Killingmesoftly-One woman's quest to survive infertility

Killingmesoftly-One woman's quest to survive infertility

Thursday, January 31, 2019

A Thousand Small Goodbyes

It’s Monday morning-Groundhog Day.  I walk into my IVF clinic for monitoring, just like I’ve done countless identical mornings in the past two years.  I wonder what they think of me when I show up.   I feel like a DMV customer who has failed the road test 15 times, but keeps showing up for one more shot.  Does anyone actually think I will succeed, or am I like I the beloved but hopeless case that has just become part of the fabric of their practice?   It makes me wonder, when do we say enough is enough?  When do we move on to the next alternative?   

I think a lot has to do with the stages of grief and where we are.  Elisabeth Kubler Ross developed a framework for helping understand the process we go through when we experience loss.    Although most people think of loss as the death of a loved one, with infertility loss is a constant part of our story.  We are always letting go.  First we have to let go of the idea of getting pregnant quickly and easily.   This may lead to losing our dream of being pregnant with all our friends, of joyful pregnancy announcements, of family gatherings with our baby in tow.  Some of us have to say goodbye to having a child who is genetically linked to us.  Some of us have to say goodbye to having the family size we dreamed of, or perfectly spaced siblings who will be the best of friends.  Maybe we end up saying goodbye to the experience of carrying a child inside of us.  Some of us will say goodbye to the idea of being parents at all.  Some are grieving babies lost during gestation or after birth.   Each loss is a little death,  and all of us are moving through these stages of grief in response.   The only way out is through, so instead of fighting these stages, let’s understand and embrace them so that we can heal and move on. 

I've gone through these 5 stages so many different times with each disappointment and loss.  I've been in denial about my diagnoses and convinced myself that I would be the 1% of women in my situation who ended up with a successful OE pregnancy.   When I hit the anger stage, I seem to feel  angry at the whole world.  I get angry at the women in the news stories who mistreat their kids when all I want is to love one.  I get angry at my husband for having poor morphology. I get angry at the doctors for not having a miracle cure. I get angry at medical insurance in America for not covering endless cycles until this works. I get angry at God for abandoning me, I get angry at myself for every choice I ever made that I think got in the way of my dream of motherhood.   This is an exhausting phase for me- it's hard to hold onto anger.   The next phrase is tiring for me too. Bargaining.  I'm a master at this.  In my mind I'm always promising that if I could just, just have this baby I would (insert grandiose goals).  I promise unrealistic things like never complaining about anything ever again, or starting a community service organization.   I promise anything I think will earn me this baby I'm longing for.  Depression hits when I realize that it's not going to work.  That I have to say goodbye to whatever I was hoping for this time. Then I retreat to warm pijamas, long cries, and lots of cookies.  I allow myself to grieve, and then finally arrive at acceptance.  Of course though, whenever one fertility dream is lost, there is always a new one that pops right up to take its place, so cycling through these stages is never really done. Right now, after several cancelled cycles due to poor response,  I am in the process of grieving the loss of my own eggs. I'm working towards accepting that loss so I can get excited about using donor eggs, but  I'm not quite there yet.  Some days I feel fine about it, and other days I'm right back to denial, anger, or bargaining.  Its comforting to me  to know that these feelings are normal, that they are part of our greater human experience, and that eventually I will reach a place of peace and acceptance with however this turns out.   We all will.  We grieve, but we hope.  We fall, but we rise again.  We push on through the tears, because our babies are waiting for us. 

Saturday, January 26, 2019

Collateral Damage-Part 1

Collateral damage. defines it among other things as “any damage incidental to an activity”.   Miriam-Webster calls it, “Injury inflicted on something other than an intended target”.  Today  I want to give some time and attention to the collateral damage of this infertility process, and to mourn for some of the things that have been lost or altered in my life.

I thought I was going into this with eyes wide open.  Really.  I had read about the effects of the fertility medications on my mind and body.  I knew what kind of damage was going to be inflicted on my bank account due to the treatments.  I knew that this was going to be hard on body, mind, and soul.  I was ready.  Or so I thought.  I don’t really think that I understood how many parts of my life would get caught in the crossfire though.  I was completely unaware of the injuries that would be sustained in parts of my life I considered to be far from the frontlines of injections and tear stained pillows.  One of those parts of my life has been my friendships.  The damage didn't happen all at once.  It was such a slow shift that at first it was imperceptible.  But now, as I peruse Facebook and see smiling faces at events I didn’t attend, with friends I rarely see, I  recognize the shifts that have occurred in my friendships, and I feel a surge of anger at Infertility and what she’s taken from me.

I’ve always been lucky to be surrounded by a group of incredible ladies that I’ve been blessed to call my friends.  Even after my wedding, my first bout with infertility, and the birth of my son, I was still intentional about creating consistent, meaningful space for my friendships. When I began my struggle with secondary infertility, I didn't think that anything would be different.  I was Superwoman- I could handle it all.  I could battle infertility and be cool and fun at the same time.  We had just started treatments, and since I already had a son, I figured it was just a matter of time.  I was in good spirits, and life was still pretty close to normal. 

As the months and years wore on though, my life as I knew it slowly transformed.  With each failed cycle, I increased my focus on my fertility.  The pursuit of fertility started to occupy more and more of my headspace, and each pregnancy loss and failed cycle became harder and harder to bounce back from.  As a result the rest of my life became smaller, more restrictive, more stagnant.  Instead of being “fun” and “cool”, I felt like it took every ounce of my strength just to stay on top of what I needed to do to conceive and to feel ok while doing it.

Fast forward 2 years… Life now is centered almost exclusively on getting pregnant-.  I spend time researching fertility topics, emailing clinics, looking up donors, cooking the right “fertility friendly” foods, doing fertility yoga, getting to acupuncture, giving myself injections, running to appointments, making sure I have enough sleep to grow a healthy egg, eliminating all toxins from my life, and monitoring my cycle.  Life is at the same time so regimented, and yet completely unpredictable.  At any moment I may be in the middle of a cycle or grieving over a failed cycle (I am not fit for human consumption in those moments).  So, in order to be able to manage all of it, I’ve started turning down social invitations, and rarely extend any myself anymore.   Poor sleep is bad for my cycle so I can’t stay out late.  I have to give myself injections at certain times in the evenings, so I need to be at home those days.  Happy hours?  I’m staying away from alcohol and it’s tiring to keep explaining why I’m only having water all the time.   Meet for a mani/pedi?- I’m avoiding nail polish because of all the phthalates.  Shopping trips?  Sorry ladies, I would, but I have no money for clothes with all these IVF rounds, and besides- why buy clothes when you keep thinking you’re about to get pregnant.  Pilates and Zumba classes?  I’m laying low during the TWW, and I feel bloated and uncomfortable during stims, so I have to pass. I haven’t traveled to see out of town friends for years, and girl’s weekends or daytrips are a problem for all the reasons above.    Infertility is a logistical nightmare where I can never predict my availability, so it’s just easier to say no. 

This state of limbo also makes it hard to have meaningful conversations with friends.  I dread the standard, “What’s up?”.    When I ask my friends this question I’m treated to stories about vacations, good times with friends, date nights, kids.  When the question is directed towards me I have nothing to say, because nothing’s “up”.  I’m in limbo.  I haven’t been on any vacations, or read any great books, or started a new hobby, or hit a great exercise class, or checked out a new wine bar.  Nothing.  I’m doing the same thing I’ve been doing every week for two years.  I’m still reading fertility books and blogs.  I’m still making wheatgrass shots and green juice, and cooking fertility friendly meals.   I’m still injecting myself with hormones.  I’m still obsessing during the TWW.  I’m still crying over another failed cycle. That’s it.  I’m exhausted just thinking about it, and I don’t want to expend the energy trying to explain it to people who haven’t been there and just don’t really understand, so I just say something about how busy I am juggling work and my son and leave it at that.  It’s hard to be living a life completely consumed by infertility, and not to be able to really talk about it.  Sometimes it’s just easier to stay home, to keep my energy close, and to focus on surviving.

Don’t get me wrong- I still have good friends who allow me the space to be authentic and talk about my struggles, and I cherish them immensely.  Even so, I grieve the friendships that are becoming more distant and I miss those people who used to be a bigger part of my life.  I see many of my friendships starting to fade into the distance, and even though my mind wants to chase them and to tell them to wait up for me, I know those words wouldn’t be honest, because I have no idea of how long infertility will hold me hostage, and I have no idea what kind of person I’ll be when I emerge.  

Like it or not, infertility is a transformative process that changes not only us, but our relationships too.  Some may simply survive infertility, others may transform into something deeper, and others may fade as we move in directions.  Whatever happens, I’m thankful for everyone who has touched my life along the way. 
Thank you all for sharing this space with me tonight!  Sending good energy your way. 

"The art of life lies in a constant readjustment to our surrounding". Kakuzo Okakura (The Book Of Tea)

Wednesday, January 16, 2019

Wild Hope

It's THAT day of the month.  I look down, a tinge of red, another period- and I'm devastated.  I hate that this always hits me so hard.  I understand if I had just gone through a round of IVF and implanted a plump and healthy embryo in a clinic renowned for success.  But no such thing happened this month.  This month, at age 43, with a balanced translocation to boot, I had a cancelled IUI cycle due to poor response.   We tried on our own, but statistically speaking, the odds were far, far from in my favor.  My period should not have been a surprise to me.  I shouldn't have been so upset, but I was.

Whenever my period comes, my husband knows to give me some space to grieve, so I went up to my room, and started to think about why this is so hard for me each month.  The words that finally 
came to mind were "wild hope". That’s how I define the kind of hope that grips our hearts in the absence of any meaningful evidence that hope is warranted.  It is not a justified hope, and it is not a cautious hope.  It is a passionate desperate hope that holds tight, no matter how hard we try to shake it off, and it is exactly the kind of hope that takes up residence in my heart each and every month no matter how good or bad of a cycle we had.   Even after the worst cycles, when my rational mind clearly rejects that possibility of hope (ex. ultrasound shows I didn’t even ovulate, but maybe, just maybe...) my heart continues to hold on.  As hard as I try to play it cool and build up some emotional armor to protect me from the impending letdown, hope keeps sneaking up on me.  I can't help but hope that maybe conception happened in spite of my dismal response to intervention, that  maybe I beat the odds of age and balanced translocation, that maybe this painful journey is over.  

It’s such a vulnerable place to be, and it often just makes me feel silly to be thinking and feeling this way.  I’m a smart, rationale woman most of the time, but I feel like my mind is trying to sell me some emotional snake oil each month, and I’m buying.   Wild hope leads me to forums and websites, looking for any post or story that would suggest that there might be a happy ending in spite of whatever roadblock I've hit.   Wild hope is only one step ahead of disappointment, and I can feel it in hot pursuit.  

I’ve tried to shake wild hope in order to make disappointments easier to bear, but I can't seem to do it. So maybe I just need to make friends with wild hope. Maybe I need to set the self-judgment aside and just be ok with how I'm feeling.   Maybe my heart’s refusal to give up on this baby no matter what the obstacles is what keeps me going. Maybe love and reason don’t live in the same zipcode.   Maybe I need to make peace with wild hope, and thank it for holding on in tough times when I feel ready to give up.  Perhaps wild hope is a testament of love for my unborn child and belief that somehow, miracles DO happen.  Keep hoping wildly ladies, and keep daring to dream.

Somewhere over the rainbow,
Way up high.
There's a land that I've heard of,
Once in a lullaby.

Somewhere over the rainbow,
Skies are blue.
And the dreams that you dare to dream really do come true.

Somewhere Over The Rainbow lyrics © Sony/ATV Music Publishing LLC, CONEXION MEDIA GROUP, INC.

Sunday, January 13, 2019

Daring Greatly

The other day I was talking with someone who I hadn't seen in a couple of months.  She asked how I was doing, and in a moment of vulnerability I shared that I had really been struggling with my fertility journey.    She answered, "Oh, you're still doing that?"; but her question didn't express interest, curiosity, or concern.  Her tone of voice expressed a sense of disbelief that I was still pursuing that goal,  and suggested a touch of disdain as well.  Childless by choice, I realized that my quest must seem ridiculous to her.  So I launched into my favorite explanation- "I'm committed to giving my son a sibling.  I'm an older mom and won't be around forever, and he has no cousins nearby, so this is for him".   The conversation ended there, and she didn't ask any further questions or offer support.  This person has been far from my only critic, so this is a well rehearsed script.  When I focus my answer on my son, people back off, and show some understanding, but when I answer honestly and share that I am on this journey due to a deep longing in my heart for another child I have been met with judgment.  This comes in the form of comments that question my decision to continue to pursue this after so many years of failure, that judge me for not being "satisfied" with just one child, that suggest selfishness at pursuing fertility treatments instead of fostering or adopting, and that hint at my age.  Comments have included, "Is this really worth stressing your marriage over?",  "You should be happy that you have one",  "Two is alot of work, you're better off with just one", "I couldn't imagine having a baby at your age", "That's alot of money to spend", "When do you say enough is enough?",  "Maybe it's just not meant to be".  And don't even get me started about when I mention that I've been exploring donor egg.

In the face of criticism and judgment I go straight into shame and embarrassment.  I second guess all my choices.  I question the yearning in my heart. I put on a mask and hide from those around me.    It's not a pretty place.  While listening to a Brene Brown talk this week though,  I heard a quotation  that helped me think of these moments in a new way.  The quote is from Teddy Roosevelt, and I wanted to share it with you.

These words made me see myself and my journey in a new way.  Ladies, we are the "man in the arena".  We go head to head with infertility everyday.  We get knocked down, wounded, and dirty, but we keep getting up.  We rise to our feet and we wipe off our tears.  We "strive valiantly".  We give our all to a "worthy cause", because what could be more worthy than calling forth life?    We hope that we will succeed, but even if we fail, we will fail "while daring greatly".   We can own that effort, that heart, and that bravery with pride.  I understand that our friends and loved ones mean well.  Their comments come from a place of concern for our well-being,  but they are not in the arena with us.  They sit in the stands and offer advice and criticism for how to approach an opponent they have never faced, in a battle they will most likely never fight.  Going forward I will hold these words close.  I will do my best to shake off the criticism of my choices on this journey.  I will look around the arena and I will link hands with the other women out there; women (and some men too) who are standing strong and DARING GREATLY.    Thank you for allowing me to share these thought with you today. 

Monday, January 7, 2019

lessons from a coffee shop

There's nothing as comforting for me as a cappuccino- the smell of the beans, the warmth of the cup, the unique designs swirled onto the top.  Before trying to conceive I would regularly visit one our local mom and pop coffee shops with a book or a journal, and lose myself for a couple of hours in a state of caffeinated self-reflection.  When I started my fertility journey though, it was one of the first thing to go.  Apparently it's harmful for egg quality, and since my eggs aren't winning any awards right now, I cut it out.  I know it seems silly, but the loss of that ritual stings.   It felt like part of who I was, like it was linked somehow with my sense of self.  I often feel resentful about it, because I've given up something that brought me joy, but I haven't gotten a baby in return.  It's a bum deal.  This journey has been like that- seemingly small modifications that sometimes feel like deeper losses for me.  Just another indignity of this process.   Today though, I gave myself permission to revisit my ritual for the first time in a very long time.   I sat for hours, sipped my cappuccino, read, and journaled.  And part of my heart resurfaced for a brief moment.  It was glorious.   I think it's important sometimes, with all of our self-imposed infertility rules and regimens, to allow ourselves some moments of relative normalcy.  That way we can remember that infertility hasn't destroyed the core of who we are.  Those vibrant and beautiful parts of ourselves are still there.  Whatever the outcome of our journey, we remember that we are still there beneath the pain and disappointment.  We may emerge from this journey changed, but we WILL emerge.   Thank you for sharing this moment with me today.

Friday, January 4, 2019

motion sickness

One of the hardest parts of this journey has been the constant and often sudden ups and downs.  I feel like I have constant emotional motion sickness.  The highs that come with hope or a positive pregnancy test are followed by the lows that come with a failed cycles, a bad test result, the pang of envy when a friend announces a pregnancy, or a miscarriage.  It's hard because I can't always predict what will hurdle me into the pit of despair, so I often don't see it coming.  Things that destroy me one month cause only a passing discomfort the next, and things that I was able to handle one month break me the next.

I didn't see it coming when my low hit last month.  This time it was a deep, soul crushing, ugly cry, struggle to get out of bed,  LOW.   I spiraled into a dark, dark place that lasted for weeks. I didn't expect it because what happened was far from my worst setback.  But for some reason, this one attacked me deep in my heart.

After one miscarriage and two failed IUI cycles in the last six months I was finally ready to try again in December.  The baseline ultrasound showed six follicles, which is a miracle number for me.  I hadn't had that many follicles since 2015.  So, I started to hope and get excited that this was finally the month when my dreams would come true.  But when I went in for my follow-up ultrasound there was zero growth with my follicles, and at the ultrasound after that one, after ten days of injections and hope, the cycle was finally cancelled when it became apparent my follicles weren't responding.  I was despondent.  I felt betrayed by my body.  I felt deficient- defective.  I felt embarrassed for having hoped so much.  "At her age- what was she thinking?" I imagined them whispering.  I fell into a pit of unworthiness ("Do I even deserve to have a baby?"  "Maybe this is what I get for having fun, traveling, and building a career instead of settling down earlier". "I'm such a fool for thinking I could have it all"). I was crushed by the shame of not being able to do what other women seemed to be able to do so easily, and for not being satisfied with the wonderful baby I already had. I was overcome with the hopelessness of the statistics, and I was plagued with self-doubt ("If I can't do this, maybe i can't do anything.  Maybe I'm doomed to fail at my job, at my friendships, at my marriage").  I felt like I didn't belong to the tribe of women out there, all smiling with their families and commiserating over the burdens of child rearing.   I tried to join the "We need wine to survive our kids" conversations,  but inside I just wanted to shout at them for not appreciating every second of the gift they'd been given (And then I'd feel ashamed for being judgmental- ugh!). I felt like everyone would pity me or judge me if they knew what I had been through.

All these feelings spiraled around me and threatened to consume me whole, but I was determined not to let them win.  I started to seek support from wise women in the form of books, blogs, and videos and I had a realization.  Maybe this fertility journey isn't actually about a baby after all.  Don't get me wrong- I want this baby with every fiber of my being, and I will continue to pursue that.  But maybe this journey is about finding a truer and deeper sense of self-worth, self-acceptance, and belonging.  Maybe it is about stepping out of all the anxiety and fear about things I can't control, and stepping into a more relaxed and present place.  Perhaps my future child is guiding me towards a place of greater strength, authenticity, joy, and connection before she arrives.  Maybe it's time to shift the focus of some of my energy inward, and to care for my own heart with the passion and commitment I one day hope to care for my child with.

One of the women who has had the greatest impact of my state of mind has been Brene Brown.  Although she doesn't specifically address infertility,  her work on shame, bravery, vulnerability, and self-acceptance has struck at the heart of the feelings and emotions that I have battled on this journey.   I've included some links if anyone is interested in taking a look at her work.
Brene brown homepage
Brene Brown TedTalk vulnerability
Brene Brown shame

Stay strong ladies.  Thank you for allowing me to be vulnerable with you, and thank you for sharing this moment with me.