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.

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14 thoughts on “Too Vast a Project”

  1. Oh friend, I’m so sad that Carter is this sick right now. I understand the push against “dream big” — I have it too and have yelled at others for trying to force it on me. I need to stay in the moment because when the days and weeks and months and years stretch out, I want to sleep forever. Hugs my friend.

    1. Thank you, Alex. I think when people push that whole dream big thing, I react so strongly because I feel like they’re minimizing what I’m feeling, you know? Like they’re saying it doesn’t matter, or it’s really not big deal, or something. Whatever the reason, it really flips me out.

  2. I feel, especially in the sense today of loss, that its dangerous to look too far ahead. Good or bad…just dealing with today is more than enough.

    What is it they sing in RENT…”There is no future…there is no past…I live this moment as my last”

    Yeah, that.

  3. I wanted to smack parents that told me this 10 years ago, when we realized we were on this roller coaster. But I’m going to say it anyway.

    It does get better.

    The worrying doesn’t end. But the symptoms become….not less, but more just a manner of everyday life. Not so much crisis.

    Today I live for Tim being “stable” – a word I hate to say out loud, lest I jinx it – and not try and think about what could be if he destabilizes.

    It does get better.

    1. Three years ago, I probably would have wanted to smack you. Now? It has already gotten better in some ways, mostly just because I know what I’m doing more now than I did back then. I’m not so surprised by every new thing. Plus, once you’ve been in the system for awhile, you start to know who to call. That goes a long way.

  4. This touched me very much. My little man is only 8 right now and I have been asked the question, “How much longer can you do this?” so many times over the last few years. “What will you do when he is bigger, stronger?” “Are there places for kids like yours?”

    How can my friends, family, and trusted professionals expect me to be nostradamus at the same time that I am struggling through each day????? It is so unfair that they have the time and energy to spin little scenarios of what they picture as our future.

    Like you, I can’t spend any time in my head thinking of the future. I immediatly think of my baby as a victim of suicide or as a prisoner spending the rest of his life in a cell because he committed some horrible act.

    TODAY he is a little boy who needs me to help him navigate his emotions on a sometimes hourly basis. TODAY he needs me to continue to work with the doctors, medicines, food, sleep cycles, activities, schools, siblings, etc. that are part of his present. TODAY I need to do as much as I can to impact his tommorrow without thinking of what that might be.

    1. Yes, exactly. When Carter was 6/7 and very, very sick, I was restraining him often (10-20 times per week), and it was exhausting but he was under 50 pounds. Someone asked me, “What are you going to do when he’s bigger?” and, ummm…I dunno? How would I know? And thank God he has rarely needed that kind of care recently, but just like with everything else, I’ll deal with what is. Like they say, don’t borrow trouble!

  5. Oh, babe, this is all so real to me too. I am dealing with the growing realization that Ethan’s “ADD” is not actually ADD but rather a unipolar manic state and the he is certainly in the throes of a mood disorder, and not a particularly minor one.

    And yet I can’t talk about this on my blog, the place where I talk about everything, because he is now almost ten and has a say in what I say about him to the world. And a little ADD (almost a chic diagnosis) is really different than a major psychiatric illness and I can’t out him to his friends. (Some parents of his friends READ my blog.) Big Sigh. I am so worried about him right now. As you know born days apart from your Carter, adolescence and the accompanying hormone storms loom in the ever shortening distance. Hugs, friend.

  6. my heart hurts for you and for Carter when you are in the middle of him being sick. I pray for you guys because I just don’t know what else to do.

  7. Hello. Just a note to say, using grossly inadequate words, thank you. Thank you for the 20 or so unbelievably moving entries that I’ve just been reading. Thank you for the swordlike honesty that shows up everywhere in these entries, over and over. It is helping me open some more channels in my own mental health problems, and suddenly there is more air moving, more circulation. More hope.

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