this is zoe's story

Imagine losing someone you love more than life, knowing that this didn’t have to happen, that there was and is so much that could have been done.

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All these years later it’s still hard to believe what happened and how it all unfolded.

 

But first let me tell you about Zoe.

She loved life and she was interested in everything.

She could spend the day in Barnes and Noble reading about neuroscience, religion, fashion -- everything interested her.

She was brilliant, she was beautiful, inside and out.

And she was fearless.

Zoe cared deeply about others. 

She would have made a difference in today’s world where humanity and empathy, are too often in short supply.

 

But she lived with emotional pain.

Childhood trauma was buried deep under her skin.

 

Mostly, she managed to deal with it, putting her best self forward, trying her best.

 

She was in therapy on and off for many years, but that kind of pain doesn’t resolve easily.

And it’s hard for a young person to reach deep and look at the pain they’re so fearful of.

 

Side bar - - (I think it’s also hard for parents to deal with mental health issues, including substance use disorder, which is often not recognized as a real health issue - - but rather one that’s viewed with shame and stigma, a lack of moral fortitude. A general feeling of “you did this to yourself, you’re not the victim here.” or “for goodness sakes, just try harder and stop”).

 

But what I think changed Zoe’s life course, and where this tragedy started, were a few significant missed opportunities when we interacted with the medical community. Missed opportunities to provide us with information compassionately, and clear treatment recommendations.  Those missed moments cost us.

 

There was too much negative judgement surrounding Zoe’s struggles and my parenting.

It almost felt like her doctors had disdain - - believing she somehow wasn’t trying hard enough, that she wasn’t truly sick.

 

I can give you a good example. In high school, Zoe developed an eating disorder in her junior year.

Her pediatrician identified it and recommended she be admitted to a hospital as an in-patient.

I agreed. 

 

Zoe was terrified having never been in a hospital except when she was born.  Unfortunately, when we arrived that day, her doctor had not made the arrangements, and there was no bed for Zoe. The nurse said she could sleep in the corridor until a bed was available.  That really didn’t feel right so I called her doctor to let her know. 

 

Zoe’s doctor, her pediatrician said, “You know what I think, I think what Zoe really needs is a good swift kick in the pants, leave her there for now”.

 

Now even though I didn’t fully understand all that was happening to Zoe, why she was doing what she was, I could not fathom why a medical professional did not realize that Zoe was ill, not manipulating us.  Yes, she was behaving in a self-destructive way, but because she was suffering and lacked the tools to do better.

 

And while I questioned what I was hearing - - this doctor’s attitude also influenced me.  If she thought this was just “bad behavior” on Zoe’s part, then perhaps she was right -- after all, she’s the doctor.

 

And I’ll always wonder if that influenced my thinking as more complicated issues came into play.

 

I didn’t leave her at the hospital that day -- but I did get her into treatment, outpatient, to start the very next day.

 

That was the first breakdown in the medical care Zoe would receive over the next five years and then her life would end.

 

[I want to add - - I learned later, on my own, that an eating disorder can be a predictor of substance misuse later. I learned that there is a correlation between eating disorders and substance misuse.  That was important information, which we didn’t have.]

 

 

When Zoe went off to college, she loved it.

I learned, not happily, that she and her friends experimented with new freedoms, feeling like adults, though emotionally not nearly there.

 

Along with those new freedoms - - Zoe experimented with alcohol and drugs.

 

I first became concerned, (in her second year at college) after a few phone conversations, where she just didn’t sound like herself.

 

I flew down to visit – a mother’s instinct.

 

At first all seemed perfectly fine.

 

And I thought, okay, I would rather be a little paranoid than miss something.

 

 

Sunday, we had planned to have brunch before I flew home but - - she didn’t show up.

 

I thought she must have overslept, been with her friends after we had dinner the night before.

 

Then I got a call from a hospital -- Zoe had overdosed, found unconscious on her college campus.

 

She was taken to the emergency room and stabilized.

 

By the time I got there, they had “charcoaled” her, though she was still very incoherent.

The doctors decided she needed to be observed for 36 hours, (she was deemed at risk of hurting herself) so we stayed in the ER, in that cubicle, she on the gurney, I had a chair, for the next day and a half. 

 

That’s a lot of time.

 

Time to evaluate Zoe, time to listen and understand this youngster, understand what she did yes, but also why she did it. (I have always wondered why no one seemed interested in why Zoe did what she did). They peppered her with questions about what she took, but not why.

To understand a problem, isn’t it important to know what is driving the behavior?

 

And there was plenty of time to care and provide what might have been life-saving information.

There was enough time to provide referrals and recommendations, time to inform both of us just how serious an overdose is, to explain the implications, and the risks of a future fatal overdose.

 

I did learn years later that a non-fatal drug overdose can be a predictor of a fatal drug overdose -- that was such important information for us to know.

 

That was the time to provide a Narcan kit, just in case.  But also, it’s such a powerful message.

Your loved one could stop breathing, because she is using drugs.  This is what you can do to save her.  Imagine the impact this would have had -- hearing that -- for both of us.  This is serious, this is life threatening, this could be deadly.

 

But that wasn’t what happened.

 

What did happen, was unexpected but again, I didn’t know any better.  

 

Stigma interfered with good medical treatment.

She was judged, a spoiled, reckless, indulged kid.

Taking time and space away from someone who, as they may well have said, was “truly sick”.

 

Zoe almost died that day,

How much sicker does one need to be to receive health care that’s also compassionate and humane.

 

That was the second brush with stigma, but I still didn’t understand it then.

I probably felt we deserved the treatment we got, feeling so ashamed and embarrassed,   because I knew so little about drug misuse and mental health issues back then.  And the set-up way back when, began with a judgmental attitude.

 

And that began this chaotic and alarming period in our lives.

 

Long story shorter, I ultimately, I took Zoe out of school, and she came back to New York with me.

 

 I was able to access some of the most well-respected professionals in the field of mental health and substance use disorder.

 

However, little did I know that stigma can exist even within this highly specialized medical community.

 

I’m a mother, with a very sick child, and naturally, I’m both terrified and frantic to get her better. I’m desperate to help my child, but at the same time I am feeling so ashamed.  There aren’t too many health issues where that would be the case.

And still I had very little information about substance use disorder - - no one even referred to it as such.  Everything was a stigmatizing label that made me think, “are we actually talking about Zoe”.

 

Keep all that in mind, and imagine getting advice like this:

 

 

A doctor recommended I have Zoe arrested. Another suggested having her kidnapped to another state where she could be held against her will.  Everything said - - punish her, she’s bad.

 

I thought to myself, is this medical treatment?

Are you kidding?

 

There was also a lot of “let her hit rock bottom”.

That’s like saying wait to treat a cancer patient until she’s stage 4.

 

Today I know that “rock bottom” is like playing Russian Roulette with someone’s life.

She might survive and then again, she might not.  

 

And what would she have had to go through to finally get to a point where she accepted the idea of being treated.

 

Becoming homeless?  Would we just watch her drug use escalate to a life-and-death stage, more complex, more dangerous, and more embedded.

 

I rejected those recommendations and eventually I got Zoe into a treatment with a psychiatrist who specialized in addiction, and, slowly, over time, she seemed to come back to herself.

 

Looks like we’re getting “our old Zoe” back this doctor would say to me - - just a few weeks before she died.

 

But as can happen with this health issue, it ebbs and flows and when it flowed back, it was terrifying.

 

I started searching again for help.  I knew she needed a more intensive treatment, she was getting sicker, and I just knew her life could be in jeopardy.

 

You know, it shouldn’t have to be this way.  We should be able to talk to our physicians or pediatricians and find the support and direction we need - - as we would with any other health issue. Ideally everyone should get onboard in a coordinated fashion and support the patient and their family.

 

Isn’t that what we do for cancer, heart disease, or any other illness.

 

Every day, while I searched for help, we lost time, I didn’t know it, but we kept losing time.

 

Then someone at McLean Hospital in Boston provided a referral, a New York doctor who saw me, without Zoe, because by that point she refused to come in.  She felt she was fine, and she was happy, and she didn’t need help.

This doctor explained that there was a way to lovingly encourage her to get into treatment so that she could get better, healthier, and move on with her life.  We talked about Zoe at length, of course the drugs, but also what was most important to her.   I thought it had to be the drugs or maybe her friends.  

 

But my husband pointed out, it was me, I was most important.  Zoe loved me and our relationship meant the most to her. From there we created a script, we narrowed our interactions down to just one focus, I announced to Zoe, in an email, in a letter and verbally that the only thing I would to talk to her about was going into treatment.    She started to miss our interactions, she started to miss me and us and one day, when it seemed so unlikely that anything would really change, Zoe said, “just tell me what you want, but please stop, I miss you, I want to talk to you, I want our relationship back, please. I miss you so much”.

 

When that happened, she did agree to a more intensive treatment and consented to include me so that I could participate.

 

But we had lost so much time, searching for help, rejecting bad advice, feeling so shamed and embarrassed. There had been so many missteps, so much lost time.

 

With this health issue, anything can happen at any time, and it did - - but it didn’t have to be this way.

 

Overdose deaths are preventable. That’s just one of the reasons this is so tragic - - this didn’t have to happen.

 

You know there are things in life that are imprinted on your brain forever.

 

On a Sunday in April, Zoe came home in the evening, I was preparing dinner, and I asked her if she wanted anything to eat.

 

She said to me, “Mom, I think I’m going to make myself a cup of tea and go to bed”.

 

And that’s what she did.

 

I didn’t know that those were the last words I would hear my daughter say.

 

I don’t think I hugged her that night?  I probably didn’t, I had narrowed everything down and though I was loving her, I was keeping to the script.

 

And I assumed I had tomorrow, and the next day.  After-all we had an appointment, on Thursday that coming week.

 

Zoe went into her room that night, with her tea…

 

She also took a combination of drugs that caused her respiration to slow and stop.

 

She wanted to go to sleep, but not forever.  We were told she died a few hours after she went into her room that night.

 

She made a mistake that night, and it cost her life.

 

I have so much respect for the medical community, especially for those at Weill Cornell, where my husband and I have all our doctors.  It’s one of the main reasons, I’m here today, talking to you. I think with this health issue, we can, and we must do better.

 

We look at someone, maybe like Zoe, and think she could do better, she needs to try harder and be better than this.

 

We assume she is better than she is.  And that’s all true but not without the right treatment.

And not if we keep blaming the patient.

 

I think this health issue is still often misunderstood and terribly stigmatized.

One day Zoe and I were arguing about her going into treatment.  She said, in another one of those I’ll never forget moments: “Do you really think I want to be like this? If I could do better I would.”

 

She was so right, no one wants their life to be so out of control.  The non-compliant patient - - if they could do better, they would.

 

But at that time, Zoe didn’t have the medicine, the tools, the support to do better.  And that’s on me.  I didn’t know enough, but I could have, I could have known more if I had been informed.  And it’s on our doctors to treat this health issue, as they do any other health issue - - with cutting edge medications, therapy, support, and compassion. 

 

Dr Jon Avery here at Weill Cornell is working on just that.  Addressing stigma, talking about harm reduction, and reminding us that those who suffer from substance use disorders must be treated with dignity, and must be treated with respect in order to heal and get healthy.

And thankfully that is why you’re all here today.

 

Humanity, kindness, and intelligence is what makes great doctors. 

 

And great doctors all of you, our great doctors can and will change minds.