Many years ago, on a rainy morning in February, my 27-year-old self called my mother to let her know I had been diagnosed with depression. It was long enough ago, that most people’s reaction to this news was still based on the misinformation and stigma swirling around mental health. But I wasn’t worried about telling my mom, she was a psych nurse. Solid. Still, it was a hard conversation and, in an effort to protect her or maybe myself, I left out the part about suicidal ideation.
I was lucky. I took a really safe pill once a day and after a few (hard) months, I felt normal again. So, her insistence that I at least try to see if I can live medication free led to many jaw-clenching, frustrating conversations. But she spent her days seeing the results of a lifetime of mental illness and she wanted me cured, not treated.
Last year, after some crisis or another, my son’s doctor stared me straight in the eye and said, “We can’t cure him, but we can treat him.” At that moment, I remembered those fraught conversations with my mother. It was one of those moments when her past behavior made sense to me in a way I had been too young or too inexperienced to understand at the time it was happening. It was probably due to those conversations that I didn’t feel like I was slapped in the face by the doctor’s words. Instead, they crept into me and I felt them rather than heard them. Not to be too mystical, but I pondered them in my heart. And this was new for me. Over the course of my son’s disease and treatment, I have at different times over-reacted,under-reacted, intellectualized, dismissed, laughed, and cried at whatever news the person in the white coat threw at me. But I rarely possessed enough energy or context to really figure out what it all meant. This time, for some reason, I did. And the results were powerful.
Once I accepted that crisis was just part of the disease, I feared it less and began dealing with it better. Kind of like how you get used to being puked on by your infant so you just plan for that eventuality and are ecstatic every time it doesn’t happen when your late for a meeting. Acceptance has made me calmer. I feel less frantic when I recognize this is a long-term struggle and we are all doing the best we can. I still don’t know how to answer the question, “how is your son” but I am less frustrated by it. The answer -that mental illness and addiction are hard and we are taking it one day at a time- no longer feels awkward. I can even say it with a smile.
I have also found time and energy that I didn’t have before. When I’m not constantly searching for a cure that doesn’t exist, my effort dealing with this illness is more focused and gives me more down time. I have even started gathering up the threads of my life that were lost to the storm of emotion surrounding his illness. Coffee with friends and no tears, finally! All this because of a few honest words from a physician that I took the time to absorb instead of react to.
Don’t get me wrong, I’m still not happy about it—this illness. Sometimes I still get angry about it. I mean teeth grinding, fist clenching, plate throwing angry. Other times I’m just despondent. But, once I accepted it as the reality, I felt a lightness and freedom that hasn’t been mine for over 5 years.
Coming to terms with a no-cure scenario isn’t unique to mental health conditions, but it has been a huge stumbling block for me. I wonder why it took me so long to accept this? Maybe because this all started when he was only 15, and I felt like giving up on a total cure was giving up on his future. It wasn’t. It just meant re-imagining it, and watching it unfold in ways I would have never expected. Maybe it was because I wanted my life to get back to normal and, when you’re in crisis, it takes awhile to realize normal isn’t a thing. My life is just my life, my reaction to it is what transforms the situation. Most likely, though, it was simple denial. Like my mom, I wanted a cure. I can’t get what I want, but I’m strong enough to accept treatment, and happy to reap the unexpected benefits of acceptance.
As a society, we don’t understand suicide. Everything in our DNA works to optimize our chances for survival so, when someone appears to have chosen to die, we struggle to make sense of it.
When Kate Spade died by suicide a few days ago, I faced it with the same dread as I have faced all suicide reports since April 2017. That was when my child didn’t complete his own suicide attempt. I don’t know why he was lucky, why we were lucky, and he survived. I don’t know the difference between Kate and my son. Just like I don’t know the difference between breast cancer patients who die and those who survive.
But I do know suicide is a brutal, tragic way to die. And, it is not a choice. Depression, only one of the many conditions that can lead to suicide, is a disease. Sometimes it’s treatable and sometimes it’s treatment resistant, just like cancer. Imagine if Kate Spade had died from breast cancer and someone felt obligated to post the following online:
“Kate Spade is incredibly selfish and Horrid! To die of cancer and leave behind a vulnerable child that needs her mother.. (sic) such disgusting assholish decision! No amount of “cancer” should surpass the love of your child. She’s ruined her life! What a selfish bitch.” –random twitter expert
KateSpade is incredibly selfish and horrid! To murder your oneself and leave behind a vulnerable child that needs her mother.. such a disgusting assholish decision! No amount of “depression” should surpass the love of your child. She’s ruined her life! What a selfish bitch! pic.twitter.com/UjTT4tyGLy
I find it hard to imagine anyone writing and posting such a sentiment, yet armchair mental health experts have taken to the twittersphere to shame a woman who died by suicide. There are more tweets, of course, but they are all subtle or not so subtle variations on ‘she was selfish, weak, didn’t really love her child, and depression isn’t a thing’ theme. And then, of course there was the amazingly tone deaf pronouncement from Bethenny Frankel:
“Poor @katespadeny to be in so much pain. Success doesn’t make you happy. True love & peace does.”
As if sacrificing her love and peace to success was the cause of Kate Spade’s death instead of it being a result of a serious disease. Once again, we would never say such a thing to someone who had just died from a heart attack. When families beg for privacy after a tragedy like this one, these are the kind of things they want to avoid.
Along with PTSD kind of feelings for those who have had similar experiences, these tragedies illuminate the ignorance and stigma surrounding mental health disorders. On the rare occasions I have shared information about my son’s suicidality, I have been met with every reply from, “but he doesn’t have anything to be sad about” to “doesn’t he know suicide isn’t the answer.” What people don’t understand is most victims of suicide are not asking a question or looking for an answer. They are looking to end overwhelming anguish. Whether it’s real or not to you, it is excruciatingly real to them. And imagine how much pain someone must be in to be driven to attempt suicide in order to stop it? Marsha Ainsworth put it most succinctly when she observed, “Suicide is not chosen; it happens
when pain exceeds resources for coping with pain.”
Although many people seem to agree we need to end the stigma surrounding mental health conditions and suicide, there are very few tangible suggestions provided. For me, the first step is empathy and listening without judgement. Every completed suicide is different, every suicide attempt has its own unique history. To treat them all the same is to place another unneeded burden on the family members who are already reeling from the death or critical illness of a loved one.
So, before we go online and start passing judgement on victims of disease, before we start throwing around #selfcare, and telling people to reach out to a friend; maybe we should have a fact-based discussion about why suicide results from a disease, not a choice.
There are some great resources available for people willing to do even the barest due diligence. Dr. John Grohol, Psy.D. has an excellent blog post about it at PsychCentral. NAMI (National Alliance on Mental Illness) has a great stigma test at curestigma.org, with info on how to support people who suffer from suicidality. And there are countless local resources as well like this one from StopStigma in Sacramento.
I understand suicide and depression. But, I only understand it as it has manifested in my own life and the life of those I love. We need to listen to other perspectives and try to see with different eyes to come to a place where there is compassion instead of stigma. And this is hard. It’s hard because it is work, and it is awkward, and the topic is so charged.
But, suicide is the 2ndlargest cause of death for people between ages 10 and 34, and it’s a leading cause in older age cohorts as well. On average, 123 Americans complete suicide each day. Those are numbers worth taking seriously. We need to have substantive conversations, because stigma is one of the greatest barriers to treatment.
My understanding of suicide and depression is deeply personal. In addition to parenting a son who suffers from suicidality, I have experienced suicidal ideations off and on since 1992. For me it runs the gamut from actually envisioning myself taking my own life to just a random thought that running my car into that train would be a good idea. I have a very OCD element to my disease. Figuring this out with my doctor helped find the right treatment for me. I’m lucky that my depression has not been treatment resistant.
But, it’s a long-term illness and medication’s effectiveness can wax and wane with natural life changes (i.e., The Change), ordinary life stressors (lack of sleep, lack of exercise), and extraordinary stressors (serious illness, death in the family). Depression is insidious. It sneaks up on you and silently overpowers you, until you don’t even realize it’s not normal to think getting out of bed takes just as much effort as running the Boston Marathon.
This is what it is like. For me. For my son it is different, for Kate Spade it was different, as it was for Anthony Bourdain, Delores O’Riordan, Robin Williams, my friend Wade, and on and on for so many others. We need to quit typing, and start listening.
Celebrity suicide brings its own special considerations. The O’Riordan death was very concerning to me. My son is a fan of the Cranberries, and it happened in close time proximity to his own attempt. I was worried that the reporting on it would trigger a setback in his recovery, or even lead to suicide contagion. The CDC has found increased rates of suicide centered populationally around isolated incidents (such as a suicide on a high school campus) and temporally in the months immediately following a widely reported incident (such as a celebrity suicide). Irresponsible reporting has been so closely linked to this contagion that the CDC developed responsible reporting guidelines in the mid-1990s.
In the aftermath of the Kate Spade tragedy, CBS wasn’t the only outlet to have ignored CDC recommendations for responsible reporting by describing details and mechanics of the Kate Spade tragedy (and I am not linking here because I have no interest in their irresponsible coverage receiving more clicks). TMZ used click bait headlines warned against by the CDC, and US Weekly, NBC, St. Louis Post Dispatch and myriad other media outlets chose to ignore the guidelines in their reporting. Some even felt it necessary to note the place and color of the item that was used in the tragedy, I’m assuming to pique some sort of prurient interest and to increase the chance of a click through.
It is worth noting both the Washington Post and the New York Times’ first reporting followed the CDC guidelines. Revisiting CDC recommendations in our new algorithm and click driven media environment sounds like a good idea. Although Anthony Bourdain’s death cannot be definitively linked to suicide contagion, his suicide following so closely on the heels of Spade’s brings a new sense of urgency to the problem of suicide reporting.
The internet has given us new and infinite ways to be horrible to each other. But it has also given us a powerful tool to help end stigma surrounding mental health conditions and suicide. If we can use it responsibly, maybe we can help save a life.
My late father-in-law had a pedantic penchant for Latin. If he were alive today, he would describe 2017 as annus horribilis. And, I would agree with him. That’s not to say there wasn’t a bit of mirabilis in it, there was loads of that too, but it seemed that the hard stuff in life had its thumb on the scale in 2017.
As a consequence, I wasn’t feeling very reflective or hopeful when I woke up on the first day of 2018. There is nothing magical about the turning of a new year. There is nothing new or blank about it. There is only the magic, and the new, and the blank we decide to bring to it.
So, around 3 pm when I went to meet friends at the tides-willing annual New Year’s Day transitioning labyrinth on the beach, I wasn’t expecting to do anything except recharge a little by watching and walking with my fellow Encinitas weirdos. To be honest, there were some perfectly un-weird folk there as well, but I’m a sucker for weirdos. They are the light-bringers in my life.
The energy I was looking for was generated by a bunch of people massed around a labyrinth cut into the beach at low tide by a local artist.
The artist, Kirkos, used his special tools to scrape the sacred geometry into the sand and the community came to decorate it with rocks and seaweed and sticks, Buddha statues and crystals and flowers, along with shells and rusted keys and random objects like the tiny gingerbread house with sliced banana for roof tiles.
Not unfamiliar with walking meditation, I finished exchanging New Year’s greetings with random and not random people and entered the labyrinth path intent on a peaceful walk to the center.
There are people in the labyrinth community who say the labyrinth is an ancient symbol that relates to wholeness. I’m not so sure, but this one felt mystical. One of my favorite words to describe it is unicursal. There is one way in and one way out. Just like life. And, just like life, this labyrinth was filled with a lot of people—some who made it harder to walk and some who made it easier.
I’ve been struggling to give up judging, but it’s hard to not judge when people bring their dogs to a crowded labyrinth on a no-dogs-allowed beach. It makes it hard to stay on the path when a puppy is rampaging around it and disturbing the lines so carefully carved into the sand by the quirky old artist. I breathed through my initial discomfort with the irresponsible dog owner (the puppy, of course, was innocent of any wrongdoing) and refused to consider it good or bad. I was somewhat successful. I was more successful not judging the children running through the labyrinth. They made it hard to walk as well, but they were just so fully being themselves, it was hard to be irritated with them. When a parent apologized for one of them bumping me, I just smiled and said Happy New Year, then tried soaking up some of their enthusiasm for life.
As I walked, I tried to focus on the year just past. My plan was to think about 2017 on the way in and think about my intentions for 2018 on the way out. I’m a little obsessive, and like things tied up in neat metaphorical packages. But early on, I wasn’t able to focus on anything other than the people talking, and children playing, and the dog charging to the center with no regard for the path or the decorations placed at the line ends. And, I couldn’t stop watching the ten-year old girl in the black hoody with cat ears on the hood and the words “I am a cat” emblazoned on the front. I really wanted to be that girl for a moment.
I was also concerned the doggo would eat the gingerbread house, in which I had already invested a fair amount of emotional energy trying to figure out. The banana slice roof tiles were odd, was it supposed to be a bird feeder? Or was it purposely built to be healthy, and if so why does it have to be healthy if nobody is ever going to eat it? If you are a health food extremist (we have a few in California) does that mean you can’t even use candy for decoration? Or was it just a spur of the moment gingerbread house and the only thing handy to decorate it was yogurt covered pretzels and bananas?
This last one seemed most plausible to me, as it described my life when my children were still interested in building gingerbread houses. There may be only one way in and one way out of a labyrinth, but there are endless paths that my mind can take while my feet are walking it.
Frustrated that my mind wasn’t cooperating with my plans, much like my life doesn’t cooperate with my plans, I gave up when I saw my husband walk onto the beach with the camera. Like that adorably annoying dog, I ignored the path and lines and headed straight toward him. He gave me the camera and told me he was headed to work to get some writing done. As he was leaving, my son walked up with his friends. We (and by we, I mean I) talked a little about leaving the hard part of the year on the labyrinth. Quickly tiring of my hippy mumbo jumbo, they left to pursue New Year’s tacos somewhere with less weirdos and less mom.
In the course of this one-sided conversation, I became fascinated by the idea of leaving the hard shit of the year on the labyrinth and letting the ocean take it away as the tide erased the carvings from the beach. I knew I couldn’t actually get rid of the hard stuff, but maybe I could put it in a more productive place.
So, I quit thinking about the hard stuff and started listing it. My son’s suicide attempt, the hours in the hospital listening to the monitor go off whenever he stopped breathing, my uncle’s death which brought peace to him and anguish to so many others, the long wait at LAX when I was unsure if they would let my son on the plane and if so whether he was safe to be on the plane, the hurt and anger in my daughter’s eyes when her trip to visit colleges back east was canceled due to yet another mental health crisis, another trip to the emergency room listening to the fucking monitor stop and start again echoing my son’s erratic blood oxygen level, my father’s emergency surgery, the lies, the fear, the careless words, the carefully constructed words used as weapons.
Everything I could remember. Every feeling and action that caused pain or suffering or even mild discomfort, I named it. I looked at the year from my husband’s perspective and named all the shit. I did the same from my daughter’s point of view, then my son’s. Everything I could think of.
I listed it, acknowledged it, and willed it deep into the sand path I was walking. I kept doing this as other walkers scooted past my slow walking pace, as children bumped me, as strangers said inane, belittling things about disruptions on the path misaligning chakras. I felt the muck of 2017 crack like a hardening mud mask and begin to fall away.
By the time I reached the center, I felt relieved of a burden. I felt lighter and almost content. I began to notice the careful placement of shells and flowers. The happy juxtaposition of the gaudy, natural bird of paradise flowers with the gaudy, unnatural plastic pin wheels. My lips curved into a smile without even trying. And I began to recall some of the good as well. I remembered the healing suicide prevention walk I did with my son, our time at The British Museum, our fairytale cottage in Meath, the inspiring women and charmed time that was my writers retreat, and the random happy accident of watching Loving Vincent together at La Paloma.
On the way out, I kept passing an older man with a few missing teeth and the unruffled demeanor of an Encinitas native. We smiled at each other each time we crossed paths in the labyrinth. He commented on how long the walk was. I smiled, for me the walk was just long enough. Once I made it out of the labyrinth, I looked up and noticed him walk to where the artist’s tools were sitting and begin to gather them up. I realized the man I had been smiling at was the artist himself.
I walked up to thank him for his effort and, as I shook his hand, he told me he usually doesn’t walk the labyrinth himself. But for some reason he did this year and was surprised by how long the walk actually was. I thought a moment about creating this space, this transient sacred geometry without even the intent to walk it yourself. And when I looked back at his creation I saw his generosity multiply and bubble over in the faces of those participating in this private act of public art.
I told him I liked the addition of the two smaller labyrinths he added this year. He nodded, thoughtful, and mumbled, “yes, each year it just keeps evolving.” Which reminded me again, that labyrinths are very much like life.
Did you sit through Thanksgiving a little bit grateful but also a little bit sad? What if you are entering the holiday season in the midst of a crisis relating to your child’s chronic illness? Or a loved one’s catastrophic diagnosis, PTSD or something else that makes you totally unfit to enter into the spirit of the season?
That’s me at the moment. Thanksgiving has come and gone—even Nordy’s finally put up it’s Christmas decorations. But here I am not feeling at all Christmassy.
What to do?
Well first, if you’re me, you check to see if Christmassy is really a word and if you have spelled it correctly. Then you come up with rules to survive this season of joy, even though you feel like you haven’t been capable of joy in quite some time.
#1 Fake it
I was talking to my sister around Thanksgiving. She was asking about my son who spent a few weeks in the hospital before being transferred to an inpatient treatment program. When she asked how I was doing, I was too tired to be anything but honest.
Tired and sad. Empty. That’s what I told her.
Shocked, she claimed I sounded so good. She thought I was doing really well.
I told her I was faking it.
Sometimes when you act like you’re fine, happy even, you can trick your brain into believing it. If it works, you can scrabble together some of the energy you need. Even the simple act of smiling can trick your brain into thinking you’re happy.
This fake it ‘til you make it strategy is based, in some respects, on science (see, for instance, here or here), and I have found that it works pretty well to get through short term social engagements. Especially those I want to go to, but don’t feel like I have the emotional stores to make it through dry-eyed.
This was the strategy I used for Thanksgiving. Sad and tired notwithstanding, I wanted to go, I wanted it to be an occasion filled with love and laughter. So, I faked it. I forced smiles and laughs until I was really smiling and laughing. As I faked my own joy, I was able to openly connect with my friends and family. I was able to feel true delight at our friends’ engagement, real enjoyment in food lovingly prepared. I left feeling genuinely thankful for so much.
One caveat, you have to make sure it’s the happiness you are faking. It doesn’t work if you are just burying the sad you feel. You have to honor the sad and then make a point to enjoy your time with family and friends.
#2 Lower the bar
I’ve been working on lowing my bar for a while. I remember a few years ago I was asked how I was doing and instead of throwing out a reflexive, I’m fine, I thought for a second. I realized both of my children spoke to me and that makes a great day.
Not good. Great.
My expectations frame how I perceive my life. So, I pare it down to the barest essentials. Now, I don’t even need the kids to talk to me for it to be a great day. Today, it’s just that the kids are alive. And, given the fragility of life, I know it’s possible I may have to lower it even further.
“But, Gigi,” you say, “my bar is already on the ground, how can it get even lower?” And to that I say, “get a shovel.” It can always be lower.
#3 Re-evaluate your priorities
Just because you have always had a Christmas/Solstice/Hanukkah party at your house, doesn’t mean you have to have one this year. Just because your family loves your version of holiday feast, doesn’t mean you can’t just go to Red Tracton’s and let them do the cooking, serving and cleaning up. Take a look at your holiday traditions. Decide which ones have real meaning to you.
For me, it’s always been the tree.
I have a tree decorating ritual, complete with cookies and champagne.
It’s a little obsessive, I admit. After the tree is up, I string the lights, then wind the ribbon around it. Next, the angel goes on the top.
After that, the kids get their new ornament. We give them one each year, even now that they are 16 and 19. My mom did this as I grew up. When she finally sent them to me after I got married, I relished putting them onto my adult tree. It acknowledged my old traditions at the same time I began creating new ones with my husband.
She continued this tradition giving each grandchild an ornament every year. Now, we each have our own large collection. We take turns placing them on the tree until it’s full and my husband says we have too many and need to scale back. After that, I try to balance the aesthetic and fill in the holes with the red blown glass balls which my husband claims don’t fit. Then we stand back and admire our work.
That’s it. A perfect holiday for me. We have done this exactly the same for 18 years or so. I thought it was required to make our holiday perfect.
Until last year.
Last December I was barely functional. I was dealing with migraines, and vertigo and my own mental health issue. School carpool and my doctor’s appointments were almost the only reasons I would leave the house.
It was our first half-assed Christmas. The tree went up just a few days before Christmas, we didn’t even decorate it until Christmas Eve. No cookies, no champagne, no pictures. No ribbon, just lights. We picked out a few ornaments and didn’t bother with the rest. And even though there was plenty of room, the blown glass balls stayed in their box.
And I still had a perfect holiday.
It wasn’t the ritual or completed tree that was important. It was just us being in this together. That space of time we took to be with each other. I recently talked to the boy about last year’s half-assed tree and he remembered it as a great tree.
We will probably have a half-assed Christmas this year too. I’m redefining perfect in ways that have nothing to do with gifts, decorations and traditions, and instead revolve around space and time carved out to be grounded with those I love.
Sometimes half-assed is perfect, you just need to reevaluate your definition. Distill what you need to make meaning of this season. You will be amazed by how much you can let go.
#4 Give your time to your community
Time is always a precious commodity during the holiday season. The theory of relativity never seems to work in my favor in December. But if you spend your time helping others, it can ground you in the meaning of the season. And, if you’ve followed number 3 above, you will have lots more of it.
It’s sounds counter intuitive, but it is backed up by science. Volunteering has positive effects on the volunteers mental and physical health. (like this from Harvard). Do yourself a favor and take a shift at a local food pantry, organize a toy drive for foster kids, take time to play with some Head Start kids. Smile at strangers.
#5 Quit reading lists of how to survive the holidays.
The stones and shell already crowded my pocket by the time I saw the sign forbidding it.
But it didn’t matter. This was my renegade week. There were 13 women back at the cabin to prove it. All of us had wandered away from life to wonder a while with words. And each other.
I hadn’t really wandered. I had flown away to be with them. In community. But here I stood, alone on the beach, with purloined rocks and one shell.
I was a mere shadow of myself, wondering where I had disappeared to.
I wasn’t surprised. His disease had been erasing me slowly for years. Yet, it was a shock to see the process almost complete. I had thought there was more of me left.
I put the stones in my pocket to weigh me down. To keep me from floating away on the wind. I would take the small stone and shell home with me in a few days, one for each child.
The other stone was for Shanna. Because I had her truck and thought she needed a tangible reminder that this week was ours. A smooth polished black pebble, with a thin white vein, to remind us that the hard is necessary to see the light.
As if we needed reminding. I should have grabbed a pebble for everyone in the cabin. We had all lived that lesson in some form, it’s part of what connected us. But I couldn’t leave with thirteen illegal pebbles. I’m not that much of a renegade.
I wanted to bring one for Sarah. Since, when the numbness finally wore off, she hugged me and made me cry on purpose, and she poured me a shot instead of hitting me, and because she listened to Graceland in the kitchen while cooking. But, I didn’t want to trivialize this with a thing. Instead, I stacked a cairn for her and added the weight of the view to the stones already in my pocket.
I felt myself fill.
And when I got back to the cabin, I grew fuller. Not because I wrote- I didn’t- but because I read these women’s words. And laughed at their jokes, and cried at their losses, and railed against their pain. I breathed in the glee of their delight as if we had all just received word of a newborn nephew. And I meditated with their voice until I could feel every disparate part of my body connect, and I was substantial again.
Until intimacy and inside jokes overfilled my pockets and gold filled the cracks in my chest.
I don’t have pictures from Mother’s Day last week. We didn’t have any special celebration.
We are fragile. We are feeling fragile. We are not up to noise, or cheer, or talking. We are over talking.
For the moment.
So we went to the mountain that is not really a mountain. And we held hands while we walked silently.
One step, two steps, breathe in. One step, two steps, three steps, breathe out.
Hand in hand with the two who define my motherhood. Left foot, right foot, left foot, right foot.
When I got distracted by my thoughts, I just went back to left foot, right foot. I realized I still mix up my right and my left. I laughed.
When our hands got sweaty we released and walked on our own. Left foot, right foot. Someone behind me was talking about cats. I got annoyed. The only directions we received: no talking. I needed to get back to walking. I had to let my annoyance float away. It was hard.
One step, two steps, breathe.
I missed the soft skin of their hands in my hands, I reached for one again. I felt love, and family, and peace. I remembered a book, Peace is Every Step. How long ago had I read it? Why wasn’t I reading it now? I let it go and went back to my walking.
One, two steps, breathe in.
My husband’s knee couldn’t make it up the hill so we were three, not four. There were over a hundred of us, but for me it was only us three. Warming up as the sun melted the mist, and breathing harder as we headed up a steeper hill. I got tired, but still I walked and counted and breathed. The road was rough and pocked with holes and ruts. The hand I held steadied me. A subtle role reversal, but I noticed.
One, two, three steps, breathe out.
I thought about the Dharma talk we had just heard. Imagined finding the baby Buddha inside me, waiting for me. Like honey inside a swarm of bees, he said. Isn’t that nice? Or the seed hidden in the very depths of the flower. Much nicer I thought.
We are all mothers of the baby Buddha inside us, he said. We just need to have a clear mind and access, and… And something else he said. I couldn’t remember. The talk was peppered with words in a different language, in an accent I couldn’t quite penetrate. Like looking through a dusty window and trying to comprehend the beauty of the meadow on the other side. I could make out the shape and color of the flower that was his talk, but couldn’t quite see its delicate structure or catch its scent.
Come back, breathe, walk.
A few people stopped walking and began staring at the bushes, pointing out something they had seen to others. I thought of the sign posted on the way in, “Be mindful of toxic snakes and insects” it said.
I love that sign. Every time I pass it I want to take a picture. But I never do.
Right foot, left foot. Be mindful of rattlesnakes.
Then we continued down, down, to harmony grove.
A small stand of trees beside a dry creek bed. Flowers were everywhere. A small statue waited to be washed with flowers and water. Everyone had the opportunity to pour the sweet water on the statue. The symbolic bathing of a child, the nurturing of the peace within us.
When we met back up with my husband, their father, we were indeed home. We had arrived. And, in that step, there was peace. And maybe we were a little less fragile.
I try to be mindful as I drive, let thoughts come and go as they please, but I’m not always successful. So tears tend to hit while I’m driving. When I am alone with my thoughts the reality of what is ahead grabs me and yanks until the knot pulls so tight it can never be undone. And that reality is the fact that this is my new normal. One moment walking happily along feeling like all is on the right track, the next being smacked in the face with the fact that things are very, very not okay. Suicide, overdose, death from anorexia—these all are not unreasonable ends to our story.
But so is recovery.
Recovery is not an unreasonable end to our story.
And that is my new normal. The fact that one is just as likely as the other. Or if not just as likely, they are all as much out of my control.
So, I really try to hold onto the hope of recovery, especially in the midst of relapse. But I am not sure that there is anything I can do to influence the outcome. I used to think there was, but I’m beginning to think that there is nothing I can do to make it better, the only real influence I have is to make it worse.
And that, more than anything, terrifies me. How am I making it worse? How am I coddling? How am I enabling? How am I helicoptering?
What is the line between any of those and compassion when faced with your child in agony?
My child, a heartbreakingly depressed young man trying to hold on. And trying to move forward.
Yesterday I came home from one of these driving episodes crying. Distraught over this relapse, this new normal of ours. I collapsed on my husband’s chest and sobbed, “I can’t do this.”
He looked at me and said “Yes. You can.”
My initial response was a snort acknowledging the cold comfort of the truth. Then I let my thoughts wander for a minute and remembered a recent phone call with a friend.
Of course, we can do this, we are already doing it, she reminded me. And we have been doing it for some time now.
This is our new normal. This working and fighting for recovery. For wellness. For peace.
And she is right. We are doing this. We have been doing this for almost 4 years. And we can keep on doing this.
I can do this with my friends who are in the same boat (or at least a similar one) with me. I can do this with my friends who have been there all along. I can do this with my new friends who have come my way because of this journey. I can do this with my husband of over 25 years. It doesn’t matter that we aren’t on the same page. Sometimes just reading the same book is enough.
I looked at my husband again and said, “I don’t want to do this.” And this is true as well. I don’t want this to be my reality. I want a different normal back. Of course, this is where the friction lies. This is where I get caught up over and over again. This is what saps my energy.
Instead of fighting for recovery I am fighting against what is.
Intellectually, I know this is senseless, but my emotions won’t be won over by petty things like facts.
So, I go back to my DBT workbook again. I review, redo, reevaluate the handouts on radical acceptance, and say to myself, “our son has a serious mental health disorder that could lead to his death.”
Take a breath. Figure out what to do with that.
And I remind myself again that this acceptance doesn’t mean I am okay with it. Doesn’t mean I am happy about it. It just means that this is what my life is at the moment. This is part of what my life is. This is the reality that I have to work with.
It doesn’t mean anything, it is just my current reality. So, I start again. I start again reviewing my skills, my supports. I start again practicing skills that build my resilience. I start again practicing skills to take care of myself, to keep myself well. I start again learning boundaries, and emotional regulation, and effectiveness. I start again researching ways forward that we haven’t thought of before.
I start again.
I can do this. I am doing this. I will continue to do this. As messy and inelegant and as hard as it is.
I can do it because my child is worth the fight. Because my family is worth the fight. Because I am fightworthy, even when I can’t do this.
So the boy turned 18 and the earth didn’t end. Or shake. Or change at all really. It just went on spinning, taking several more turns around the sun, and the son seemed to take it all in stride.
A few weeks later he graduated.
It seems a milestone has been reached. I’ve technically lived up to my parental responsibilities. Although practically, I’m fairly certain you are never done as a mother.
I think he may have been expecting something more definitive. Myself, I was just sort of relieved.
So he is an adult now. But there wasn’t some magical switch thrown that will allow him to make “adult” decisions. It didn’t come with an extra tool box filled with “adult” tools. He still has what he had, still is what he was the day before, and yet he is different.
The perspective is different.
The expectations are different; the social contract has totally changed.
He has rights that he can exercise if he chooses. He has responsibilities that he must take on now, and some he can let slide until he is in college. The Selective Service reminded him of one of these with a letter that arrived on his birthday. The county registrar of voters reminded him of another when his first official election ballot arrived in the mail.
I see him picking up those responsibilities, and more, in fits and starts. I’m hoping that he takes them a little more seriously than he takes his responsibility to clean is room.
Currently, it appears that he does.
When he was signing the consent forms at a post birthday doctor appointment, I could see him come to the realization that he is now in control of his health decisions and his information. He had a detailed discussion with the doctor about what would be disclosed to me if he chose to sign the consent and what would be the practical implications if he didn’t.
He joked about sending me out of the room.
He really meant it though.
I’m glad he resisted. He is an adult, but we are still on this journey together.
He has a new lens for viewing his decisions, and I can see it is empowering to him. It’s exciting to see him finish one journey and prepare for another with this new view, and watch him adjust to what he expected and what actually is. I can also see the Pandora’s box aspect of it, but that is something that I gave up thinking about a while ago.
We have never tried to protect him from the real world and real world consequences, figuring that learning from them is the easiest way to go about learning to adult. Although, we have tried to incorporate mercy into the process as well.
His journey has been more fraught with danger and more torturous than we would have ever wished for. But he has risen to the occasion that no child should have to (and yet so many must) with more resilience and fortitude than I could have imagined.
My sister is in the same temporal place with her son, but she told me she has been crying lately. I understand that, but I’m not there. It is an amazing thing about trauma, it drags you into reality—ready or not. It challenges ingrained behaviors and pushes you to see other perspectives.
I guess I would have preferred the slow, dawning realization. Perhaps I would have found myself crying gently at the thought of his next adventure and tiptoeing cautiously between his 18th birthday and his graduation date.
Melancholy and excitement sharing the same space.
But that was not to be. I’ve already had to say good bye to so much during this recovery process, I feel like I have already done a large portion of the work of leaving the boy he was behind.
And at the same time I am able to hold on to that boy and realize, he is who he has always been. His diagnosis doesn’t change who he is, it doesn’t define him.
Like all of us, only this moment defines him. And in a second, it will be a different moment. His actions will demonstrate his heart, his inner light, his joy. As he has done in the past, he will make mistakes and, hopefully, he will not let them define him anymore than he allows the labels people try to attach to him.
And although his childhood has come to an end, I find myself hoping that he won’t totally lose the childhood perspective on life.
The possibility, hope and anticipation of his four-year-old self. I want that to stay with him, to be in a place where he can find it when he needs it most. I know he is going to need it.
A few years ago he asked me what I wanted him to be when he grew up. “I want you to be happy” I replied. “I may have some ideas about what will make you happy, but in the end, you don’t have to do them, you just have to find your own way to happy.”
I probably could have given more specific hopes and goals but I couldn’t have given more honest ones. I truly don’t care what he does with his life as long as he finds fulfillment and meaning. As long as he creates joy and lives happy. Accepting that sometimes you have to slog through the hard to just even taste the good. As long as he makes his journey count.
Although I know those are all subjective and judgy, I’m pretty sure I will know
them when I see them.
He has the advantage (or perhaps disadvantage) of knowing that life is not always easy, things are not always fair, sometimes you get dealt a bad hand, and you just have to go with it and make the best of it. He is farther along the road to happiness than many adults I know just having that simple building block.
My aspirations for him seem to be crystalizing. Not so much because of his birthday, but because of the journey he has selected. And because I have let go of what I wanted or thought I wanted. I have followed his lead and am just taking in the moment.
When I talk to people about my story, I am surprised by how many have similar stories, or at least have close friends or family who have them.
When I talk to people who have children going through similar struggles, I am often taken aback by the desperation in the questions they ask me. It’s usually quiet and controlled, but ever present, as if they are looking for a lifeline of any kind that can save them.
I’m surprised, not that people are desperate, God knows I have spent considerable time trying to turn anything floating by into a life preserver. I am surprised because they are looking to me as if I may have answers. All I can think is although I may be floating here on this apparently sturdy kayak, I’m also out in the deep ocean with a mess of hungry sharks circling me.
The thought that I have any practical information that may be of real assistance is quite strange to me. And it makes me reflect on where I was 2 years ago and where I am now, how far I have come and how far I still have to go. It brings me face to face with the mother that I was when my son came home from residential treatment, the tentative, scared, scarred women who just needed to know how this was going to end—to know that it was going to end.
The first morning after my son was discharged from his residential program he cut himself. Badly and on purpose.
We knew that 8 weeks of re-feeding and therapy and stable medication wasn’t going to “cure” him, but we were hoping that his discharge was more or less the end of the hardest part. Since then, I’ve spent a lot of time musing on how things might have been different if I knew some things then that I know now. There was so much I didn’t know, about what to expect and what to look for. I was just treading water and trying to stay ahead of my emotions. I didn’t have the energy and space to look at any of the lessons that were coming from these types of experiences.
Of course, just because I wasn’t ready for the lessons didn’t mean I didn’t have to learn them, it just made things a bit harder.
And there were a lot of lessons learned in hindsight from this specific incident. The most practical and glaring was that he wasn’t ready to be sent home, and I should have fought harder. I see now it was more of a business decision on the treatment center’s part. There were easier kids on the waiting list who the insurance companies would pay for with less effort on their part. At the time, though, I thought it was something my son had done or not done, or something I had done or not done. But I still wish I had known in that moment. I feel like it would have given me some stability. But maybe not.
I sometimes write a list in my head of these things, the stuff I wish I had known then. It seems this list would have been very useful to me at the time. I often think about taking pen to paper and writing it all down now, just to have it, kind of a talisman or even tangible evidence of progress. I’m not sure which one, it’s hard sometimes to separate hard work from dumb luck in the recovery process; I guess I should just embrace both. Yet every time I set about writing this list, it feels wrong. Like if I had known it then I wouldn’t have been able to apply it anyway or would have applied it incorrectly.
If I had known that my child’s treatment was a business decision would I have been able to handle that? Would I have been able to move forward and get the benefit we did out of it, or would I have waited and held out for perfect? Would the wait have cost my child his life?
No amount of catastrophizing is too much when I reach this point. These are the questions that spin out of control in my mind when I indulge in what-ifs. If I let them, the what-ifs will consume me, and I risk not being able to see some of the other lessons that were available to me at the time, ones I can apply in the future.
Yet I still feel the desperation of needing something to hold onto in the uncertainty. I think, and think, and think about how to distill this journey into the one lesson of value beyond my immediate situation, something I can tuck into my kayak and use when the sharks feel closer than they are. My mind will wander around the twists and turns of this thought process for a while before it hits me that I have put this journey in the wrong frame.
I am thinking about it all wrong, I’m using the wrong metaphor.
Because the lesson always come down to one thing: There are no ends in this process, there are only beginnings. Finishing a residential program, a meditation retreat, a skills workshop is not an end. Finishing is not a rescue, I am not being pulled out of the deep. It’s just another beginning, it’s when the real work starts and the work is not your child’s alone. No one will “fix” your child, no one can “repair” your family. You, your family and your child have to do the work. It’s all a beginning.
The cure, if you can call it that, comes over time, by all of you working and working and never giving up. It comes from accepting what is and working toward what is better.
When you know you can’t handle it anymore, you still get up and do the work. Just like you did when he was an infant and needed to eat every 3 hours, just like when he was a toddler and had nightmares at 1 am, just like when he was 6 and his pet died, and again when he was 10 and 15 and 16, and on and on. Every day is a beginning. Every day you feel like you’re starting over. You’re not, it’s what it feels like, but you’re not.
It’s just the beginning. His recovery, and yours, is a series of little steps into the unknown, small yet important course corrections as the path becomes a little clearer to you.
As the fog begins to lift, you can see the trail a little better. The fog will come again and trip you up, so you can’t race blindly ahead with the false confidence that if you can just get to the end it will be okay. You just keep going and listening for clues to where you are and where you are going. Sometimes, when there is no path, you have to cut one out for yourself, hacking away with the tools you have until you get to another moment of clarity.
Those moments of clarity aren’t the end either. They are more beginnings. Hopefully they will lead you to a path that is a bit easier than the one you were on, but they may not, and you have to keep going anyway. And you can, even when you think you can’t, you can.
If you can picture it as a journey to accomplish instead of a place to escape, if you can see your child as he is, broken and bewildered just like you are, you may be able to find the peace and space to step back and create something good and whole that you can use as a foothold.
It’s easy to fall into cynicism and doubt, and hard to let go of anger and blame. But as comforting as those tools can sometimes feel, they rarely shine any light on the path ahead and they never help you clear it. You have to hold on to hope, even when it isn’t reasonable, and you have to question your route even as it is clear that you are on the right track. It’s a tricky and convoluted path, you are going to need all your wits about you. As Robertson Davies once wrote: “These matters require what I think of as the Shakespearean cast of thought. That is to say, a fine credulity about everything, kept in check by a lively skepticism about everything…. It keeps you constantly alert to every possibility.”
So stay alert, search for your next foothold, and breathe.
And know. Know that this journey, as grueling as it may be sometimes, is just another opportunity to create. You can choose the frame, pick your own metaphor.
It’s not what you know going in, but how you use what you know to create your path and open up vistas. It’s okay to rest for a while, you have no end you have to reach. It’s okay to enjoy the view.
Even in the clamor, you can stop for a moment and look at how beautiful what you have created is. It will give you sustenance for the next hill, courage for the next trial, and hope for the beginnings ahead.