I wanted to post something today, a little bit of art that might reflect the bipolarness of my now. Not words. Words feel acidic and tiresome in my head.
But I couldn’t find anything that I haven’t posted before—heads popping open with weirdness, lonely figures wandering in Disconnect, wild jumbles of frantic images. So I had to make it.
It’s almost 4:00 now. I’ve been working on this card since 10:30 this morning. Bathroom breaks. Cat-watering breaks. Little else. I can feel that I’m hungry. I know I need to take a shower (it’s been a couple of days). But I look into this young girl’s face and fall into it. The original didn’t have sleep-deprived eyes. Those are mine.
I look at this young girl and feel her looking back. We know. We know the green monsters, and bitey teeth, and staring eyes, and nightmares that stick to our backs like tar. We hold ourselves very still, because the madness feels new even though we know it is not. We hold ourselves very still, because part of us believes a shift will come, a swing. We will travel to a different place on our spectrum that will also feel new, but is not.
She knows there really is no Fresh Madness, just forgetting the feel of the Old Madness. There are so many kinds, so many permutations. Our brains, so clever in their Cooking Arts, never use the same recipe twice. Or do they? We forget.
Words start to dissolve and puddle, the brain-acid bubbling.
Tired of writing memoir. Not just sick of writing about my mental illness, sick of living the same struggles day after day. Do not want to end my life. Far from suicidal. Just want to end both my symptoms and…
So I go to the dentist today for a cleaning and to have them look at my back tooth. Fun fun fun.
I feel so bummed out. I think it is finally settling into my soul that my middle one will leave for college in less than two weeks. I know I will miss her. I’ve been trying to avoid that fact but I will. And I’m anxious about how my relationship with my youngest will change. I don’t really know what to do with her. I’ll have a month with her before school starts and I’m at a bit of a loss what all to do.
I’m also a little freaked out about this tropical storm headed for us, I don’t want to start flashbacking to Katrina or anything weird like that. I’m trying to keep a handle on my anxiety about it but am not sure what I will do if we lose power or have a spinoff tornado or something like that.
Just pray for me and my family as we move through the next few weeks and see how things go. I know I will need them.
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.
Laura Pogliano called herself “lucky”, too, sharing her story The Fortunate Mother: Caring for a Son with Schizophrenia in USA Today in 2014. In it, she “feels lucky that she’s been able to hang in, lucky that Zac is not living in jail or under a bridge…even though ‘Twice a year, right in front of me, he disappears into psychosis, and there is very little left of who he is. Then medicine resurrects him for a few months, I have much of my child back, then he dies again.’ “
Later, she struggled with whether or not to let Zac get his own apartment. In a USA Today follow-up story, Laura says Zac had moved into an apartment near her home, and that she had tried to “protect her son without being overprotective.” Zac stopped communicating with her for a few days, and she had the same reaction as many parents who strive to allow independence with limits: “I asked myself, ‘How much do I baby him? If he’s with some friends, I don’t want to butt in.’ ”
Who hasn’t been there? I know I have. That balance between letting go and stepping in is a staple of parenting. In Laura’s case, the results were tragic: Zac was found dead in his apartment in January 2015. Her “luck” had run out…but the lack of respect and services for her family situation is certainly more to blame than luck.
Arlene Holmes is the mother of a man who is hated by many. Her son, “Jim” is known to us
for only one thing : the day he opened fire in a crowded movie theater in Aurora, Colorado, killing 12 and wounding 70. James Eagan Holmes, before that day, was a neuroscience student, a camp counselor, a church goer, a class leader, a big brother. He was – and is – somebody’s son. And he had needed help for a long time.
I don’t profess to understand how Arlene Holmes feels. I can only imagine the guilt, regret, isolation and grief – and surmise that these feelings began long before the “Batman incident”, when her son first began to show early behavior changes (including a suicide attempt at age 11). What I imagine to be the feelings behind the stoic expression of Arlene and her husband as they sit near their son during his trial comes from her self-published book of poetry When the Focus Shifts, her reaction to the shootings, and the arrest and trial of her son. She states that the proceeds are to be donated to medical and mental health services.
Is she a “monster”, who “raised a monster”? I doubt it. I suspect that she, like me and Laura, was just a woefully underprepared and unsupported parent.
(01-08-2013) I can never forgive myself for not knowing that this would happen.
How could I have known?…
Forgive yourself…And then forgive the people who hate your guts and want you dead.
(02-01-2013) I had a good kid who never harmed anyone.
That changed; his brain changed.
A memory of when he was in high school…we are hiking up a hill
I can’t keep up.
Jim stays behind to make sure I am okay.
Isn’t that empathy?
Arlene writes about sitting in Jim’s untouched childhood room, “because I need the memories and tangible evidence that he was a good person.” Could this have been me? Could it have been Laura? Three mothers – three sons with schizophrenia.
What made the difference?
Is it love? I highly doubt it. These boys were all loved.
Is it the lack of family education and support? Shortage of attention paid to early diagnosis and treatment? Is it the fear of diagnosis, fed by stigma, fear, and paucity of realistic access to treatment that must be consistent to be effective? Answer: sadly, all of the above.
Or is it also just the randomness of things, the moments we missed when we look back and say, “I wish I had known?” To this I say: you can never know. You can guess. You can educate yourself. You can take whatever actions seem right, do what the mental health system “allows” you to do. But nothing is ever that clear where mental illness is concerned.
“Show me a prison, show me a jail
Show me a prisoner, man, whose face is growin’ pale
And I’ll show you a young man with many reasons why
And there but for fortune, may go you or I”
– Phil Ochs
Is it fortune? Really? According to a 2006 study, “An estimated 56 percent of state prisoners, 45 percent of federal prisoners, and 64 percent of jail inmates have a mental health problem.” So can we also blame a mental health system that is underfunded, shortsighted, and mired in legalities that prevent people with mental illness – and their concerned families – from getting the help they need?
I’m talking with George, a social worker who works in the prison system, about this. He says that, yes, many of his prison clients have schizophrenia. We agree that so many of those with unmanaged mental illness wind up instead either homeless or in prison, and that they’d have been better served by receiving treatment, as early and consistently as possible – but then George shocks me with his next statement. He says:
Of course, the majority of my guys are imprisoned for killing their parents.
This stops me in my tracks, knocks me right off my soapbox. There but for fortune…?
I have often imagined how hard it would be if Ben were incarcerated (which almost happened), institutionalized (which also almost happened), or homeless (which did happen, in the past) – but the thought that he could kill us, or anyone, in the midst of psychosis has never crossed my mind. Ben is a gentle and sweet soul – has been since birth – and I’ve always felt that this has been our saving grace. But did Arlene Holmes think her son incapable of violence? Did Laura Pogliano think she was through the worst of it when Zac admitted he had schizophrenia and agreed to be interviewed by USA Today?
The truth is, I have no idea what Ben’s voices tell him when he is untreated . He has never admitted to even hearing voices, much less the words he hears, but if he stops taking medication the fact that he responds to this internal world is undeniably clear. We only hear and see Ben’s side of the “conversation” – he gestures, grimaces, talks – but what do the voices say to him? I hope we never know, We’ve made it our job to make sure he stays in treatment, keeping that internal world quiet enough so Ben can work, live and love in the external world. We have no “legal” right to do this, of course; it’s simply a house rule, and Ben follows it. We have set limits in our home and we enforce them. So far, so good.
These days, Ben has a job he excels at, a social life with friends and family, and interests like hiking, bowling, and college classes. He takes his medication twice daily, which we supervise. Not my favorite moments in the day, but worth it. Every day he asks for a “Mom hug”, and tells me he loves me. Lucky family. We know it. But we live life with crossed fingers. All we can do is our best to make sure we respect his illness enough to keep it managed. And the rest…is out of our hands.
There but for fortune….and one hell of a continuous fight. For treatment, for research, for respect for the needs of those with mental illness, the right to have treatment and the right to a future.
Countless other families that could have been saved – including those of who have lost loved ones – with early diagnosis, stigma-free treatment, understanding, better research, mental health support services.
“Even when the dark comes crashing through. When you need someone to carry you. When you’re broken on the ground. You will be found.” – from “Dear Evan Hansen”
Battling treatment resistant depression for 25 years you’d think I’d be a well seasoned advocate for mental health issues. I don’t think I was one or even am one right now but others tell me different.
I came out about my depression a handful of years after the Prozac phenomena was introduced to the world. I told my mother and eventually my friends, was placed in therapy and on meds. I regained myself – well, better than myself. My doctor said I was “back on track” after a good 3 months and took me off my med. Then, the world went dark and have never achieved such remission ever since.
So, I advocated for myself – even before I knew what advocacy was. I found the doctors, the therapists, researched the meds and methods. Informed my friends and family and tried my best to educate them. I fought off jokes about being “a walking pharmacy,” and others. I stood up for myself even when I barely had the energy to get out of bed. I did try and I still do.
Eventually I got involved with support groups and when those ended I found social media. Facebook. I put it out there that I felt like crap. I put it out there that I was suffering. I put it out there I was isolating, in pain, hurting, lonely. I found somewhere where even through my pain I could teach people – new friends, old friends – what it was like to live with chronic depression. And I was found. I was found by old classmates, new friends, old friends who confided in me about their struggles – their pain.
But the depression tried to ward off any triumphs of advocacy because of course that’s partly what depression does to you: it lies. I currently live in a small town. Not much opportunity to advocate. But I found on social media I could reach people everywhere – and I have and continue to do so. Sure, some left, unfollowed, unfriended – just like before social media. But many more stayed and listened and extended hand here and there. I’m still working on my advocacy and I don’t intend to give up because I need to learn more too – not just about myself but about those who found me so that I can extend a hand when the time comes and pay it forward. Advocate for yourself and for others and you will be found. ADVOCATE FOR YOURSELF AND FOR OTHERS!