I Just… Can’t

I love track driving. We’re talking high-speed, all day, high-performance agility driving, ala The Stig. Nothing, not one thing in the world locks in my adrenaline and attention like navigating the wide outside turn at #13 before the whiptail into the straightaway. I feel my mind gearing down while I try to let go of my death grip on the wheel and let the back end drift itself around so I can punch the accelerator at the apex. (For the record, it took me a full day to learn how to make that happen just once.) Topping my last lap time is one of my favorite adventures, one I’m surprised I’ve had the opportunity to enjoy. But I know better than to try to beat the best time of the day.

I don’t actually drive a high-performance car. My daily driver is a stock Nissan 350z. She is certainly peppy enough for a good time and has delightfully tight handling that makes the slaloms no big deal, but she will never outrun the big boys. She just doesn’t have enough engine for that. Most track days I tire out my wave-by hand because, as anyone who has driven among the XRs and McLarens will tell you, the track teaches you exactly what your car can do… and what it cannot. Learning to drive with any seriousness starts with finding your limitations.

Two people close to me, women I care about and respect deeply, have lost friends to cancer this month. I know this because they are sharing their grief and recovery on Facebook. I want to reach out and extend my sympathies. I want to say, “I care about your pain. I’m sorry for your loss.” I want to be a good friend. I just… can’t. Not right now. Not when they are living the very thing that wakes me up in a cold sweat some nights, that is a faint and constant hum in the back of mind most days.

Another dear and treasured friend is fighting her own battle. I’m almost tearfully happy to see photos of her enjoying her not-quite-remission, her return to health and full activity after a year of oxygen tanks, hospital stays and dizzying medications. I have not reached out to share in her summer of joy and celebration, however. Not because I don’t love the simple pleasure of a shared meal with her, but because I’ve felt the boundaries of what I have to give too bluntly on the few occasions when we have had long, earnest, all-too-empathetic talks about the realities of cancer. I needed her more than she needed me, and that just feels unfair and too heavy a burden right now. (Yes, darling, I know this bullshit is all in my head. You can tell me that over eggs and coffee sometime.)

Love has limitations. We can’t be all things to all people at all times. We do what we can, and the sane and functional among us stop when we find our wall. If we really have our shit together we know when to say “No” or “Not now” or “This is too much.” We carefully curate our time, efforts, focus, and we prioritize those who receive the lion’s share. We decide who and what are most important—not in the world, but to us in this moment.

I’m so sorry to my friends who are outside of my tight and anxious inner circle right now. I am truly sorry that I don’t have enough engine for all of you. I am just clinging on to the wheel with a desperate grip right now, trying to hold a staggering curve while we pull ourselves into, hopefully, another straightaway. These are my limitations, and I’m learning to accept them.

It’s Back

“It’s so very strange to have PET scans become a medical tedium,” my sister posted on Facebook before going into her routine quarterly scan for cancer activity. She dropped off her kid, grabbed a book to read, a smoothie, and sent me funny texts from the waiting room before the tiresome protocol we’ve all grown used to over the last year.

Three days later she texted simply, “It’s back.”

My mind went black and buzzed with blind horror. I covered my eyes with my hands and felt myself spin in empty space. I could not think or feel or grasp this outcome. After that came the litany of information, the scan results, the radiologist’s report, the PA’s report, the info sheet on the next chemotherapy they’re going to try, the prognosis charts, the stats, the protocols, the appointments…

Today I finally asked her, “Where’s your head at?”

“I’m uh…. not ridiculously messy. I knew this was forever, but thanks, cancer, for the reminder. Fuck.”

We’re all messy. Our parents are messy. Her husband is messy. My adult kids are messy. I’m messy. And none of us are really talking about it. Maybe because it doesn’t make sense for us to be traumatized all over again. We had been told this was terminal. We knew this outcome was the very reason she had to go in for scans so often. But I think we had also convinced ourselves that she was responding so well to treatment that stage IV didn’t really mean stage IV. She was going to be a shining magical exception, a scientific sparkle unicorn, a medical anomaly. We’d have her around for another 15 years so she could see her kid graduate high school. We’re a bunch of idiots.

Nine months. Nine fucking months. The indignities and exhaustion and lasting side effects of her last round bought us nine stupid god damned months. And now it’s back. It’s small and localized, sure. It’s been spotted early and she’s still “ahead of the curve”, whatever that means, but the disease is back and it’s never really going to go away.

For the first time, I can hear the clock ticking over the sound of my concerted efforts to stay active, be useful, laugh at it all, avoid grieving before she’s gone. “Tick, tick, tick, bitches! I’m back!”

I’ve never allowed myself to picture her truly sick, genuinely dying from this diabolically adaptive disease. I’ve never thought of what happens when the treatments run out or stop working. I’ve never imagined her thinning or weak or bedbound. I haven’t even accepted that one of these days she won’t be dragging my sorry ass up hiking trails I can’t find without her help. But today, the hospital bed in the back bedroom, the urinals and IV drips, the feeding tubes and in-home nurses all appeared in my mind. The future that not one single one of us wants to happen came into focus before I could throw a rock at the screen and shatter it.

Fuck cancer. Fuck it hard. It’s back and it’s going to kill her sooner than we wanted to admit.

In the background, our mutual friend worried along with me, “I don’t know what to say. Nothing like this has happened to me. Do you act normal? Sad? Like nothing is wrong? I think normal is okay.”

We’re both at a loss today. Treatment day. Poison day. Day one of the newest of our new normals, in which my sister takes a dose of cell-killing juice through her veins every week for the rest of her life.

What are we supposed to do?

“I don’t know,” Mary said, “Live better? That’s a lot of pressure and expectations, but it seems like the right response.”

But I don’t really know what that means. Humans have been tooling on this one since Socrates. If you ask me, no one’s come up with anything better than his annoying barrage of questions. Maybe we’re all just 4-year-olds when it gets right down to it. “Why? Why? Why?”

Because cancer is a bitch that doesn’t care whether we’re happy or comfortable or enjoying the people we love, that’s why. Because cancer just sweeps in whenever it sees the chance and turns lives upside down and sideways. It isn’t fair. It isn’t fathomable. It isn’t going away. It’s back and we have to deal with it. Simple as that.

If only.

Um… You’re Doing it Wrong

It has been about 60 hours since a small group of men went into the streets of Paris with machine guns and explosives to inflict a kind of damage the most fortunate members of our generation can barely fathom. Even still, we can’t quite wrap our thoughts around what happened on a balmy November night in the city of lights.

There is ample photographic and video evidence of these staggering attacks and their aftermath. News outlets have offered maps and timelines and first hand accounts from people caught in the line of fire. There are a lot of questions that remain, of course, but it is easy enough to unfold the grisly series of events that, at this point, seem to have culminated in 13 fighter jets dropping 20 bombs on a city in Syria. (We have no photos or videos or interviews from Raqqa, but it is safe to assume that the blood is as red and the people are as frightened.)

I, myself, have spent the entire weekend wallowing in images and descriptions of despair and horror. This is because, like so many, I want to understand what happened and why. I want to solve the very complicated equation that brings an end to decades (centuries?) of reciprocal violence between distant parts of the world, historically conflicted religions, and powerful men vying for more power.

For most of us, the media, social and otherwise, frames the window through which we are viewing this painful moment in history. And now that anyone with a login can be a commentator, the view is suddenly more stark and more immediate. We can now watch the world grieve in real time. And, oh man, do we ever suck at grieving!

I get it. Your feelings are huge. It’s too soon to work through more than one or two of them and yet they just keep coming. I’m feeling them too: the shock and disbelief, the horror and fear and anger, the profound, heart sinking sadness for the loss of so many young lives. I understand. And, you know what, I’m totally okay with you expressing them, even in public and in print. I unloaded my own cognitive dissonance on my bookface feed Saturday morning, concluding that, like our old pal Socrates, I know only that I know nothing about any of this.

I know nothing about human grief of this scale, about the anger that can make people (not monsters, not terrorists, not Islamists—people) inflict it. I know nothing about the politics behind their anger, nor the people and circumstances spurring it on. I know nothing about the measures we have taken or will take to keep ourselves safe or, hopefully, change the world enough to prevent more danger to more people.

I’m not alone in my ignorance. With the very rare exception of ambassadors and intelligence specialists, regional historians, international legal experts and humanitarians on the ground… Aside from the people who truly know from their own vast experience about the full scope of factors contributing to the ongoing conflict in our world, not one of us has the faintest clue about anything other than that string of unsettling events we watched through the video recordings and recalled testimony of people who were there, with their own limited points of view.

But we all react differently in a crisis. Some of us inherently go into caretaker mode, cleaning the wounds of the injured and listening to their cries. Some of us become quasi-detectives, searching tirelessly for clues and patterns that can lead to root causes and prime suspects. Some of us are more analytical, interested in finding solutions. Others are big picture thinkers intent on putting the moment at hand into a larger perspective. Others still feel our emotions in the moment and can only take action later. None of this is right or wrong, it just is. As with all things, individual results will vary. This is something that our current public discourse doesn’t understand, and simply cannot tolerate.

I considered writing a blog about why these attacks are more painful to so many Americans, who have actually walked the streets of Paris and associate them with very fond memories, than the more remote and equally awful attacks in Lebanon, Nigeria and Kenya in recent weeks. I wanted to scold my big picture friends for trying to shame others for their experiencing their own, very human forms of grief. But I stopped. I thought. I took a moment…

Which is what we all need to do. Take a moment.

At university, I studied creative writing, not a particularly salient field to the events that continue to unfold before us. I learned a particularly important practice in all of those years of drafting and work shopping and crafting and revising, however. While it is very important to make note of life’s emotionally wrought moments, one should never consider the work created in those moments a finished product. That work will need further thought and revision. Every. Single. Time.

Now is not the time for armchair analysts, political candidates or media pundits with no expertise to be using sentences that begin with “We should.” Our best hope is that the leaders we have elected have the wisdom to set aside politics and listen to the intelligence, security and military experts who have spent their careers understanding the causes of this violence and devising effective ways to address it without further destabilizing the world and other peoples’ nations. Now is the time for us, the rattled and saddened public, to feel, to comfort each other, and to trust the wisdom of those with deeper understanding.

When your finger is itching to send that angry or accusing tweet, when tempted to give an analysis based only in your biases, when talking to an equally frightened friend who disagrees with you, keep in mind that we are all very different humans feeling very similar emotions. When all else fails, think of the families grieving those 130 Parisiens and just how much time and gentleness they will need from us in order get back to a totally altered form of normal. Patience, people, and trust.

The Triple Threat

 

• Generalized Anxiety Disorder
• Attention Deficit Hyperactivity Disorder
• Rule Out Autism Spectrum Disorder

Ah, the diagnostic triple threat. It was so familiar I can still remember the ICD-9 codes, if pressed. I’m no clinician, I can’t diagnose, but this magical combination of behavioral idiosyncrasies became immediately recognizable at a distance from my desk.

These were the kids who broke down in kindergarten or first grade. Tightly wound little guys who couldn’t hold it together long enough to wait for a sentence to finish or to prevent an emotional outburst before morning break. Adorable little peanuts, their engines were always revved so high it was exhausting to talk to them for just ten minutes. Conversations were like playing verbal pinball. They burst into tears or rages at the slightest disappointment or annoyance.

The physicians spent weeks, if not months, delicately regulating their medications and then re-regulating as growing brains naturally changed. When a kid fell asleep over lunch or was sitting it out because he’d hit someone out of frustration, further adjustments were needed.

Our amazing, mischievous schoolteacher had exactly 12,000 strategies for holding these little guys together through a half-day of school. She handed out stickers by the dozen. She reviewed the difference between equal and fair at least weekly. She had a small desk in the corner of the classroom, behind a bookshelf, near the window overlooking the lawn, just for the purpose of sitting out to calm down.

Their parents… oh, their poor, exhausted parents! They would sign in and take just a few minutes to enjoy the quiet once the door to the unit closed behind their child and the constant stream of words slowly diminished down the hall.

I’m no clinician, but I’d put money on this combined diagnosis for my brother’s son.

In my mind, his name is Bradybradybrady with no pauses. He’s so hyperactive the pediatrician asked my brother, just five minutes into the testing session, “So do you think we should look into a slow release stimulant?”

When he was three, I found myself having to explain to him the mechanics of the ceiling fan… every time he visited. The first time I just made up the parts I didn’t know. The second time he called me on my discrepancies. And the third. Eventually we read an assembly manual together so we didn’t have to argue anymore.

If a clock chimes or the refrigerator motor turns on in another room, sounds that would go completely unnoticed by you or me, he must stop everything he’s doing to identify them. The dog’s bark, the vacuum cleaner, sirens in the street all make him curl into a ball and press his hands over his ears.

This morning, when he stopped by with his grandpa I said, “I was just thinking about you!”

He replied, “Were you worried?”

“No, I don’t think I was worried. I was just thinking that I haven’t seen you for a while and I like you.”

“I was thinking about you too.”

“Were you worried?”

“I worry a lot,” he said while trying to sneak a sharpie out of my desk drawer.

Yesterday he met his kindergarten teacher. He is refusing to tell his grandpa her name. It’s a game he’s devised that looks like discomfort or insolence, but is quite funny in his mind. When I told him he could whisper in my ear, he admitted that he liked her.

I wanted to ask, “Does she have good strategies for keeping kids on task? Is there an aide in her classroom? Can you take five when you need to? Do they have a pull out program at your school? How are your new meds working?” I didn’t.

A few weeks ago, while I was having a short conversation with his grandparents, he drew me a 20-page book. Each picture was hastily outlined, incomplete. They were unevenly stapled together into a disheveled stack. I asked him to sit next to me and “read” me the contents.

As I recall, the plot was, more or less, the discovery of electricity, combined with several randomly placed pages featuring a stick figure standing above his scrawled name in the center of a crowd of hearts.

“Tell me about this. What are these?” I asked him, pointing to his lumpy, irregular valentines.

“This is me. You can tell,” he said impatiently, “because that’s my name. And these are all love.”

“That’s a lot of love,” I replied.

“Well, this is Dad,” he explained pointing to one heart and then another, “and grandpa and my mom and Jim and Jennifer and…” He listed over a dozen people in his family support group.

“And all of those people love you?”

“Yeah,” he stated matter-of-factly before turning the page, “And this is lightning and when it strikes a wire…”

Good luck, Bradybradybrady. School starts next month and you’ll find it interesting and hard. You will love the books and blocks and structure. You’ll probably dislike the songs and having to wait your turn. You will find it difficult to stay in your seat. You will adjust to your teacher’s rules in time, but be patient while you do. Never forget your morning meds. Find a friend who understands your odd social patterns. And remember, little guy, all of that love you’ve got around you.

The Chemo Room

There are too many chairs in the chemo room, too many IVs, too many patients and visiting family, too many expressions and emotions and things to think about. There is no escape from the sheer number of people struggling with the same frustrating process. The nurses straddle the treacherous divide between conveying compassion and keeping their sanity in a field that sees a staggering amount of loss. The machines beep incessantly. The volunteer-knitted caps gather dust near the donuts the medical team actually hopes the patients will eat because most of them are losing weight at an unhealthy rate.

There is one long window overlooking the commuter train station and the roof of the radiation clinic. The first treatment round, we laughed at the biohazard and radioactivity signs. They’ve gotten old. It’s all gotten old and tedious and frustrating.

By 4:00 p.m. when the last IV goes in, Mary’s mood changes almost immediately as she realizes the sickness is now ahead of her. In 48 hours she’ll have the equivalent of the flu and she will have lost her ability to taste anything but sweaty gym sock, regardless of what she puts in her mouth. Her immune system will be dead and she lives with a 3-year-old, so she’ll probably catch another virus and spend the following week feeling like shit. Oh, and speaking of shit, she won’t be able to be more than 5 minutes away from a bathroom either. The memory of a good, solid bowel movement is a distant one.

We’re getting tired and discouraged. I include myself in this, which is probably unfair. I haven’t had to suffer the worst of it. I stand around and watch. I try to lend support. I get her out of the house and watch her kid when she needs it. I’m never sick or tired or overwhelmed, but even I can feel the doldrums setting in. This treatment routine is definitely getting old, and she’s starting to look like she is.

But it feels wrong to gripe about the medications that are demonstrably saving her life. About a month ago a PET scan revealed that this first course of treatment is working incredibly well. In most locations the cancer was entirely resolved. In others, greatly diminished. According to her oncologist, radiation therapy ought to target those spots effectively when the chemo is done. When we heard we were ecstatic. I ended my brief call with her and sobbed with gratitude in my flower garden. I rushed to Starbucks and bought her a F-Yeah-puccino to celebrate, completely forgetting that coffee is notorious for going right through her in the worst imaginable ways.

It’s working! It’s working and we hate it. We are sick and tired of seeing her sick and tired. Yes, the harsh reality of her shortened life is a bitter pill to swallow, but this chemical assault on her body is more immediate and insulting today. She watches it drip into her arm, slowly, counting away the last hour and dreading the week ahead.

Before that we’d been opening mail from friends around the world: offensive books and bizarre gifts, funny cards, jokes from kids (far and away her favorite), and tacky postcards from friends on vacation. We laugh and laugh and swap them back and forth. We guess at who is sending the ones without signatures. I snap photos for sharing on the web. And we draw the attention of the other patients in the room.

One woman, also young and energetic, is on her third round with colorectal cancer. Like us, she has chosen to approach her illness with a dark sense of humor. She stops on her way to the bathroom to talk. We end up sharing hysterical stories of indignity and bodily failures that would be entirely inappropriate in any other setting. We share the link for Dov’s blog and give her a postcard that reads “Anus! Anus! Anus!”

We appreciate the laughs, we share stories and tips for managing side effects, foods that taste okay through the metal-mouth, but we won’t become real friends outside the chemo room. The unspoken truth is that there’s already too much to lose. Adding equally fragile and ill-fated friends to the pile feels inadvisable. We all know this is temporary.

By the end of the day, the nurses start to look tired. They become more casual with the few patients riding out the end of long, slow drips. Mary has been here for hours, and probably has another hour still for her veins to take in what is essentially poison to her and the cancer cells that want to replicate and mutate throughout her body. The medical assistant tells us about her husband’s search for a job. The nurse rolls her eyes when she talks about the frustrations of living with a 13-year-old. The scheduler is patient while she waits on the phone to find an appointment for yet another scan. Everyone has troubles. Everyone is tired. Life goes on.

Life does, though, go on. And for a lot of the people in this room, that is pretty damn good.

The Kid

For two years I worked on a residential pediatric psychiatric unit alongside therapists, doctors and nurses who treated children too mentally or emotionally unstable to live in their own homes. While I loathed the detestable billing job I was hired to perform, this was the most fulfilling work I will ever do in my entire life.

From my desk, I learned a hell of a lot about families trying with all their might to love their kids through the unthinkable. I watched them navigate their own flaws and their families’ scars and their child’s outbursts in an effort to make it through perfectly ordinary days. I met children so depressed they, literally, could not bring their bodies to eat or play or read. I watched a few of them recover into bright, hopeful, amazing human beings. Others I continue to watch from a distance while they navigate adolescence, learning how to be adults with their diseases, how to be truly heroic in a world that barely tolerates the symptoms of an illness just beyond their control.

I genuinely loved the patients on that unit. I admired their families. I adored my colleagues. I allowed my heart to swell and break for them time and time again.

I sometimes wonder if I let that job crack me, if I exposed myself too much and became a little too open and aware of children’s frailties. I find myself silently deriding the demanding, overly anxious suburban parents in my social group. I watch their healthy, happy children with a profound sense of relief. When I do encounter a child who is struggling with his own feelings, I try to gently recommend the professionals I know, the interventions I observed on the unit. It’s incredibly rude, but my heart is in that old place where we worked so hard with the toughest kids imaginable and sometimes saw them succeed.

My nephew is incredibly healthy. He’s happy and loved and secure and confident. He is everything you’d hope for a child. Before her sudden back pain, his food allergies were my sister’s biggest concern. He is learning (at just three) that he will pay for carelessness or indulgence. A chocolate bar will result in an evening of screaming discomfort, the wrong cracker in a maddening rash that leads to painful self-induced scratches all over his body. We don’t know if her first round of treatment is why he has to stay away from eggs and nuts, several oils, everything delicious or convenient or shaped like an edible cartoon character. We do know his existence is borderline miraculous after the chemotherapy, hormone therapy, radiation, and other insults to her body. Miracles are not difficult to love.

When he was born, the nurses on the maternity ward, referred to my nephew as “the linebacker.” He outweighed every other newborn by at least two pounds. He was healthy! A solid, sturdy, broad-shouldered blond, this kid is never going to have to look over his shoulder. His dad and uncles look like an Irish street gang in dockers. He has their strength and, if he hasn’t had enough sleep, his mom’s feisty ways.

My sister immediately worried, “We have to teach this kid compassion or he’ll be the playground bully, for sure!”

So far, her efforts seem to be working. He is eager to play with other children his age, quick to learn their names and swift to engage them in play. He is distressed when they cry, irritated when they are aggressive or selfish, can be bossy if they don’t appear to be enjoying his company enough. His head seems to be screwed on just fine.

Recently he’s started asking his mom if she feels sick, if she’s sad. He has no idea what is going on, but he is right at the point in his development where he is making clumsy forays into empathy. He can see others’ pain and he wants to kiss it better. He can see her wince and worry. He can’t possibly understand that it is caused by a hairline fracture in a bone made brittle by cancer.

When his mom asked him, “Do you know why I have no hair?” he replied, “Because you let me shave it off.”

Right now he’s edging up on this third birthday, so he still gets excited about bubbles and digging in the dirt. The zoo and the children’s museum are as much magic as he can imagine. He plays, he argues, he explores, he breaks things and tries to put them back together. He enjoys hugs and barely watchable cartoons. He hates naptime and the car seat. He is doing all of the things he’s supposed to be doing. And so far, my sister has almost no trouble keeping up.

Eventually he’ll catch on. He’ll know he’s got a mom with a chronic illness. How he’ll adapt to this harsh reality is another of the thousand unknowns. And then there’s the big one. He will, at some point (oh, please, let it be when he’s an adult) have to live through the grief of saying goodbye to him mom.

We all know adults who have lived this hell. Some are complete and total messes, dysfunctional and angry and unable to move on. Some lacked the support they needed when they were confused and overwhelmed and still carry that sadness years later. Some grew closer to their surviving parent, found depths of confidence and compassion beyond their years. As with everything, individual results will vary.

I believe in this kid and his character. I believe in the care of his family. But who really knows how well we will be able to support his needs when the time comes? I know we’ll all try with all our might. The fog of grief can be pretty damn thick though. Families fail their children every day, even under ordinary circumstances. The hope is that we all limp across the finish line uninjured. To expect more than that is unrealistic.

Since my own childhood, I’ve been a wisher on stars. I don’t believe magic or god or that anything beyond dumb luck and hard work can bring about those yearnings, but I still like to articulate them to the sky. Forcing myself to identify my single greatest hope when I first notice Venus in the evening helps me focus on what’s most important.

Last night I realized that my greatest wish is to see my sister through until this kid is grown, graduated, and ready to navigate the world on his own. Wish I may, wish I might see the treatment work for another 15 years. Pleasepleaseplease, science, please give them both that.

Trying to Laugh

Incurable is the word I’ve started using to make sure I don’t lose track. Because I keep slipping in that mud when I try to understand what the doctor meant when he told my sister that she will “never go into remission.” Incurable metastatic cancer. If I say it enough times my thoughts will begin to encircle the diagnosis and it will become something I can begin to understand.

Of course we know nothing at this point. We have no idea how long she’ll live, how many years she’ll spend fighting off the reoccurring cancer. We have no idea how effective the aggressive chemotherapy will be (though she places a lot of hope in her oncologist’s optimism, his smile, very specific turns of phrase.) We don’t know which side effects will take hold once they remove the IV drip, how ill she’ll feel, whether or not her hair will fall out in three or four days. We don’t know if she’ll be around to watch her son grow up, or if she’ll be able to participate if she is. We simply don’t know. And not knowing is the utter shits.

I have started to lean a little too heavily on a few of my friends. One, the surviving son of a woman who spent nine years with stage four cancer, helped me grow up in another century. I completely failed to support him in this crisis. I had no idea what he was feeling. We were just idiot kids together and we made each other laugh. It was bigger and more important than either of us knows how to say, so we don’t. We just tentatively reach out in the middle of the night when we both have insomnia.

J: So it would be out of bounds to anonymously mail her a bag of gummy dicks or sign them up for a foreign language nudist magazine?

K: Hahahaha! She’d be all over that! Especially obscure foreign busey mags. good, old, hairy retro mags would be even better.

K: nudey. Stupid phone. Though Busey holds appeal as well.

J: nudey busey, we could be rich or terribly poor.

K: There are things I won’t do for money.

What I did do was organize a way for people to send my funny, inappropriate, rabble-rousing sister the filthiest, funniest, most bizarre postcards they could find with the worst joke they’d ever heard written on the back. My hope was to provide an answer to the incessant chorus of “what can I do?” that they meant with all their hearts.

Within two days, 1500 people had responded to our outreach. In a week, the post office box began filling up. Our web page was inundated with hysterical, tacky, bizarre posts from the furthest reaches of the web. We interspersed them with messages about the value of laughter in the face of illness. We held back the harshest details. We talked to each other about how much she wanted to share, how to tell people what was really going on, and which people to tell.

Her husband asked me through tears if, in the unlikely even that they both failed to survive to see their 3-year-old son grow up, my husband and I would act as guardians. I didn’t even look at Allen before reflexively answering, “Of course.” It was hours later, in bed, when I got around to asking him if he was okay with that. We’ve had several conversations about how grateful we are that our children are raised and we are free to begin living our lives as individuals, rather than parents. I think he was sincere when he said, “of course” as well.

When Mary and I get together these days we talk about what successful treatment might mean, and what to do with the heaviness of everyone’s sadness. We talk about how she’ll slow down her work significantly but is afraid of the boredom that permeates full days spent with a toddler. We talk about the stark realities of her pain and her inability to take care of household tasks. The cancer in her spine led to a fracture in one of her vertebrae. She’s terrified that she’ll make the injury worse while her body is in no condition to heal.

I took her to lunch at the home of another friend, an occupational therapist who helps people return to their lives after long stays in intensive care units, traumatic brain injuries and strokes, after losing use of one or several of their limbs. Florentina greeted us warmly and almost immediately said, “You’re sitting down all wrong! Let me show you how to sit!” While the two of them talked about how Mary could protect her fragile back, I blew hundreds of bubbles for their toddlers in the back yard.

These are the string of events. These are the things you do to take care of someone who is sick. The rest of it is much, much harder. It spins around in your head without connecting. Eventually, you realize that you may be two places removed from the crisis, but you are watching from your vantage point, with all your messy and disorganized emotions, trying to make sense of it, just like everyone else. This isn’t my illness. It isn’t my story. But here I am, living my interrupted life with the people I love, and that’s something.

I’ve started noticing strangers in public who are caring for others. Grandchildren who gently and patiently help their grandparents at the grocery store, mothers of special needs children, a man walking his gray, arthritic dog slowly in the park, friends who sit by quietly and listen… just listen to another’s tears. It gets to be a bit overwhelming. This is what people do for each other, but it isn’t something that comes naturally to me.

I’m no saint. I’m a selfish pain in the ass, if it gets right down to it. I’ve always erred on the side of self-indulgence, and I rarely extend myself more than is socially necessary. I seem outgoing, even warm, but I haven’t made more than five new friends in over ten years. I haven’t tried. Most people are ass holes, I’m convinced, and I’m not going to waste any unnecessary energy on massaging ass holes. Honestly, I wouldn’t even know how.

That’s why, for the duration of my adult life, my much more open sister has been my closest friend (an unexpected turn of events after the 15 years of nonstop arguing that ensued when we lived under the same roof.) I’m going to be pretty fucking lonely when she’s gone. I have no idea how to make the most of the time we’ve got. Not a single god damned clue.

All that bucket list nonsense is pretty meaningless when you’ve got to balance pain and treatment and medical bills and a job and a three-year-old and a ticking-ticking-ticking clock that is eventually going to stop, but you don’t know when. Screw you Jack Nicholson and Morgan Freeman. It isn’t that simple at all, you rich, privileged sons of bitches. This isn’t some big budget movie and you can’t just pick up and leave the things you value most in exchange for a bunch of expensive thrills. Life is what is happening here, and it’s pretty damn hard, even without cancer.

So I go to the post office. I open the tiny door of box 744. I smile at the handful of letters and postcards leaning against its narrow walls. I walk my badly-behaved dog in the park on the way home. I shoot a text message to my sister, something I hope will be funny. I ask my daughter what I should make for dinner. I find excuses to bother my son at work. I try to fill my days and cling to the people around me. It’s what I know how to do.

Harry Potter and the Ferguson Decision

Oh, younglings, last night was a dark night. I stayed up very late watching live streams out of Ferguson, Missouri. I gasped at the incitements of the armor-clad police department as they insulted demonstrators throughout the night, kettled them into increasingly angry corners, shot tear gas at them over and over. I boggled at the mainstream media decrying damaged property and counting booze bottles on the sidewalk while dozens of independent live streamers were observing actual injuries, civil rights disregarded, counting tear gas canisters and rubber bullets. Over and over and over again robot-like police strong-armed demonstrators and ordered journalists to “turn off [their] cameras.”

There are too many cameras, though, too many citizens, too much truth to contain. We will never be turned off. Last night, I was astounded by reality, by my access to it, despite the best efforts of the media machine with its respective agendas. Young people brought this to me.

Thanks to live streaming webcasters, I saw Lesley McSpadden endure the brutal, stinging reality that had just been thrown in her face. I cried just trying to grasp the soul-killing agony and anger of a mother absorbing the knowledge that there will never, ever, at any point be justice against the person who senselessly killed what she loved most in this dangerous world. I understood that she had to sit still and listen to a jumpy (self-described), racist (established by his affiliation with organizations directly connected to the KKK), unharmed (despite the myth spun by his testimony and inflated by Fox News) killer (this cannot be disputed) describe her own beloved boy with the following words: “It looked like a demon.”

It. He actually said, “it.” Did nobody on that jury notice this? How could they not? Are we that lost?

Oh, dear Americans, we know better. We know that excluding a group of people from any path to the happiness life has to offer is the most desperately wrong thing that we can do as human beings. We fought this fight 50 years ago. We have been fighting it throughout human history. How have we so utterly failed the suffering and efforts of our forefathers? How did we let anyone convince us we are powerless? How did those freedom fighting muscles go slack? Will we never escape America’s corrosive legacy of racism?

Young people, you have been lied to and you have believed it. But let me lay some truth on you:

The magic is in you. You have the power to change the world. There are thousands of Mahatma Ghandis, Martin Luther Kings, Rosa Parks, James Baldwins, Ceasar Chavez, and W.E.B. DuBois among you. YOU, the person sitting behind that computer screen, can change this. You do not have to submit to the fearful and angry reign of our cranky, racist grandparents. You don’t have to watch their media, swallow their distorted views, and accept their manipulated elections.

While there may be a staggering number of petrified baby boomers in positions of power, we are stronger. We are smarter and more informed. We are better connected, better organized, better able to stop the embarrassing slide of our culture into an overly armed, theocratic, anti-intellectual neo-dark age. We have tools in our pockets that they never could have imagined. We were the ones with the imagination necessary. We made the Internet. We built a universe on the bricks laid down by a handful of renegade geniuses. We turned it into a global community. Now it’s time to put that community to work for something other than posting MLM ads on Facebook.

You were all raised reading the myth of your age, learning the magic required to win the dark societal struggle in the Harry Potter universe. You went to bed hearing the heroics required when fearful racists take any measure necessary to protect old ways that no longer serve the greater community. This is, after all, the story that Rowling told.

Do you know what your magic wand is? Your front door.

Young people, you must pick up the very devices they have used to numb you and turn them around. Start pouring truth out into the web, rather than sedately taking it in. Tell the stories of your actual world. Tell us how your college debt is crippling you while you use your master’s degree to work in a coffee shop. Tell us how your friends of every race and creed are tremendous human beings. Tell us how others have been brainwashed and philosophically corrupted. Tell us when you are treated cruelly because of your appearance. Tell us how you are silenced in the face of injustice. Tell us how your rights have been violated, how corruption has touched your life. Tell us about the beauty, the unfairness, the furies and beauties of this amazing world, your world.

Take it back, young people. Stop watching manipulative TV shows and scrolling through marketing aggregators like Buzzfeed and HuffPo. Unplug from their mind control portals. Stop buying their useless, plastic products and fizzy sugar highs. Stop watching, playing, smoking, popping and bingeing on the somas that keep you safely sedate. Stop consuming and start producing. Stand up and create the meaning that is so lacking. Make noise, tell stories, be present, film videos, expose lies, take journeys, volunteer to help the weakest among us, and ferfucksake, register to vote! (Only 18% of you bothered to vote in the last election. Those of you who failed to show up must take responsibility for the results.)

Take a chance, you glorious young wizards. Open your door, share your reality, control your destiny with the magic you already own. We need you to save us from what your grandparents have done.

In Praise of the Nanny… er… Lab

In the last 24 hours, I have been embroiled in multiple conversations about terribly innovative products under development, products with the end goal of protecting someone from something.

“That’s very clever,” you’d think the conversation would go, “Let’s call the Nobel committee.”

No. There are objections to products being designed and formulated by very, very smart people to protect other people from dangers we all read about and tsk-tsk in the newspaper everyday. Those products are EVIL.

Comedian and commentator, David Mitchell, ranted freely in the Guardian recently about the outrage of having a seatbelt installed into your car that detects when you’ve dropped off to sleep. Using a series of sensors, this relatively inexpensive addition to your already existing car safety system could prevent up to 20% of the auto accidents that happen on our roadways. Those absolute bastards.

“Even if they work properly, which I suppose they probably will after 10 years of irritation,” Mitchell gripes, “They’re an ominous development.” His contention is that driving is a skill, that it should be done by people who know what they’re doing and paying attention to it while they’re at it. Giving them a device that buzzes or bleeps them awake when they begin to nod off behind the wheel provides a false sense of security; it gives “an exhausted person the illusion of consequence-free power.”

This is clearly the voice of someone who has never driven the long, empty prairies of Wyoming, nor lost someone to a fatal accident caused by inattentive driving. This is the voice of comfortable privilege.

Meanwhile, a group of very clever chemistry students have developed a nail polish that, when dipped into a drink containing a handful of the wild assortment of so-called date rape drugs, changes color, thereby alerting a would-be victim before she is debilitated beyond the ability to protect herself. According to one interview with the young researchers, it was “personal experience” that inspired this product. “Through this and similar technologies, we hope to make potential predators afraid to spike a woman’s drink for fear of being caught,” they explained.

Hey girls! It just got slightly less dangerous to have fun again! Hooray! Oh wait…

Turns out, this is a very bad idea. A number of outspoken feminists have cried “victim blaming” in response to this apparently heinous effort to decrease the horrific act of raping women who are too debilitated to resist. Feministing blogger, Maya, asks “Are you at all concerned that women who weren’t wearing your polish when they were drugged and raped will be blamed for not doing everything in their power to ‘ensure [their] safety’?” She also wonders why we are working on chemical detection products when we should be teaching men not to rape.

She makes half of a point, there. Yes, men should very much not be raised in a culture that teaches them to feel entitled to women’s bodies, that encourages aggression and contempt when they are not given free access. I agree. Loads of work to be done there. And yes, law enforcement and defense attorneys need to stop Stop STOP banging the drum of when and where women should be allowed out and about and what uniform is acceptable. We need more women in both fields with a personal understanding of what it is like to be objectified, preyed upon and always just a little bit frightened. Start studying for those LSATs, ladies!

But in the meantime, while the roads of nightlife are riddled with the debris of rape’s gut wrenching, life altering, soul killing collisions, I think wearing a proverbial seat belt is a really good idea. Having an additional protective sensor in that seatbelt is an even better idea! Let’s call it layering. That way it sounds like Scandinavian fashion or good planning for a hike.

Go for it, engineers and chemists! Keep doing good in the world. Most of us appreciate your noble efforts.

The Blessing/Curse of Independence

Our job as parents is to gradually render ourselves obsolete. This is the harsh reality we struggle to accept as soon as the sleep deprivation starts to wane and our infants learn how to sleep and/or soothe themselves in the night. With each successive milestone, parents simultaneously celebrate, worry and grieve. We can’t help ourselves. We love our children and welcome opportunities to teach and care for them because it means we get to spend time with them.

My son has graduated from university and is, as I type, at his new office, orienting to his very first full-time professional job. He is very, very fortunate. He found a position within months of graduation. He is working in his chosen field. His salary is generous. This is what he has worked to achieve for the last 14 years. We’re very proud.

So why am I also kind of sad?

Let me submit into evidence this conversation we had the other day while talking about apartments that would reduce his commute time:

son: Are you going to become one of those moms who hand out guilt trips because I could call more often?

me: To be fair, you are exactly the sort of person who will get busy and never call. Why would you call if nothing is wrong? There are very few problems you can’t solve yourself.

son: But– No, you’re right. Let me preemptively apologize for not calling often enough.

me: And I’ll apologize for being a complete pain in your ass about it, because I will be. We’re really going to miss having you around the house. 

I’m naturally anxious that he’s venturing into unknown territory, but I know he’ll be fine. He’s a great guy, smart, a gifted problem-solver, a driven professional. He used to be bewildered by his tricycle and incapable of sharing his blocks. He’s come a long way in two decades that suddenly feel very, very short. 

I’ve done it. I’ve rendered myself obsolete. I’ve done what I was supposed to do as a parent. Whoopee…