Reasons for the Holiday Memorial…

It might only be fall but the Wake the Nation team is preparing for winter.

Each year, the Wake the Nation team looks forward to hosting our annual Holiday Memorial. Though we dread the ever-increasing amount of ornament requests, not because of the work, but because it represents such loss, we feel sincerely privileged to be part of your family’s holidays.

Over the next week we will share all the details for requesting an ornament, but today, we want to explain what the memorial is, how it came to be and the many purposes it serves. The memorial is as significant to our team, as it is to honoring your loved one. If you aren’t already familiar with its origin, allow me to explain.

In 2012, my significant other passed away from a drug overdose, leaving behind our three-year-old son, the many nephews who looked up to him, his sisters, parents and dozens of friends. Wake the Nation was created within two months of his passing and was honestly, a way for me to avoid my grief. Six months later, while at the zoo with my son for the Holiday lights exhibit, I was overcome with the emotions I had been sweeping under the rug.

2012 Holiday season
My boyfriend’s nephews and our son the first holiday season without him, 2012.

Brookfield Zoo was the location of my boyfriend and I’s first date in high school, it was where we went so I could walk myself into labor, where we went for our son’s first outing after birth, and where we went regularly as a family on the weekends. It was our family’s spot and I was there without him.

Crying among the holiday trees and happy families I realized there was a way to maintain the significance of the zoo, my loved one’s memory during the holidays, and other’s loved ones, while simultaneously calling attention to the disease that took him from me. Thus, the Wake the Nation Holiday Memorial at Brookfield Zoo’s Holiday Magic was born.   

Holiday Memorial 2017
My boyfriend’s nephews (they are mine too!) and our son, 2017. They love decorating the tree!

Today the memorial’s purpose is threefold. It first and foremost honors the lives of those we’ve lost to overdose. It is not only about them, it is for them. In the months it takes our team to collect and hand write each loved ones’ name and prepare their photos, we come to genuinely feel connected to their stories, as so many of you share with us.  

Secondly, it becomes a space where families come to meet, share their love for the person they lost, and celebrate the holidays with others who know the pain of spending the holidays with grief, instead of their loved one.

Many of the families who come to decorate with us have come every year and we can’t tell you how much their friendship has come to mean to us and each other. This past year we ended up hosting a “tree undressing” just so we could all spend time together again! Please know, each ornament is prepared, handled, hung, and removed by our team and volunteers as if it was our own.

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The many people we’ve come to call friends who join us each year to decorate the holiday memorial.

Finally, the tree, being located at Brookfield Zoo, is seen by thousands of families visiting each weekend throughout the holiday season. Not only does the tree make a statement and raise awareness, as it represents the overdose epidemic our world is facing, but it let’s those impacted by it know they are not alone. Moreover, it reminds those who have not been impacted by overdose that those with substance use disorder, matter.
They are worthy of our love, honor and remembrance.

Look for our flyer in the coming days!
In the meantime, visit our Facebook page to see more photos of the holiday memorial’s evolution.

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Compassion: The value at heart

Compassion (noun)
:sympathetic consciousness of others’ distress together with a desire to alleviate it

At the root of compassion is the Latin words, “com” meaning, “with, together” and “pati” meaning, “to suffer”.  In the mid-14c. compassion or rather, “compassioun” meant “suffering with another”. Today’s definition includes a significant alteration, “a desire to alleviate” such suffering.  It is a significant change.

It is also a key ingredient in executing Wake the Nation’s vision, mission and goals. As the Wake the Nation team works to complete our 2019-2022 strategic framework we find ourselves defining the values that shape, support and reflect our philosophy. Compassion is at the core.

Compassion is the heartbeat that pumps motivation into our team. At the center of the organization’s circulatory system, it supplies inspiration, transports love enriched determination and creates momentum. Compassion is responsible for Wake the Nation’s movement.

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Recognizing the stigma surrounding substance use disorder and mental health which prevents people from seeking help, we wish to alleviate it. No longer should any person have to suffer alone.

As we move forward, designing the framework with which we will base our work, compassion is among our most valued beliefs. It is how we will treat our clients, it is how we will respond to those who do not understand mental health illness and it is how we will carry out our mission.  We expect you to hold us accountable. And we hope you will consider carrying on with compassion too.

Language matters: “Achieving” Sobriety, Defining your Recovery, and Reducing Harm

 

Sobriety is defined as the state of being sober and the definition of sober, is outdated, referring to being unaffected by alcohol. (Interesting, how it only mentions alcohol, right?) Today most people reference being sober in regards to being free from mind altering substances. And truthfully, when you factor caffeine, nicotine, and psychotropic medications in there, most people are not sober. So can we talk about the glorified pedestal we put sobriety on? And maybe take it down a notch?

When people use the phrase “achieving sobriety” they inadvertently imply that not being sober is an act of failure -if that’s the case, the majority of the world is failing at life. Fortunately, that’s not the case. (Sidebar: Psychotropic medications for example have been an effective and beneficial option to those who need them.) Sobriety isn’t something you achieve or fail to accomplish. Yes, if you can do it, be proud, because it’s definitely difficult to do and maintain, especially for those who have had an addiction. However, let’s be sure the language we use doesn’t put others down in the process.

^^This reminds me of the mom politics surrounding childbirth. Women who endure the pain of a non-medicated vaginal delivery are often proud of their pain medication-free delivery method. And to them, I say, “Way to go!” However, it does not make you a better mom than the woman in the room next door with an epidural.

Not having substance use disorder doesn’t make you a better person than someone who does.

All this said, please consider the word “achieve” when you are talking about sobriety.

Further, in a recent conversation with Dan Bigg who is often referred to as the, “Patron Saint of Harm reduction” and the director of the Chicago Recovery Alliance, I found myself reevaluating the word, “recovery” a term he defines as, “any positive change”. This coincides well with the definitions of recovery according to various dictionaries which define it as, “the act, process, duration, or an instance of recovering” and “a return to a normal or healthy condition”. With recovery often being seen as a process, or current state of being, and seeing as most people don’t use it in the past tense claiming to “be recovered” from substance use disorder, perhaps recovery is what we should encourage people towards, instead of sobriety.

You see, sobriety, being looked at with its high and holy zero-tolerance policy, it’s pretty difficult to acquire. As mentioned, most people don’t have it going on. Further, the word has recently evoked controversy among those in recovery over whether those who use medically assisted treatment are able to consider themselves sober. By current definition, which only references alcohol, the answer is yes. And if you are going to use today’s interpretation of the word – free from mind altering substances- well than no one who uses caffeine, nicotine, psychotropic medications, or has an occasional alcoholic beverage is ever always sober.

See the word sober, as it’s defined, carries no real time frame. So I’m not sure when or why we allowed sobriety to be the golden standard of recovery, but I think it’s time we all see recovery as individualized as the people and treatment plans for those with substance use disorder.

Perhaps those with substance use disorder and those impacted by substance use disorder should simply work toward recovery through reducing harm and any positive change.

#DefineYourOwnRecovery

Language Matters: The dirty truth about the word, “Clean”.

The word “clean” has been a part of language surrounding drug use and addiction for years. But we use it for other topics too, such as clean eating and clean living. It sounds positive and health focused and we need those components when talking about substance use disorder.

However, clean’s antonym is “dirty” and “being clean” when referencing sober time, implies that someone using drugs isn’t clean, they are instead dirty. That is a really unfair and false implication. Phrases like, “She’s been clean” or “he had a dirty drop” reinforce the ignorant and old school image of a “junkie”. Which is synonymous with unworthy, unloved, and the various other words we discussed in our previous post on language and the word “addict”. It instills the image of a homeless person, living under a viaduct, “shooting up” with old, used, dirty needles.

And here’s the thing about that image, today’s typical person with substance use disorder, isn’t homeless or dirty. As it relates to the opioid epidemic, the typical person with heroin use disorder is from the suburbs, and quite honestly, that doesn’t matter. Regardless of if the individual is from the city, suburbs, or a rural area, regardless of if they are homeless or not. Heck, regardless of if they are clean or not. They are people, and they deserve the same respect, treatment, and dignity as anyone else. We have to stop dehumanizing people and undermining their worth.

These words; “clean” and “dirty” have roots in the past and we can look just to the early 1980’s with the development of needle exchange programs following the CDC’s suggestion to avoid injecting drugs and sharing needles to prevent transmission of HIV during the AIDs epidemic to see it. (It’s not that needle exchange programs are bad; by no means do I mean to suggest they are. Needle exchange programs have demonstrated endless positive impacts in reducing harm; there is scientific evidence to back them, and I fully support them.) It is however, at that time when people with AIDS were viewed as “dirty”. Their condition was considered a result of their “lifestyle choices” and they were often shunned, making it difficult, if not impossible to access care. Is this sounding familiar?

It sounds a lot like we are repeating history instead of learning from our mistakes.

The words, “clean” and dirty” don’t belong in conversations regarding Substance Use Disorder, just like they don’t belong in conversation about AIDS. So what should we be saying instead?

Well instead of suggesting someone’s drug test was “clean” or “dirty”, we should just say the result were negative or positive. And instead of saying, “I’m clean” to reference the fact that a person is not currently using drugs, why not just say, “I’m not using”, “I’m in recovery”, “I’m in remission”, or “I’m sober” any of which not only highlight sobriety, but also don’t put down those who haven’t gotten there.

 

Language Matters: The word “Addict” and not letting your struggle become your identity.

Language matters. This isn’t breaking news; we’ve been saying it for years. And when it comes to language surrounding health, the phrase, “sticks and stones may break my bones but words can never hurt me” is far from true. Particularly when it comes to language surrounding addiction, words can prevent people from accessing treatment.

Now I know someone is going to want to argue that, because words preventing people from getting treatment seems ridiculous. And I agree, it is ridiculous! But that doesn’t mean it isn’t true. And in defense of that statement, I want to point out hundreds of international experts spent more than ten years defining and classifying mental health disorders, including terms regarding addiction, or rather “substance use disorder”, specifically with the goal of improving diagnosis, treatment, and research. If language didn’t impact health, why would so many experts spend so much time doing that?

That said, I’m going to spend some time in a series of blog posts, explaining the language we need to stop using, staring with the word, “addict”. The word “addict” has become highly stigmatized. It’s synonymous with other words such as “junkie”, and “druggie”. It is often pre-faced with “loser”, “bum-a$$”, or “low-life”. It includes the connotations of “dirty”, “thief”, “scumbag” and “worthless”. It is all so overwhelmingly negative.

Imagine being called that each day. Imagine being treated like that, like you mean nothing. Imagine people who don’t even know you acting as if you were better off dead. And imagine, your friends or family feeling that way about you. I think, I’d start to believe it. I think it would be hard for anyone not to. And I think living like that would further my struggle, not help it.

The weight of those words, make people feel unworthy of love, life, health, and happiness. So how are they supposed to get any better? I’m going to go as far as to say this, calling someone an “addict”, is bullying, its emotional abuse. It needs to end.

Now before anyone goes jumping on their high horse to tell me the first step in the road to recovery involves admitting there is a problem and acknowledging they are an “addict”, hold off. (Because not everyone uses a step-like program to sobriety and those that do may not share the same interpretation of each step. And honestly this isn’t in favor or against the step program. So let’s not make it that way. I am all for whatever step and interpretation gets a person to sobriety. If calling themselves an “addict” does the job, they can! Infact, when people take ownership of a word they have the ability to change the stigma associated with it and for that matter, I think they should. Further, I think they should be able to say it with pride, not shame. But everyone else needs to stop).

Let’s focus on what we really need to get to. In my professional life I’ve had the opportunity spending years working with people who have special needs and mental health disorders. I spent much of my earlier career working with children who have autism. Language development appeared regularly on our quarterly mandatory organization agendas. “People-first language” was adopted as the standard of care and it is high-past time we apply that logic to substance use disorder.

It is typically with mental health diagnosis’s (and a handful of physical ones such as diabetic) that we label a person by their health. (ie. Autistic, Schizophrenic, Bipolar, psychotic, alcoholic). These are all examples of language in which the fact that the individual is a living, breathing, human being with worth and feelings, is secondary to their health. It is not people-first language, and it is not supportive, and it can feel dehumanizing.

What I learned from working with people who get labeled by their diagnosis, is that for starters, they don’t appreciate it. They don’t see it as their identity. It is a part of them, but it is not who they are, and neither are the connotations that accompany them.
In so many online support groups for friends and family of those with substance use disorder I see the initials “AD” and “AS” appear. It stands for “addicted daughter” and “addicted son”. And while I believe those who use the term mean well, they have simultaneously just put their loved ones addiction, ahead of the fact that they are their child. Introductions that include a diagnosis are unnecessary. It is not your “addicted child”, it is not “your child who has an addiction”, it is simply “your child”.

So I ask you this, consider what side of the mental health you are on. Consider the statistics associated with mental health and substance use disorder, do you want to see those change?  Do you want to see an improvement in the way mental health, substance use disorder, and the opioid crisis are treated? Do you want to see more accessibility to treatment?  Do you want your loved one to get better?

 

If so, start by considering your language.

Do we really need to keep arguing about choice?

In response to the following post…

 

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Typically when we think of a habit, we think of a regularly practiced tendency that is difficult to give up. But there are other definitions of a “habit” such as it is a person’s “bodily condition”. So you are right, addiction is a habit. But the definition this post is implying isn’t the one that was intended when society adopted the term, “habit” in relation to addiction. A person who has an addiction to drugs or alcohol depends on such substances, and therefore habitually uses. It’s a bodily condition because the way drugs work in our bodies, they have the ability to chemically alter the rest of our body, including the way we are wired to think and act. And regardless of which definition you, or anyone applies to it, it does not negate the fact that addiction is a health issue.

For so long society has taught us to view addiction as a moral failing and “a poor choice” but society has done a really terrible job at backing that claim up with science, or any evidence for that matter. Addiction, or substance use disorder as referenced in the DSM5 –think of it as a dictionary for doctors and used for making diagnoses—backed by science- classifies addiction quite different from society’s collective, generalized viewpoint. I personally, prefer the science over generalizations, society’s definition of social norms or socially acceptable behavior, and completely irrelevant unsubstantiated claims- but that’s just me.

So now that we’ve established addiction is a health issue. Let’s address some other points in this post. Twice, the phrase, “addiction is a choice” appears. I think this should be repeated ….silently….in one’s head…until the phrases implications really sinks in. “Addiction is a choice” implies people wake up and decide, “today I’m going to become addicted to drugs”. I find that hard to believe and think anyone with a smidgen of intelligence would agree that of the millions addicted to drugs, most if not all, didn’t wake up and make a choice to be addicted. So now that we’ve let that sink in, let’s just stop with the “addiction is a choice”. It was false the first time it was said. It is still false now. And it’s going to be false ten minutes from now.

Let’s focus on something in this post that is true. Before the drugs or pills you did not have an addiction. This makes me giggle because that’s just logic. But what does this statement do to negate addiction as a health issue? Before 8 years ago I didn’t have anxiety. Before 5 years ago I didn’t have PTSD. Before 6 months ago, I didn’t have polycystic ovarian syndrome. Before yesterday I didn’t have a migraine. But things change, including health, and now I do. And it’s weird because I totally didn’t decide to get ANY of them. Weird.

Interestingly, I’ve been given prescriptions for some of my health inflictions and some of them have highly addictive qualities. (I happen to be fortunate to know quite a bit more than the average person about a solid percentage of medications. And further, to have a doctor who will spend a full hour with me addressing questions and consulting with my pharmacist. But I wonder how many people get that type or treatment. Because I know one too many people who became addicted from prescription drugs following necessary treatment).

Regardless, of treatment procedures or “weak minds” or lack or self-control, as referenced in this post. What makes it ok to devalue a human life? And what kind of human does that devaluing? Debate that. Because “choosing to debate the science of addiction without the expertise”…..<—-well that, just read that til it sinks in.

A letter to David Vincent

A letter to Mr. David Vincent (and those sharing his post),

I’ve seen your Facebook post, as so many have. I think it’s worth a discussion.
davidvincent

I’ll start by admitting, I’m not sure I understand the placement of the quotation marks in your incredible inaccurate status. Unless it is there to imply sarcasm in regards to the word “free” given narcan is not free.

What makes you think it is free?

Narcan, or naloxone, is $5000 for the auto-inject, $150 for the nasal spray, and $45 for the vile and syringe at Walgreens, last I checked.  It isn’t always covered by insurance, unlike “chemo”. (Again, what’s up with the quotations?) It is made available for “free” by nonprofit organizations like the one I operate, which PAYS for it, and then gives it away because who am I or you or anyone else to judge the value of another person’s life?

Fun fact for you: The auto-inject naloxone was initially on the market for $400, but the price was raised to $5,000 as the demand for it increased. This may sound familiar if you are aware of Mylan’s appalling skyrocketing price of the epi-pen for anaphylaxis. One might argue pharmaceutical manufacturers see people’s lives as a matter of making profit. That said, if you want to have some kind of feelings or opinion about who gets treatment and who doesn’t…take it up with big pharma, start a nonprofit, or dish out the cash for someone else’s treatment. But deciding who gets to live and who gets to die based on YOUR interpretation of a disease – opposed to the definition in the DSM5 – is ignorant. And further, this uneducated “analogy” doesn’t actually help anyone. It does however, say a lot about the quality of individual who wrote it and arguably about those who share it. If the goal of posting it was to benefit cancer patients, it does absolutely nothing of the sort. What it does do, is hinder those who see it, who suffer with an addiction, from getting help. Perhaps helping people with addiction isn’t important to you or those who share it, but is it necessary to put those people down? That’s the only thing your status has accomplished. That and putting down the work of people who fought to change the laws to make narcan accessible.

You want to do something for cancer patients? Then actually do something! You can even call me up and I will gladly help you navigate setting up a 501c3, raise funds, donate my time and money, and hit up Washington as I’ve done for addiction. I’ll do it all without downplaying another health crisis and judging the value of another’s life.

Sincerely,
#wakethenation