The Secret Club that No One Wants to Join

I met Senate candidate Karen Handel at an event yesterday.  At this point, Googling her mostly turns up links about her candidacy and about her having been an executive with the Susan G. Komen Foundation.  However, one thing I had learned about her was what had happened when she ran for governor of Georgia. For those that don't know, Handel lost in a primary runoff to Nathan Deal, and one significant factor in this loss (since she had had a significantly larger percentage in the first election) was Georgia Right to Life throwing their support behind Deal.  One of the reasons they gave?  Handel not taking action to ban IVF.

But there's more to it than that.  Karen is one of us.  She and her husband, Steve, tried, including using treatments, for almost ten years and were not able to become parents.  And for that, GRTL called her a "barren" woman.

Those of you who know me in real life know that I am vehemently pro-life.  However, as I become active in political events in Georgia, I cannot and will not support any organization that wants to take away my ability to create life.  I will continue to support pro-life initiatives that do not interfere with IVF, but I will not support those that do.  Because, like Karen Handel, I have been there.

When I met Karen yesterday, the first thing I did was thank her for standing up for infertiles and explain why it was so important to me that she had.  Karen immediately hugged me and said she was sorry for that as we both teared up.  We understood each other.  We had never met before, but we understood each other immediately because of our membership in that secret club.  We talked about how that word "barren" gets used as an accusation and an epithet.  We talked about how it was hard to find people who could relate.  We didn't need to say the words, because we both understood, but it still helped to say them.  Because at the same time that you never want someone else to be a member of the club, it's still helpful to talk to someone that is.

Hope and Despair

Christy at Searching for our Silver Lining asked me about a comment I made in another post about struggling with the question of hope versus despair.  In his post about infertility, Steve Wiens asserts that it's ok to hope.  But for me, it's not.  For me, having hope just makes the despair worse when I fail, when I am failed by my body.

I've watched The Dark Knight Rises several times recently, and there's something Bane says that captures it for me.  Yes, I'm looking to Bane for philosophy, but it fits.  "There's a reason why this prison is the worst hell on earth... Hope. Every man who has ventured here over the centuries has looked up to the light and imagined climbing to freedom. So easy... So simple... And like shipwrecked men turning to sea water from uncontrollable thirst, many have died trying. I learned here that there can be no true despair without hope. "

That's the danger of hope.  The despair is going to be there no matter what.  But when I still let myself hope before, the fall was worse because it was from a greater height.  The months when I had no hope truly were easier than the ones where I thought something could happen.

I'm glad that other people have hope for me.  It touched me deeply when a friend of mine told me a couple years ago that she would hold my hope for me until I was ready for it.  There are a few other people that I know have hope that I will be a mother someday, and it means the world to me that they do.

But I can't.

Follow Up

For a while I kept only remembering to post the Steve Wiens blog post about infertility either when I wasn't at Facebook or when it was late enough that no one would see it.  I just remembered at a decent hour (yes, so quarter of midnight is a decent hour in my book, 100 plus other people on my friends list agree, so there) and posted, so we'll see what reaction, if any, it gets.

Parenting and Guys and Infertility and the Media

There's a blog post floating around Facebook after HuffPost reprinted it, about the stress of being a parent of small children, even while appreciating it after infertility.  In the post, he says he's going to write a post soon about infertility, and if you follow the link to the original post, he links to his post about infertility.  I'm really happy to see a guy posting about infertility, there's not nearly enough of it.

At the same time, it made me cry, because I'm still struggling with a lot of this, especially the question of hope and despair.

And it also makes me a little mad, because the article on parenting is circulating far and wide, but you know the one about infertility won't.  It'll get more views than it otherwise would because of the reposting, but only from people who bother to go to his blog from HuffPost and from there to the infertility post.  HuffPost didn't bother to link to it, because really, who cares about infertility out there in the wider world?  Not enough people to be worth posting a link for, apparently.

Landmines

I wish I didn't dread this day every year.  It was somewhat better this year.  I went for the strategy of avoidance and ignoring, and it actually worked somewhat successfully.  I've been able to tune out most of the commercials and signs and ads, but it's still there.  I still got asked by a waitress Friday night, "are you a mother?"  And when I said no I got the really awkward, "Oh, well, have a happy day anyway."

I'd like to be able to go to church today, but I know that's a trigger for me.  I try to just focus on celebrating the moms in my life, but almost every sermon focuses on how blessed it is to be a mother.  Which I'm not.  And on how life means more when you're a mother.  Which I may never know.

I'm trying to take care of myself today.  I'd like to be able to go to church, but I'm not.  I'm going and doing something fun where I won't run into happy families celebrating together.  And we'll see how it goes.

Epic Fail

For the first time ever, RESOLVE put together a scorecard to rank the states (and DC) in how fertility friendly they are.  The rankings were created based on four factors: the insurance mandate climate, the legislative climate, the number of fertility clinics as compared to the number of people dealing with infertility, and the number of RESOLVE support groups.  Before you click on the link, take a guess as to where Georgia is ranked.  I'll wait.

Any guesses?

I talked about this with one of my local friends, who guessed 49th.  In the voice of several game shows, I had to tell that person "LOWER!!"  Yes, ladies and gentlemen, Georgia is DEAD LAST in the rankings.

Where is Maryland, you may ask?  Between the mandated IVF coverage and a couple of large clinics, among other factors, Maryland ranks 5th.  Yes, I moved from a state that ended up ranked 5th, where my IVF would have been covered, to the state being pointed out for epic failure.

I still have no idea whether I'll need it, whether it will impact my immediate life which fertility climate I live in.  And no matter what, I'm still happy that I moved here.  But at the same time, I will be looking for what opportunities I can fit in to get involved and advocate, whether it's for myself or for my sisters.

So maybe that's how I'll recognize NIAW, both during the week and after.

Progress

Reading through my reading page for the first time in many months, I'm seeing how much I've missed, how many people who I follow have been able to adopt or gotten their BFP or even had their baby, and I'm amazed.  I truly am happy to see that people I've followed and cared about have had their dreams come true while I've been away in the reaches of outer space.

NIAW and Me

Last year at this time, I was preparing blog posts, changing my cover photo on Facebook, posting a poem every day, getting my suit and talking points ready for Advocacy Day.  This year is...different.  And I'm not entirely sure where I fit in.

I just put up one of Keiko's cover photos, one that points to the profile pic and says "Because 1 in 8 is someone you know."  Implying, of course, that the person in the profile pic is infertile.  But am I? I don't know.  After all, the testing all came back normal.  Together with DH, I was infertile.  But I don't know if I, in and of myself, am infertile.  So I don't know if the cover photo applies to me or not.  Looking back at the one I got from her last year, it also says, "Because 1 in 8 is someone you know" but adds "Like me."  So I can't just go back to last year's photo without wondering either.

Yes, I could just let NIAW pass by without notice.  After all, I am in an awkward stage of my infertility-or-lack-thereof journey.  But that feels wrong, too.  It isn't true to the experience that I've had so far, and it isn't true to the experience that people I care about have had or are still in the midst of.  The theme for this year's Bloggers Unite is Join the Movement.  According to the Resolve website, "The goal of this year's Blog Challenge is to bring together bloggers to talk about how you are making the difference in ways large and small in the lives of people with infertility. Topics covered in your blog post can include how you broke the silence of infertility in your life, how you advocated for the infertility community, how you advocated for yourself, or how you created a support community to help you through the infertility journey". 

Every other year, I've had an easy time writing about the theme.  But this year, I don't know what to say.  I probably won't write a post, because I don't know what I've really done.  I guess I'm "joining the movement" by not slinking quietly by and ignoring NIAW.  But anything else?  I dunno.  Last year it was clear, but not anymore.

Infertility: The Musical that's Hard to Conceive

Seriously?!  Seriously!!

I walked into my new coworker's cube today. (Oh, yeah, for those of you who I don't know IRL or haven't caught up with in a while, I've been busy during this hiatus, too...I've moved to Georgia and started a new job in mental health management.)  Anyway, I walked into my new coworker's cube today, and I walked right into hearing a guy singing about having sperm in his pocket.  Apparently, there really is Infertility: The Musical.  Wow, I listen to a LOT of show tunes, and that's still a new one on me!

I guess there's an adaptation of Rule 34 for musicals.

Welcome back, Herr Doctor. How was space?

So, um, yeah, I've been gone a while.  After looking through LFCA to catch up and seeing Keiko's APB for missing bloggers, I'm half surprised I didn't end up on there!  There has been a reason for the 4 month absence, though.  For those I don't know in person and for those I know in person but hadn't caught up with to tell, I'm now separated.  I made the choice to leave DH, and we have been separated since the beginning of June.

Before I say anything else, I want to emphasize that DH and I are friends again.  Yes, already.  DH is a very good man and a very good friend, and I care about him very much.  However, he is not the man that I should be married to at this point. 

One thing that has been key to me, both as I made the decision to leave and since then, is the deep sense of peace that I have had that, even if I don't know when or how, I will be a mother someday.  That sense of peace has stuck with me, to the point where being around babies and pregnant women doesn't actually upset me anymore.

But what does that mean now?  After all, this is an infertility blog.  And I'm still not a mother.  But I'm not trying to conceive either.  Where do I fit in the infertility community?  There's a whole room in Mel's Blogroll for special situations and a category in there for "Family Building When Single"...but I'm not building a family at this point.  I guess it's a good thing that I never took myself out of the "No Longer Trying/On A Break" room any of the times when I thought the IVF cycle would happen.  I didn't move to the "General Infertility and Treatments" room when I first thought I would cycle because I didn't get around to it.  After that cycle got canceled just before the first shots, I didn't want to jinx it any of the other times.  After that I couldn't believe that a cycle would actually happen until the first shot (although that didn't seem to help much each time it got postponed).  But at any rate, I don't really know where I fit in anymore.

I was considering just letting the blog die.  But my friend Katie pointed out that it could help other people to see a story that doesn't end with being a mother or living as a couple child-free.  So I decided to keep posting.  I don't know how often I'll post or how active I'll be as a poster or a commenter, but I am going to keep this blog going.  We'll see what happens on this crazy adventure called life!

I've been listening to a LOT of 90's stuff lately.  My satellite radio has been stuck on the grunge/alternative station for about 2 weeks, especially since there's a lot of good stuff to crank up on there.  And on Saturday I was out with my oldest friend and there was a 90's cover band, Rollerblades!  So here's a couple songs I've been singing along to lately.

Mighty Mighty Bosstones "The Impression That I Get"...I've been cranking this one up a lot!

Fastball "The Way"

Advocacy Day - Yes, Finally

All right, guys, I'm finally getting around to writing about Advocacy Day.

Like I said last week, there was a welcome reception downtown on Tuesday night.  I got to meet Keiko Zoll, as well as several other great ladies, and I went out for tapas with two of them afterwards.  There had been snacks at the reception, but I wanted a little more, and the three of us had a great time!  Plus, I was able to pass along a book I was done with to one of them (brought it to her the next morning).

Wednesday morning, I got downtown bright and early for our training session.  The keynote speaker was Senator Blanche Lincoln of Arkansas, who had been the youngest woman elected to the Senate. 

We then got instruction and guidance on what to say and how to handle questions.  There were two bills that we were advocating for, the Family Act of 2011, a tax credit for 50% of costs associated with in vitro fertilization or preserving fertility for cancer patients, and to extend the Adoption Tax Credit, which is set to expire on December 31 unless it is renewed.  We met with the other advocates from our home states to determine who would cover what talking points for meetings with multiple constituents and to see who wanted to drop by offices of Representatives who did not have a constituent present. 

I said that I would visit Rep. Andy Harris' office, since I live right next to his district.  I met with his tax policy staffer, since the healthcare policy staffer was unavailable, and I explained the impact of infertility and of the lack of coverage for infertility to key groups in the state such as military personnel, federal employees, and employees of small businesses.  I figured those were three good areas to emphasize, with Harris being a Republican.  Since I knew that the staffer was not expecting this and would have to talk to Rep. Harris before saying anything, I got his card and said that I would follow up with him to find out what Rep. Harris thinks of the bills and if he has any questions.  I did make sure to get a picture outside of Rep. Harris' office before trotting off to lunch with a close friend.

After lunch, I had an hour before my meeting with staffers from Steny Hoyer's office, so I walked around the Capitol and did some gawking.  I can't believe that I had never been, despite all the field trips to DC that every kid in Maryland has.  I did take a picture of his office entrance.  He does get the deluxe accommodations, being the Minority Whip.

For this meeting, I had a consultant with me, one of the ones that RESOLVE has hired to help with the lobbying for the Family Act of 2011.  We met with two of Rep. Hoyer's staffers that cover healthcare policy.  One of them was 6 months pregnant, which the consultant had mentioned ahead of time as an aside (since he knew her from other projects).  I was glad to have the warning so I could prepare myself!  We met in one of the big pretty conference rooms, although the grandeur was somewhat spoiled by having to go to the other end of the table to avoid the crumbs from a lunch meeting.  The main thing that I took away from the meeting was that the main work and opportunity for the bill to pass would be after November, once Congress reconvened with its new composition.  Before leaving, I got a pic with the two staffers. 

After this meeting, I had about an hour and a half before my next meeting, with a staffer for Senator Mikulski.  There had been too many advocates from Maryland for each of us to meet with both senators, since the meetings had a max of 10, so I chose to meet with Senator Mikulski's office and not Senator Cardin's.  My cousinish (she's the sister of my cousin's husband) works in the HR department of one of the Senate office buildings, so I went to hang out with her for a little while.  Dianna introduced me to her coworkers and showed me the little subway that runs between the office buildings and the Capitol. 

For the meeting with Senator Mikulski's staffer, I was with three other advocates and another consultant (a different one than before).  One thing that the consultant was trying to encourage was for Senator Mikulski, as the chair of a subcommittee on children and families, to hold a field hearing about infertility at Shady Grove Fertility Center.  Sorry, I did not get a picture in or outside Senator Mikulski's office.  There was a debrief session at the end of the day, but I didn't go because it was on the other side of the Capitol from my last meeting and mostly overlapped with it.  Last picture for this post is one that was actually taken before I went to Rep. Harris' office, of me in front of the Capitol. Overall it was a great day.  I enjoyed meeting people, and it felt good to be doing something real to advocate, something more than just having this blog.  I don't know how much of a difference the blog makes, but if we can get the Family Act passed and the Adoption Tax Credit renewed, that actually helps people.  And that's a big deal.

Music Monday # 18 and NaBloPoMo Day 30 - Scars

I know, I know, I owe you guys a post all about how amazing Advocacy Day was, and I promise I'll get there!  But it is Music Monday and the last day of NaBloPoMo covering poetry, and so I want to get a post in to cover those.  I heard this song yesterday on the Christian rock station, and it linked well with the last poem that I had wanted to make sure to share.

Depression

A black cloud descends,
Blue sadness and black fatigue
Swirl
As it tightens around me;
It binds my arms,
Makes me unable
To fight its chafing effects.

My life no longer belongs
To me.
Scars appear,
Tears fall,
Yells come from my throat,
But it is the cloud that does these things,
Not me.

I try to look past the cloud,
Try to remember happiness,
But my memories are blocked
By the force that governs my life;
It censors happy words,
Thoughts, pictures,
But there is one thing it cannot stop...

A high, clear note
Penetrates the darkness.
Music follows
As a flute flirts
With my cloud,
Chasing bits away
Until happiness returns.

Anticipation

Ooh, ooh, it's the night before something fun!!  I started getting really excited about Advocacy Day tonight when I went downtown for the Welcome Reception.  I got to meet a blogger I very much admire, Keiko Zoll, and I ended up talking for a while with a couple of great ladies that I then went for tapas with.  I'm looking forward to the training and meeting with people tomorrow (and to lunch with a good friend and seeing my cousinish who works in the Senate building).  I'll let y'all know how it goes!

Music Monday #17 - Written in the Stars

This song grabbed me from the first time I heard it.  I really love the emotion that comes through in the song.  It struck me in a new light, though, thinking about infertility.  I think all of us have asked the question of why me, why my partner, why us.  I know I sure have.  Whether we believe in God, the Fates, destiny, some combination thereof, it's a question that often comes to my mind.  I've basically (most of the time) gotten past the question of whether we're being punished for something with infertility, but I still wonder about the role of destiny, God's plan, whatever.

Some parts of this song make me wonder if it will fit even better if I have a miscarriage, especially the parts about being given paradise for only a day and about wishing in the darkest days never to have learned what it is to be in love and have that love returned.  I thought about waiting and posting this song only if I had a miscarriage and felt like it fit then.  But then I decided to post it not instead because I didn't want to tempt Fate by having it in the back of my mind.  Silly, I know.  But a lot of us do things to try to sway Fate in one way or another, from fertility socks to saying a specific prayer to creating a fertility ritual.  And I'm trying to not accidentally jinx myself.

National Infertility Awareness Week - Don't Ignore the Pain

One thing that I've noticed throughout this infertility journey has been the tendency of some people to want to brush aside the effect that infertility has on me and that pain that I feel as a result of this disease.  From my perspective (which the therapist in me is obligated to point out is a limited one), it seems like the people that know about the infertility and its effect on me are divided into two camps: those who want my infertility to be out of my way and those who want my infertility to be out of their way.

That doesn't mean that the people in the second camp don't care about me.  I know they do.  They show it in other ways and in other areas of my life.  And sometimes they try to help me deal with the infertility, too.  But there's a very distinct difference in how it comes across.

The difference shows in how people talk to me and how they talk about me.  It shows in how they ask me how I'm doing and how they offer advice.  It shows in how they tell me about their pregnancies and how they relate to me after telling me about their pregnancies. It shows in how often they check in to see how I'm doing and in how they react if I tell them I'm having a hard time.  It's the difference between whether they want to support me or whether instead they want to fix me.

I've been surprised at times by who has fallen into one camp or the other.  People that I generally expect to be more of the "fix it and forget it" type have said things that have really touched me or have told me they're available any time I need or want to talk.  People that have been there for me in other areas have offered platitudes or repeated the same advice without listening to what I'm really saying.  

I wrote this poem last winter about how it feels when the pain is ignored:

Tear tracks stiffen and dry out,
Cracks in my armor,
Cracks in my soul
Leaving oozing open wounds.
My essence drains through
The sieve of my heart
And lies on the floor like sand
To be swept into a corner,
Forgotten.

You can't fix the pain of my infertility.  No one can.  But please don't ignore it, either.  Please, ask me how I'm feeling.  Ask me what I need.  Ask how you can support me. 

For more information about infertility, please visit http://www.resolve.org/infertility101
For more information about National Infertility Awareness Week, please visit http://www.resolve.org/national-infertility-awareness-week/about.html
For more information about etiquette in talking to your friend or family member about their infertility, please visit http://www.resolve.org/support-and-services/for-family--friends/infertility-etiquette.html

NaBloPoMo Day 20 - My Other Life

I am a lioness
Mistress of all I see
The grasslands of Africa are my playgrounds
The pride my playmates.
I am bonded to the earth
By the bones of my ancestors.
Were I to be removed from the savannah,
I would lose
All connection.

ICLW #8

Hey, everyone, I'm Jessie and welcome to my little corner of the blogoverse!  DH and I have been diagnosed with unexplained infertility, but we turned out to both be carriers of spinal muscular atrophy (SMA).  Because of that, we're waiting to be able to have IVF with preimplantation genetic diagnosis (PGD).  What we're waiting on right now is the PGD lab creating the probe, which is what they compare each embryo against to see which ones would have SMA.  We're hoping to be able to start a cycle in June, after a LOT of insurance nightmares.

After a bit of a hiatus for me to get over pneumonia, this is going to be a busy ICLW!  NAIW starts on Sunday, and I'll be doing a blog post for Bloggers Unite at some point in the week.  I'm also participating in Advocacy Day on Wednesday, and I'm sure I'll be writing about that.  On Mondays (usually), I post a song that has touched me during the week.  I've also been posting a poem every day this month (except when I was too sick) for NaBloPoMo.  I've been posting all of my own work at this point, although none of it is new.  I'm also starting to participate in Mel's MFA Sunday School, so hopefully I will start creating new work again.  Maybe I'll even write more of the book I started many years ago.  Come along with me on the adventure and find out!

Music (Thursday) #16 - Chasing Cars

I've been watching a lot of Grey's Anatomy lately, just starting with disc 1 of season 1 and playing through the series while I do paperwork for work every night (before I got too sick and was told to stop).  I haven't gotten up to the part where this song starts being used, but watching Grey's still makes me think of it.  I had actually misheard part of the lyrics as, "Those three words/are said too much/and not enough."  Even though I now know the third line of that is, "They're not enough," I still like to think of it the other way, because it's so true.  Those three words are said too much by people who don't mean them.  But they're also not said often enough by the people that do mean them, whether to the people we love as family, as friends, or romantically.  We never know when the chances to say them will end.

This is my favorite version of the song.  It wasn't until around when this episode was done that I actually knew Sara Ramirez had been on Broadway before her role on Grey's, but her voice certainly shows the training!

Absence

I will be back, I promise!  Turns out that what I thought was allergies was mild pneumonia, so I'm resting now.