I was reminded just the other day of the concept of “The Wounded Healer” by a fertility blogger named Keiko Zoll. Keiko writes a truly fabulous blog call “Hannah Wept, Sarah Laughed” – and she has been doing this wonderful blog series on being an advocate.  I was truly touched and reminded about my own wounded healer in reading her words in A Belly Full of Fire: The Wounded Healer. Keiko like so many advocates – started her blog out of a desire to express her experience – to fill some unnameable void – to shout into the universe all that was in her heart and in her belly – and in doing so – by speaking with a courageous honesty – she found a community and became a healer. Her words touched hearts and erased the pain of feeling alone  for others. Keiko writes from her gut and  it is that kind of writing – that kind of honesty that touches people.

You don’t need a medical degree to be a healer. You can be a healer by raising money to support a cause  – my colleague and friend Andrea Bryman Lmft is walking to raise money for breast cancer (make a donation here) and recently another colleague and friend Amy Demma was so touched by friend’s struggle with cancer that she has decided to make her facebook status and all manner of communication on Monday’s dedicated to fertility and cancer.  She asked her friends to support her just by talking about the issues (Pam waving at Amy in support). And my husband loves telling this story about a nun who came to our summer house looking for clams to help cure cancer and I just found this piece about her in an old People’s Magazine.  Oh yes – Sister Arline also had fire in her belly.

You see – once you get a fire in your belly – anything is possible.  It is often that place of disbelief, that place at the edge of pain where the most incredible creation and healing can happen.  It was so good to be reminded of that this week. Even this old dog advocate sometimes needs encouragement to keep on keeping on.  You see – its not always fun and games – this place of “Fire in The Belly”.  Sometimes – writing, doing, and change making from the place of the wounded healer can be very vulnerable work.  I remember going on the Joan Lunden Show – my first media appearance with my baby in my arms – to talk about IVF.  I wanted to show that IVF babies were normal and beautiful. I remember how my knees shook – and how scared I was. I was coming out on national television as a woman who had infertility – and had an IVF baby.   My husband and I were so worried that other parents would in some way classify our kid as an IVF  experiment. We were really scared – IVF was so new 20 years ago. But we had a fire in our belly. We needed to talk to get the word out about infertility and the possible solutions.  We needed to show the world that IVF kids were normal. And so I went.  That day was perhaps my first day  as a wounded healer.

Once  you start your first blog,  write your first article, walk your first walk, or do whatever it is that you need to do for your own healing -  you may  find  that you too have taken your first steps on the road of the wounded healer.  It is through that delicious fire in the belly place – that all changes happens. And don’t worry if you sometimes you feel scared and alone.  When you hit that place – just take a breath and know that you are building a bridge for others to walk across.

Thanks Keiko for the reminder.

Posted under Advocacy, Facebook, Fertility, Fertility Blogs, Fertility Support, IVF, In Vitro Fertilization, Infertility, Keiko Zoll, inspirational thoughts

I don’t exactly remember when it was that I first met Patricia Irwin Johnston.  But for me – it has felt like she was always there in the infertility and adoption community.  Pat is one of the few pioneers in fertility patient advocacy that showed up in the very beginning – and has stayed true to the community that she has given her life to serving.

In case you have near heard of Patricia Irwin Johnston, Pat is an infertility and adoption educator who has provided trainings for consumers of infertility and adoption services and related medical, adoption, and counseling professionals throughout the United States and Canada for over 30 years.

And while Pat did what so many of us in the infertility world have done – she took her personal experience of infertility and not only turned it into her mission – she made it her life’s work as the publisher at Perspectives Press, Inc: The Infertility and Adoption Publisher, which focuses exclusively on infertility and adoption issues . But for me – I knew Pat as a one of the premier volunteers of National RESOLVE. They even named an award after her – she had that much impact.

From Pat’s CV:

“Pat is also the author of numerous articles and several books, including the newest (2008) Adopting: Sound Choices, Strong Families (named the gold medalist in the 2009 Benjamin Franklin Awards in the field of self-help),  Adoption Is a Family Affair!: What Relatives and Friends Must Know,  Understanding Infertility: Insights for Families and Friends, Taking Charge of Infertility, which was a silver medalist in the 1995 Benjamin Franklin Awards Psychology division, Adopting after Infertility, which was a silver-medalist for 1993’s Benjamin Franklin Awards Parenting/Family Issues division, and Launching A Baby’s Adoption: Practical Strategies For Parents And Practitioners. For six years she wrote the regularly appearing “Growing Up Adopted: 0-2″ column in Adoptive Families magazine. For four years she was the book review editor for the professional journal Adoption Quarterly.

From 1978 through 1992 Ms. Johnston was an active volunteer with RESOLVE, Inc., the U.S. network of 50+ chapters and over 15,000 members serving the fertility-impaired, serving for three years as chair of RESOLVE’s national board of directors. RESOLVE’s annual award for outstanding chapter service by a volunteer was named the Patricia Irwin Johnston Volunteer of the Year Award in her honor. She has also served as a national advisory board member for INCIID (International Council on Infertility Information Dissemination) and is the “adoption expert” on their internet bulletin boards.  She was a charter member of the national advisory committee of Adoptive Families of America and served two multi-year terms on AFA’s national board of directors. In 1989 she was named an Adoption Activist of the Year by the North American Council on Adoptable Children. The Adoptive Parents Committee of New York State named her their 1992 Friend of Adoption. In addition she received awards from JCICS for member service and from As Simple for Adoption Advocacy. In 2006 Butler University, Pat’s alma mater, named her recipient of the 2006 Robert Todd Duncan award, which is presented to an alumnus in recognition of personal and professional achievement which brings honor and distinction to the University and impacts society.      She was named one of the 2007 U.S. Angels in Adoption by the Congressional Coalition on Adoption.

But infertility and adoption are more than Pat Johnston’s profession. She is a member of a family which has experienced two generations of infertility and expanded itself through three generations by adoption. Pat’s aunt and uncle chose a child-free lifestyle after infertility, while her parents-in-law chose to adopt. Pat’s husband and sister-in-law and two of their four cousins were adopted as babies, and her three children, now adults, joined Pat and her husband Dave’s adoption-expanded family as infants. She recently met new cousins who are the children of the daughter her grandmother placed in adoption. Pat is LIVING what she talks about”.

Recently on Facebook – Pat announced that she was retiring. I took it kind of hard. There aren’t that many of us around from the old days. The days when there was only one infertility organization and one fertility medication. And I wondered if many of the people that are buzzing in the world of infertility have any clue at all about what work was done before them – so that they could build websites dedicated to fertility communities or talk openly about any number of issues associated with infertility and adoption. You see there are people who came before us – that not only helped birth fertility advocacy but also midwifed so many of us so that we could continue on the same path.

Pat was one of the folks that truly gave birth to the kind of patient advocacy that I have believed so much in.  Recently Pat called herself a “Rabble Rouser” – and to that I say  “Right on Pat!” and I hope that even though she is looking at retirement – that we will continue to hear her rabble rousing voice!

When I asked Pat about retiring – she said “Deciding to retire has been a very difficult decision, because working as an advocate for the family-challenged has been a wonderfully rewarding part of my volunteer and then work life for over 30 years. But life is full of challenging and intriguing stages, and this next stage–grandparenting and traveling, volunteering in other arenas feels exciting!

The most challenging part turns out to be finding a “just right” publisher for the business I’ve grown, Perspectives Press, Inc. Of course I could just sell the rights to titles separately, offering them to other publishers piecemeal, but that option felt wrong–kind of like breaking up a family.

You see,  PP is not like other publishers. It’s not just that it’s books are thematically and philosophically coordinated, and that its also very personal, with close relationships with most of the authors, but that I’ve also worked for PP to be very much a part of the infertility and adoption communities. I’d like to see that continue, with the publisher will to take a risk by being a vocal advocate! So I’ve been looking very hard within the community of organizations and individuals, offering PP as a gift instead of a sale. The challenge for those who would like to accept, of course, is the need to come up with substantial capital (in these tough economic times) to reprint books with new contact info and to find affordable warehouse space for up to 40,000 books at a time!

It’s another challenge! I’m up to it!”

I bet you are Pat.  And thank you from the bottom of my heart for all of the years of dedication and love. Without  you – most of us wouldn’t be doing what we are doing today.

Posted under Infertility, RESOLVE, adoption

I just received a communication from RESOLVE: The National Patient Organization and The American Fertility Association.  Apparently they have gotten word that the Georgia State Senate Committee is scheduled to hear testimony on SB 204, on Monday, March 9 at 10:30 AM.  This is a bill that regulates embryo donation and seeks to extend the definition of “child” to include an embryo. 

The language of this bill reminds me of when The President’s Council of Bio Ethics was calling an embryo – “a child to be” and using other emotionally laden language. Once again – infertility patients are being thrown into the abortion debate.

If right to lifer’s are able to give embryo’s a different kind of status in infertility treatment – then they will be able to leverage their gains in that legislation to out law abortion. That is the true agenda here – this is about rolling back Roe vs Wade – and infertility treatment is a back door into winning that fight.

Back in 2004, the testimony that I was able to give along with members of RESOLVE and ASRM was powerful enough to have that language removed. We were able to garner incredible media attention on the actions and intentions of The President’s Council of Bio Ethics – and they pulled back. 

This times it seems that everyone was a little late to mobilize around all of the different legislation that is pending in Georgia – and now we are in a place of trying to catch up. I hope it isn’t too late.

The call is to have our voices heard in this debate and to get residents of Georgia to write in opposition to these bills – and physically show up on Monday to give testimony.  You know - many of us didn’t think in a land where we elected our first African American President – Prop 8 would pass. Yet it did. That’s because the religious right is way more organized then we are.  If you don’t think that all of the outrageous legislation that is pending is Georgia could possibly pass – just think about Prop 8. It passed. Not but much – but it passed.  

So, if you can attend the Hearing on Monday,  March 9th at 10:30 AM in Room 450 of the State Capitol in Georgia – please do so. You can also visit RESOLVE or The AFA   for more information about sending letters and calling Georgia State Senators. 

But Georgia is simply the canary in the coal mine. It is time for there to be an organized national plan of communication and advocacy about the calls for regulation of the field of reproductive medicine.  Because I keep looking at the canary – and it doesn’t look to good to me.

Posted under Uncategorized