Hannah Wept, Sarah Laughed: Vlog 10/24/10 from Keiko Zoll on Vimeo.
Showing posts with label Advocacy and Awareness. Show all posts
Showing posts with label Advocacy and Awareness. Show all posts
October 25, 2010
My First Vlog
Too lazy to write, so here's my first vlog for "Hannah Wept, Sarah Laughed." In full disclosure, I've created this as part of WEGO Health's Health Activist Vlog Contest, but I like the idea of adding this rather interesting, dynamic media to my blog. Plus, you get to actually see my face and voice. So, here's the story on why I'm a health activist. Enjoy! Feel free to comment here or directly on the Vimeo page.
October 18, 2010
RESOLVE-ing to make a difference
This year, I'm walking in as a volunteer and Board of Directors member, and Larry's walking in right back with me, also as a volunteer. I talk a little more about my experiences at the Annual Conference blog here and why I'm coming back this year.
I'm also officially inviting every single reader of this blog- no matter where you live- to attend this year's Annual Conference on November 6, 2010 in Marlborough, MA. I know the cost can seem like a lot, but scholarships are available. I should know: it was the only way Larry and I could afford to go last year. I'm telling you: it's totally worth it to attend this conference, if not for the vast array of information, resources, and people you'll meet, but for the sense of hope you'll walk away with at the end of the day.
1. Our keynote speaker is Melissa Ford, the ever-fabulous and award-winning author of Stirrup Queens. I'm kind of peeing my pants over the opportunity to meet her in person.
2. Plenty of information if you're considering adoption. The Annual Conference features an adoption track of sessions, including an adoptive and birth parent panel.
3. Plenty of information about IVF and donor egg. Again, a track just for donor egg sessions. We found these programs particularly informative and helpful last year.
4. Consumer access to area vendors. Clinics, adoption agencies, donor egg matching services, pharmacies that specialize in fertility drugs... there are a ton of vendors for you to connect with one-on-one. Whether you're a consumer or an industry professional, it's a great chance to network and gather resources.
5. Raffles! Because who doesn't love a good raffle?
6. New: Ask the Experts panels. Whether you've got questions about adoption, donor egg, your wonky ovaries, your wonky husband, we have a whole series of experts lined up ready to answer your questions from Reproductive Endocrinology, Acupuncture, Men's Perspectives, Nutrition, and more!
7. Come meet me! Not that I'm any kind of main attraction, but it would be awesome to meet some of you fabulous readers and followers IRL.
...So?
What are you waiting for? Register today. And if you are going, please do let me know in the comments - I'd love to meet up and grab lunch together during the Conference!
October 14, 2010
Crowdsourcing: Best online donation system?
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| Photo: Dave Dugdale (Rentvine) |
1. Something that's easy for me to admin.
2. Something that's easy for folks to click "donate," fill in their credit card info, and off the money goes.
>>2a. The money either goes directly to me in a separate checking account or directly to the organization. (Ideally, I'd like it to go to me so my husband's company can match the funds.)
3. Something that doesn't take too large of a cut of donations (or any at all).
4. Not a must, but something with it's own customizable widget would be nice too.
So I ask of you, dear readers:
What has been the best online donation system you've found out there? What donation systems should I avoid? What's the best way to setup your own online fundraiser via your blog?
Lay it on me folks.
August 18, 2010
MA Infertility Mandate Update Signed Into Law!
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| Gov. Deval Patrick signs the Infertility Mandate updates into law on August 10, 2010. (Photo courtesy of Davina Fankhauser.) |
It was tense for a solid week between the passage of the bill at the State House and whether or not Gov. Patrick would sign it; it was assumed he would, but there was no guarantee and there was a tight turnaround form the last day of legislative session here in MA and the last date he could actually sign the bill. But at the eleventh hour, Gov. Patrick came through. It was one of the moments where I was really proud to be a constituent in a state where not only my concerns (and those of hundreds of others) were really heard but where our administration supports family-friendly, progressive healthcare legislation.
I have to give HUGE thanks to Davina Fankhauser and the wonderful women at RESOLVE of New England who lobbied to make this a reality, and of course to all my friends and readers and followers who contacted their legislators here in the Bay State. Nice work everyone :)
That being said... our work is not yet done. As great of a victory as getting the IF Mandate updates into law, Rebecca Lubens, Executive Director of RESOLVE of New England was quick to share two alarming pieces in the Boston Globe that ran last week. The first was an op-ed piece that was against the insurance mandate healthcare bill that Gov. Patrick just signed into law. As usual, infertility treatments were thrown under the bus as expensive, elective treatment that drives up the cost of healthcare for everyone. It's the same old (and largely incorrect) argument that our community hears all the time.
The second op-ed article specifically addressed the use of ICSI in infertility treatments, and tread dangerously close to promoting eugenics. Again, it cast a general sense that couples with IF are selfish in their desires to have children.
We may have won some victories at the MA State House, but we have a helluva battle against the media. Infertility has been assaulted by the media lately; they love to pick on us as their favorite target. We need to not only lobby our legislators, but our media outlets as well... because if we can't make a dent in this anti-infertility mediated culture war, we are going to be swallowed whole.
Still living between homes and up to my eyeballs in stuff with work. But, Larry put it best last night: "You seem really happy." And it's true- my job satisfaction is pretty damn high, which is a nice change. I'm feeling great about heading into this academic year. As for the house, we're supposed to close next Friday, and all of the powers that be that make this closing happen are optimistic that we will in fact close on that date. I'm practically salivating at the chance to get our stuff out of storage and into the house. Lol, it's been too long since I've seen those beautiful wide-plank pine floors :) Also, I discovered Restoration Hardware last night. That store will be my downfall... I want to furnish the entire house in nothing but their ungodly/insanely expensive furniture! (Realistically, this will never happen. I think I'll get, at most, these pillows.)
PS- there's still 2 weeks left to enter my Big IF Bloggy Giveaway!
August 2, 2010
When advocacy pays off
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Photo by Keiko Zoll. |
It's a great morning for Massachusetts. At the eleventh hour on the last day of legislative session, the Massachusetts infertility mandate update was passed favorably out of committee, and then passed the House and Senate! All we need now is Governor Patrick's signature and the update becomes law; there is no reason he wouldn't and he is expected to do so. We did it! The Massachusetts infertility mandate has not only been preserved, but updated to provide even broader standards of coverage that will help thousands of women in this state.
The updates to the law will be as follows:
"...Of the General Laws, as appearing in the 2008 Official Edition, is hereby amended by striking out the last sentence and inserting in place thereof the following 2 sentences:- For purposes of this section, ‘infertility’ shall mean the condition of an individual who is unable to conceive or produce conception during a period of 1 year if the female is age 35 or younger or during a period of 6 months if the female is over the age of 35. For purposes of meeting the criteria for infertility in this section, if a person conceives but is unable to carry that pregnancy to live birth, the period of time she attempted to conceive prior to achieving that pregnancy shall be included in the calculation of the 1 year or 6 month period, as applicable."The loophole of continual denial of coverage for women over 35 who experience recurrent miscarriage will be closed. The Massachusetts infertility mandate, which leads the nation in its coverage, will now finally be in line with current ASRM guidelines and standards.
It took more than just our legislators to make this happen: it's folks like us all over the state who wrote emails, letters, and called their legislators. It's amazingly tireless women like Davina Fankhauser, RESOLVE of New England's Advocacy Director, who met with legislators and lobbied at the State House, who knows MA law inside and out. It's women like RESOLVE of New England's Advocacy Committee (Lee Collins, Sandy O’Keefe, Terri Davidson, and Amy Demma) who kept our members in the loop and prompted us when our action as constituents was needed. It's the friends of mine who had connections to folks on the Senate Ways and Means Committee and in the State House (shout outs to Claire and Deirdre!). And it's everyone who spread the word through Twitter, Facebook, and their blogs. Thank you, thank you, thank you to everyone that helped this important piece of legislation makes it way into law!
Change can happen when we come together as a community. And damn if it doesn't feel awesome when we do.
July 28, 2010
A Belly Full of Fire, Part Five: Millions of voices calling for change
PS: I'm also just over a dozen people shy of 200 followers to this blog. Once I hit 200, I'll do my first giveaway! Click here to follow my blog.
"We know the battle ahead will be long, but always remember that no matter what obstacles stand in our way, nothing can stand in the way of the power of millions of voices calling for change."
- Barack Obama (NH Primary Concession Speech, 2008)
“Nobody can go back and start a new beginning, but anyone can start today and make a new ending.”
- Maria Robinson
A Belly Full of Fire, Part Five: Millions of voices calling for change
You've felt the fire burning in your belly. You've taken the pledge. You've seen how advocacy can be a source of healing. You've considered the possibility of being a part of a movement, whether you're the lone nut or the first follower. And for a few moments, you could picture why all this hard work is totally worth it.
So... now what?
Reader StolenEggs (aka Fox in the Henhouse) made a great comment on Monday's post about up/downstream approaches to advocacy:
But I wonder how many people are actually a little like deer caught in headlights wondering, "Which way do I go?" In the end they are neither upstream nor down because they are frozen due to the sheer enormity of the situation.
I can totally respect that: Rome wasn't built in a day, throwing starfish back into the sea and all that. Raising awareness and advocating for infertility isn't something you can successfully accomplish in one day. Hell, it might not even be something we can successfully accomplish in a lifetime... but we can try.
My hope is that this series has stirred something within you, inspired you, fueled that fire in your belly. I can't tell you exactly how you can advocate for infertility: everyone finds their own path. Only you know how comfortable you are, what boundaries you are willing to push within yourself, how far you are willing to go.
...but of course I'm not going to abandon you after four posts and leave you with "Go west, young advocate!" I can give you a little nudge on some brainstorming. But the rest is up to you.
Like the post about upstream/downstream work, there's a lot you can do on both the small and larger scales, and even in between. It all depends on your comfort level and time commitment- and those of course can be fluid and change over time. Here are some ideas to get you started with becoming your own infertility advocate:
From the comfort of your living room, you can...
+ Utilize social media: Your blog, Twitter, Facebook... a lot of you are already doing this. Get your message out there. Keep it fresh, unique, engaging. Build readership and followership. Get yourself on blogrolls. Network. Check out my blogroll on the sidebar, or Mel's massive ALI blogroll over at Stirrup Queens to get started. If you're in New England, consider joining the New England Infertility Blogger Network.
+ Visit RESOLVE's website: Recently updated and full of resources. Go explore it and see what it has to offer, whether it's the Pledge, the Center for Infertility Justice, or Project IF - there are lots of great resources for you to get started on a national level in a "from the comfort of your own home" way.
+ Write letters to your legislators: Emailing is great, phone calls are nice too, but when legislators have to actually open a mailed letter, there's a greater chance your words will actually be seen by said legislator. For the cost of a postage stamp (lol, I sound like Sally Struthers) you too can advocate for infertility awareness. This is especially important for states with mandated coverage or those who have pending legislation that threatens or supports infertility causes.
+ Email your friends, family, colleagues: A bit more daring, but just as effective. Tell them what you're going through. Ask for their support, whether emotionally or financially. I am still inspired by Willow at Write, Baby, Repeat, who wrote to her two cousins in April asking them if they'd be willing to donate their eggs. Talk about putting yourself out there. Even though they ultimately said no, what an act of bravery, of awareness building. A request like that doesn't stay locked in the corners of your brain- I'm sure her cousins will be much more sensitive, compassionate people for it. Even in such a small dynamic as one family, awareness is raised and advocacy happens. You have to start somewhere, right? And the ripples will spread out from there... her best friend agreed to donate her eggs two months later.
+ Donate money for infertility awareness/advocacy: I know it's hard to donate in a down economy. We've got a looming first-home purchase hanging over our heads, but I still try to find even a couple of bucks to throw to my important causes. I do it because I figure if I put enough good out into the Universe maybe it'll throw a little back at me. Also, check with your employer to see if they do employee matching for charitable donations. Tada! Double your contribution. Some organizations I'll pitch for your donation: RESOLVE, RESOLVE of New England, Parenthood For Me, and Rachel's Well.
+ Become an "armchair" philanthropist: Take it one step further... Try organizing your own fundraiser via your blog or FB or email. Set a goal. Set a timeline. Ask for donations. Maybe build in some incentives. Even if you only get $10 that's $10 more than you started with and $10 toward an important cause. Success isn't necessarily measured in the amount of what you can raise doing something like this but in the fact that you raised anything at all. Or join a fundraiser already in progress, like reader Sonja has for the A.M.S. Endometriosis Foundation Online Auction. Or how Busted Kate helped a grieving family with DuckFest. Or how Parenthood For Me started her own non-profit that gives grants for adoptive couples! Or how Mrs. Tiye over at Broken Brown Egg is helping to raise awareness about how infertility impacts the African-American community at her first A.H.A. Gala For Infertility Awareness in Chicago in September.
There are lots of bloggers out there who are finding ways to raise awareness, raise funds, and advocate for change. These are just the few I could think off the top of my head, but if you're a reader here and I've missed the amazing advocacy work you're doing such as fundraisers and other things, leave a comment and share with everyone else!
Lastly, I want to talk about Obama's quote above. (I try to keep my politics out of this blog aside from legislative advocacy as it relates to infertility and women's health.) I was WAY late on the will.i.am "Yes We Can" bandwagon, but when I first heard it, it moved me to tears. What's even more amazing is that the lyrics come directly from his concession speech from the New Hampshire primaries, when he lost to Hilary Clinton. It was a pretty big loss, but here we are, addressing him as Mr. President rather than Mr. Senator. I have always found this quote inspiring: even when he was knocked down, Obama still mustered up the strength to keep going. It's a lesson for life.
After 6,350 words devoted to infertility advocacy in this series, it all boils down to this:
1. If we don't advocate for infertility awareness for ourselves, no one will do it for us. We need to step up to the plate as a community.
2. Advocacy serves as a proactive way to heal old wounds and regain a sense of control with a disease that seems to rob so much control from us.
3. Find a way to advocate in a way that feels comfortable to you. Fuel that fire in your belly. Then, when you're ready, push yourself one step further.
4. Remember that infertility advocacy is not a lost cause. Do this for yourself. Do it for your partner. Do it for the 7.3 million people in this country. Do it because it matters and for what all the possibilities of successful advocacy could be. Have hope.
5. Start your advocacy today, from the comfort of your own living room. Just do something and start right now. Commit to change. Be the change, as Gandhi would say.
The time for silence surrounding infertility is over. The time for a positive, open dialogue is long overdue. The time has come for a million voices calling for change.
Will you be one of them?
Photo by Abe Novy via Flickr.
July 27, 2010
A Belly Full of Fire, Part Four: In a Perfect World
This is the fourth post of my five-part series on infertility advocacy. Catch up on Part One: Advocate or Abdicate, Part Two: The Wounded Healer, and Part Three: Which Direction Do We Swim?.
The lights go on the lights go off
When things don't feel right
I lie down like a tired dog
licking his wounds in the shade.
When I feel alive
I try to imagine a careless life,
a scenic world where the sunsets are all
breathtaking...
-Beirut, A Scenic World
A Belly Full of Fire, Part Four: In a Perfect World
This is one of my favorite songs I've been playing over and over again on my iPhone. I only discovered Beirut last year ago and I'm in love. What on earth does this quirky little indie tune have to do with infertility advocacy?
Let's play a game - Imagine. Let's imagine our careless life, our scenic world.
In a perfect world,
what would the fruits of infertility advocacy look like?
In a perfect world, we could all afford infertility treatments.
Better yet, they wouldn't cost a penny out of pocket. But if treatments still cost money, there would be state and federal grant programs for infertile couples; treatments could be counted as deductions on our taxes. And all insurers in all states would be required to cover treatments that fall within the latest medical guidelines. In a perfect world, infertility treatment would be regarded as a proactive health approach as opposed to elective and burdensome.
In a perfect world, it would be okay to talk about infertility openly. Oprah and Ellen and Tyra would have regular programs highlighting both the celebrity journeys of people like Celine Dion and Sarah Jessica Parker and Padma Lakshmi as well as real people from all walks of life.
In a perfect world, the racial disparity gap in healthcare would be closing. Conversations about infertility would transcend cultural and religious lines. Lesbian and gay couples would not be left out of the conversations either, because yes, even same-sex couples face infertility crises too.
In a perfect world, primary care physicians would pursue reproductive issues with an aggressive and proactive stance. Women and men would be taken seriously in their doctor's office. There would be widespread support groups in every community: more counselors and therapists who solely dealt with infertility issues. And couples wouldn't be afraid to be as honest as possible with one another instead of hiding behind quiet femininity or forced machismo.
In a perfect world, men are no longer an afterthought in the infertility community. The longing for fatherhood is just as valid as the desire to experience pregnancy and birth.
In a perfect world, we wouldn't be asked when we're having kids the day we get back from the honeymoon. We could complain about being infertile the way pregnant women complain about being pregnant. And if we do get pregnant, it's okay for us to complain and celebrate and do all of the things that would otherwise annoy the infertile community, because we've earned that right too.
And when we do resolve our infertility, we won't forget about the ones who are left behind. In a perfect world, we will proudly tell our friends and family the miracles it took to conceive our children.
In a perfect world, millions of dollars are devoted to research and clinical trials and comprehensive support networks and resources for women and men diagnosed with infertility. Our children will grow up with even greater access to care than we have now. In a perfect world, there is widespread dialogue about the importance of men's and women's reproductive health from an early age; we wouldn't be afraid to talk about the reality of fertility preservation in the context of sexual health education for teens.
In a perfect world, we will find an explanation for unexplained infertility. A miscarriage at six weeks is treated with no less support than a loss at six months. A stillbirth carries the same weight as the loss of a young child. In a perfect world, we will not forget about or ignore pregnancy loss, and instead elevate all loss with greater care and compassion.
In a perfect world, choosing not to resolve your infertility is not a sign of failure or giving up. Living childfree will not be regarded as lack or less than, but instead valued as a way for couples to redefine richness and fulfillment in their lives, and to bring themselves closure. In a perfect world, we will not be defined by our status as parents or otherwise.
In a perfect world, we will no longer be ashamed of or silenced by our disease. We will stop judging ourselves. We will be confident in who we are and where our journeys take us.
In a perfect world, we will conquer infertility.
My G-d, our perfect world is beautiful isn't it? Can't you just see it, taste it, feel all that weight and doubt and worry slip right off your shoulders and out of your mind?
And now our game of Imagine is over, for we do not live in a perfect world. That's why our advocacy efforts matter that much more.
Every act of advocacy brings us one step closer to a careless life, a scenic world where the sunsets are all breathtaking. What does your perfect world for infertility look like?
. . . . .
Tomorrow I conclude this series with a post that inspires a committed call to action. Stay tuned Wednesday for the final chapter of A Belly Full of Fire, Part Five: Millions of voices calling for change.
The lights go on the lights go off
When things don't feel right
I lie down like a tired dog
licking his wounds in the shade.
When I feel alive
I try to imagine a careless life,
a scenic world where the sunsets are all
breathtaking...
-Beirut, A Scenic World
A Belly Full of Fire, Part Four: In a Perfect World
This is one of my favorite songs I've been playing over and over again on my iPhone. I only discovered Beirut last year ago and I'm in love. What on earth does this quirky little indie tune have to do with infertility advocacy?
Let's play a game - Imagine. Let's imagine our careless life, our scenic world.
what would the fruits of infertility advocacy look like?
In a perfect world, we could all afford infertility treatments.
Better yet, they wouldn't cost a penny out of pocket. But if treatments still cost money, there would be state and federal grant programs for infertile couples; treatments could be counted as deductions on our taxes. And all insurers in all states would be required to cover treatments that fall within the latest medical guidelines. In a perfect world, infertility treatment would be regarded as a proactive health approach as opposed to elective and burdensome.
In a perfect world, it would be okay to talk about infertility openly. Oprah and Ellen and Tyra would have regular programs highlighting both the celebrity journeys of people like Celine Dion and Sarah Jessica Parker and Padma Lakshmi as well as real people from all walks of life.
In a perfect world, the racial disparity gap in healthcare would be closing. Conversations about infertility would transcend cultural and religious lines. Lesbian and gay couples would not be left out of the conversations either, because yes, even same-sex couples face infertility crises too.
In a perfect world, primary care physicians would pursue reproductive issues with an aggressive and proactive stance. Women and men would be taken seriously in their doctor's office. There would be widespread support groups in every community: more counselors and therapists who solely dealt with infertility issues. And couples wouldn't be afraid to be as honest as possible with one another instead of hiding behind quiet femininity or forced machismo.
In a perfect world, men are no longer an afterthought in the infertility community. The longing for fatherhood is just as valid as the desire to experience pregnancy and birth.
In a perfect world, we wouldn't be asked when we're having kids the day we get back from the honeymoon. We could complain about being infertile the way pregnant women complain about being pregnant. And if we do get pregnant, it's okay for us to complain and celebrate and do all of the things that would otherwise annoy the infertile community, because we've earned that right too.
And when we do resolve our infertility, we won't forget about the ones who are left behind. In a perfect world, we will proudly tell our friends and family the miracles it took to conceive our children.
In a perfect world, millions of dollars are devoted to research and clinical trials and comprehensive support networks and resources for women and men diagnosed with infertility. Our children will grow up with even greater access to care than we have now. In a perfect world, there is widespread dialogue about the importance of men's and women's reproductive health from an early age; we wouldn't be afraid to talk about the reality of fertility preservation in the context of sexual health education for teens.
In a perfect world, we will find an explanation for unexplained infertility. A miscarriage at six weeks is treated with no less support than a loss at six months. A stillbirth carries the same weight as the loss of a young child. In a perfect world, we will not forget about or ignore pregnancy loss, and instead elevate all loss with greater care and compassion.
In a perfect world, choosing not to resolve your infertility is not a sign of failure or giving up. Living childfree will not be regarded as lack or less than, but instead valued as a way for couples to redefine richness and fulfillment in their lives, and to bring themselves closure. In a perfect world, we will not be defined by our status as parents or otherwise.
In a perfect world, we will no longer be ashamed of or silenced by our disease. We will stop judging ourselves. We will be confident in who we are and where our journeys take us.
In a perfect world, we will conquer infertility.
My G-d, our perfect world is beautiful isn't it? Can't you just see it, taste it, feel all that weight and doubt and worry slip right off your shoulders and out of your mind?
And now our game of Imagine is over, for we do not live in a perfect world. That's why our advocacy efforts matter that much more.
Every act of advocacy brings us one step closer to a careless life, a scenic world where the sunsets are all breathtaking. What does your perfect world for infertility look like?
. . . . .
Tomorrow I conclude this series with a post that inspires a committed call to action. Stay tuned Wednesday for the final chapter of A Belly Full of Fire, Part Five: Millions of voices calling for change.
July 26, 2010
A Belly Full of Fire, Part Three: Which Direction Do We Swim?
This is the third post of my five-part series on infertility advocacy. Catch up on Part One: Advocate or Abdicate and Part Two: The Wounded Healer.
Allow me to tell you a story.
A village by the river is thrown into crisis as babies suddenly fill the river, crying and gasping against the strong current. Being such a small, closely-knit community, the village instantly comes together into action. The villagers run to the banks, using nets and rope to try and pull the babies from the water. Some men cast off their shoes and shirts and dive right into the frigid waters, grabbing as many babies as they can as dozens rush by them. The villagers are only so many in number, and the babies keep coming. They cannot possibly rescue them all.
Some villagers suggest heading upstream to see what is causing all of the babies to be sent down the river. But other villagers shout above the chaos: "No! We must stay here and save the babies we can!" And other weary villagers climb up and collapse on the riverbanks, soaked to the bone and exhausted from trying to save so many babies. "What's the point?" they pant, "We can't save all the babies."
A party heads up the river. Others continue to dive in. Some are simply too exhausted to go on. The party returns from upstream, looking haunted and their faces ashen. "There is an evil king directing his army to throw his kingdom's babies into the river. We could overthrow his tyranny if we get enough of you to join us." The villagers argue about what to do next.
All the while, the babies continue to flow down the river helplessly, some scooped up, others unable to be saved. The villagers keep arguing. The babies keep coming.
A Belly Full of Fire, Part Three: Which Direction Do We Swim?
The above is a common allegory often used in upstream/downstream engagement models for active citizenship, philanthropy, development, social justice and activism. Is it an absolutely inappropriate analogy for infertility advocacy? Absolutely. But there's a wealth of insight to be found in this story.
The moral of the story is simple: action is necessary. The conundrum is also apparent: what action is most appropriate? Aye, there's the rub.
Let's break the villagers down into their various roles.
There are the villagers on the shore who dive right in and start scooping up babies. In the context of advocacy, these would be your social workers, your counselors. In the infertility community, these may be support group leaders or hotline operators. In the online world, it might be every single person who comments on news posted on the LFCA. This downstream approach suits best those people who feel compelled to respond immediately to the situation happening right in front of them.
Then there is the party that heads up the river and finds the terrible king. To solve this end of the crisis, they require a lot more manpower to fight the king and his army. In terms of advocacy, the upstream approach seeks to work towards solving the root of the problem. And the root of the problem is never an easy one to fix, because you're mostly dealing with cultural biases, social constructs, and institutionalized oppression.
Heavy, right? It's no easy task and should be pretty obvious as to why the upstream approach needs more than just one person to make any kind of noticeable change.
So how do we address the conundrum of which approach is truly the best?
Answer: you need both downstream and upstream approaches to advocacy to make systemic change. Thus, by default, you need one motivated person and then followers and compatriots to join with them. By spreading out your efforts to solve the immediate crises downstream and also sending efforts upstream to investigate and take aim at the root of the crises, you cast the widest net possible for solutions for change at both levels.
Are you more of a downstream advocate, doing what you can on the local, community levels, or are your more of an upstream advocate, fighting for change on a grander scale? It's not always that clear-cut of an answer, and you may be surprised to see how you can transform from one into the other. Take the story of Risa Levine, as featured in the SELF Magazine article I mentioned Thursday:
When patients do take up the cause, it can make a difference. Risa Levine, a 48-year-old attorney in New York City, endured 10 IVF cycles and four miscarriages, yet remains childless... Instead of withdrawing, she began making calls: Several years ago, outraged at the dearth of funding and research for infertility, Levine approached then Senator Hillary Clinton (D–N.Y.), who went to the CDC. As a result, in 2008 the agency issued a white paper that outlined the very need that Levine and other advocates want fulfilled: more money for more research... The CDC report paved the way for the federal government to develop a National Action Plan for infertility, says Maurizio Macaluso, M.D., chief of the women's health and fertility branch of the division of reproductive health at the CDC... After learning firsthand that the average cost of one round of IVF is $12,400, Levine lobbied her congressman, Anthony Weiner (D–N.Y.), who reintroduced the Family Building Act, a bill that calls for federally mandated insurance coverage for infertility... Senator Kirsten Gillibrand (D–N.Y.) has introduced the Family Building Act to the Senate. "One person's passion matters," she says about Levine. (Source.)
Ms. Levine addressed a downstream need in her own journey. But as she advocated on a greater scale, her efforts swam further upstream, requiring the assistance of larger and higher levels of support. It's no surprise then that Ms. Levine has been awarded a Hope Award for Advocacy by RESOLVE for their Night of Hope Gala in September.
Another way to picture this, to take our minds off of babies rushing down a river, is to watch this short video of Derek Sivers' TED Talk on how to start a movement in under three minutes:
Key points from the video:
+ "The first follower is what transforms the lone nut into a leader."
+ "A movement must be public. It's important to show not just the leader, but the followers because you find that new followers emulate the followers, not the leader."
+ "Notice that as more people join in it's less risky, so those that were sitting on the fence before now have no reason not to."
+ "If you really care about starting a movement, have the courage to follow and show others how to follow."
+ "And when you find a lone nut doing something great, be the first one to have the guts to stand up and join in."
. . . . .
So now that you have an idea of what styles of advocacy exist, you can get a better of idea of at what level you're comfortable participating in advocacy efforts. Tomorrow I'll talk about what would be ideal outcomes for all of the hard work advocating for infertility awareness.
Stay tuned on Tuesday for A Belly Full of Fire, Part Four: In a Perfect World.
Photo by Jennifer Gensch via Flickr.
Allow me to tell you a story.
Some villagers suggest heading upstream to see what is causing all of the babies to be sent down the river. But other villagers shout above the chaos: "No! We must stay here and save the babies we can!" And other weary villagers climb up and collapse on the riverbanks, soaked to the bone and exhausted from trying to save so many babies. "What's the point?" they pant, "We can't save all the babies."
A party heads up the river. Others continue to dive in. Some are simply too exhausted to go on. The party returns from upstream, looking haunted and their faces ashen. "There is an evil king directing his army to throw his kingdom's babies into the river. We could overthrow his tyranny if we get enough of you to join us." The villagers argue about what to do next.
All the while, the babies continue to flow down the river helplessly, some scooped up, others unable to be saved. The villagers keep arguing. The babies keep coming.
A Belly Full of Fire, Part Three: Which Direction Do We Swim?
The above is a common allegory often used in upstream/downstream engagement models for active citizenship, philanthropy, development, social justice and activism. Is it an absolutely inappropriate analogy for infertility advocacy? Absolutely. But there's a wealth of insight to be found in this story.
The moral of the story is simple: action is necessary. The conundrum is also apparent: what action is most appropriate? Aye, there's the rub.
Let's break the villagers down into their various roles.
There are the villagers on the shore who dive right in and start scooping up babies. In the context of advocacy, these would be your social workers, your counselors. In the infertility community, these may be support group leaders or hotline operators. In the online world, it might be every single person who comments on news posted on the LFCA. This downstream approach suits best those people who feel compelled to respond immediately to the situation happening right in front of them.
Then there is the party that heads up the river and finds the terrible king. To solve this end of the crisis, they require a lot more manpower to fight the king and his army. In terms of advocacy, the upstream approach seeks to work towards solving the root of the problem. And the root of the problem is never an easy one to fix, because you're mostly dealing with cultural biases, social constructs, and institutionalized oppression.
Heavy, right? It's no easy task and should be pretty obvious as to why the upstream approach needs more than just one person to make any kind of noticeable change.
So how do we address the conundrum of which approach is truly the best?
Answer: you need both downstream and upstream approaches to advocacy to make systemic change. Thus, by default, you need one motivated person and then followers and compatriots to join with them. By spreading out your efforts to solve the immediate crises downstream and also sending efforts upstream to investigate and take aim at the root of the crises, you cast the widest net possible for solutions for change at both levels.
Are you more of a downstream advocate, doing what you can on the local, community levels, or are your more of an upstream advocate, fighting for change on a grander scale? It's not always that clear-cut of an answer, and you may be surprised to see how you can transform from one into the other. Take the story of Risa Levine, as featured in the SELF Magazine article I mentioned Thursday:
When patients do take up the cause, it can make a difference. Risa Levine, a 48-year-old attorney in New York City, endured 10 IVF cycles and four miscarriages, yet remains childless... Instead of withdrawing, she began making calls: Several years ago, outraged at the dearth of funding and research for infertility, Levine approached then Senator Hillary Clinton (D–N.Y.), who went to the CDC. As a result, in 2008 the agency issued a white paper that outlined the very need that Levine and other advocates want fulfilled: more money for more research... The CDC report paved the way for the federal government to develop a National Action Plan for infertility, says Maurizio Macaluso, M.D., chief of the women's health and fertility branch of the division of reproductive health at the CDC... After learning firsthand that the average cost of one round of IVF is $12,400, Levine lobbied her congressman, Anthony Weiner (D–N.Y.), who reintroduced the Family Building Act, a bill that calls for federally mandated insurance coverage for infertility... Senator Kirsten Gillibrand (D–N.Y.) has introduced the Family Building Act to the Senate. "One person's passion matters," she says about Levine. (Source.)
Ms. Levine addressed a downstream need in her own journey. But as she advocated on a greater scale, her efforts swam further upstream, requiring the assistance of larger and higher levels of support. It's no surprise then that Ms. Levine has been awarded a Hope Award for Advocacy by RESOLVE for their Night of Hope Gala in September.
Another way to picture this, to take our minds off of babies rushing down a river, is to watch this short video of Derek Sivers' TED Talk on how to start a movement in under three minutes:
Key points from the video:
+ "The first follower is what transforms the lone nut into a leader."
+ "A movement must be public. It's important to show not just the leader, but the followers because you find that new followers emulate the followers, not the leader."
+ "Notice that as more people join in it's less risky, so those that were sitting on the fence before now have no reason not to."
+ "If you really care about starting a movement, have the courage to follow and show others how to follow."
+ "And when you find a lone nut doing something great, be the first one to have the guts to stand up and join in."
. . . . .
So now that you have an idea of what styles of advocacy exist, you can get a better of idea of at what level you're comfortable participating in advocacy efforts. Tomorrow I'll talk about what would be ideal outcomes for all of the hard work advocating for infertility awareness.
Stay tuned on Tuesday for A Belly Full of Fire, Part Four: In a Perfect World.
Photo by Jennifer Gensch via Flickr.
July 23, 2010
A Belly Full of Fire, Part Two: The Wounded Healer
This is the second post of my five-part series on infertility advocacy. Catch up on Part One: Advocate or Abdicate.
Before I get started, I need to 'fess up about something kind of embarrassing. I thought I was being wicked creative with the title of this series, A Belly Full of Fire. Turns out, as I've gone through some of my research, this title isn't nearly as original as I thought it was. I need to fully credit Karima Hijane, Carly Heyman, Maureen Bell, and Mary Beth Busby's 2008 article from the Annals of the New York Academy of Sciences, "From Fire in the Belly to a Boiling Heart: Fuel for Participatory Research." When I went to start working on this post and leafed through my research, I felt like a putz when I saw their article title. But I like it, it fits what I'm writing about, so I'm keeping it.
"Some women... turn their pain into a passion to help others in similar circumstances. They become what has been referred to as 'wounded healers,' who can help others heal, and help heal themselves in the process."
Source: Amber R. Cooper, A.R., Baker, V.L., Sterling, E.W., Ryan, M.E., Woodruff, T.K., and Nelson, L.M., The time is now for a new approach to primary ovarian insufficiency, Fertility and Sterility (2010), DOI:10.1016/j.fertnstert.2010.01.016.
A Belly Full of Fire, Part Two: The Wounded Healer
I felt robbed. Cheated. Empty.
I would revisit the email from my doctor: "[The results], if they are to be believed, indicate that premature ovarian failure is the problem, not PCOS dysfunction/follicular maturation arrest as you, I and your previous caregivers had presumed." I thought that perhaps, maybe this time when I read it, the words would miraculously transform into "Nothing's wrong."
I started this blog as a way to channel these emotions, to fill some of the void that had been etched into my psyche. I found myself compelled to educate others as I started sharing research and informational posts. I wrestled with G-d for a little while, fighting battles between the lines, wielding my typed words as weapons and my faith as a shield. And before I knew it, the end of April had arrived, bringing with it my first National Infertility Awareness Week. I had all of this pent up frustration, anger, and anxiety, its kinetic energy boring holes into my spirit. Why not channel this energy, I thought.
The first thing I did was out myself on Facebook. The message stayed up there for about three hours before I chickened out and removed it. But in those three hours, I got three messages from friends of mine I hadn't talked to in years, each saying "I understand your journey because I'm going through it too." It was reassuring in ways that my blogging had not been. So then I reposted it with a sense of purposeful confidence. This was the first time I felt oddly positive about my infertility, in that I realized it could be channeled as an educational tool for activism.
I even wrote last April:
The ol' college activist in me is feeling inspired. I think it's because by involving myself in some kind of advocacy role, I reestablish a sense of control.
I keep pinpointing my video and this year's NIAW that launched my advocacy, but looking back through my older entries, I realize it started a year prior. My repurposed energy has refueled my spirit and sustained me through the darker times.
What I've only come to understand recently is that advocacy has helped to heal me. It's not like the emotional compartmentalizing, the escapist video game sojourns, the instant gratification of buying crap I don't need, or the diversional half-assed attempts to "find a hobby" or get in shape - advocacy has been like a bowl of chicken soup. It doesn't make the cold go away, but it fulfills you, helps you get better, and it's a welcome treat anytime you get sick.
I've had the privilege of being in touch with Dr. Lawrence Nelson at the NICHD, undoubtedly the leading researcher of POF/POI in the nation. He sent me the article containing the above quote and the words "wounded healer" resonated so strongly within me. Wounded healer is such an apt description for patient activists. If you take a look at even just a handful of executive directors of major infertility organizations and companies, they each have some deeply personal connection to infertility. With the silence that surrounds infertility, it only makes sense that former patients rise up to become leaders within the field.
Whether we are lobbying on Capitol Hill or connecting with other bloggers, we are each in our own way wounded healers.
The online ALI community has truly rallied around this concept, even if we don't formally call ourselves wounded healers. Things like the LFCA, blog hops, blog awards, online forums: we celebrate and support one another, we share tips and tricks and recommend books and websites. A friend comes to us and says, "A coworker of mine just told me she's about to do her first IVF cycle. Do you mind if I give her your information?" In helping to heal others, as Cooper, et al. notes, we heal ourselves.
It's about repurposing energy. Advocacy becomes a way of transforming pain into positive action. Suddenly you're finding little victories everywhere: your parents help you out at a volunteer telethon and send your organization a check for $250 (thank you Mom and Papa!). You get asked to guest blog or become a contributor. A senator to whom you sent a semi-form letter actually writes back and responds to your concerns, or their staffer calls you back when you leave a message to let you know that yes, your concerns will be passed on to the senator. An letter-writing campaign that you were a part of produces desired outcomes. These little victories add fuel to your reserves.
Are they an equivalent check and balance for a loss or a negative beta? Of course not. But at least you're not running on empty. And you use up that fuel to propel you forward, to keep you going.
I'll speak plainly: advocacy has saved my life. I don't walk around feeling so effing empty. I sat myself down and told myself if I can't create life, I can at least create purposeful living.
. . . . .
Today I wrote about advocacy as a way of personal healing. Take this weekend and invest in a little healing of your own. Come back Monday when I'll talk about how you can figure out what advocacy style best suits you.
Stay tuned for A Belly Full of Fire, Part Three: Which Direction Do We Swim?.
Photo by Clay Junell via Flickr.
Before I get started, I need to 'fess up about something kind of embarrassing. I thought I was being wicked creative with the title of this series, A Belly Full of Fire. Turns out, as I've gone through some of my research, this title isn't nearly as original as I thought it was. I need to fully credit Karima Hijane, Carly Heyman, Maureen Bell, and Mary Beth Busby's 2008 article from the Annals of the New York Academy of Sciences, "From Fire in the Belly to a Boiling Heart: Fuel for Participatory Research." When I went to start working on this post and leafed through my research, I felt like a putz when I saw their article title. But I like it, it fits what I'm writing about, so I'm keeping it.
"Some women... turn their pain into a passion to help others in similar circumstances. They become what has been referred to as 'wounded healers,' who can help others heal, and help heal themselves in the process."
Source: Amber R. Cooper, A.R., Baker, V.L., Sterling, E.W., Ryan, M.E., Woodruff, T.K., and Nelson, L.M., The time is now for a new approach to primary ovarian insufficiency, Fertility and Sterility (2010), DOI:10.1016/j.fertnstert.2010.01.016.
A Belly Full of Fire, Part Two: The Wounded Healer
I felt robbed. Cheated. Empty.
I started this blog as a way to channel these emotions, to fill some of the void that had been etched into my psyche. I found myself compelled to educate others as I started sharing research and informational posts. I wrestled with G-d for a little while, fighting battles between the lines, wielding my typed words as weapons and my faith as a shield. And before I knew it, the end of April had arrived, bringing with it my first National Infertility Awareness Week. I had all of this pent up frustration, anger, and anxiety, its kinetic energy boring holes into my spirit. Why not channel this energy, I thought.
The first thing I did was out myself on Facebook. The message stayed up there for about three hours before I chickened out and removed it. But in those three hours, I got three messages from friends of mine I hadn't talked to in years, each saying "I understand your journey because I'm going through it too." It was reassuring in ways that my blogging had not been. So then I reposted it with a sense of purposeful confidence. This was the first time I felt oddly positive about my infertility, in that I realized it could be channeled as an educational tool for activism.
I even wrote last April:
The ol' college activist in me is feeling inspired. I think it's because by involving myself in some kind of advocacy role, I reestablish a sense of control.
I keep pinpointing my video and this year's NIAW that launched my advocacy, but looking back through my older entries, I realize it started a year prior. My repurposed energy has refueled my spirit and sustained me through the darker times.
What I've only come to understand recently is that advocacy has helped to heal me. It's not like the emotional compartmentalizing, the escapist video game sojourns, the instant gratification of buying crap I don't need, or the diversional half-assed attempts to "find a hobby" or get in shape - advocacy has been like a bowl of chicken soup. It doesn't make the cold go away, but it fulfills you, helps you get better, and it's a welcome treat anytime you get sick.
I've had the privilege of being in touch with Dr. Lawrence Nelson at the NICHD, undoubtedly the leading researcher of POF/POI in the nation. He sent me the article containing the above quote and the words "wounded healer" resonated so strongly within me. Wounded healer is such an apt description for patient activists. If you take a look at even just a handful of executive directors of major infertility organizations and companies, they each have some deeply personal connection to infertility. With the silence that surrounds infertility, it only makes sense that former patients rise up to become leaders within the field.
Whether we are lobbying on Capitol Hill or connecting with other bloggers, we are each in our own way wounded healers.
The online ALI community has truly rallied around this concept, even if we don't formally call ourselves wounded healers. Things like the LFCA, blog hops, blog awards, online forums: we celebrate and support one another, we share tips and tricks and recommend books and websites. A friend comes to us and says, "A coworker of mine just told me she's about to do her first IVF cycle. Do you mind if I give her your information?" In helping to heal others, as Cooper, et al. notes, we heal ourselves.
It's about repurposing energy. Advocacy becomes a way of transforming pain into positive action. Suddenly you're finding little victories everywhere: your parents help you out at a volunteer telethon and send your organization a check for $250 (thank you Mom and Papa!). You get asked to guest blog or become a contributor. A senator to whom you sent a semi-form letter actually writes back and responds to your concerns, or their staffer calls you back when you leave a message to let you know that yes, your concerns will be passed on to the senator. An letter-writing campaign that you were a part of produces desired outcomes. These little victories add fuel to your reserves.
Are they an equivalent check and balance for a loss or a negative beta? Of course not. But at least you're not running on empty. And you use up that fuel to propel you forward, to keep you going.
I'll speak plainly: advocacy has saved my life. I don't walk around feeling so effing empty. I sat myself down and told myself if I can't create life, I can at least create purposeful living.
. . . . .
Today I wrote about advocacy as a way of personal healing. Take this weekend and invest in a little healing of your own. Come back Monday when I'll talk about how you can figure out what advocacy style best suits you.
Stay tuned for A Belly Full of Fire, Part Three: Which Direction Do We Swim?.
Photo by Clay Junell via Flickr.
July 22, 2010
A Belly Full of Fire: A 5-Part Series on Infertilty Advocacy
"We are being ignored."
-Barbara Collura, Executive Director of RESOLVE
"If you're not going to fight for yourselves, how is anyone else going to fight for you?" -Debbie Wasserman Schultz (D–Fla.)
A Belly Full of Fire, Part One: Advocate or Abdicate
If you haven't read SELF Magazine's article on infertility in their August issue, do me a favor: click on this link, open it in a new tab or window and read in its entirety after you read this post. When I first read it earlier this week, I felt like I had been punched right in the stomach, my eyes bulging, my face red and contorting as all the air escaped from my lungs. Had I been doing all of this advocacy work for nothing?
When I tell people that no, I don't do infertility advocacy for a living, they are shocked. This blog, RESOLVE of New England, my video- I do it all in my free time. I work for a small private college in the housing department. My days are spent dealing with roommate conflicts, programming forms from RAs, and developing a comprehensive new First Year Experience program for our incoming freshmen this fall. I'm in this line of work because that's where my non-committal communications degree lead me. Between working 35 hours a week and devoting every waking hour to my advocacy efforts, I have be blunt with y'all: it's exhausting. I have been running myself ragged for the last couple of months, but I do it because advocacy is vital. Advocacy feeds my soul.
Advocacy is necessary because of the veil of shame and silence that surrounds the 7.3 million people in this country who cope with infertility every day. Jennifer Wolff Perrine raises this same question in her article for SELF: "It’s a strange dichotomy: how can a health issue that gets so much ink be shrouded in silence?"
Infertility is a sexy media topic right now, one that has been taking a substantial amount of heat recently. Take for example yesterday's article in Newsweek: Should IVF Be Affordable for All? After the Nadya Suleman fiasco, celebrity gossip surrounding stars like Celine Dion, damaging trite portrayals in Hollywood like Jennifer Lopez's The Back-up Plan and the public's critical gaze on affordable healthcare in a gloomy economy, this Newsweek article just adds more fuel to the fire of opposition on infertility treatment coverage:
Whether infertility should be classified as a disease or a socially constructed need is a dilemma at the center of this debate... A complicating factor, according to St. Luke’s (Dr. Sherman) Silber, is that up to 80 percent of infertility cases are caused simply by increasing maternal age. “It’s hard to call infertility a disease. It’s normal aging,” he says.Dr. Silber, I hate to argue with an MD, but infertility IS a disease. Just ask the World Health Organization: "This recognition from WHO of infertility as a disease represents a significant milestone for the condition." (Source.) With distorted media images of wanton career-driven thirtysomethings and desperate perimenopausal women salivating to have their own baby bump, Silber's statement is not only inaccurate, but irresponsible as a cited expert in the field. Thank you Dr. Silber, for setting back 25+ years of hard work in the infertility advocacy movement.
With all of the vitriol being directed by the media at infertility- its patients, its treatment, and its very validity as recognized medical disease- our advocacy efforts are needed now more than ever.
And it requires infertility patients to take the biggest, most difficult step of their journey. Infertility patients need to start speaking out publicly.
Look, I'll tell you right now: it's not easy to come out of the infertility closet. I was diagnosed on March 18, 2009. The first phone call was to my husband. That evening, we called both our of parents and I called my sister. Two weeks later I sent out an email to two dozen of our closest friends explaining the situation and shared the link to this blog. If infertilty was the new game, I wanted it to be played by my rules. Not once have my friends judged me, asked "so when are you having kids" or told us to relax. We receive a bevy of advice- some helpful, some not- but always extremely well-intentioned and expressed with sensitivity and compassion.
I know Larry and I are the extreme example in this case. I know there are plenty of couples who do not have this same level of support. But you'll never know if you don't try. To this day, I don't regret ever telling friends that I was infertile.
Not only did we find out just who indeed were the folks that cared about us, but just how much they cared. When I uploaded my video and finally blasted it out across the internet, people I never thought would bat an eyelash came out of the woodwork to tell me their stories, to thank me for being so brave to put my name and face out there with this label. I was floored. People I had worked with, gone to high school with, a friend of friend... they picked up on that energy and finally felt comfortable enough to share their stories with me.
I asked in my video: "What if I stopped hiding behind my fear? What if my story can help millions?"
If my story- this one little random woman from Boston- could touch hundreds and hundreds of people (seriously: there are hundreds of emails in my inbox and I'm still getting emails and comments from people who have come across my video)...
Could you imagine if we had 100 people willing to publicly speak out about their experience with infertility? What if we had 1,000 people running a 5K charity race? 10,000 people marching on Washington?
Grassroots advocacy is there for our taking right in front of us and we as a patient community cannot get out from behind our own self-imposed sense of shame and silence.
Oh yeah, I totally just said that.
But so does the SELF Magazine article. Wolff Perrine writes:
Women's silence hurts more than themselves. It ensures that infertility remains an anonymous epidemic, with less funding and research than other common medical problems receive.She cites Lindsay Beck, founder of Fertile Hope:
Because no one wants to discuss infertility, "nothing gets done about it," says Lindsay Beck, ..."Infertility is where breast cancer was in the 1970s—completely in the closet... For the average fertility patient, there is no united front."And as a patient community, we're shooting ourselves in the foot when even those who successfully resolve their infertility choose not to acknowledge their past pain:
However someone resolves her infertility, the tendency is to want to put her struggles behind her. "People want to forget," says Collura of RESOLVE... "We do our damnedest to instill in our members that they need to take a stand and help the cause or the same thing is going to happen to the women who come after them."Infertile couples who have found resolution owe it to their children to speak out, to own their disease and walk with it even after they have beaten it.
So what's an infertile to do?
Take the pledge. Start using your real name. Share your blogs with your family and friends. Talk to the media. Call your legislators. Volunteer with your local chapter of RESOLVE. Write grant proposals. Stop caring about what other people think and instead focus on what other people can do to help.
Ladies and gentlemen: I give you "advocacy in a nutshell." No seriously - that's really all that it is. You don't have to have your advanced degree in public health. Patient activism is pretty simple: just tell everyone your story and why it matters.
If all of this seems like too much, then just start by going to RESOLVE's website and take the pledge to do something. RESOLVE says it best: "It's time to stop, look, listen and act. It's time to pay attention." Then get your support network of friends and families to take the pledge. Don't be embarrassed - just send those emails and I'm sure you'll be surprised to see who's willing to stand by your side in solidarity.
Our stories are long overdue to be heard by the public. But we have to tell our stories out loud if they're ever going to be heard.
The bubble of silence, shame, and ignorance surrounding infertility is ready to burst.
Either we publicly advocate for ourselves or we abdicate the right to demand change.
. . . . .
If this post has moved you, please share it online: tweet it, Facebook it, blog about it... This is how a grassroots movement begins.
Today I wrote about why advocacy matters on the community level. Tomorrow I'll talk about why advocacy matters on a more personal, healing level for infertility patients. Stay tuned for A Belly Full of Fire, Part Two: The Wounded Healer.
Photo by Natalie Lucier via Flickr.
July 19, 2010
The Mass. Infertility Mandate Needs Your Help!
The best thing to help give this bill a boost is an aggressive email and phone campaign to the committee members. Legislators actually DO care about personal stories, so speaking up by sending them either an email or calling them is one of the most effective and simplest advocacy strategies you can do.
If you live in Mass., please take five minutes to read my latest Examiner article on 3 things you can do to help in just ten minutes.
Photo by Emmanuel Huybrechts via Flickr.
July 11, 2010
The New England Infertility Blogger Network
Do you blog about infertility?
Pull up a seat: we need to connect.
This may look strikingly similar to a post I made last month recruiting Bay State IF Bloggers. The first task given to me as the newest member on the RESOLVE of New England Board of Directors is to start culling blogs to build a New England based infertility blogroll. So I'm ditching the Bay State IF Blog Network and expanding it to become the New England Infertility Blogger Network.
What kind of blogs would be included?
- Patients facing infertility or treatment or parenting after infertility
- Their spouses and partners
- Their friends and family members
- Physicians and nurses specializing in fertility treatment
- Fertility clinics or other organizations that blog about fertility
- Promotion and visibility with RESOLVE of New England
- The chance to network with other professionals, resources, and bloggers
- The possibility of a meetup or round table at the RESOLVE of New England Annual Conference
- For businesses and providers: increased online exposure and social media opportunities for the only consumer infertility conference in the New England region
- For the amateur blogger: add credibility with support and visibility from a local non-profit organization
Interested in being a part of this project? Fill out this short survey at the bottom of this post!
Readers and followers: this is where I also need your help. I could do a little Googling, but that will only get me so far. I need you dear readers, to send me links to infertility blogs in the New England region. I need you to dig through your Twitter followers and Facebook friends and colleagues: who out there lives in New England and is blogging about infertility? I need comments and retweets and leads in that same viral spirit that brought over 20,000 pairs of eyeballs to my What IF video. The simplest way is to just link right back to this post directly so they can fill out the interest form below.
Thanks in advance for your help and I look forward to connecting with other infertility bloggers in the New England region!
July 8, 2010
I'm a Night of Hope Award winner!
I've been holding on to this news for over a month, and now that the eUpdate has been sent out by RESOLVE, I can finally spill the beans...
RESOLVE has awarded me Best Viral Video for their annual Night of Hope Awards! I am floored, honored, and truly humbled. RESOLVE described the award in their email blast today:
Congrats also to the other two Team RESOLVE Choice Award winners: the Best Book Award went to Pamela Mahoney Tsigdinos, author of Silent Sorority and the Best Blog Award to Julie Robichaux of A Little Pregnant!
The Night of Hope Awards will take place on Tuesday, September 28th at Gaustavino's in New York City. Larry and I are looking forward to making a long weekend out of it. NOH looks like it's going to be a fabulous evening of celebration, and I can't wait to finally meet some folks in person whom with I've only ever corresponded through blogs or emails. I've been going nuts sitting on this news for so long, but the cat's outta the bag now!
But more importantly...
This video could only go viral because of you.
To everyone who's ever clicked play; to everyone who posted it on their blog, or Twitter, or Facebook, or wherever; to everyone who said to someone else, "Hey, you gotta watch this" and showed them my video - thank you all so much.
RESOLVE has awarded me Best Viral Video for their annual Night of Hope Awards! I am floored, honored, and truly humbled. RESOLVE described the award in their email blast today:
RESOLVE is proud to announce the inaugural Team RESOLVE Choice Award for Best Viral Video. A viral video by definition is a video that becomes popular by sharing it via the internet. This year’s winner not only created a popular video, but created a video that captured the essence of the “What IF?” project launched during National Infertility Awareness Week®. Congratulations Keiko Zoll and those involved with the video “What IF? A portrait of infertility.”
Congrats also to the other two Team RESOLVE Choice Award winners: the Best Book Award went to Pamela Mahoney Tsigdinos, author of Silent Sorority and the Best Blog Award to Julie Robichaux of A Little Pregnant!
The Night of Hope Awards will take place on Tuesday, September 28th at Gaustavino's in New York City. Larry and I are looking forward to making a long weekend out of it. NOH looks like it's going to be a fabulous evening of celebration, and I can't wait to finally meet some folks in person whom with I've only ever corresponded through blogs or emails. I've been going nuts sitting on this news for so long, but the cat's outta the bag now!
But more importantly...
This video could only go viral because of you.
To everyone who's ever clicked play; to everyone who posted it on their blog, or Twitter, or Facebook, or wherever; to everyone who said to someone else, "Hey, you gotta watch this" and showed them my video - thank you all so much.
July 1, 2010
House hunting, volunteering, and 2 blogs you should read now
We've got 3 more homes to tour tonight, one of which Larry is particularly drawn to. I'm still on the fence and need to see it in person. We're cutting it close... we have to be out of my dorm by August 15. We've given ourselves until July 15 to have a solid lead on a house, or we're going to look at some month-to-month rentals in the area and trying shopping again in the winter. House hunting is just like getting engaged. At first, you're excited and you can't wait to start buying everything and imagining what it's going to look like, but once you get neck-deep in the planning, it's a beast. Other updates after the cut.
Other updates... Willow is still being adorable, doing that whole "less than a week old gee the world is new and shiny" thing. My sister is doing better. Brother-in-law is still beaming. I'm now incredibly impatient for when I can start taking my niece on mall runs and start talking about boys and getting mani/pedis.
Today starts the official first day of my job promotion. Lots of great planning sessions at work for this coming year. I haven't felt this energized about my work in nearly 2 years, so it's a good feeling. Only thing I'm not looking forward to is working two hours Saturday morning and three hours Monday afternoon... yes, we're closed and yes, I still have to be there. Bummer.
Volunteered at the RESOLVE of New England Annual Fundraising Telethon and helped to raise $555 last night! My numbers were totally boosted by a very generous contribution from my mom in honor of her new granddaughter. Still, it was the first volunteer event I've been able to do in my new role as Board member, and I had a lot of fun doing it. If you feel so inclined to donate, you can do so here online. No amount is too small and even $1 can help and your support is always appreciated. *takes off her fundraiser hat*
Two other important blog posts I'd like to promote as well.
1. A Half-Baked Life writes:
Today, this is what I'm thinking: we need to be kind to each other. We need to be able to talk about (or at least be present to) sad, unimaginable things in the way that we celebrate the joyful ones, to remember the losses as we remember the birthdays, not because we should dwell on what is depressing, but because death is a part of life. We are such strange, half-invisible creatures sometimes, hiding our shadows.The rest of the post is really stunning, and gives us pause for reflection. I feel like I've been reading so many loss announcements recently and in the wake of the loss of my own grandmother, I found her post really comforting. Go read the rest.
2. My friend Jessa of Two Big J's, One Little E is running a card drive for a friend and fellow blogger, Kim. Kim was diagnosed with cervical cancer during her pregnancy last year and had to deliver her son early. Son is fine, but mother is not; the pregnancy saved her life in that her cancer would never have been detected otherwise. Kim is currently undergoing cancer treatments with no insurance- she lost her job just before her diagnosis. Jessa has all the details here of how you can participate in the card drive. Cards will be mailed to Kim on July 15. If you can send some love to her, it would be some seriously good karma.
That's all I've got for now. I'll probably take a break from posting this weekend for the holiday, but I'll be back up and running next week. Until then, for my readers in the States: Happy July 4th! Be safe out there and enjoy the weekend.
Photo by WoodleyWonderWorks via Flickr.
June 25, 2010
What IF: Two Months Later
It all started two months ago with #ProjectIF.
Two months ago to the day, I posted my What IF? video online.
What IF? A Portrait of Infertility on Vimeo.
Two months ago, I thought I would merely post on my little corner of the internet and let the blogosphere pass me by. Two months ago, I came out of the infertility closet. True, my friends and family were more than aware of who was writing this blog. Yet, I put my name, my face, my contact information to these What IFs, to a story that's told over and over and over again in the infertility community. Two months ago, I became an infertility advocate the moment I hit "record" on my digital camera. Standing here, two months later, and looking back, I marvel at the distance I've traveled in just two months' time.
I'm writing this post as part of WEGO Health's June Blog Carnival: Your Best Health Activist Moment. Click the link to read more and to find out how you can participate! This post has allowed me to explore some of the true highlights of the past two months in my health advocacy. It's hard to just pick one: so much has happened and I've been deeply affected by them all.
The first moment was when my video went viral. In just 11 days of publishing my video online, it received 10,000 plays. Currently, it has about 17,500 plays, and grows little by slowly. A lot of that initial momentum has dropped off, to be expected. That was when I realized my advocacy work was generating buzz: people were talking, tweeting, sharing.
The second moment was when I received a call from Rebecca Flick at RESOLVE's national headquarters in Washington. You often think of national organizations as nameless, faceless giants with no real person-to-person connection between Organization with a capital O and its members. All of that bias I held was erased the moment Rebecca and I began talking. RESOLVE really is here for its members, and they work tirelessly for them whether it's providing education and support or lobbying for change. The work alone to keep RESOLVE current with social media trends is exhausting enough. When Rebecca told me I had RESOLVE's full support to spread this video to the masses, this was when I was first beginning to realize that I had embarked on something much bigger than I had originally thought.
The third moment was when I was contacted by Dr. Lawrence Nelson of the NICHD. Dr. Nelson was the first resource I turned to after I was first diagnosed with premature ovarian failure: a quick Google search brought up much of his literature and even an informational video that I posted as one of my first handful of posts on this blog. Dr. Nelson has become one of the leading experts on POF/POI in the nation, and his passion to develop comprehensive and compassionate treatment for the disease is inspiring. We have since been corresponding on ways I can bring my experience with post-diagnosis coping and healing into some kind of treatment protocol for other women diagnosed with POF/POI. Apparently, I've handled my diagnosis remarkably well for a woman of only 26 at the time. In this moment, I realized that my experience mattered to other people.
The fourth moment happened right here in my own backyard after meeting with a networking group of regional infertility professionals. I made some great connections and contacts and had a chance to brainstorm ideas, raise issues, and get feedback. The real honor came when I was asked last month to apply to the RESOLVE of New England Board of Directors, of which I was unanimously voted in last Thursday. This was when I realized the possibilities ahead of me with local advocacy efforts.
But of all the moments in the past two months? My childhood best friend sending me a message on Facebook telling me she is a three-time egg donor. A work colleague of mine (who I just goof off with 90% of the time I see him) closing the door in my office and confessing that his son was a miracle after recurrent miscarriages. The blogger who reposted my video who works in the healthcare field who changed her mind about mandated infertility treatment coverage and how it really should be covered by insurance companies. The dear friend who I had no idea was having trouble conceiving a second child. A friend of mine who I'm still getting to know who pulls me aside after a gathering one night and thanks me for posting on my blog that it's okay to feel mean and jealous and spiteful of all those big round bellies that aren't hers. The long emails from strangers telling me their stories: all of their heartbreak, triumph, and waiting- finally sharing it for the first time with someone other than their partner.
Like a sudden rain across still waters, the ripples growing and colliding with one another, the water a network of waves and movement - it was these moments of personal connection that have impacted me the most in my activism. These personal connections begin lacing and crossing one another, creating a network of support, education, activism and research that grows stronger and tighter with each connection.
What a different place at which I stand two months later... and I cannot wait to see from where I stand a year from now, so see how far the ripples have spread.
Photo by Hiroyuki Takeda via Flickr.
Two months ago to the day, I posted my What IF? video online.
What IF? A Portrait of Infertility on Vimeo.
Two months ago, I thought I would merely post on my little corner of the internet and let the blogosphere pass me by. Two months ago, I came out of the infertility closet. True, my friends and family were more than aware of who was writing this blog. Yet, I put my name, my face, my contact information to these What IFs, to a story that's told over and over and over again in the infertility community. Two months ago, I became an infertility advocate the moment I hit "record" on my digital camera. Standing here, two months later, and looking back, I marvel at the distance I've traveled in just two months' time.
I'm writing this post as part of WEGO Health's June Blog Carnival: Your Best Health Activist Moment. Click the link to read more and to find out how you can participate! This post has allowed me to explore some of the true highlights of the past two months in my health advocacy. It's hard to just pick one: so much has happened and I've been deeply affected by them all.
The first moment was when my video went viral. In just 11 days of publishing my video online, it received 10,000 plays. Currently, it has about 17,500 plays, and grows little by slowly. A lot of that initial momentum has dropped off, to be expected. That was when I realized my advocacy work was generating buzz: people were talking, tweeting, sharing.
The second moment was when I received a call from Rebecca Flick at RESOLVE's national headquarters in Washington. You often think of national organizations as nameless, faceless giants with no real person-to-person connection between Organization with a capital O and its members. All of that bias I held was erased the moment Rebecca and I began talking. RESOLVE really is here for its members, and they work tirelessly for them whether it's providing education and support or lobbying for change. The work alone to keep RESOLVE current with social media trends is exhausting enough. When Rebecca told me I had RESOLVE's full support to spread this video to the masses, this was when I was first beginning to realize that I had embarked on something much bigger than I had originally thought.
The third moment was when I was contacted by Dr. Lawrence Nelson of the NICHD. Dr. Nelson was the first resource I turned to after I was first diagnosed with premature ovarian failure: a quick Google search brought up much of his literature and even an informational video that I posted as one of my first handful of posts on this blog. Dr. Nelson has become one of the leading experts on POF/POI in the nation, and his passion to develop comprehensive and compassionate treatment for the disease is inspiring. We have since been corresponding on ways I can bring my experience with post-diagnosis coping and healing into some kind of treatment protocol for other women diagnosed with POF/POI. Apparently, I've handled my diagnosis remarkably well for a woman of only 26 at the time. In this moment, I realized that my experience mattered to other people.
The fourth moment happened right here in my own backyard after meeting with a networking group of regional infertility professionals. I made some great connections and contacts and had a chance to brainstorm ideas, raise issues, and get feedback. The real honor came when I was asked last month to apply to the RESOLVE of New England Board of Directors, of which I was unanimously voted in last Thursday. This was when I realized the possibilities ahead of me with local advocacy efforts.
But of all the moments in the past two months? My childhood best friend sending me a message on Facebook telling me she is a three-time egg donor. A work colleague of mine (who I just goof off with 90% of the time I see him) closing the door in my office and confessing that his son was a miracle after recurrent miscarriages. The blogger who reposted my video who works in the healthcare field who changed her mind about mandated infertility treatment coverage and how it really should be covered by insurance companies. The dear friend who I had no idea was having trouble conceiving a second child. A friend of mine who I'm still getting to know who pulls me aside after a gathering one night and thanks me for posting on my blog that it's okay to feel mean and jealous and spiteful of all those big round bellies that aren't hers. The long emails from strangers telling me their stories: all of their heartbreak, triumph, and waiting- finally sharing it for the first time with someone other than their partner.
Like a sudden rain across still waters, the ripples growing and colliding with one another, the water a network of waves and movement - it was these moments of personal connection that have impacted me the most in my activism. These personal connections begin lacing and crossing one another, creating a network of support, education, activism and research that grows stronger and tighter with each connection.
What a different place at which I stand two months later... and I cannot wait to see from where I stand a year from now, so see how far the ripples have spread.
June 21, 2010
June ICLW: Elementally Speaking
The Four Elements of Me
Earth: What Grounds Me ~ Roots and Foundation
+ My husband, Larry: totally my rock, my love, my soulmate. We've been married for 2 and a half years. We were high school sweethearts from 1997... do the math. We've been together a long time and are still madly in love with one another.
+ My family: My mom, my papa, my sister Jasmine and her husband Neal - these are my core. Then Larry's mom, dad, and sister - just as much family as my own blood. And soon, probably sometime this week: Willow! My niece-to-be, the first grandchild, the little darling we've been waiting 9 months to meet. You can count on a post about her later this week since my sister will be induced on Friday :)
+ My faith: I'm Jewish. But I put an equal amount of faith in the goodness of humanity, the beauty that surrounds us daily we often take for granted, and in the sovereignty and power of the collective creativity of women. I ground myself by redefining the world around me, and walking forward with faithful steps in the world I've created.
Water: What Moves Me ~ Transition and Flow
+ My health: it's been in a varying state of flux. I have premature ovarian failure, diagnosed in April of 2009. I have Hashimoto's thyroiditis. I recently learned I've got degenerative arthritis in my lower spine. Oh yeah, I'm 28. Thankfully though, my thyroid appears to finally be stabilized after a year of ups and down, my my POF is being treated with HRT.
+ My job: Recently promoted.
+ My home: We are house-hunting, and hope to have a formal offer in to the seller by COB today.
Air: What Lifts Me ~ Joy and Celebration
+ Food, music, the arts, photography, flowers, Hell's Kitchen, Weeds, LOST, Radiohead, indie music, Vampire Weekend, MUSE, art house cinema, Bach Cello Suites, cooking, our trip Japan last year, camping, fishing, reading, writing, writing my book, RadioLab, The Moth, This American Life, taking the time to literally stop and smell the roses.
Fire: What Consumes Me ~ Passion and Perseverance
+ Having a family: The timeline has been pushed back significantly since we're buying a house, but we plan on adopting an infant domestically. We're skipping fertility treatments altogether.
+ My advocacy: I've recently decided that I am an health advocate, fighting for infertility treatment coverage and research. It all started with this video. The content of my blog has shifted slightly from mostly about me to more about the greater ALI blogosphere and what we can all do to be everyday advocates. I am also RESOLVE of New England's newest Board member on their Board of Directors!
+ My writing: I do it all the time. I've been keeping a journal in print or electronic form since I was in 7th grade. This blog is a continuation of that, but I'm starting to branch out to other places like Examiner.com and hopefully more paying opportunities. I'm also writing a book about my experience of converting to Judaism three years ago.
Looking forward to meeting new folks. Happy ICLW and happy commenting!
Image used with generous permission by the artist, Alida Saxon, copyright 2010.
June 16, 2010
Dude, it's Men's Health Week!
I've also posted an article about Five Myths of Male-Factor Infertility on Examiner.com. Check it out!
Male factor infertility is the sole cause of a couple's infertility issues in about 30% of cases. Female factor accounts for another 30%, and the rest are either unexplained or a combination of the two (source: RESOLVE.org). Infertility is not just a woman's problem, and even when the issue is female factor, it doesn't mean it's not affecting her partner. Here are some great resources that I've come across:
+ Men’s Health Week: A Time for Men to Step up to the Fertility Plate: Dr. Geoffrey Sher of the Sher Institute and puts a call to action for men facing infertility. Read the complete blog post at IVF Authority.
+ Men and Emotions: "Despite the fact that approximately 40% of infertility is attributed to male factors, it appears that men are not as willing or as able as their female partners to talk about their experience. Perhaps this is because we traditionally think of children as a woman's province." Read the rest of the article here at RESOLVE.org.
+ The Semen Analysis and the Men's Infertility Workup: What to expect from your doctor (via RESOLVE.org)
+ Psychological Issues in Male-Factor Infertility: "In general, the man’s reaction to infertility has been viewed by mental health professionals as taking less of an emotional toll than his partner’s... Little room is left for dealing with his own feelings of loss and sadness. This conforms to society’s gender expectations in which men are not given permission to express deep feelings of loss..." Read the rest at the American Fertility Association website.
+ Get Thee to a Urologist!: The title says it all (via AFA).
+ Fourth Anniversary of the Death of My Sweet Baby Boy: A brilliant resource out there for men coping with loss. The articles and entries shared on this site are a resource for men and women alike (via GrievingDads.com).
+ Making Sex Fun While Trying to Get Pregnant: Mandatory sex is no fun. About.com offer's some advice to spice it up!
+ Coping With Mother's Day and Father's Day: With Father's Day approaching, this can be a tough time of year for men and couples struggling with infertility. RESOLVE has some great advice to make it through the day.
+ Add your resource in the comments below! Blogs, articles, websites: all are welcome.
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