After an article I wrote was published in the San Francisco Chronicle on November 7th entitled, “Coming clean about mental illness,” we received many heartfelt responses. One mother’s email to us was particularly poignant. She agreed to allow us to provide a portion of it here, as a guest post. We are grateful for her courage to share.
To see the original article to which she reponds, go to: (http://www.sfgate.com/opinion/openforum/article/Coming-clean-about-mental-illness-4962030.php)
On my son’s 25th birthday.
Today is my son’s 25th birthday.
Today is a sad reminder of what little impact I have had on this disease and how small I feel standing up to a most vicious bogeyman: mental illness. This day is a taunting gut check of the limitations even a mother, his most formidable defender, has in protecting a child from this illness.
What should be a happy day for my son and me is muddied with fear, anxiety, angst and mostly guilt— the worst kind of guilt— “Mother Guilt.” It’s a particularly profound kind of guilt, not because mothers like me feel responsible for our child’s illness (though that myth is hard for us to shake), but because mothers, by definition, are “fixers”. We identify needs, solve problems, make the right calls, do what needs to be done – often neglecting our own needs in the process —to protect our child and keep him safe.
I can honestly say I have tried everything and have not succeeded. My son still suffers from mental illness and I can’t fix it. I do not have a cure, a salve, nothing. From the outside, I appear to have failed as a mother, and yet, I have been working, strategizing, and hoping for 25 years, and this road feels endless.
Some days, I am hopeful about where he is, what I can and will do for my son, and even that I am here for him. Other days, there is gut-wrenching helplessness for not knowing what do for him, or how to prevent his self-harm. Parenting him is a rabbit hole of emotion: guilt, hope, sorrow, hope again, and a final re-birth of sadness. I have been told, “one cannot parent mental illness,” and that is supposed to make me feel better but it does not. Parenting, surviving, loving, and guiding a child with mental illness requires ineffable courage and strength I never before could have imagined I could muster.
My experience is too difficult to share with others, too upsetting to talk about, and it’s always a conversation downer. And though my son is always top of mind, I struggle to talk about it. I cannot bear judgment cast upon my mothering.
What birthday card is there for a young man whose mental health treatment has become infinitely more complex by his using substances to self-medicate his bipolar disorder that doctors now admit began in childhood?
No, there is no birthday card for my 25-year-old son who has lived with Tourette syndrome, a brain disorder that hijacked his body with compound tics at the age of three, his head rolling in circles and elbow jabbing at his side, my distraught boy telling me, “It’s not me! It’s my brain and it’s really making me angry!” What birthday card is there for a young man whose mental health treatment has become infinitely more complex by his using substances to self-medicate his bipolar disorder that doctors now admit began in childhood? At eighteen, he was finally diagnosed with bipolar but by then I had even less ability to help him. Because of the havoc that Tourette syndrome, bipolar disorder, and substance abuse wreaked on his brain, I have fewer tools now to teach him how to navigate the real world on his own, or develop the most basic life skills most men his age have acquired and then some.
I am not greedy. I don’t need an Ivy League graduate, a CEO, or President of anything. My accolades for him seem easy to achieve to most of us: he needs to survive the day, then the next one, functionally. I pray for simple things: his happiness, health, love, harmony, and peace, all of which continually elude us because my beautiful boy suffers from mental illness.
On his 25th birthday, I want to tell him how much I love him; that I am always here for him. But no mainstream sentiment expresses the complexities and depth of loving an adult child who lives with mental illness. The lives of adult children who live with addictions or brain disorders do not correspond in any way to the trajectory of most “normal” individuals, or the milestones for which they strive.
For mothers like me, birthdays are annual reminders of what once again has not been resolved, and may never be.
I occupy a front-row seat to his suffering, a season pass to his hardships and there are no time-outs. And while I am unwilling to leave this game, I desperately pray for a reprieve from his suffering, peace for him to rest. I long to see his infant face again, the one for which I possessed the magic to soothe with simple maternal nurturing. I long for simpler times when he found peace in the safety of my arms. In that sacred embrace, I vowed to protect him always. A commitment made by mother to child, a promise I have never broken. I know I am not alone but I can’t help but feel isolated and afraid for that baby I held 25 years ago today.
Parenting a mentally ill child is the hardest thing I have ever done. I love him more than anything in the world and would give everything to change his situation.
On his birthday, what I want to say is simply:
I will love you always, like you forever, and you will always be my baby. I love you my son. Happy Birthday.
As always, your comments are welcome:
*cake image courtesy of notmartha.com
A few days ago, I made a new friend who is a Vietnam veteran. He entered the grocery store with his service dog. Standing under fluorescent lights between a kiosk of wine bottles and neatly packaged red meat, we struck up a conversation—not about the weather, or the how well-behaved his dog is, though that did come up, but about mental illness. It does seem odd that a conversation with a stranger would go so personal, but this phenomenon has been happening to me with increasing frequency. And I feel honored.
For forty years, my friend, who I will call Mike to protect his privacy, lived with debilitating post-traumatic stress syndrome (PTSD). He’d had a few marriages that didn’t work out so well because his former spouses couldn’t understand what he was going through. He acknowledges, how could he expect another to ever really understand his nightmares? How can you translate the experience of witnessing a buddy, caring for another wounded buddy, fall over in an instant after a shot to the head?
Mike’s mental illness has impacted his ability to work and he has lived off disability and military pension. Life has been challenging. But on that afternoon a few days ago he showed little of the hard road he’s been on. My conversation with him was delightful, insightful, and warm.
What has helped him? When he finally got a diagnosis he was able to get more effective treatment. But like most individuals living with mental illness, it’s not a straight path. His doctor first demanded he quit using substances and then prescribed medications to address his PTSD and other symptoms. He tried several, but none of these worked. As Mike says, treatment for mental illness, “Is not a one-size-fits-all deal.” Mike later trained his own service dog, without whom, he says, he wouldn’t be able to have a conversation with another person in a grocery store. His vigilance and paranoia would be on overdrive. When he said this, I thought, what a shame this outgoing, friendly, kind soul would have been incapable of interacting with others, a person whose positive life force had, on that particular day, brought me hope for humanity.
Mike and I talked so long, and so honestly, that the grocery store workers joked about our reunion and such. On this Veteran’s Day, I will keep the blog relatively short and impart the lesson he had learned and seemed keen to share.
He emphasized how beneficial his dog, a constant companion, and his wife, who is a uniquely nurturing person, are to his recovery.
He told me that treatment for his PTSD was not going to reverse the illness because he’d lived too long without treatment. Treatment now enables him to continue learning coping skills. He emphasized how beneficial his dog, a constant companion, and his wife, who is a uniquely nurturing person, are to his recovery. His dog keeps him safe and in one case, kept him from getting chippy with a police officer out of concern over what would happen to the dog if he were cuffed and thrown into jail. Hey, I say, whatever it takes.
Mike is on the waiting list for a new PTSD program through the VA hospital but keeps getting bumped to make room for troops coming home from the war. “And that’s okay,” he says. “Because these guys have a better chance if they get treatment right away. I’m all for that. We know a lot more now than when I came home.”
And that’s a very good point, Mike. Let’s get the troops treatment as soon as possible to give them the best chance for recovery. That’s one way to honor our troops.
Thank you Mike, for your service.
A Note about the photo: While Ken Costich (shown in the above photograph) is not the man I met, he also lives with PTSD and is part of the US Army’s service dog program. You can read more about it at: http://www.army.mil/article/35297
As always, we welcome your comments: