of their being.  It will make them believe that taking their own lives is a reasonable option when they are in emotional pain. I do not exaggerate by saying that this prospect is horrifying. I do not exaggerate by saying that this program will cause deaths.

May I also add that hiding behind the excuse that the program will begin a conversation about important issues like bullying, adolescent date rape, the need for parental supervision, drinking and drug abuse, etc., is at best perverse and misguided when put in the context of the fact that it glorifies the taking of one’s own life. Perhaps, it is the case that the program is starting a discourse, but, the program itself has been seen, and can be seen by vulnerable people who will no doubt be affected by it. I repeat for emphasis, and I have no doubt, as terrifying as it is, that, unfortunately “Thirteen Reasons Why” will cause some young people to take their own lives. That's the problem; can you understand that? Is there no better way to start a discourse and bring important issues to the fore, without encouraging or seemingly justifying suicide or presenting it as a viable option for those in emotional pain?  

The results of a risk-benefit analysis are obvious……is even a lot of discourse worth the single death of a suffering child, who gets this horrible message?

I understand that Netflix is a for-profit corporation and you have an obligation to your investors. Of course, the company has the right to act in a manner that produces a profit. I am certain that the ratings of this engaging program are rewarding and that it is so difficult to forego this. But, those parents who “get it”, and I, appeal to you to do the right thing, and to not endanger any more of our children with this irresponsible action.

Do you think that among your shareholders or employees that none has a child who is suffering from a mental illness, or even if not, that none has an impressionable adolescent that is experiencing typical adolescent angst who could be affected by this dangerous program? I would bet that there are many.

Even if you are unmoved by the potential adverse impact of your program, aren’t you, as a prudent executive concerned that Netflix could be sued over this? Is it possible that the parents of a child who takes his/her own life, and copies “Hannah’s” tape idea, could sue you? Or, would you view this as simply more PR? (Of course, no PR is bad PR, right?) 

This is a tradeoff, a test of integrity, if you will, for Netflix. Are the ratings worth the death of a child and the devastation of a family?  What will be Netflix’s answer to this question?

I am under no illusion that this letter will change your mind, but I write it because I hope that maybe it will.

Thank you,

  

Ruth Tepler Roth

Originally published in The Jewish Week; republished here with permission.

Telling the truth about mental illness

Our son’s illness, when we finally became aware of it, was a magnitude 8 earthquake in our lives that came without any warning. It was a calm and beautiful day in July when I found him the first time he tried to end his life. The mechanics of saving him, calling 911, unlocking and opening the door for the rescue team, calling my husband, and following Jonathan’s ambulance to the hospital all happened on autopilot, step 1, step 2, step 3, and so on. The moments in between and following his arrival at the hospital crawled as I waited to hear whether my son would live and with what possible damage, and wondered in complete ignorance and fear what the next steps would be. How could this possibly be happening, how it was possible that I, who had spent countless hours talking with Jonathan, didn’t realize the trouble he was in?

He made it through that episode alive and with minimal impairment to his body. Once out of the hospital he appeared to be the same Jonathan that he always was: kind, loving, caring, bright, engaging, witty. He begged us not to tell anyone what happened – not that he needed to. Of course we would keep this a secret, for so many reasons. We didn’t want to have our son labeled ‘crazy’; we didn’t want him to endure any comments or knowing glances from well-meaning people. We were private people who never revealed our innermost issues to anyone outside our family. And we certainly didn’t want our son to feel exposed.

Without realizing it, by keeping this secret, we validated Jonathan’s feeling of shame. Not only would he have to battle his illness, he would bear the burden of shame about it as well. From this point on, our family would have to present an outside face to the world that did not represent our inner reality. We didn’t comprehend the gargantuan weight we would assume with this decision. Would we have acted the same way had Jonathan been diagnosed with cancer, gastrointestinal illness, severe cardiac illness, or diabetes? Absolutely not — we would never have hidden any of those illnesses. Ask me now and I will tell you that I wish I had shouted it from the rooftop, done anything, taken out an ad in The New York Times: “My son has a devastating mental illness. Can someone, anyone, offer me some advice to save his life?” Yes, I would have gone that far.

Five months later I found Jonathan again — this time too late. I knew the moment I saw him, my eyes frozen on him, that his body was lifeless, but we nonetheless went through with the rescue attempt, hoping in vain that we could deny reality. Again, time raced and crawled, but this time, that space was filled with planning our son’s funeral. In the midst of our turmoil and grief, my husband and I conferred — should we tell the truth about Jonathan’s death? Having lived with the pain of isolation for the past five months, we decided to be open about Jonathan’s having taken his own life. This way, our friends could comfort us appropriately, and more important, we would no longer have to bear the burden of living with a lie. It was the right decision for us.

Since then, I have been contacted by people from all over. Either their children are struggling with mental illness, or they are new in their grief for a child who has taken his or her own life. Sometimes they are seeking advice and guidance. More often, they want to share their thoughts with someone who they know can understand. Many had been secretive about the cause of their own loved one’s death. They told only those closest to them, but not others. They related to me that living with the truth hidden away had exacted a terrible toll on them, and they wished that they could turn the clock back. They have since slowly shared the truth with people as time has passed, but regret not having unburdened themselves from the start.

I have also been contacted by parents whose children had taken their own lives - mere hours after the horrible event. I was sought out by complete strangers who had heard of me and gotten my contact information from someone who knew me. They reached out to me because they knew that having “been there,” I might be able to help them navigate their terrifying new reality. While I can’t give advice — we humans are all so different in our coping mechanisms and our needs — I have only ever shared our experience: we were open about our son’s having taken his own life. That openness has helped us to heal and face life more honestly, and as whole people without a corrosive secret. I explain that being open allowed our friends to console us with the knowledge and proper tools to respond, and that we were, as a direct result, spared the ordeal of wearing a mask for the world.

It now occurs to me that there can be another equally vital benefit to sharing the truth about this kind of loss, a development I pray will come to pass. Perhaps this openness after our loved ones have lost their lives would eventually be able to work its way back to the source, to conquer the entire stigma of mental illness in the first place.

My son suffered the equivalent of advanced cancer — just as some cancers are incurable, so too was his illness. My son suffered from a chronic disease that would never leave him, just like diabetes, heart disease, arthritis, or multiple sclerosis. Had he lived, it would have had to be monitored and managed forever. There were no MRIs, CT scans, echocardiograms, X-rays, blood tests, or PET scans to diagnose, to localize the ‘tumor’ or lesion. There were no objective treatment regimens or research protocols to test on him. He fought valiantly and he suffered tremendously. Medicine failed him because mental illness doesn’t get the same respect as other physical illnesses, even as mental illness is just as legitimate a disease. Finally, because his illness was not obvious and kept a secret, our family received no extra kindness — even though we all could have benefited from it.

My husband and I are not unsophisticated people, but at the time when it was critical for us to be our son’s advocates we were shell-shocked and ignorant.  While I try not to play the “should have” game, I think it is instructive to play out the scenario that might have taken place had we been open about Jonathan’s illness and suicide attempt. When friends asked what had happened, we could have said something like: “We were completely unaware, but Jonathan is suffering from a terrible mental illness and he tried to take his own life, and we are unsure of what to do to help him.” I’m sure that this news would have spread. Perhaps a knowledgeable person, someone with experience in this area, would have contacted us to give us advice and guidance. Just maybe, as a result, we would have obtained a more accurate diagnosis or more effective treatment. There is no guarantee that the outcome would have been any different; still, I believe that with additional knowledge the chance for a better outcome increases.

Jonathan may have been upset with this, but he might also have felt unburdened and able to speak openly with his friends about his illness. Perhaps, a peer with a similar illness might have contacted him to let him know that he was not alone in his struggle. This would have helped Jonathan avoid the pain of isolation. He would have felt supported and I am certain that this alone would have helped him.  

It is unfortunate that even now, as I continue to be contacted by parents whose children are struggling with mental illness, they ask me to keep their secret. Of course, I understand their concerns and honor their request. I wish things were different because it is surely time for us all to be open about mental illness, a disease like any other, in the same way we are open about all other illnesses with which we struggle.

Notwithstanding the opportunity to reach for a better outcome, there was no need for Jonathan, or for us, his parents, to live in shame, and certainly no benefit in living with the weight of such a lie. Those months we spent pretending things were fine were exhausting and excruciating because of the huge expenditure of energy required to keep up our façade and the isolation that became our existence. We learned that lesson only after Jonathan died, and that has made an enormous difference in our ability to continue living meaningful lives. It is my hope that by sharing these innermost thoughts about this very painful event in my life I will help others to be open about mental illness. It requires courage, but it is ultimately healing.