Wednesday, December 5, 2018

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 fiancĂ©e.’ 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.  

Wednesday, June 20, 2018

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.


Thursday, May 31, 2018

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.