This is excerpted from Chapter 28 of Ben Behind His Voices. Along with our story, I share guidelines with information to educate, support and help. Happy Imperfect Holidays!
My son’s life is a never-ending game of Jenga, carefully constructed by us all and always in danger of toppling – as pieces are removed by too many players jugging too many variables and way too little foresight and funding.
This month has been challenging. Five years after Ben Behind His Voices was released, we are living inside a constructed existence composed almost entirely of Jenga blocks. Ben has climbed his way to full-time employment as a restaurant server, and has even earned kudos on Yelp.
Recently one of his friends, a young man struggling with mental illness issues and also transgender transition, was reported missing (he has since been found, thank goodness) and his family was frantic. She drove to our home to ask for Ben’s help, any info he might share. In the course of our conversation, she revealed that her son had been prescribed medications for his anxiety and depression but had recently refused to take them – and soon after that disappeared. She told Ben that he was an “absolute inspiration” to her son because he takes his meds – and has held a job he loves for over two years.
What she hadn’t realized is this:
Sure, Ben takes his meds – but he still doesn’t think he needs them. He is “compliant” because it’s a house rule we enforce – by staying up til the wee hours of the morning (Ben helps close the restaurant 5 days a week) to supervise. Could he refuse? Sure. But we would then refuse to allow him to live with us.
I pray we never have to force this issue. We’ve done it before – it is risky and painful to all – and so Ben knows we mean what we say. But the whole “compliance” situation is a jenga block that always sticks out, just waiting to be pulled from the stack. It’s right here on the foundation level. If that one goes, the whole thing topples over.
But even with that foundation intact, each day there are other pieces that hold his life precariously together. This week, four were pulled out — and we hold our breath, as do so many families in similar circumstances, that the structure can still stand. Continue reading The Precarious Jenga Tower of Life with Mental Illness
One young man with schizophrenia makes the news this week because he attacked his parents with a rock. The Mom says “I am afraid of my own son now.” According to the article, their son was refusing the treatment and medication available to him from the Kentucky assertive community treatment program. The treatment was voluntary. The young man said “no thanks.” And nearly killed his parents.
My son, Ben, also diagnosed with schizophrenia (and a very severe case, I am told), gently lifts his baby niece out of her swing, sings a silly baby song to her and gets a huge smile from her in return. Then he showers, shaves, irons his shirt, and heads off to work. He has been a server at the same restaurant – full-time – for over two years.
In Ireland, a man is finally committed to a mental health facility – after killing his parents with an axe. This treatment comes, obviously, way too late.
My son’s phone constantly rings with texts from friends, who are trying to arrange a “game night” at home for
tomorrow evening. Now he has friends again – but it took years to rebuild relationships, after years lost to hospitalizations and periods of relapse. We hope he never again needs that level of help. If Ben continues with treatment, we may get our wish. But there is no guarantee when it comes to mental health. This we know, all too well.
Five years ago, right after my book Ben Behind his Voices was published, Ben went off his medication and went back into the hospital for the eighth time. It took seven weeks to engage his willingness to “go back on meds”, after which he moved back in with us – with strict rules to “follow psychiatrist instructions.” Why? There was no other way we’d allow him to live with us.
The truth is: treatment makes all the difference. That’s why we, Ben’s family, “require” it in order for him to live with us. And, yes, we supervise it – staying up until 1 or 2 AM five nights a week to do so. Because, without this, we might have to be frightened of our own son too. Instead, our biggest problems resemble those of parents raising a growing teen – messy bedroom, sloppy compliance with curfews, uneducated financial decisions – even though Ben is 34 years old. Not always fun, but we’ll take this level of challenge. It’s annoying at worst. With one in four families dealing with mental illness in a loved one, I know many who would give anything to have “problems” like ours instead of the stigma, guilt, helplessness, grief and fear they experience every day. Continue reading Treatment Pays Off in Schizophrenia, Even if “Unwanted”
I never wanted to be a helicopter parent. When my kids were younger, I often responded to their problems with a “mean teacher”, “unfair boss” or “fickle friend” with a well-rehearsed “wow, that must be tough. How are you going to handle it?” This was not easy, mid you; parents want to fix things. But I did my best, and the “hands off” approach usually yielded the best results in terms of self-sufficiency.
But when your child has a mental illness, all bets are off – especially in times of crisis. Although most of the laws in this country deny our family the right to “interfere” in my son’s life, we do it anyway. At least, whenever we can – if we feel we must.
Ben is 33 years old, and was diagnosed with severe paranoid schizophrenia at age 19, after years of chaos and uncertainty. We tried letting him “experience his own consequences” for years before that, with results that were ineffective at best, disastrous at worst.
If you live in our town, you might know Ben now as the best server in a local restaurant, where he has worked for nearly two years. He’s also the one presenting his latest poetry in community college Creative Writing class. You might see him at Starbucks, just hanging out with his morning coffee, or doing karaoke or bowling with friends. But, not that long ago, he’d have been the one wandering the streets, or the halls of the psychiatric unit at our local hospital – unreachable, glassy-eyed, talking to his voices.
How did he get from hospitalized to hired? I give Ben a good deal of the credit. Continue reading The “Interfering Family” and Mental Illness: Some Helicopters Save Lives
Another merciless, senseless shooting, this time in Oregon. Another troubled shooter with three names. As details of the life of Chris Harper Mercer emerge on news outlets, I expect, sooner or later, to find out what often is uncovered: undiagnosed and/or untreated mental illness symptoms. Duh. And a family left trying to “handle it” alone. Duh, again. Been there – am there. Except we got some education and support so we could try to help our son. We are among the very lucky families. At the moment. Continue reading Chris Harper Mercer: A Preventable Tragedy?
Three mothers with so much in common, we could form a club. Each raised one son and one daughter, through adolescence into young adulthood. Each loves her children with all her heart. And, sadly, each of our brilliant, happy, sweet sons began to change in their mid-teens, and were eventually diagnosed with schizophrenia. We have each written about our experiences, shared our stories so they might help others.
But our stories have taken three very different turns. Today, one of these mothers mourns the death of her son, who passed away in “individual housing” earlier this year. Another of us sits stoically in a courtroom as her son is being tried for shooting moviegoers in Aurora, Colorado. And I, the lucky one, get to hug my son as he heads off to work, in his car, filled with gas that he paid for himself. For today, yes, I am the lucky one.
My heart goes out to the other mothers, even though I have never met them. I only know them through their writings, but I feel their struggles, their pain, their guilt, their love. Anyone who lives with mental illness in their family knows that we live life with crossed fingers, and we fight with all our might to make the right decisions.
And it is far from easy. Continue reading Sons with Schizophrenia: A Tale of Three Mothers
Sometimes I open an e-mail from a reader that not only touches me, but teaches me…and these words, from the sibling of a man with schizophrenia, are in my heart forever. The author has granted permission to reprint his words here, for which I am so grateful – and hope you will feel the same way. I have changed the first names, and added some links, but otherwise this is, verbatim, what has re-inspired me today to continue to seek, and see, the strength courage and beauty in my son Ben. Thank you.
Dear Randye,I am writing to thank you for your strong and beautiful book Ben Behind His Voices. I did not want to read it. I borrowed it from a friend almost two years ago and have been walking past it since then. And I can’t exactly say it was light reading once I cracked it open. Ben’s story is so much like my brother John’s. But, with John now 54 and myself 58, it was high time to rewalk the path and get some new perspective. I simply cannot thank you enough for your clear and detailed depiction of your family’s journey.You do an especially fine job of explaining that tension between trying to help and trying to let be. Also, you truly help readers understand that realization that for a person with schizophrenia, life dreams and plans will need to undergo revision. As Robert Frost’s poem “The Ovenbird” reminds us, the question that needs continually to be asked, about all our lives, is, “What to make of a diminished thing?” One could view the question as pessimistic, but to ask it honestly is actually an exercise in wisdom and courage.Even though John cannot “compete” for standard definitions of success, he puts most of us to shame in a few specific areas. One is courage. A few Aprils ago I remarked to him on the phone what a gorgeous spring day it had been. He said yes, that he had been out too. He said that he had forced himself to let the bus home go on without him so he could sit out on a bench until the next bus came. “It was hard,” he said, “but I did it.” It was hard? To sit on a bench for 30 minutes on a beautiful spring day? It’s a reminder that, for John, facing the world most days takes the courage of a first responder running into a burning building. But as you so clearly point out, his heroism is not the type to garner honor, gratitude, or even acceptance.Yet I could speak of HIS acceptance of others, his sensitivity to those who are suffering, his spontaneous generosity.We talk on the phone a couple times a week. He lives about 90 minutes from me. Yesterday we spoke for about 20 minutes. With your words so fresh in my mind, I was somehow able to enjoy the conversation more deeply. It was one of those moments you talk about that should be cherished for the simple pleasure that it is. Your book did that for me.I am saying a prayer for Ben.
(repurposed from my final blogpost on “Mental Illness in the Family” on HealthyPlace.com)
Two things happened last month that stirred me to revisit an often-examined question:
Am I too involved in my son’s life? Have I “stolen his manhood and his rights” by insisting on treatment?
One reminder came in the form of a reader’s book review on Amazon.com forBen Behind His Voices, calling it a “Testament to Abuse of Power and Parental Authority,” the only one-star review in a sea of 5-star praise and gratitude. Clearly, a man with an agenda, so I didn’t take it too personally, but this is not the first time I’ve been called an over-involved parent. On the other hand, I’ve also been criticized by others for not “stopping” Ben from dropping out of high school, for “allowing” my son a period of homelessness in Idaho and “letting him fail” when he gained and then lost five different jobs after he returned.
And then there is — the question of “forcing” Ben to take medications to help restore balance to his brain. The second reminder came from a voice student of mine, who shared how well his son with schizophrenia was doing without meds, having “learned to recognize the voices and deal with them” instead. Of course, that’s wonderful. Some people, I understand, can do that — but often it takes all of their energy just to keep those voices at bay. And then there are those, like Be, who cannot, in a million years, manage the full-time job of keeping his inner thoughts (or voices, or whatever they are) quiet enough so that he can attend to the outside world. Elyn Saks clearly outlines her unsuccessful attempts to get off meds in her memoir The Center Cannot Hold; in our family, we have seen, all too frighteningly, what Ben’s life becomes when he doesn’t take his medication — wildly wandering, constantly mumbling, lost in his own world, relentlessly pacing, capable of lashing out. He is lost to us then and, I believe, to himself. Continue reading Encouraging Treatment: Loving Parent? or Cruel Dictator?
As we approach the third Anniversary of the publication of Ben Behind His Voices, the big question remains. How would Ben be doing without family support? Have there been any improvements in the system that failed my son, and our family, so many times in the past?
Want an update? If you missed it in an earlier post, here is the progress since the last page of the book (where Ben is still living in a group home, back in college classes, and doing some volunteer work). Many of the details are outlined in earlier posts (check category “How is Ben Doing Now?”), but here is the current picture, about which I am so grateful:
Still. All of this progress can go away in record time – and often has, in the past – if something interferes with the meds he takes.
Families like ours walk a tightrope, struggling to balance all the elements of progress when someone we love has a “neural difference.” And we cannot do it alone. So it really pisses me off when our competence creates laissez-faire among the people supposed to be our support.
1. Last Friday, I noticed we were almost out of Medication A (Ben takes 3 things). So I called the pharmacy to order more.
2.They could not place the order because they had not received paperwork from the case management team. So I called his case manager, and also sent an e-mail. No answer.
3. Had to wait until Monday for further action. (No one works on weekends). Didn’t think it would be an issue. Continue reading How Families Slip to the End of the Rope: Mental Health System Cracks