If the diagnosis was cancer instead of mental illness, my child would be treated with sympathy instead of judgment.
Today is National Children’s Mental Health Awareness Day, and though I’m hard at work on something else, I didn’t want this day to go by without posting a few words in honor of the occasion. I wrote this piece a couple of years ago and it is no less true now than it was then. Severe mental illness is devastating. It places crushing burdens (financial, emotional, spiritual, relational) on families, just like other serious and life-threatening illnesses do. Shouldn’t we, as neighbors, friends, family, and society, treat illness that originates in the brain with all the sensitivity with which we treat illness that comes from other parts of the body? Shouldn’t we spend money on treatment and research for brain-based illness at the same rate we spend money on other illnesses?
If the diagnosis was cancer instead of a mental illness:
No one would tell me I could control my child’s symptoms with harsh discipline.
People wouldn’t say I’m “making” him sick because I somehow, perversely, need that.
There would be enough doctors to meet his needs.*
We would never wait weeks or months for life-saving therapies.
People would not tell me that I’m lucky because my child doesn’t have some other, equally life-threatening illness.
I would be allowed to give my child food and drinks (if medically safe to do so) while we waited in the ER.
If my child was hospitalized, he would never be locked up, alone because of his symptoms.
While in the hospital, I would be welcome (and even expected) to stay with him all the time, even overnight.
People would not tell me that my failures as a parent were the cause of my child’s illness.
I would be treated with sympathy instead of judgment.
My child would be treated with sympathy instead of judgment.
People would not question my motives for seeking treatment. They would accept that I want to keep my child alive.
I would not have to search carefully for a pharmacist who would dispense life-saving medications without making suspicious faces and doubtful comments about their necessity.
People would accept that, while my child’s medication regimen carries significant risks, the risks of the illness are even worse.
Drug manufacturers would have done research on my child’s medication in pediatric populations so that the doctor and I have the information we need to minimize risks.
If my child was symptomatic during school, he would not be punished for those symptoms or told to stop it right this minute!
If other children made jokes about my son’s symptoms, their parents would tell them to stop.
Other parents would not make jokes about my child’s illness.
No one would insist that television/movies/video games caused my child’s illness.
My child would go to the hospital that has fresh paint, adequate equipment, and up-to-date playrooms.**
No one would say the name of my child’s illness while making air-quotes.
No one would insist that my child needs an exorcism.
People would not scoff at the possibility that my child could die of his illness.
*Not true everywhere, but I don’t know of a single community in the US that isn’t experiencing a shortage a psychiatrists, and especially pediatric psychiatrists.
**Again, not true everywhere, I know, but here, the “regular” hospitals are bright and cheery while the psychiatric hospitals are ugly and depressing and the staff must become masters of making-do with inadequate everything.
Cursing and sword swinging in the wee hours. That doesn’t seem entirely normal.
It’s 3:11 am and there are some people sleeping in this house, but Carter and I are not among them. I was dozing in and out, trying mightily to find my way into unconsciousness when Carter woke and started one of his sing-song chants:
Butt fucker butt fucker ass fart fuck
Butt fart ass fucker fart my ass
Ass fucker fart fucker stupid ass
There is more, but I’m sure you get the idea. It is all accompanied by the swinging of a plastic retractable light saber.
Charming, yes? I swear, my kid could make a seasoned Naval seaman blush. The fact that he doesn’t know what fucking actually IS, is small comfort in these moments, which in all honesty are mostly disturbing because they are interrupting my sleep. The cursing? I won’t say I like it, or that I don’t notice it, but it is what it is and I got tired of dishing out the consequences every time he spilled one of his foul songs, so we’re sticking with making sure he doesn’t call names and we make clear that racist/sexist/etc. hate language never makes itself comfortable in our home. Thankfully he hasn’t heard those words yet so for now, we’re safe. First person to teach my kid a racial epithet gets it right between the eyes.
No, instead of trying to force him to stop (a losing proposition during the day, when I’m rested; a doomed exercise in escalating frustration in the middle of the night), I tell him that if he needs to continue he has to go to the garage.
“But there are cockroaches out there, Mommy! I can’t go out there with the cockroaches!”
“I sprayed the garage weeks ago, maybe even more than a month. The cockroaches are long gone.”
“So you want me to go out there with the poison?”
“That poison can’t hurt you, but it it’s a problem there’s always the option of laying quietly in your bed until you fall asleep.”
“I guess I’ll die of cockroach poison, then.”
And he took his plastic light saber and went to the garage, where from my office nearby I can hear him sing-songing his blue way through his elaborate Ninja sword routine, which is actually quite graceful and balletic.
Soon, he’ll come in and try to go back to sleep. I will go to sleep. The light saber will definitely go to sleep. And to think, we still have 2 1/2 hours until we have to get out of bed!
Parenting a child with serious mental illness is easier if you can mostly ignore the future.
It was my ability to cast my mind out—out to the experiences of others and out in time—that made me. My childhood imagination was vivid but it was never populated by monsters and fairies or dreams of myself as an astronaut or ballerina. I was haunted by the real and the really possible: the devastation of a Central American earthquake; the starving Cambodian children on the evening news; fear that my sister would be killed by the leukemia with which our next door neighbor was sick; fear of my parents dying in a car crash on their way home from dinner when my sister and I were home with a babysitter.
I wasn’t inventive, but I was profoundly receptive. Oh, how I wept for those children in Cambodia, chasing and eating bugs to survive, left alone without parents to look after them. I imagined that South American earthquake, saw families asleep in their beds as their homes came down on top of them, and hoped that they were dead before they felt any pain or fear. Growing up as I did in the later years of the Cold War, and in Albuquerque (and hence at a location that would be among the first annihilated should there ever be a nuclear war), I prayed often that no one would feel compelled to push the Big Red Button. I pictured two matching buttons, one under the letters USA and one under the letters USSR, and covered them with bulletproof glass and locked them tight so they would never be accidentally pressed.
I am me because I was born porous. A million possible futures presented themselves to me, each more plausible than the last. When my aunt took her life, I knew that anyone I knew (and even I) could do the same at any time. That knowledge hung there, as real as breakfast and school and the changing of the seasons and the tattered copy of The Little House on Plum Creek on my nightstand and killing fields and famine and devastating natural disasters that killed tens of thousands.
Obsessed with the future and all the anxiety-producing potential it held, I became possessed of a superstitious notion that, if I showed the universe that I was concerned enough about a possibility, the universe would protect me from it. While I was pregnant with Jacob, I couldn’t stop thinking about how I would handle it if he was bullied in middle school. Granted, I have a history that makes me ultra-sensitive to such things, but he was still a fetus at the time.
I made some half-hearted attempts to live in the present. Who doesn’t want to live more peacefully? But the casting about that my mind does is so much a part of me, it seemed all but impossible to bring it home, to live among the people I love and the time I have been given, and so I continued to indulge in my fears and fantasies of the future. As much discomfort as was caused by my tendency to share the pain of people I don’t know and in times I cannot touch, it was also a source of inner adventure. I was loathe to let it go.
And then there was Carter. As we slogged through his first five years, Carter gathering acronymic diagnoses like a snowball rolling downhill, the future grew dark, and then darker, and finally unbearably sinister. I had worried about my children since before my eldest was born: would they be unhappy? Struggle with depression? Get addicted to drugs? Have unhappy relationships?
But this, with Carter, was something different. I began to see his face on every muttering homeless person I saw. The possibilities for his future brought me to my knees: life on the streets, drug addiction, prison, catatonia, a death like that of Kelly Thomas, an act like the one committed by Jared Loughner, and most of all, suicide.
And then, suddenly, the self-help advice about living in the present (If you have one foot in the past and one foot in the future, what are you doing to the present? Pissing on it.) as some lofty self-actualization goal was bullshit.
I didn’t need to learn to live in the present to make my life nicer. I needed to learn to live in the present to survive.
The fear still overwhelms me sometimes, but I have become adept at putting my blinders back on my face so that I see exactly what is in front of me. Assess the present situation (Is he anxious? Raging? Manic? Delusional? Too disassociated to leave the house? If he’s calm, is it a fragile calm or is it robust enough that we might make it through a fun activity?) and act accordingly. On any given night, I may sleep, and I may not. I roll with it because there is no other way. Fighting against what is will only bring heartache.
To understate the point in a most dramatic way: rolling with it is not in my nature.
Jorene used to tell me, “Don’t do battle with God. God doesn’t fight fair and God always wins.” True enough. Also true: mental illness doesn’t fight fair, and you never know when you’ll be able to beat it and when it will beat you. There is very little information out there about the prognosis for kids like Carter, and what there is, is not nice. Add to that the fact that Carter has other issues beyond his social/emotional/behavioral ones and, well… I can’t think of any good reasons to think about it.
The future still exists. I imagine Jacob working hard as a skilled craftsperson, happily creating beautiful things and enjoying his work. I envision Abbie arguing a case in front of a jury, firm and impassioned and brilliant, and driving home satisfied with a job well done. I see Spencer creating huge murals, fully immersed in his art and stepping back and finding that other people love his work almost as much as he does. I see them with lives filled with relationships and love. I also fear the other possibilities, that they will somehow settle for less than they are capable, for lives that will not burn hot and bright.
The future exists, too, in my dreams for myself as a writer and all I hope to do in the next thirty years and in the hopes Brian and I have of changing some of the laws and institutions that hurt children with mental illness.
But with Carter, I wear my blinders. Even when I prepare for his future by studying our options for when he turns 14 (the age at which a child can refuse all medications and treatment in New Mexico), and 18 (when he will have all the legal rights and responsibilities of an adult whether he is prepared for that or not), I am learning in the abstract. Puberty hangs 3-5 years in front of us and I refuse to look.
I’ve been criticized for what others view as negativity. Dream big! they say, as if that dreaming would make the dreams real. While I am far from giving up hope for a happy, fulfilling life for Carter, it is not easy to dream when almost all the evidence in front of me speaks to continued struggle.
He is very sick right now (though not the sickest he has ever been) and I am thrust again into the reality of this awful thing, this unforgiving, relentless, loathsome illness that came to us like a lightning strike, this thing that impacts almost every minute of every day of his life.
I keep my mind right here in my skull. My heart wants to bleed for the people living on the streets, most of them tormented by voices and visions and brutal delusions so much like the ones that make Carter suspicious of the water I give him and my reassurances that there are no bugs in his hair, and I won’t allow it. My heart can’t bleed for them without putting Carter’s face on the fronts of their heads. I feel that tug and I turn away, not because I am callused but because I’m not.
My mind lights on a thought—will he ever learn to read, perhaps, or will medicine and delusions rob him of his already limited cognitive ability—and I instantly yank it back. I help him sleep and reassure him when he can’t. I try to help him get out of the car without pounding all four door locks 12 times apiece. I count to ten when I’m angry and usually succeed in not screaming at him. I feed him breakfast and I feed him pills. I restrain him when necessary and tell him sternly that I will not let him hurt himself, ever. I help his brother and sister live with their brother’s constant symptoms and try to find ways to meet their needs in spite of Carter’s intense demands. Whenever possible, I put some joy into Carter’s day because he has so much less of it than the rest of us do.
And I keep my mind right here, right now.
The Future Rainer Maria Rilke
The future: time’s excuse
to frighten us; too vast
a project, too large a morsel
for the heart’s mouth.
Future, who won’t wait for you?
Everyone is going there.
It suffices you to deepen
the absence that we are.
I put a condiment cup full of pills in front of Carter this morning, as I do every morning.
As he does most mornings, Carter shouted at me, “I don’t have any water! You know I only take my pills with water!”
And as always, I pointed to the water glass sitting next to the cup of pills, and as always he groused and complained because I didn’t tell him about the water, or there wasn’t any ice in it, or it wasn’t in his favorite cup, or don’t you know I can’t take my medicine before I put on my shoes?
We go around like this over and over all day: when I turn on the car (if I start the engine too soon he is afraid; if I start it too late, he is impatient); whether or not the “right” socks are clean; what time he arrived at school (8:28 is too late; 8:25 is too early); whether or not we have the yogurt flavor he desires. He punishes me for perceived slights (mostly these involve not moving fast enough, as in, why didn’t I know what he wanted before he asked for it?), small infractions, and things over which I have no control (the weather, traffic). Most of all, he is driven to blind red rage over the word no. On and on it goes, every moment containing possible cause for fury.
I see the pain and condemnation in the eyes of Carter’s siblings: why don’t you try harder? Why don’t you do more to keep him calm? Why don’t you punish him for speaking to you that way?
The non-reaction that bothers our other kids is not something that Brian and I chose in a careful conversation the way we chose, say, Carter’s school. We didn’t formulate a plan.
We just got tired, so we redrew the line at which we would respond. And we redrew the line again. And again. And again. These days, the issue is not the frightening rages of two years ago. He isn’t a danger to himself or anyone else, not in a physical way. There is no emergency, except in Carter’s mind. Where the illness used to be a shotgun blast into the center of our family, now it’s like an army of toothpick-wielding demons, stabbing us repeatedly. Better, to be sure, but not anyone’s dream of a happy family life.
Here’s the sad fact: there are limits to how much we can do to manage Carter’s symptoms.
In a contest between responding to every nasty word and minor tantrum, or learning to let most of it slip by us, we chose to let most of it go. In the midst of an endless stream of punishable behaviors, the sound of our own voices — Carter, that’s unacceptable; go to your room. Carter, I expect you to treat me with respect; go to time out. Carter, you may not speak to your brother that way; you can’t use the computer for the rest of the day. — was nothing so much as more noise. His noise, our noise, so much noise, and none of it accomplishing anything.
So many features of Carter’s illness come together to make discipline, if not impossible, at least profoundly difficult. His extreme impulsivity makes the span of time between urge and action minuscule. His cognitive issues mean that learning something new (like responding calmly to perceived injustices) takes an astronomical amount of repetition to solidify. Paranoia makes him believe that even the people who love him the most in the world might try to hurt him on purpose. Anxiety leaves him feeling like every problem is a crisis. If he is psychotic, delusions and hallucinations make his outbursts even more irrational.
This is a hard thing, this accepting of Carter’s behavior. I know that anxiety is at the bottom of these behaviors, but what we see on the surface is just so much nastiness and anger. It’s hard to feel sympathy for a person (even a small person) who is acting in such a hateful manner.
Like Spencer said when Carter was a baby who cried all day and much of the night, “It’s a good thing we love Carter or else we’d be banging him on the floor.”
I hate that. Not as much as I hate that my little boy is living in the emotional equivalent of a pinball machine, but I hate it nevertheless. For all of us.