An Eternal Multitude of Despondency

Instead of letting me go in an ambulance, my parents drove all the way from Albuquerque, New Mexico to Prescott, Arizona to take me from the tiny regional medical center where I had been for nine days to the much larger hospital in Phoenix.

Instead of letting me go in an ambulance, my parents drove from Albuquerque to Prescott, Arizona to take me from the tiny regional medical center where I had been for nine days to the much larger hospital in Phoenix.

When they arrived to collect me, I was furious because I was not dead yet, and I was furious at my parents because one time they had wanted to have a baby, and that baby was me. Horrible, miserable, disappointing, useless me.

Somewhere at the back of my skull where depression had driven my better self, I could hear a murmur of words that said, ssssh, be nice. They love you. This is hard for them.

My parents drove me from the hospital to the house where I had been living and gathered my things. We filled my suitcases with the paperback novels I read until I’d gotten too sick to do anything but stare at Green Acres and Make Room for Daddy on Nick at Nite while I sharpened and re-sharpened every knife in the house. My mom put my hamper in the minivan last, telling me she’d do my laundry and bring the clothes to me at the hospital.

I was in the middle seat of our Volkswagen Vanagon while my mom drove the steep, twisting roads out of the mountains and into the pestilential heat of Phoenix. We paused for a funeral procession and I looked at the hearse and I hated its dead passenger with a hot red rage because how dare that asshole get a chance to die when I could not have mine? How could the universe force me to continue to draw breath when so many were allowed to make their escape?

Something broke behind my face, and I don’t know if it was sitting in that seat in the van where I had sat so often as a child, or if it was the presence of my parents (who on that day I hated and loved in equal degree), or if the little green and white capsules (“This drug is so new you’ll always be able to tell people you were one of the first to take it!” chirped the psychiatrist who prescribed it, as if I didn’t have every intention of dying before I ever told anyone anything ever again.) were chiseling away at the deadness in me, but I cried.

I laid down on the brown van seat and bawled. I used up all the tissues in the car, and then the roll of paper towels my parents always carry when they travel. Finally, I crawled into the back to find one of the little travel blankets my mom made when I was twelve and I cried into it and there seemed no end to the tears and snot and suffocating misery. There was no relief in those tears, no purifying release, just more: an eternal multitude of despondency.

My mom parked the car and my dad opened the sliding door. He unbuckled my seatbelt and I walked under his arm, my face covered, and he guided me until I was in a chair in an office with a woman who asked questions. I hated that woman, this intrusive, bossy crab who wanted me to answer her stupid question and sign her ridiculous papers. “I’m sorry, Mr and Mrs Jones, but she’s 18. She has to answer herself,” and she was just another prying, arrogant ass who wanted to stop me from checking the fuck out of this life.

We walked again, me still under my dad’s arm, my swollen, soggy face hidden, and there was a loud clunk and I was seated in a new chair. I cried on. My face was as hot and raw as a knee that has been skinned on pavement after a bad spill from a bicycle, and still I cried on. I leaned into my dad while someone put a tourniquet on my arm and drew blood  and someone said, “Excuse me. I need to use the phone.”

I looked up. In front of me, a blonde woman no bigger than a ten-year-old wearing jeans and a housecoat, and behind her, across the room, a mustard-yellow steel door. “We’re here? We’re already here?” I asked, panicked. I was locked in.

“You gonna move or what?” asked housecoat woman, and my mom guided me to a different chair so I wasn’t sitting in front of the row of pay phones on the wall.

“Can’t I come to the hotel with you guys?” I asked my parents. “Just for tonight. I’ll come back tomorrow. I promise! Just take me with you for one night, please? I won’t do anything. I promise. I really promise.”

My dad squeezed my hand. “We have to go now. You need to stay here but we’ll come visit tomorrow.” They each hugged me and I don’t know if I hugged them back.

That night, a nurse gave me a Benadryl to help me sleep and my insomnia snickered at that drug and I spent the night sitting in the day room with my 1:1 aide (the person charged with staring at me every minute lest I find some way to hurt myself in this bladeless, beltless, edgeless, glassless place). The aide lit my cigarettes one after another after another while I stared at the console television with its familiar succession of elderly shows on Nick at Nite. She asked me questions as if I was a child she was humoring at a friend’s party: Do you have any sisters or brothers? Do you like dogs? What was your favorite subject in school? I did not scream at her shut up shut up shutupshutupshutup and eventually she opened one of the magazines in her lap and seemed to be reading it.

The days were long, punctuated by meals we ate in the smoky day room and the counting of returned plastic cutlery after. There was a tray of graham crackers and apple juice from which we could snack between meals, and down the long main hall was a man who was either bedridden or in restraints who screamed curse words at the staff all day until evening when they gave him medicine that made him sleep and we, patients and staff alike, breathed a collective sigh of relief. On the rare occasion I was able to sleep, my roommate woke me to share the triumphant news of her successful vanquishment of ceiling demons. “They would have eaten everyone,” she told me, and I wished she would let them.

My parents drove to Prescott to pick up my car, then my dad drove home in our van while my mom stayed on in Phoenix for a few days. She brought me my clean clothes. She had gotten all the blood off the left leg of my khaki pants and I wished she’d just thrown them away but maybe she needed to scrub and scrub and scrub until it was gone. She couldn’t scrub my hand the way she’d scrubbed the pants and I poked and pulled on the wounds there but they didn’t hurt much anymore.

I was relentlessly cajoled. I was running a low fever and my blood work showed I was dehydrated so the staff brought me cup after cup of soda, tea, and water that I would not drink. They threatened that I would not be allowed off the unit if I didn’t eat but all the food tasted like sand. All the drinks felt like glass in my mouth. I sat in a chair in the day room and listened to my thoughts pummel me and I hoped I would die in my sleep and I smoked my cigarettes and when they brought that green and white pill in a tiny paper cup I swallowed it.

There was a doctor with an accent so thick I couldn’t understand more than about half of what he said. He began to give me diagnoses, one after another, stacking and shuffling them, as if hanging enough words and codes on my emotional reality would cause a spontaneous healing. “Please just give me some medicine to make me sleep,” I said.

“You already have catatonic signs and symptoms,” he said. “A sedative will only make you worse. Don’t worry; when you are tired enough, your body will sleep.”

I shuffled out of his office and my aide took me back down the mustard-yellow hall, through the mustard-yellow door, and seated me in a mustard-yellow chair. She lit my cigarettes until shift change when someone new came to light my cigarettes. I sat sleepless through that night and the next day the doctor said, “You’re a really tough case. You’ll probably need to be in the hospital for a very long time.”

“Please just give me some sleep medicine,” I said, and he refused.

“You’re a tough case for sure,” he said again.

One night, the charge nurse took me to the courtyard with her. She lit a cigarette for me and one for herself and said, “I hear you want to die. Why would you want that? You’re young and pretty and you have everything going for you! I wish I could be young again. I wouldn’t waste it in a place like this.”

I smoked my cigarette and held my beltless robe closed and I did not scream at her shut up shut up shutupshutupshutup. I could not understand why no one but me could see that I was already dead and it was only my stupid body that was keeping me trapped like a ghost among living people.

The nurses told me when to shower and I dutifully soaped and rinsed, my aide watching all the time while the water screamed insults and threats at me. I got out of the shower and lay in a soggy, naked heap on the bed, overwhelmed and unable to decide what clothes to wear. The aide sighed and brought me clean underwear and socks, then put two hospital gowns on me, one open at the back and the other open at the front.

I shuffled back to the day room and smoked cigarettes while the other patients swirled around me, interacting with their hallucinations, arguing over the TV channel, demanding drugs or food or freedom from nurses, aides, and other patients. The man down the long hall howled, hurling his familiar insults in his familiar way and I hoped that soon he would get his haldol or thorazine or whatever they gave to shut him up.

A nurse brought me a cup of orange soda and set it down next to my ashtray. “Drink this,” she said. “Eventually we’ll have to give you an IV if you don’t drink something. How do you think your parents would like that? How can you do this to them? Maybe I’ll take your cigarettes away until you drink something. Maybe I’ll even take your cigarettes away until you speak. Would you like that? No cigarettes as long as you keep sitting there like a statue?”

“Fuck you,” I said.

She looked slapped. “Fine. Drink your soda so I don’t have to call the doctor again.”

“Fuck you,” I repeated.

The nurse walked away. The aide looked at me over her newspaper and chuckled a little. “You might get well after all,” she said.

I drank the soda.

Issy and Kelli Stapleton: Murder, Suicide, and Family

I have been deeply disturbed for weeks. I keep trying to write this blog post and backing away from it, over and over. I have decided not to publish it, and alternately been compelled to publish it. Ultimately, this is my truth. This is what my family survived, and if it was the reality for my family, then it’s the reality for other families because we aren’t unique. But back up; this doesn’t begin with me, but with another family.

The facts of the story: On September 3, 2013, Kelli Stapleton published a blog post in which she described an IEP meeting that ended with the district school refusing to provide services for Issy, Kelli’s 14-year-old autistic daughter. Issy had just been discharged from an inpatient treatment program in Kalamazoo, MI (three hours from the Stapleton home) where she was being treated for, among other things, aggressive behavior related to her autism. While at her inpatient program, Issy had developed a good relationship with a teacher in the junior high she attended while she was in treatment. Kelli and her husband, Matt, decided that Kelli and Issy would move to Kalamazoo so Issy could attend school there and Matt and the couple’s other two children would remain at home.

Later that same day, police found Kelli and Issy in the family’s van in a rural area near their home, both unconscious, during an apparent attempt by Kelli to end both their lives. Issy spent about a week in the hospital and is now recovering at home. Kelli is being held without bond on a felony attempted murder charge.

Kelli’s act set off a virtual bomb in the special needs/disability blogosphere, and especially in the autism world. I will not guess at Kelli’s motives for trying to kill herself and her daughter (we will only know her motives if and when she tells us), but I do know how I got to the edge of the cliff that Kelli went over.

I have been consumed by what Kelli did since I heard the news. Part of that is because I know Kelli and part is because I have been close to doing what she did. Since the news broke, the cry that has gone up from autistics and people with other disabilities is, we have been dehumanized. We are not considered valuable or worthy of consideration, kindness, freedom, or even our very lives.

That is true. Our culture as a whole, and we as individuals, have not honored every person as we should. We have hurt, isolated, ostracized, assaulted, sterilized, tortured, and killed people we don’t understand. We have deemed those who seem different less worthy, and often we have done the hurting in the name of helping, calling it therapy, treatment, or religion. If you or someone you love have been on the whip-crack end of that terrible phenomenon, I am sorry. You deserve better. You deserve all good things, all the support and kindness and love that this world and the family of humanity has to offer. The people who hurt you were wrong. If they had good intentions but hurt you anyway, they were wrong. If they loved you but hurt you anyway, they were wrong.

All that said (and all that true), there is a complexity that we’re losing by insisting that a discussion of what may have caused Kelli to do what she did (or that any discussion of why so many caregivers kill or attempt to kill the disabled people in their care) is necessarily devaluing Issy and other victims. Condemning Kelli will not stop the next desperate parent from taking a similar action, and in fact may prevent people from reaching out when they are in danger.

Kelli and Issy were (and are) victims of the same system, and that system made them victims of each other. When we, the ground-level stakeholders (people with disabilities, caregivers, and people who would like the world to be more just), focus on the ways Kelli and Issy victimized each other, we let all the other people off the hook. When we vilify Kelli, or autism, or the various therapies (on which I am no expert, since my disabled child has serious mental illness, not autism), we don’t scrutinize all the people who hold the power and the pursestrings.

Think in terms of power and investment. Kelli and Issy and the rest of the family were relatively powerless. Therapies, education, and help for Issy would only come via the bureaucracies that hold the purse strings, as they do for most of us who don’t have a few million dollars at our disposal. So let’s say the Stapleton family needed a level of help we’ll call X. That X represents the amount of help that enables the family to have a life that is life. Issy goes to school all day and there is adequate care there for her to be safe, healthy, and to learn as much as she can. There is enough help in the evenings and on weekends so that the other Stapleton children can have the attention of their parents, help with homework, family meals together, and regular outings. The Stapleton parents have the space they need to nurture their relationship and their individual interests. Issy has all the appropriate therapies that her team parents, teachers, and other care providers agree she needs, and her parents and siblings have therapists, too. There is so much help that the parents are not overwhelmed and the children are not afraid.

The Stapleton parents are completely invested in the family getting help level X. Their desire is for a life that resembles normal family life as much as possible. I’m making that assumption, of course, but it’s based on what I want for my own family so it’s not a big stretch.

What are the chances that they will get help level X? In my experience, nearly zero. I know dozens of families in which there are children with extraordinary needs, and the amount of help they get is always X minus at least half.

In late 2009, I had begun to consider that suicide was reasonable, as was ending the life of my mentally ill son, Carter, then 7 years old. There was no hate in me for Carter; in fact, it seemed to me that ending our lives was the only loving thing I could do. When I read of people condemning Kelli’s actions, saying that autism or disability is no excuse for murder, I am perplexed because I wasn’t looking for an excuse to kill my son; I was looking for an excuse not to. I believed that ending our lives was the only loving response to my son’s illness and suffering that was available to me.

(Pause. Breathe. We are all well now, and very safe.)

I’m not a stupid person, nor am I in general delusional, but when I lived with unrelenting and profound stress, fear, grief, and anger, coupled with severe sleep deficit, I changed. I watched the light go out in my other children’s eyes, watched my husband descend into periodic despair, and that changed me. Some people told me I was overreacting and others told me I was a saint, an angel, and a hero, and that changed me too.

Everything about Brian’s and my lives was shredded in the early years of Carter’s life. All the things we did that gave our lives meaning and joy were gone: church, prayer, sex, family relationships, play, conversation, reading, walking, writing. All the things we did that made our lives work were destroyed, or minimized to the point of dysfunction: maintaining our home, maintaining our yard, keeping up with the laundry, preparing meals, shopping. Those things that kept us feeling good about ourselves disappeared: hobbies, friendships, art, routine medical and dental care, taking care of our personal appearance, even hygiene, and of course sleep. We slept so little for so long, I’m not sure how we functioned at all.

I’m not talking about things that we experienced occasionally, or sometimes, or during the day, or for a few weeks here and a few weeks there. I’m talking about every minute, day and night, for months and years. We know that war and poverty change the structure and function of the brain; it’s not a stretch to assume that living with unrelenting and profound stress at home can do the same. And just as some infants come out of their painful early years in Russian or Bosnian orphanages just fine, and some come out deeply damaged, parents come to special needs parenting with our own strengths and weaknesses. Some of us will bounce, and some of us will eventually shatter.

In the midst of the chaos of our home life,  we were condemned and criticized everywhere. I was patted on the head (once literally) and called a worried mom (many times, in many ways) when I told doctor after doctor after doctor that my child did not sleep, could not laugh, smashed his own face into the floor, and was not happy. I spent hours on the phone with the insurance company and got very little in return for my efforts because we just don’t cover developmental delay. I heard the questions again and again, searching for how Carter’s problems were my fault: did you take medicine, what do you feed him, were your other kids this way? I saw the nasty looks and heard the foul words from people at the grocery, the post office, and restaurants. We called for help and were added to waiting lists for tests, waiting lists for appointments, waiting lists for services.

I begged for help and heard, in a million ways and on a thousand days, no, we can’t help you. There’s nothing to be done. Go home. Deal with it.

I never devalued my son’s life. Our culture, society, and systems did that. When I waited on the playground for the kindergarten bell to ring and none of the other parents would talk to me because my son was “that boy,” the one who attacked other kids, couldn’t sit still, and occupied all of the class aide’s time and attention, I felt that shame, but it wasn’t mine. That shame belonged elsewhere—with  the principal, lawmakers, and supervisors who refused to provide appropriate placement. They devalued my son and my family. Doctors who saw me, frantic and pleading, for a standard 5-minute visit, and handed me a book about sleep instead of sitting and hearing me and working with me to find a solution—they devalued my son, my family, and me, but I felt the shame.

In the midst of all of that, with my life swirling in pieces around me, the dominant emotion was sorrow. My little boy was in agony. He was afraid, sick, psychotic, depressed, aggressive, suicidal, manic, and miserable. Even the most basic pleasures of life, a good night’s sleep or an easy poop, were denied him. I would have happily chewed off my arms if that would have eased any portion of his pain. I have held him through thousands of hours of sleepless anguish, pulled him back from the brink of his own attempts to hurt himself or end his own life, and watched a million hurts chip away at his heart. I would have done anything to fix it. I did everything I knew to do, and still, he suffered.

We lived like that for eight years. It changed me. It very nearly broke me. I didn’t get to the place where suicide and murder seemed like appropriate actions because I was selfish. I didn’t get there because of hate or even anger. The world was hopelessly dark, help far too scarce, and the shame too large. Most of all, the agony seemed endless, limitless. I have read over and over in the weeks since Kelli Stapleton tried to kill herself and her daughter, “A mother should protect her child!” Sometimes, I couldn’t see any way to protect Carter except to take him home to Jesus.

We have enough help now. Carter isn’t nearly as sick as he was, and my husband and I have more ability as caregivers than we used to. We survived long enough to get to the tops of some waiting lists, and we finally gained access to an excellent pediatric psychiatrist, a therapist, and a behavioral management specialist. We found a parent support group and a wonderful school that my parents have paid for. We began the process of turning our lives around, and while it hasn’t gotten easy, it has gotten manageable. There is joy again. My gratitude for Carter’s relative health and my family’s improvement runs deep like a river, but many families don’t get to experience the relief we have enjoyed in the past few years.

Violence perpetrated upon people with disabilities is a dark and ugly part of the human story, but I refuse to believe that we’re not capable of thinking around the corner and separating the cruel perpetrators from the desperate ones. Issy, Kelli, and the whole Stapleton family were left twisting in the wind. They had services, but they weren’t enough. When someone in a family is repeatedly aggressive, that means that family needs more help. When people in a family are repeatedly seen in the hospital for injuries sustained at the hands of a family member (Kelli sustained brain injuries when she was attacked by Issy), that family needs more help. When people are being bitten, scratched, and punched; when people are not able to stop biting, scratching and punching; when some children are hiding in closets dialing 911 (as one Stapleton child is said to have done); that family needs more help.

Silence and condemnation are not the solutions to those problems. The only solution to the problem of not enough help is more help.

We need a serious cultural shift in the way we think about family and caregiving in general, and caring for people with disabilities specifically. Even in the worst times, I was not a cruel or bad mom who hated my child; I was a desperate and isolated mom of a very sick child who I loved. We have to speak the truth, listen to each other, and insist that we all deserve better.

A Dislocation of Mind

Right now, millions of people in the US cannot access needed mental health care. My daughter is one of those people, and her life is at risk.

My 17 year old daughter, Abbie, broke her leg the other day; a bad break in her femur. She was in terrible pain, begging me to make it stop, to help her feel better, so I took her to the emergency room. We went there, and we waited for 6 hours, and finally a Bone Health Specialist came and told us that we should go home and make an appointment to see an orthopedist.

“I can’t take her home like this!” I said. “She’s in too much pain, and she can’t walk! Can she at least have some medicine for the pain?”

The Bone Health Specialist was aghast. “A doctor can’t prescribe medicine without seeing the patient. That would be unethical!”

I brought Abbie home and made her as comfortable as I could before I got on the phone. I called every orthopedist whose number I could find. Many of them didn’t return my calls, and of those that did, more than half told me that they were not accepting new patients, and the few who I spoke to who were accepting new patients made appointments 4-6 weeks in the future or put her on waiting lists that were months long.

*          *          *

Oh, wait, no, sorry. I got a little confused for a second there. Actually, I took Abbie to the ER for an asthma attack. She was terrified, begging me to help her breathe, so I took her in hopes of getting her some relief and making sure she didn’t die. We went there, and we waited for 6 hours, and finally a Breathing Specialist came and told us we should go home and make an appointment to see a pulmonologist.

“I can’t take her home like this!” I said. “She can barely breathe, and she could die! Can she at least have a nebulizer treatment?”

The Breathing the Air Specialist was aghast. “A doctor can’t prescribe medicine without seeing the patient. That would be unethical!”

I brought Abbie home and gave her every kind of over-the-counter medicine I could think of to help her breathe better before I got on the phone……

*          *          *

Oops, no, wait, it was diabetic shock, and after we waited we saw a Blood Sugar and Insulin Specialist who told us to go home and make an appointment with an endocrinologist……

*          *          *

Gosh, sorry, I just don’t know where my head is. I took her to the ER because she was in a car accident and she was unconscious from head trauma, and after we waited we saw a Consciousness Restoration Specialist who told us to go home and make an appointment with a trauma surgeon……

*          *          *

Or wait, no, I did take my daughter to the ER, and we did wait for hours, but what was really wrong was depression. She felt suicidal. I had already called more than 30 psychiatrists by the time we went, and had already discovered that I could not get her an appointment in a reasonable amount of time. 6 weeks, 2 months, 3 months, we’ll add you to the waiting list…and in the meantime my daughter begged, “Please, Mom, can’t you make it stop? I just want it to stop!”

It is always awful to witness one’s own child suffering. From a baby’s first cold, there are few things in life that feel worse. Part of the way I endured excruciating pain after a surgery in 2007 (a stitch had slipped and I was bleeding internally) was to chant over and over to myself, better me than one of my kids, better me than one of my kids. But when there is treatment for what ails that child; when we know exactly what would bring some relief but we cannot deliver it despite our best and biggest efforts, there is an extraordinary anger that could change the path the moon travels in the sky if only I could figure out where to point it.

I took Abbie to Kaseman Presbyterian in Albuquerque because it is one of two hospitals in the city that has a psychiatric emergency department. I took her to the ER because, as I have been busy trying to get her an appointment with a psychiatrist, she has gotten more depressed. When left untreated, illnesses more serious than common viruses have a tendency to get worse. Untreated diabetes causes organ damage (or death); untreated asthma causes scarring in the lungs (or death); untreated depression causes more acute depression (or death).

We waited some 6 hours at the ER and finally we saw a Behavioral Health Specialist (BHS). She interviewed Abbie, and then she spoke to me. “She’s clearly very depressed,” said the BHS, “but she doesn’t meet the criteria for admission. She has some suicidal ideas, and she knows what she would do if she decided to end her life, but she hasn’t definitely decided to do it. Criteria for admission is an immediate suicide plan or extreme psychosis. You should take her home and make an appointment with a psychiatrist.”

“Won’t she see a psychiatrist today?” I asked.

“No, there are no psychiatrists in the emergency department.”

There are no psychiatrists in the psychiatric emergency department.

There are NO psychiatrists in the PSYCHIATRIC EMERGENCY DEPARTMENT.

“I can’t take her home without a prescription or an appointment or something,” I said.

The BHS looked horrified. “She can’t have a prescription. No doctor will write a prescription without seeing the patient. That would be unethical!”

Unethical.

Let’s talk about ethics.

Let’s talk about the ethics of insurance companies that reimburse so little for mental health treatment that hospitals have no incentive to keep their psychiatric units open.

Let’s talk about the ethics of a mental health funding system that pays psychiatrists less than most other doctors so medical students enter other specialties in hopes of paying off their student loans before they reach retirement age.

Let’s talk about the ethics of having a psychiatric emergency room with no psychiatrists in it, ever.

Let’s talk about the ethics of naming psychiatric care “behavioral health care,” as if the issues were in one’s actions instead of in one’s brain.

What about my ethics? How ethical is it for me, as a parent, not to get my daughter the medical care she needs? It doesn’t feel quite ethical to go to sleep at night, posing as it does the risk that she may hurt herself when I am unavailable to supervise. No, that doesn’t feel ethically sound at all.

When Abbie dislocated her knee at school 18 months ago, an ambulance transported her from there to the ER. At the ER, they put her knee in place, put a brace on her, gave her a dose of pain medicine and a prescription for pain medicine to take at home, and we walked out with a follow-up appointment with an orthopedist for the very next day.

There is no equivalent care for a dislocated mind. There is no method to deliver care immediately to a person who is suffering deeply but who has not quite gotten to the place where she seals the garage, or swallows the pills, or puts a blade to a vital artery.

By all means, let’s talk about ethics. Let’s talk about the ethics of a mental health care system that meets the needs of such a small minority of suffering people that suicide is the third leading cause of death among teens and young adults in the US, in spite of the fact that most people with mental illness can be successfully treated with appropriate care, and 90% of people who complete suicide have a diagnosable mental illness at the time of their deaths.

I sure am glad the doctor who “treated” my daughter the other night got to protect his ethics. Now how about we get busy protecting people’s lives? How about we talk about systemic ethics? How about we talk about treating suffering that originates in the brain the same way we treat suffering that originates in the heart, the liver, and the bones?

How about someone out there with a prescription pad helps me keep my daughter alive? How about we all start treating this like the emergency that it is?

My daughter will get the treatment she needs. I found someone to see her in two weeks (still an outrageous amount of time, but we’ll manage), and in the meantime we’ll do what we have to do to keep her safe, somehow.

The same cannot be said of the nearly 40,000 Americans who will end their own lives this year.

There are no disposable people, but we sure as hell act as if there are.

Contrary to the Natural Order

Down, down, down into the darkness of the grave
Gently they go, the beautiful, the tender, the kind;
Quietly they go, the intelligent, the witty, the brave.
I know. But I do not approve. And I am not resigned.
~Edna St. Vincent Millay

Perhaps my family seemed a little callous on the occasion of my grandpa’s funeral. Maybe we laughed too much, too long, or too loud. We may have even seemed a little giddy in the spaces between our tears. But try to understand the relief of being in a world where up was up and down was down and people died when they got old. Try to understand the joy in feeling simple sadness. Clean grief – unadulterated by regret, unnatural timing, or despair – is a beautiful thing.

Life is instantaneous, and living is dying. ~Buddhist

I was two years old when my mom’s younger brother David died at a friend’s house after accidentally eating a cookie with nuts in it. The morning after he died, I was pulling a wooden duck on a string across my grandparents’ entry hall, the duck bouncing behind me on the stone floor. I loved that floor, the cool grayness of the stones, always icy no matter the season. I pushed open the door to the dining room and saw all the grown-ups at the table, crying into their hands. I closed the door and crept back across the stone floor. The huge poodles Homer and Buffy followed me into the bedroom and let me brush their hair.

Most things break, including hearts. The lessons of life amount
not to wisdom, but to scar tissue and callus. ~Wallace Stegner

Nietzsche said, “That which does not kill us makes us stronger.” Is it part of the human condition, this belief that we will always bounce? Because I’ve seen people shatter. What Nietzsche should have said was this: That which does not kill you makes you stronger, except when the thing that neglected to kill you breaks you into a thousand sharp shards, then grinds you into a fine powder before throwing you into the cosmic lake of fire.

These are the names of the people I have loved and mourned:

  • David
  • Nadine
  • Rick
  • Janna
  • Maxx
  • Mikhael
  • Gabrielle
  • Janet
  • Michael
  • Rachel
  • Tyler
  • Margaret
  • Howard
  • Tracey

Eyes that do not cry, do not see. ~Swedish

In early 1993, three months pregnant with my first child, I walked with two friends through the doors of a funeral home. A wall of noise slapped us hard, the sound of our friend Rachel. Rachel, who had brought her baby Gabrielle to my wedding just the week before, held her daughter’s body, two months old forever-more. Tears and snot and anguish ran together on her swollen face. I put my hands over my belly, found that I could not walk into the room with Rachel, knew that I would watch my baby sleep more than most new mothers do.

When death knocks at your door, you must answer. ~George Bernard Shaw

On a beautiful early spring Sunday morning in 1996, I stopped at a convenience store for a newspaper. The cover story in the Albuquerque Journal that day was about three young women shot to death in a car by one woman’s estranged boyfriend. It took me many seconds of squinting at the familiar face in the picture and the name underneath it before I understood that my friend Rachel had been murdered. She was 23 and her son was 2. The stone on Gabrielle’s grave was not yet marred by weather.

Life is not separate from death. It only looks that way. ~Blackfoot

When we entered the little flower shop – my sister and me, our parents, and our paternal grandparents – I’d known the facts of what happened for over 24 hours, though my understanding of what my aunt did changed a great deal as I grew older. What eight year old could have understood something so deeply wrong? On the evening of October 27, 1979, my dad’s younger sister Nadine went to the home of her soon-to-be-ex-husband. He wasn’t home so she let herself into the house and got his shotgun out of its case. In the garage, she sat down on the floor, put the gun in her mouth, and pulled the trigger, thereby moving the better part of her head onto the garage walls.

In the flower shop, my five year old sister Erin and I were tiptoeing through the floral arrangements, trying to find the perfect one for the coffin from just the two of us girls. There was a crash and a scream and by the time I turned to look my grandpa was putting his arms around my grandma and my dad was helping to hold her up. Erin put her thumb in her mouth and moved close to me.

My grandma screamed, “My baby! My baby! My baby! I’ll never see my baby again! My baby!” until she dissolved into wordless keening.

Over 30 years later and well into her fragile dotage, she has never stopped screaming.

This is how they died:

  • Cancer – 4 people
  • Suicide – 3 people
  • Murder – 2 people
  • SIDS – 2 people
  • Born still – 1 person
  • Congenital birth defects – 1 person
  • Asthma – 1 person

In the back of my closet, in an old shoe box, I keep a small, black purse – out of date, not my style, too small for all the things I usually carry. On top of that is another shoe box, this one the container for a pair of black shoes that pinch my toes and rub blisters on my heels. Sometimes I need to wear things that are black.

All of life is a dream walking. All of death is a going home. ~ Chinese

In 1987 I was 16 years old. I collected all the pills in the house and put them in a little gift box that had a circular, accordion folding lid. We didn’t have much by way of medicine, but I gathered what I could: several half-empty boxes of allergy medicine, a few muscle relaxants, some ibuprofen, a little cough medicine. Getting the pills down was not hard. Getting them back up burned like a motherfucker. I told no one what I had done for 2 years. When my family found out, they were not shocked.

Remember that your children are not your own,
but are lent to you by the Creator. ~Mohawk

A few hours after my eldest child Jacob was born, his warm body heavy in my arms, I looked at his father and asked,

Oh, God, the naïveté; can I even bear to tell it?

“Do you think our parents felt this way about us?”

They are not dead who live in the hearts they leave behind. ~Tuscarora

In a movie, when the bad guy hurts the woman’s child, it’s called the “rookie mistake,” because the woman will became the mama tiger and make the bad guy pay, and pay big, for hurting her child. What happens, though, when the bad guy is that night-thief of babies, SIDS? What does a mom do when the bad guy is inside her child, filling her body with misshapen, damaging cells? What does she do when the bad guy is her child, when he hooks the vacuum cleaner hose up to the exhaust pipe or puts a gun into her own mouth? What’s a mama tiger to do then?

Life cannot be trusted; death can come at any moment. ~Kashmiri

My son Carter, four years old at the time, was sitting on the futon outside my bathroom door, huddled in a green towel and waiting for me to finish my shower. I soaped and rinsed, made plans for our day, and suddenly felt a cold breeze.

“Carter, I told you not to open the shower door when I’m in here! It makes me cold!” I rinsed the soap from my eyes and looked at Carter standing in the shower door. He was clutching his stomach, above which his ribs were thrust out. He was using his abdominal muscles to move air in and out of his lungs, air that wheezed and whistled. He was blue around his mouth and his eyes. Fat tears rolled down his face and dripped onto his naked chest. When I put him back on the futon, he reached over his head and pulled down the curtains in his panic.

I called for an ambulance, administered medicine, sang to my baby, my baby, my baby, stayed calm. The paramedics arrived and filled him with magic fluids that let him breathe. He was so small on the ambulance gurney, a puff of smoke that could blow away at any slight breeze.

That evening I told a friend the story of our ordeal. She replied, “Wow, I bet you’ll never take his life for granted again!” I chuckled, hung up the phone, and never spoke to her again.

The only truly dead are those who have been forgotten. ~Jewish

On a visit to my Uncle Don and Aunt Marilyn’s house, I found an urn on the fireplace mantle. The urn held the cremated remains of my cousin Janna, dead ten years by then. Down the road, Janna’s sister, Sue, had a miniature version of the same urn on her own mantle. It held the ashes of her baby Maxx, taken just days after his birth. Down the street a little further and around the corner was the cemetery where the family had erected a large gravestone, silently waiting at the head of the empty graves.

Must not all things at the last be swallowed up in death? ~Plato

On Friday, September 14, 2001, I sat at my desk, numbly filling out receipts for the families in my daycare. It felt strange to do something so mundane, so ordinary, in the face of the world’s burning. When the phone rang, I expected another call from friend or family, another person reaching out to connect and counteract the growing darkness.

“Hello?”

“This is the Bernalillo County Sheriff’s Department. Is this Adrienne Jones?”

“Yes, it is,” and why is the sheriff’s office calling me?

“Is this the Adrienne Jones who was the daycare provider for…ummm…hang on…Tyler…yes, Tyler Madden who died yesterday?”

I gasped, put the phone down, threw up in my wastebasket.

“I’m sorry,” said the caller when I picked the phone back up, “I thought you knew.”

Two days later I sat in the passenger seat of our car while my husband drove, following the funeral procession from church to cemetery. We arrived at the burial site, helpless to do anything but bear witness to a little boy’s life and his parents’ pain.

Tiny coffins are an abomination.

This is how old they were:

  • 1 died before he was born
  • 1 died when he was a few days old
  • 2 died in their first few months
  • 2 died in their teens
  • 4 died in their twenties
  • 1 died in his thirties
  • 1 died in her fifties
  • 2 died in their seventies

When I was a young teenager I started babysitting for a family who had a toddler daughter and an infant son. Michael was a beautiful baby, TV-commercial perfect and soft. I watched him sleep when his parents went out to the movies and imagined that someday I would have a baby just like him. Even as Michael grew older and became difficult, I could see the baby I loved under his fear and rage.

When he was 13, Michael went to the garage and used a rope to end his life. I did not see it, but I imagined it (still imagine it; cannot stop imagining it) as if it was a movie playing on the inside of my skull over and over again – Michael’s mother, arriving home after running errands, pressing the button to raise the garage door. I wonder how many minutes or days or years it must have taken her to believe what she saw.

An old wound will not go away. ~Somali

The normal laws of physics don’t always apply. Some things can turn the world into a melting pool of red Jell-O, lacking gravity, direction, and air. Some phone calls make the earth rotate backwards for a moment.

Daylight will come, though the cock do not crow. ~Danish

I was driving home from work when my friend Janelle called me. “Pull over and turn off the car,” she said.

I knew that tone. My heart turned to sludge in my chest. I did as I was told.

“Tracey was murdered. Her friend was living with her, a girl whose husband was abusive. He hid in the bushes and when Tracey came home from work he hit her with a shovel.”

Our friend Tracey, as generous in life as she was in death, died on the front lawn of the house she shared with her husband and two young children. She lay there from 2 am until dawn when her husband woke and discovered that she had never come to bed.

Perhaps they are not stars, but rather openings in heaven
where the love of our lost ones pours through and shines
upon us to let us know they are happy. ~Inuit

Once I had a dream, a gift. I was sitting in a huge grassy meadow surrounded by the people I love who are gone. The babies cooed and giggled in the sun. The teenagers and adults sat in the grass near me, telling jokes and eating sandwiches and drinking wine.

The people who died sick were healthy.

The people who died sad were happy.

The people who died too young lived on.

Death is a black camel that lies down at every door.
Sooner or later you must ride the camel. ~Arabian

My sister Erin and I stood in front of our Grandpa’s open coffin, listening to our parents and our grandma playing with my daughter in the next room.

“He looks weird,” Erin said. “He’s not scruffy. He was always whiskery.”

“Yeah,” I laughed quietly, “Remember how you used to pet his scratchy face when you sat in his lap?”

“I remember better playing with his ears,” she said.

Now we both laughed, louder this time. Never in the history of humanity did any person have earlobes like my grandpa – long and pendulous, soft as putty, we played with them constantly when we were little girls. When he put a CB in his little yellow pickup truck, he used the call sign Old Long Ears because he knew it would make us laugh.

Forgetting myself, I reached for his ear, thinking I’ll just play with them one last time. The lobes didn’t move under my fingers.

“Shit.” I moved back. “I forgot.” Erin and I cried some more, holding hands, remembering him.

Erin lifted the curtain that hung from the bottom lid of the coffin. She cracked up, doubled over, holding her stomach.

“What?” I looked behind the curtain myself. “Oh, my God!” We held each other, laughing until tears streamed down our faces and I had to cross my legs hard so I wouldn’t pee. My grandma, child of The Great Depression, exquisitely frugal and equally generous, had not wanted to bury a “perfectly good pair of pants when some men don’t have any.” So Grandpa went to his final rest in a flannel shirt and a pair of orange plaid undershorts.

We gasped for air and wiped our eyes. “Ah, fuck, you know?” I asked.

“Yeah, I know. He loved us. Like, loved us deluxe. Crabby old bear thought we were perfect.”

The next day, my grandma reached across the kitchen table and grabbed my dad’s ear. She pulled – hard – until they were nose-to-nose. “I am next,” she said. “Understand?”

My dad – a boy again before my eyes – answered around a lump of grief. “Yeah, Mom.”

Suicide’s Shadow Is Long

I was a healthy baby born to ordinary parents.

By “ordinary,” I mean to say that my parents were fucked up in fairly pedestrian ways. Mom sometimes got depressed; Dad occasionally drank too much. Nothing all that unusual.

Tap dancing in the garage with my sister Erin.

I was a pretty little girl, but I didn’t know it. I didn’t think I was ugly, either; I just didn’t think about it at all.

I was shy and serious by nature, often accused of being stuck-up by my peers, but I was also enthusiastic, creative, and bright.

I loved both my parents, but I was especially bonded with my dad.

Life was far from perfect. When I was 2 1/2, my mom’s younger brother David (just 19 at the time) died suddenly of an asthma attack.

My mom had that aforementioned tendency toward depression and my dad was busy redefining the word overachiever. My parents had baggage and our family was far from perfect.

Like all families.

Life wasn’t always fun, but it was predictable. The people who said they loved me usually acted like they loved me.

My Aunt Nadine said she loved me.

I was 8 years, 7 months, and 3 days old when she put a Smith & Wesson shotgun in her mouth and pulled the trigger.

Did she think about me? Did she wonder, when she felt the barrel of the gun against the roof of her mouth, what this unspeakable act would do to me?

Did she think of what it would do to my little sister, Erin?

Did she think that we would be better off without her?

Because she couldn’t have been more wrong.

On October 27, 1979, Nadine smashed everything that was ordinary and predictable about my life.

I lost my dad to the demons he would fight for many years to come. The special bond we once shared has never recovered.

I lost my mom as she struggled to keep my dad alive and our family together.

I was clothed, fed, and educated. I went to the dentist and the doctor. I had clarinet lessons and dance classes.

But life, suddenly, was painful.

I became exquisitely self-conscious about my appearance.

All that was wide-eyed and curious about me became cautious.

Within months, I started pulling out my eyelashes.

I withdrew from life and into books.

I started to use food to cope with my feelings.

I learned to protect myself by holding my heart in reserve. I can say goodbye to almost any relationship without so much as a backward glance.

I’m an adult now and I know that suicide isn’t as selfish as it seems, but few acts cast as long a shadow.

I assume she didn’t understand that.

I hope that, if she had understood, she would have done things differently.

I hope.