Monday, November 6, 2017

#MicroblogMondays: "Let's open up"

(Once again, not quite a "microblog" post...!)

I read an opinion piece in The New York Times this weekend that struck a chord with me.

In the opening paragraphs, two friends having dinner together are asked by the waitress if they would like wine. Instead of simply declining, one woman explains, "I'm celebrating 10 years of sobriety this weekend."  Being an addict is not something that most people will easily admit to -- but her honesty is rewarded:  Near the end of the meal, the entire staff converges on the table, bearing a dish of ice cream with a candle stuck in it, singing "Happy birthday."

The woman was Faith Zenoff, director of a nonprofit recovery centre, who says it took her years to be able to tell her story to friends and family members, let alone talk about it in public. But now:
...she's promoting an idea considered radical in addiction circles: that people in recovery could be open and even celebrated for managing the disease that is plaguing our nation. She and other advocates believe that people in recovery could play a vital role in ending the addiction epidemic, much as the protest group Act Up did in the AIDS crisis.
I have never been (& hopefully never will be) addicted to drugs or alcohol -- and I recognize the very real stigma that addicts live with. My own story is, admittedly much different.

But I know the (different, admittedly, but also very real) stigma that's attached to pregnancy loss, infertility & childlessness, and how difficult it is to share my story honestly and openly -- to watch as people react with shock and horror, and (worse) pity and (worse yet) platitudes -- to be excluded (sometimes deliberately, sometimes unwittingly) because I don't have children. And I think there's some lessons for us to take away from this article.

I have written before about the healing power that can be found telling our stories.  Telling our stories (even in abbreviated form) was a central focus of the support group we attended and later helped facilitate for a decade. It's also a major part of Alcoholics Anonymous, other 12-step groups and other kinds of support/self-help organizations.

But in most of these groups (online & in "real life"), we tell our stories to each other.  Certainly, there is healing and comfort to be found in sharing what we've been through, in the bonds we form, the knowledge that we're not alone, that we're not the only ones this has happened to, that others have experienced something similar.

But as the article points out, the anonymity and privacy of these groups don't help us in the world outside of them.  It doesn't help others understand the pain we've been through, the obstacles we have encountered (and sometimes overcome), or just how common it is to be dealing with these issues (i.e., the very real possibility these issues can and very likely will touch them directly too, at some point in their life). 
...I’ve seen the miracles these programs make possible. Anonymity creates a sense of safety that recovering addicts desperately need. Twelve-step programs save countless lives. There are many reasons not to tamper with them. 
But I’ve also met men and women who are 20, even 30, years sober. They’ve overcome adversity and often trauma to live lives of courage, resilience and grace... 
We need to hear more from them... why should they remain silent? “It’s like being a vegan but only being able to talk about it in a kitchen or a hospital,” Ms. Zenoff said, “or with another vegan.” [emphasis mine] 
The recovery movement is taking its cue from the gay rights and AIDS awareness movements of the 1990s:
At the onset of the AIDS epidemic, many Americans blamed gay men for bringing the fatal disease upon themselves. Unenlightened Americans today consider addiction a moral failing as well, one as likely to spur a trip to prison as to a treatment center. 
“The Act Up marches, the AIDS quilt and the posters made people more sympathetic, and made gay people seem more human,” said Daniel Royles, an AIDS historian at Florida International University. 
The activists shifted people’s understanding of the disease. After several years of pressure from people with AIDS and their supporters, to give one example, the federal Health Resources and Services Administration spending on AIDS programs increased more than thirteenfold in 1991, to $220.6 million from $16.5 million. 
The government hasn’t yet done the same for addiction, even though this treatable disease kills more Americans every year than AIDS at its 1995 peak.
I think about the statistics related to pregnancy loss, infertility and childlessness. One in eight couples experiences infertility.  Only about 30% of IVF cycles are successful -- meaning some 70% are not.  One in four women will lose a pregnancy at some point. In the United States, the Centers for Disease Control and Prevention estimates about 24,000 babies are stillborn every year.  If you do the math, that's about 66 stillbirths A DAY.

I remember someone once remarking that if a small plane crashed and killed 66 passengers every day of the year, it wouldn't be long before something was done to investigate and correct or at least alleviate the situation. 

And yet people are far more familiar with the tragedy of Sudden Infant Death Syndrome, even though statistically, stillbirths claim the lives of 10 times more babies than SIDS -- for the simple reason that SIDS parents and organizations started speaking out & demanding answers as to why their newborn babies were dying, suddenly & without explanation.

"Despite the headlines, we’re still a nation in denial [about the extent of the addiction problem in America],"  the article says.
Jim Hood, Facing Addiction’s co-founder and chief executive, joked that addiction “is an illness that nobody is ever going to get, nobody ever has and nobody ever has had.” ...If Americans heard enough stories, would they clamor for more research funding and treatment beds then?
(Substitute "infertility" or "pregnancy loss" for "addiction" in the quote above...! Does this sound familiar?? Everybody believes that pregnancy loss & infertility is something that happens to other people, right?)

It's difficult to open up and to let the people around you know the truth about what you have endured -- to open yourself up to misunderstanding, hurtful comments and intrusive questions. I am certainly not a poster child in this regard. I will admit that I write/blog a good game; I'm less successful when it comes to practicing what I preach and moving outside of my comfort zone.

But I'm trying... :)

You can find more of this week's #MicroblogMondays posts here.  


  1. And I'm glad you are trying and bravely sharing your story. Because otherwise, how can change be enacted? So thank you for being a trail blazer. It is important and it is having an impact, even if it's slower than we'd like.

    1. Sharing online is better than not sharing at all, yes?? ;)

  2. " I am certainly not a poster child in this regard. I will admit that I write/blog a good game; I'm less successful when it comes to practicing what I preach and moving outside of my comfort zone."

    That's me too!! I'm much better on a personal level, matching what I say to the person, whether they're perceptive or not, whether they're kind or not. Though I've just been asked to contribute to another article, but this one is in the major newspaper of the city, and there is absolute certainty that people I know will read it. I'm freaking out.

    1. I would too. I was offered the opportunity to be interviewed on CBC Radio about the importance of keepsakes for babies that die. My keepsakes from the hospital are hugely precious to me, but I just couldn't do it. I might be able to now... I find it (comparatively) easier talking with others about Katie than about childlessness. I guess I've had more practice with that in support group, etc.

  3. I'm like you. Good online, hesitant in person. I think you make an excellent analogy here, and I will be more courageous when opportunities to share arise. Look at the power of the #MeToo movement recently. People realized WOW. This is more pervasive than I ever knew.

    1. Yes, I think that was an eye-opener -- especially for men. Not all of them are part of the problem, but they all need to be part of the solution...

  4. Arrrghhhhh, I wrote a comment and my trackpad ERASED it. Keeps happening. :( The gist was that I love this post so much, I think it's a great comparison. Seeing the reactions my dad gets when he explains that he doesn't drink (sometimes he leaves it at that, sometimes he says he CAN'T drink or he's sober) is similar to reactions we get to infertility and loss -- pity, platitudes, the infuriating comments that assume they have thought of something you haven't, but when you explain it does put a face to the issue and spreads awareness of prevalence, definitely. I am probably more of an oversharer in person, and it leads to resentment sometimes that I feel I have to explain, but how will people know the intricacies of IVF, loss, and the adoption process if people don't share the stories that didn't go as expected? I love your voice online. It is really helpful within the community, and I agree that the more we can speak (as we gain comfort levels of course) outside our community, the better it will be for awareness, for possible funding, for advocacy, and just for plain old empathy where it is sadly lacking sometimes. Great post!

  5. This really speaks to me. I love the reaction of the restaurant crew but honestly don't think something like that could ever happen to me. Now, I am as open as I can, but in real life, I am often met with blank stares. Obviously, many people don't know what to say when someone gives a negative answer to "THE" question (Do you have kids?). It doesn't bother me that much anymore because how will they learn that this can be a tough question if nobody tells them?

    Now, connecting my real "me" with my blog is a different story. I wrote so many personal things because I think that's the most helpful, but I'm not sure I want anyone to know it was me who wrote it...

    Is it about shame, I wonder? And if yes, why?