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.
This week, social media has been abuzz with two “holiday” issues so far: the Starbucks Cup ( and there’s not much left to say) and a sweater still being sold by Target which amusingly ( to their buyers, I suppose) calls O.C.D. “Obsessive Christmas Disorder.”
Mental Health Advocates are up in arms about this “joke”, which not only trivializes a serious and sometimes debilitating condition, but in doing so spreads misunderstanding and stigma. Target is refusing to remove the sweater from its racks, and its supporters say “oh, get a life, it’s just a harmless joke.”
Wow. John Oliver just summed up the problems with our mental health system in 11 minutes and 54 seconds – with plenty of room for punchlines as well. I know – seems like something that isn’t humorous. But this segment provides more respect for mental health issues than so many others I’ve seen. Well-placed humor can do that.
Watch it here:
His opening statement, like all the facts in this comedy-in-truth piece, is correct:
“It seems there is nothing like a mass shooting to suddenly spark political interest in mental health.”
Guilty as charged. My last post was, yes, sparked by yet another act of violence that I suspected would eventually point back to an unaddressed mental health problem in the shooter (and lack of support for his family). After receiving 2 comments which were too extreme to approve, I almost deleted the post today. It seems to have sparked stigma and judgment instead of the empathy and constructive outrage I had hoped to inspire. But I will let it remain in this thread, because while I myself may have jumped the gun on “judging” this shooter with expectations that attention should have been paid to his mental health way before a crisis, I also know that such judgment harms people like my son, who lives in fear that people will find out he has been diagnosed with schizophrenia. (for the record, his name and identifiable facts have been changed in the book and in my posts, with his permission to tell the story that way) Continue reading Thank You, John Oliver. And I apologize.→
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.
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.
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.
I love hearing from you, dear readers. Thank you for your e-mails, your comments, and your advocacy – RK
It took ten years for us to find a medication regime that not only works to help manage the symptoms of my son Ben’s schizophrenia, but that he is willing to take consistently. Ten years. Three of those have taken place after where our book, Ben Behind His Voices, leaves off – in what one reader calls “open-ended hope.” At that time, Spring of 2011, Ben was in a group home, stable for long enough to begin to piece his life back together, but still finding any possible opportunity to “cheek” his meds. He hated taking them, didn’t think he needed them, was discouraged by the side effects.
Finally, though, a few months after the book was published, Ben had a relapse (see Revolving Door post) and it took a lot of teamwork to get him back on the meds that work – teamwork that included Ben himself, and that’s why it was effective.
What helped Ben to agree? There is a different form of one of his meds that was much easier for Ben to swallow, literally, and that he swears has no side effects. This is a liquid suspension that has to be created by the pharmacist. Does it have fewer side effects? Who knows? But Ben believes that it does, and that’s what matters. He felt like – and was/is – a part of the decision that affects his life every day. The empowerment is definitely a contributing factor in Ben’s adherence to his medication regime.
And now, the main medication that Ben takes is no longer covered by Medicare. At least not in the formulation that Ben is willing to take, in the formulation that he can tolerate. In order to save money, they will not cover the extra ingredients needed to create the liquid version. Pills do not work. He cannot take them, physically or emotionally. Without this specific form of his meds, Ben could lose every single thing he has fought for so long to achieve. His job. His social life. His car. Continue reading The Stupidity of Medicare: Saving Pennies, Risking Lives in Mental Health Care→
(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:
Ben continues to take college courses, 6 credits at a time.
He lives at home with us, and pays rent. (this after a disastrous housing change from the group home)
He has a JOB! He is a waiter in a chain restaurant, and absolutely loves it. He is often in the top three for tip-earning, and has often been asked to stay and supervise the closing process. Yes, amazing.
Although he had a roommate here for awhile, that ended badly (with the roommate’s addiction and connected behaviors) – but Ben has managed to salvage the start of an actual social life now. One step at a time.
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.