Too Vast a Project

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.

Proud/Sad

My eldest son, Jacob, played his first solo show last Friday.

My husband and I took the rest of the kids to hear him and we had a nice time, or as nice a time as any 40-something adults can have in a large crowd of teenagers. There is deep joy in watching our teens circulate among their peers. Abbie, my 15 1/2 year old daughter, ran into some boys she knew from school and spent the time flirting with them and bragging (oh-so-subtly) that the guy on stage was her brother. Spencer, my 14 year old stepson, hung out with some of Jacob’s friends, eager to test his social prowess before he officially starts high school in August. Jacob took the stage and although he was visibly nervous, he performed wonderfully. The audience was caught up in the off-center humor with which everything Jacob creates is infused.

Of the hundreds of things that Carter’s illness (bipolar with psychotic features, among other things) has robbed from us, one of the saddest is the tempering of joy. I try very, very hard to be in the present, but I’m rarely 100% successful. I couldn’t help thinking that Carter will probably never enjoy the social successes that our other children have achieved. His heart is as generous as any of his siblings, but his illness too often covers his kindness. He wants to make friends, but his bizarre conversational tics and habits scare other children.

So I’m proud of Jacob. Wildly proud. Warm from my head to my toes proud.

But also sad.

Carter, in the past year or so, has become increasingly aware that he is different. Most of the time, he’s caught up in his own concerns—the hallucinations, delusions, obsessions, anxieties, and compulsions that propel him through his life—but lately, in his more alert moments, he knows that most people don’t struggle like he does.

That awareness tears him apart. It causes me to have a bizarre not-quite-wish that he was just a little sicker—sick enough not to understand what he doesn’t (and likely won’t ever) have: play dates and sleepovers, parties and performances, teams to join and extracurricular activities to enjoy. Friends that everyone can see and hear. Confidence, contentment, and fun.

As he gets older, we are less and less able to prevent his dawning awareness and the violent self-hatred that results from it. His siblings are so much older than him that he has, until recently, not compared himself to them. They were Big Kids who did Big Kid Things, vastly different from the things that he did. At 8 1/2, 6 1/2, and 5 years older than Carter, they were almost a different species. Lately, though, there are questions. “How old was Jacob when he had a sleepover the first time?” “How many friends did Abbie have when she was the same age as me?” “Was Spencer scared to go to school when he was in second grade?”

I always knew that Carter’s innocence (about this one thing, at least; he’s innocent about so little) wouldn’t last forever. I knew that my basic explanations (Everyone has a hard time with some things, and this is what’s hard for you.) wouldn’t hold water for long. It’s sort of like teaching my other kids about reproduction. At first, I gave vague descriptions of babies who grow in women’s bellies like magic beanstalks, or some such. And at first they were satisfied. Eventually, though, I had to talk about eggs and sperm, and how one got in contact with the other.

That was a piece of cake compared to this, because as much as teaching my kids about sex was a little uncomfortable, it was a natural thing to be doing. I was explaining a normal part of life to kids who would one day experience it (much as I don’t want to even consider that!). But Carter’s illness is a perverse twisting. A wrongness. A misery-creating beast.

My husband and I talked long, long into the night last Friday, contemplating all that Carter suspects, knows, and fears. We discussed what to tell him, and how, and when. How do we help him understand the reality of his illness, while helping him remain hopeful? How do we teach him to let go of expectations that are tied to what everyone else does, and grasp at goals that are within his reach? Will he be relieved or devastated?

I don’t know, and sometimes that’s the hardest thing. I just don’t know.

I’d shrug if I could stop imagining Carter’s pain if I get it wrong.

This post originally appeared at Hopeful Parents.