I See You Mr. Double Standard.

I know many people believe that healthcare dollars should not be spent on those who choose to use street drugs. I get it. It’s about personal responsibility. Healthcare dollars are stretched enough caring for those who aren’t the agents of their own destruction.

However, I ask you to consider the following:

We cure cancer in those who continue to smoke cigarettes.
We staple the stomachs of those who ignore the food pyramid.
We perform heart surgery on those who have never seen the inside of a gym.
We given insulin to those who knowingly eat donuts.
We fix the broken limbs of those who practice extreme sports.
We pay for the delivery  of babies conceived by high risk mothers.
We stitch back the bodies of those who crash speeding cars.
We treat melanoma in those who refuse to stop sun worshipping.
We treat venereal diseases in sexually promiscuous people.

The costs incurred for treating these examples of “irresponsible behavior” are staggering: According to the Centers for Disease Control and Prevention, smoking is the number one preventable cause of disease in the United States and it costs $170 billion dollars a year in direct medical costs. According to the American Diabetes Association one in three medicare dollars are spent on treating diabetes at a cost of $322 billion dollars a year. And, “American use of tanning beds may lead to upwards of 400,000 cases of skin cancer annually.” (American Academy of Dermatology).

But you know what?  Those individuals receive treatment with care, efficiency, and efficacy. The same can not be said for those with substance use disorder. This time a year ago my nineteen-year old was turned away from a detox center because there were no beds. She then walked to Boston City Hospital’s emergency room, sweating and trembling, for help. They too turned her away. Desperate, she spent that evening trolling Mass Ave looking for the drug she needed to tide her over for one more day. The next morning she returned to both the detox center and the emergency room. And once again she was refused admittance. She called crying; “could I please, please help?”

Help should have been as simple as a request.

I spoke with the ER doctor. He explained, “we don’t treat drug addicts here.” He then explained that he would also not admit her for mental health reasons because he didn’t believe she “would kill herself.”

I felt weak at the knees. How does one mount a spirited defense when powerless?

“My daughter is only nineteen years of age. She is not yet a hardened street addict. She is high on a drug that is killing people at an unprecedented rate. She is asking for help. You are that help.”

Silence.

“We are not asking for charity. She is insured by two separate policies.”

His reply: “Hospital rules do not permit admittance.”

“Surely,” I argued, “it is time for hospital rules to change. This is an epidemic. Turn her away and there is a strong possibility that she will die tonight.”

Silence.

“Why wait for the hospital to change it’s policies in response to a dead child and a lawsuit?”

Silence

“You took the Hippocratic Oath.”

Silence.

“You could lie about the reason for her admission…”

Do you know how it feels to beg when you shouldn’t have too? Begging when the stakes are so ridiculously high?  It feels like swimming against the tide while trying to reach your drowning child. Swimming and swimming…and then the dorsal fin appears.  But hope is not lost: a lobster boat comes into view!  You yell for a rope. But they don’t throw one.   No, they don’t.  Instead, they sit back and watch.  Because, you know, she shouldn’t have been swimming in those waters.

I know I sound angry. That’s because I am.  I spend $1500 a month out of pocket for health insurance – and I have had to beg for life saving services.  Addiction is classified as an illness by the Diagnostic and Statistical Manual of Mental Disorders (DSM-III).   But the double standard most assuredly remains.

Don’t Categorize This.

We categorize and sort things:
Linen closet. Junk drawer. Shoe rack.
We differentiate and label people as well:
Type A. Neurotic. Extroverted.

Classification by the human brain is typically helpful. It is meant to move us quickly and efficiently through an increasingly busy and varied world.

There probably was a day when rapid generalization of objects and people wasn’t required. Possibly we had less things to sort and each thing had intrinsic value. That spoon was a spoon. (Not a silver spoon or a plastic spoon or a baby spoon.) Possibly at some point in time we all lived in small insular villages. Each inhabitant couldn’t be categorized by a singular adjective because they were too intimately known.

Addict = Junky.

Unfortunately, this characterization exists. And, to be honest, by the time an addict’s addiction has fully consumed them there is very little left by which to define them. Jobs, families, homes, hygiene, self respect, love….. all gone. The addict becomes the equivalent of an item in the proverbial “junk drawer”…..something that used to function, but is no longer useful.

But, just like those that know the value of that random fob or tube in their small kitchen junk drawer, those of us who parent children with substance abuse disorder know their inherent worth. They are valued and loved. And worthy of repair.

-The most stand out characteristic thing I can say about my son is when he enters a room and smiles the whole room lights up.

– My son is well read, a wicked movie buff, likable, handsome, has common sense, is a great athlete, loves fishing, boarding, and biking. (He has) so many amazing qualities which makes it so difficult to understand this disease.

– My son is so smart! He was offered the Abigail Adams award for 4 years of free tuition at any MA state university or college. If only he had accepted it. He’s also so generous and thoughtful. There were so many days that he would just show up at my work with a bouquet of flowers for no reason. And he has got the greatest personality. Of my 4 adult children, he’s the only one I can carry on a full, engaging, adult conversation with.

– My son ends every conversation or exit with love you.

– My daughter has a quick trigger – but also uses it for good. She is quick to call someone out when they have hurt another. Or to notice the injustice in situations she encounters. She is a defender, with a capital D. And twice on her birthday she had friends donate money to a local animal shelter instead of giving her a gift.

– (Even) when I visit my son in jail, he can tell a funny story and make me laugh…which is a good thing!

– My son is extremely sensitive. He is a hard worker, a talented musician, and a kind person. He loves to make people laugh even at his own expense. He is so sweet with his elderly grandmother who adores him.

– My son is an extremely hard worker and his staff always would say how much they loved working for him.

– My son loves animals and is very compassionate. He is passionate about his music and loves to read. Even when he was at his worst I always felt that he loved his dad and I. He is a vegan and always concerned about what happens to animals and to our planet. He tends to take care of people he meets that he feels are struggling like him.

– My daughter has a beautiful singing voice.

– My daughter gave away her winter jacket at a detox. “She needed it more,” is what she told me.

– My son is funny, charming and charismatic. He is a fighter and so tenacious for beating the odds and overcoming so many learning disabilities, stuttering, and of course heroin addiction…at least for now.

– One day my son came bustling into the kitchen looking for something to eat. He began making pbj sandwiches and putting them into a bag with gatorade bottles and chips. A little time went by and I looked out of the picture window and saw the top of two heads.  When I looked closer, it was my son and a stranger sitting on the porch step. The stranger was eating the food!  When my son came in a little later, I asked him about it.  The man was someone my son had met days before. He was homeless and hungry. My son told him if he was in need to come round and he would help. He also sent the man off with extra food, a comb, soap, bottled water, tooth paste, Tylenol, his old sleeping bag and rain poncho. That’s my son. I have NEVER loved another human being as much as I love my beautiful son.

– My addicted daughter used to tell me when she was little that she could see into the future, I always thought that it was a strange thing for a little kid to say.

I realize it is hard for many to see the humanity in those who have lost the ability to reflect their own human potential. And most likely the world will never be a perfect place. But fully seeing the marginalized amongst us….that helps bring the village back.

 

Triggers Are Not Real.

“TRIGGERS ARE NOT REAL.”

My daughter stated this, firmly, when I tried to stop her from taking a bus through a neighborhood full of triggers. Addicts are supposed to avoid triggers….just like someone on a diet should avoid a bakery, and someone thinking about a new dog should avoid a pet shop. It’s good common sense.

This particular neighborhood, for three years straight, had replaced days meant to be spent at school. It was where she met her first, of many, older, opiate-addicted boyfriends. The neighborhood where she drank with her girlfriends until they couldn’t stand up. The neighborhood she went missing in for nights on end. The neighborhood she partied in to the point of hospital intervention, repeatedly. The neighborhood with the drug store street corner. All of this would be within memorable reach.

“I don’t want you to take the bus. I can get you in the car.  I would be happy to come get you… “

“No.”

Trigger has to be the perfect colloquialism for “classical conditioning.” I appreciate the way it brings to mind the image of a loaded gun to the head. When you are the parent of an addict it becomes that clear. That person, that bent spoon, that ball of singed tinfoil, that street corner…. all become sensorial reminders capable of triggering relapse. And relapse is nothing short of a game of Russian roulette.

To be clear, my fear of triggers isn’t a case of playing probabilities or trusting in a predictable pattern of personal weakness. Classical conditioning is scientifically proven. Most of us are familiar with Pavlov and his bell salivating dogs. This early study in classical conditioning proved that a learned process can change a previously neutral stimulus into a potent stimulus. This potent stimulus in turn creates real biological change in the body. Biological change where none existed before. Replace Pavlov’s bell with a street corner and excessive saliva with irrepressible craving and the problem becomes all too real.

“I want to take the bus. Triggers are not real. Like, everything is a trigger. A song. A boy. The bathroom. The sunshine. A nice day. A bad day. Even the breeze. You have to deal with your stuff, mom. If taking a bus makes me relapse then I haven’t dealt with my stuff. You just don’t understand.”

I am trying to. Classical conditioning is not equivalent to the loss of free will. Biological stimulus does not have to be a siren call to action. We are a little more complicated than a bell drooling hound. But how difficult must it be to retrain our rewired and tired brains to see each situation clearly and non-reactively? Can we be our own psychologists, neurosurgeons, life style coaches and cautiously present Buddhas?

In the end, she took that bus. And you know what?
She made it safely home.

Modern Love

There is a program on National Public Radio that does a spectacularly good job at deconstructing a word most of us feel we can confidently define: love.

In one episode Jason Alexander narrates his love for the family goldfish. The loss of someone close to him has forged his affection for this swimmingly simple little golden fish. Its presence represents an escape, and an embracing, of the crumbling reality of existence.

Can love be tempered by unpleasant realities? The program would say yes. Most of us, especially those of us with decades of life behind us, would agree.

We all have our own “modern love” story. Mine would be about my daughter, who many might describe as hard to love.  They would be wrong.

Admittedly, she was hard to snuggle.  She preferred the plastic embrace of her car seat. The car seat could be parked far from me: she was happy with any room, any corner. She tracked me with her eyes, but she tracked other things with equal interest. I took to forcibly putting her in a snuggly and walking up and down the street with her.

Glowering was also a specialty. She was a beautiful blonde baby with fat pink cheeks, green eyes, and a perma-scowl. Her mouth, right from the get-go, had a natural down turn to it. Glowering with the addition of defiantly crossed arms came later. When asked to give her name during her kindergarten interview she stood up, turned her chair backward to the teacher, crossed her arms, and sat down. She remained that way for the entire interview.

My husband and I remained enamored. (Why should she perform tricks like a trained seal? Maybe we have the next Hillary!) We affectionately nicknamed her “little black cloud.” We would mimic her mood in a dreary Eeyore voice – desperately trying to add some EB White levity to our situation. Sometimes we would just mime a “brewing storm”  by circling our fluttering hand over our weary heads.

But of course at this young age it isn’t about them loving you. It’s about you loving them.

Loving her could be exhausting. It wasn’t easy for my daughter to accept love. She appeared to weigh it, to quantify it – to find it lacking. She was often displeased. I came to see it as her natural default button. She screamed about sitting in the cart at the grocery store. She screamed at her older sister to claim the best barbie. She screamed if she could hear you chewing during dinner. She screamed for the last cookie, to hold mommy’s hand, to find the most Easter eggs. She screamed over minor transitions. It was relentless. Her ability to express love was buried under an itchy blanket of sensory issues, fear, jealousy, and an unshakeable sadness.

But she loved us too. It was apparent in the way she would fit herself to your side when watching a Disney movie. And in the occasional half smile with tilted head. In the way she kissed her dog’s bearded face. And the gifts of found flowers or crayoned pictures.

So, yeah, love is not only tempered by unpleasant realities… in can grow in them. It may even grow hardier. We are living proof.  We are the dandelions of love.

Trap Houses vs. Safe Houses

Those of you familiar with the language of addiction will know that I am not comparing domiciles that fail building codes with those that do not.

A trap house refers to a drug den. An abandoned property where addicts go to buy and use drugs for days on end. Think squalor. Think bug infested mattresses. Think quiet desperation. Think death.

“There is one way into a trap house, and one way out.”

A safe house is also a place for drug use. However you can not buy or visibly take drugs within. But you are expected to be actively high when you visit. Inside you are given the opportunity to swap out dirty needles for clean. And you may ride out your high in an upright chair instead of slumped on a dirty street curb. But most importantly: in a safe house you will not die. Nurses are present to monitor breathing, administer narcan, and call ambulances.

A Boston safe house opened in April after receiving support from the medical community, those who care for the homeless, Mayor Walsh and Governor Baker. Safe houses, or “safe injection facilities,” already operate in Australia, Canada, Germany, the Netherlands, Switzerland and Spain.

Still the idea of ‘state sanctioned drug use’ sounds shocking. The medical community refers to this approach as “harm reduction.” (Certainly a less charged descriptor!)

The immediate goal is to curb the alarming uptick in deaths; especially among the young.   On a recent trip to a town office building I found the bathrooms locked. The secretary explained it was to “keep the addicts out.” My daughter’s former boyfriend overdosed in a Dunkin Donuts bathroom. Afterwards he chose Burger King stalls. The reason? He had just scored in the parking lot. The newspapers are full of stories of addicts being apprehended inside their own cars in public parking lots, under trees in local parks or tucked down public city alleyways. It is hard to understand an addicts sense of urgency. It can not be compared to the Friday night joy of buying a bottle of wine, bringing it home, opening it up to breathe, and then swirling it in the glass. There is a sense of immediacy that most of us will never know.

Therein lies the problem. What will prompt an addict to walk to a safe house to ride out their high when they score blocks or miles away? If curbing the number of deaths from opiates is the goal, then heroin users will have to be allowed to use their drugs in the safe house – or right outside. Death from heroin, or fentanyl-laced heroin, occurs almost immediately. The drug is potent enough to shut down breathing within the first few minutes.

Of course we can’t allow safe houses to become “shooting galleries.” Or can we? Sometimes it seems like the most humane option… especially when you witness first hand the places where addicts live. Even more so when you find your own child in them. I ultimately feared finding my daughter expired on a street corner, behind a dumpster, or in a motel. I didn’t want her last moments to be spent cold, unloved, hungry, or abused. It wasn’t an irrational fear… it was only a matter of time. I considered bringing her home, knowing she was not ready for change, but wanting her to have the warmth of her bed and food in her belly. I was ready to wave the white flag even if she was not.

Could a safe house have been that sort of place for my daughter?

But safe houses do not allow you to sleep in them. And they do not feed you. They are not shelters without rules, or over indulgent mommys. In the end they could not have allayed my fears.

The only other North American safe house (a true safe injection facility) exists in Quebec. A medical study by The Lancet showed that thousands of lives have been saved: overdoses stopped, the spread of HIV/Aids minimized, counseling and detox services accepted. It is working, despite the usual NIMBY complaints.

Hopefully lives will be saved here in Boston. There is nothing more upsetting than stepping over an addict on the wintery streets of Albany and Mass Ave and “continuing on your way.” Now at least you can lead them to a warm, comfortable room where a counselor can ask them if they want help. Can offer them water. Can look them in the eye and take their blood pressure. A small amount of decency can be provided.

Time will tell. My only hope is that we have some hard science around the outcomes. No more moralizing on the one hand, or fear based preventive measures on the other. Since 1980 addiction has been classified as a disease. To a certain extent it angers me that we have come to this. Would we be considering safe houses if we had provided better, more efficient, longterm, quality care earlier to this population? I don’t know. But I guess we have to start where we are. And I can’t help but embrace a concept I would never have considered years ago.

Partying with the Sober Folk.

This time a year ago I was my daughter’s guest at a recovery barbecue. We made our way there via a South Boston park with harbor views. People were playing what appeared to be a game of “pick up” baseball. A handful of lucky fans sat under the few trees that sported shade. I kept walking through invisible puffs of cigarette smoke. Children were screaming with their mouths entirely full of half eaten hotdogs. It was, you know, quintessential American stuff.

We found the recovery center across the street – in the scrubby back yard of a former church property. Outside an old man with a gold tooth was watering an incredible, and I mean incredible, garden. He smiled at us.

Inside the yard we were handed raffle tickets. Strangers cooked us hamburgers. We drank extremely cold sodas from an overly iced trash can. People made room for us at crowded picnic tables. We ate watermelon and chips from wicker baskets. We listened to top 40 music from speakers slung here and there.

I watched a young man perform a break dance that was skillful and unabashed. He spun with pure joy on a small patch of concrete. His eyes were half closed. My self conscious self had nothing in common with him. At the time I thought it was the dance that enthralled me.

Later this same boy shared his story. His drug use had left him homeless. He had slept under a bridge for a year: through a Boston winter. His life had been saved by another person at the party.  His life had been saved by some guy at the party.

How many of us ever save anything? Maybe we salvage a burning dinner, or retrieve a lost accounts payable receipt. Better yet, we preserve a colleague’s job. Or rescue a stray dog. Those are all great for sure… but not quite the same.

Clearly this was not your typical barbecue.

When the young man won the raffle prize (a long sleeved jersey) he handed it to my daughter. He knew she liked it. Possibly he was trying to impress her, but of that I am not certain. I do know that he most likely owned very little…and he gave it away just to see her smile.

Inside the building we found my daughter’s counselor playing the cello. She had it steadied between her legs, and her tattooed wrist held a delicate, long bow. A young man with the teeth of a meth addict accompanied her on the guitar. The sound of her cello and the sound of his voice broke my heart into a million, billion pieces.

I have been turning this day over in my head for a very long time.

“PTSD” – Post Traumatic Stress Disorder

This is when I am supposed to reference Webster’s dictionary. I can picture the bulleted item list that has been carefully compiled by doctors and psychiatrists, and craftily winnowed down by editors.

Yet words are bound to fail. PTSD creates a feeling that can not be contained by bullets or paragraphs. If forced to use words they would be: “sense of dread.”

A sense of dread accompanied by unwelcome imagery. Imagery that is not imaginary. Dread that is not unjustified.

The ring of the phone makes me ill. Physically ill.
A knock on the door? Visions of a police officer.
An envelope without a return address?  Bad news.
My daughter not texting for a few days? Relapse.
Sad song on the radio? Message of doom.
Bitter snow? Frostbitten child.
Cheap motels off the highway? Sadness, loneliness, death.

My list could be longer. But it hurts to write it. If I suffer from PTSD, how badly must my daughter suffer? I have seen the results of her use, but have not lived through the experience of it.

“Conquer your fears” is written everywhere nowadays – from business journals to self help magazines. But the kind of fear they often refer to is that of financial risk. (Or a lifestyle change: try that new vegan diet! get a new partner! make a career switch!) I am talking about a different kind of fear. A primal fear. The fear of losing your stormy green eyed child to something so unpredictable, so misunderstood, so maddeningly unacceptable. I have written my daughter’s obituary in my head. I have actually looked in my closet to see if I have an acceptable black dress. These were my attempts to conquer my fear. My attempts to claim and manage the unacceptable.

Nelson Mandela says that “courage is not the absence of fear, but the triumph over it.” That the “brave man is not he who does not feel afraid, but he who conquers that fear.”

I am not there yet. But my daughter is. She is putting one step in front of the other…. steady and straight. Even with those swirling thoughts that must exist in her head. If I had to provide a picture of bravery for Webster’s dictionary it would be of my stubborn green eyed child making her way across a tight rope.

And I am waiting on the other side.