My Body, My Scars, My Rage

I have two healthy beautiful children. I also have a lot of scars. I feel like I’ve been through it all. I spent years trying to conceive and stay pregnant long enough to have a healthy baby.

While I was (finally) pregnant with my daughter, I suffered through horrible pain from a fibroid that was a big as her. At 23 weeks, I wasn’t sure I could manage the pain, but there was no way I would ever let this pregnancy go or risk surgery to remove the fibroid. Not after all that I had done to get there. So I suffered and endured debilitating pain. At times that’s what it takes.

My son was conceived “spontaneously”. That was a gift/miracle and wonderful. Still, we both nearly died while I was in labor because his hand was the first part of his body to exit mine. I’m here to share this story with you thanks to my mother, who pushed me out the door to go to the hospital so we would arrive in time and excellent emergency work on the part of  doctor and staff who operated. It’s a miracle.

I wanted one more child but it seemed that it wasn’t meant to be: I contracted CMV, later had an early miscarriage and then, at 42, felt time had run out. So I gave up. And then I was pregnant. We were happy and getting ready and made it through the first trimester. Sometime early in the second trimester we were informed that the fetus was not healthy. As we learned more, we discovered we would not be able to care for the child that would be born. We so wanted to meet him, but it was beyond our resources as a couple and as parents to manage what would be ahead of him, even with the resources the state would have provided. We made the difficult decision to terminate. Actually, in Israel, as the woman, the decision was mine. I was the one who had to sign off on the procedure and it was made clear to me that it was my body, my decision. Taking that decision was the hardest thing I have every done.

I have always been pro-choice, I just never expected to exercise that right. Everyone talks about how women with the resources will always have access to safe abortive health care and that’s true; if you live in the wrong state you’ll go somewhere else. This statement misses a whole aspect of terminating a pregnancy, especially at a later stage, the mental anguish. If I had had to “fight” for my abortion or travel, or circumvent the law in any way, I’m not sure I would have done it. I would have felt trapped, helpless, and in unbearable mental anguish. Two years later I’m still grieving, but I know that I made the right decision. I’m an adult and mature enough to navigate that tension and those feelings, but they are there.

Every step in building my family I had total agency over my body. My body, with all the physical and emotional scars left by the process. That women in the US will face a new reality is terrifying. I’m furious.

Chesed Shel Emet

At some point in high school I read a short story as part of a Hebrew literature course. I remember nothing of the story line, but the title stuck: Chesed Shel Emet it is the Jewish concept of an act of kindness that one person can do for another, but for which the person can never be repaid, rewarded or thanked by the beneficiary- it can be loosely translated as a true act of kindness. The classic example in Judaism is being part of the chevra kadisha, the Burial Society, which prepares the body of a Jew for burial. The person who has died can never say “thank you,” but the act has allowed the deceased to fulfill one last ritual in accordance with Jewish tradition and law. A few years later, I recalled this concept as I “guarded” my grandfather’s body before his funeral, insuring that his body was not desecrated and doing one last favor on his behalf. It was the last moments that I had with him and while he will never be able to express his appreciation, I am beyond grateful for those few minutes.

Fast forward about 20 years, I was 16 weeks and 5 days pregnant but the fetus was not healthy. After consulting with various experts, we took the impossible decision to terminate the pregnancy. As the medical staff wheeled me into surgery to rid my body of his, one of the nurses leaned over and asked, “Do you want to arrange for the burial or would you like the chevrah kadisha to do so?” It was a question for which I was completely unprepared.

I had entered into this procedure fairly well informed, I met with doctors, nurses and a social worker all of whom explained the process and what to expect. I had consulted with friends who had been through this as well. I even knew that burial is not required according to Jewish law because I had not yet completed my 20th week of pregnancy, so I didn’t understand. It turns out that Israeli law is a bit different than Jewish law. After 12 weeks, parents are allowed to arrange for a burial privately, or they may elect to have the chevrah kadisha take care of the process.

It is important to mention that there is much controversy over the way this law is implemented and the information that is available to parents after a loss. It goes without saying that I am describing my own experience. Every woman who has been through this has her own impressions and criticism.

In that moment, without my husband by my side and starting to feel the effects of the anesthetic that would soon put me to sleep, I answered the only way that I could have: the chevra kadisha would arrange the burial. A year later, I’m still secure that I made the right decision for me.

They say when a pregnancy ends a woman loses a piece of herself. This has been the case for me even with my pregnancies that brought me my two beautiful children; in the days and weeks following their births I felt a bit empty inside, not just the relief of no longer carrying around a few extra kilo, but also that a piece of me had departed. I see that piece in my daughter’s smile and my son’s eyes. What was once part of me is now out there in the world. When a pregnancy does not end with a live baby, losing this piece of yourself is incredibly difficult. Months later I felt this loss, but I also began to feel that he was missing.  That is to say, the chevrah kadisha had buried him and I realized that I did not know where. He was missing.

To be clear, I did not need to know about the exact plot and I was not looking to visit. I just needed a bit more information about the general area. It so happens that this information is not easily obtained. I asked and googled but it’s not widely known. Not knowing began to haunt me, and so I turned to a friend, who turned to another mutual friend who had connections with the chevrah kadisha and he found out that there is a section of the main cemetery in Jerusalem where fetuses are buried. Knowing this information gave me a measure of peace, because someone had taken care of him after he left my body.

I did not have the emotional resources to deal with the burial and I think part of my healing process has been allowing myself to let him go. Permitting someone else to do what I could not, was part of accepting the loss. At the same time, I am grateful that his remains were buried because it is an acknowledgement that he was. Make no mistake, I knew and know that he had some type of presence in this world, if only through me. From the moment that I learned that he was growing in my body, I stopped drinking caffeine, eating sushi and stumbled through the nausea that accompanies me from about week six well into the second trimester of pregnancy. I felt my stomach harden and knew that in a couple of weeks I would need different pants and eagerly awaited his first kicks. However, all of these are the things that I knew and experienced, but in burying him it felt like the chevrah kadisha was recognizing what I already knew to be true.

It can feel very lonely grieving a lost pregnancy. Many people might not have known that there was supposed to be a baby. It’s difficult to grieve something that didn’t quite exist. The reasons are endless and unique to each person’s experience. Although I was not there, the act of burying the fetus “validated” my grief. While I am able to articulate my gratitude, I have no doubt that it was a Chesed Shel Emet.

IVF Unicorn

It has been forever. There is so much that I had meant and still intend to do with this blog: I want to add resources and information about fertility treatments in Israel, share some more our story and allow it grow as source of support for women and couples dealing with infertility. If only my day had I few extra hours, sigh….

Despite all the various things demanding my time and attention I felt that this story was one that needed to be shared. I need to take you back to November 2014, I was starting my tenth week of pregnancy after 2 1/2 years in treatment. We were meeting with the doctor and he was writing up our release papers from the clinic- I could hardly believe that we were saying goodbye. Peace out IVF, we were graduating.
“We’ll see you in a couple of years,” I said.
“Maybe, you won’t need me,” he replied.

I didn’t think much of it at the time, probably shrugged and guessed it was possible. I was so thrilled that we were finally in a pregnancy that seemed to be sticking I almost forgot how hard the process had been. As walked out, I felt certain that getting there was worth every part of the difficult journey and that I would repeat it in a second. This certainty accompanied me throughout the pregnancy and well into my first weeks of motherhood. I was elated to be  holding my daughter and I knew that I wanted another one. The sooner the better. Now, right now.

As is often case with things like emotions, and oh hormones, everything soon changed. With every milestone she hit, there was a slight pull at my heart, a sinking fear, that if I did indeed want to have another child it would mean returning to the clinic and once again subjecting myself to all that was involved in those treatments. That’s when I started to think twice. As my daughter grew to be a toddler, started walking and demanded way more attention, I could not imagine carving out the emotional or physical strength that IVF would demand. Obviously, people do it, but I could not figure out  how to make it work. On the other hand, I am 38 years old.

All this came with people making comments like, “maybe this time you won’t need IVF,”  or “maybe it will just happen.” Yeah, maybe. For the most part I had to ignore these comments, because they were more than unhelpful. I felt anxious,  and stressed. I yearned for a different situation that was entirely out of my control.  We did a few ultrasounds after the pregnancy and not much had changed: ovarian cysts, fibroids and all.

In a not too surprising turn of events, my doctor’s attitude had changed since our last encounter. When I met with him this past July and expressed my ambivalence about returning to treatments, he cautioned me not to wait to long making a decision. “One day you’ll want another one, a sibling for your daughter,” he predicted, “the chances were not high that you would get pregnant in your fourth round of IVF, you got lucky. It gets much harder as you grow older.”  Hey, what happened to “maybe you won’t need me next time?”

Turns out, he should  have stuck with his initial assessment, because about a month after leaving his office I was “spontaneously pregnant”- that’s what they call it when there is no medical intervention.

When I told a friend who had gone through IVF and was pregnant with her first, she referred to me as an “IVF unicorn,” you hear about them, but nobody actually knows one. Who knows how or why it worked this time? I have my theories and the internet will confirm all of them. It’s a miracle.

I’m sharing this story for a few reasons. Some people may be comforted by this story; doctors don’t have all the answers. Sometimes things just happen because they do. I always want to offer people a glimpse into my feelings as we dealt with the questions of how or if we would have another child. For those facing infertility at any stage- 1st, 2nd or 5th child- it is always a mix of emotions and an incomprehensible challenge. There is not one way that works for every person, nor any guarantee, but you didn’t need me to tell you that. If  you know someone going through this process, think before you speak, you never know how you will be heard. If you are in it now, I’m telling you that you are not alone, I know because I’m right there with you.

Sometimes the Wait is too Long

Part of the difficulty with infertility is that you don’t know when it will end. You hope and you envision the moment that you hold your child in your hands, but there is no crystal ball with the answer. As you wait you know that other members of your family are waiting hoping  and praying along with you. It is even more difficult when distance makes for the occasional visit and then the treatments prevent you from traveling when you would otherwise hop on a plane.

Unfortunately, sometimes they don’t live to see your dreams realized. Over the past year, Tommy’s Grandfather and now my Bubbe both passed away. They were both remarkable in their own ways.

The following is what I wrote to be shared at her funeral:

A few years before I moved to Israel I took a short road trip with Bubbe. We went to one of her favorite places, Atlantic City, I was the driver.  Now this was before the days of GPS and there was a mistake in my written directions and so we arrived four hours after leaving Philadelphia. I was frustrated at myself for ruining the trip.  She knew better, we spent most of the day in the car there and back talking about life and trading jokes. Soon after I received  a birthday card from her, she wrote”I enjoyed spending time with you. You are a terrific driver.”
Over the years, I learned many things from Bubbe, as a child I quickly discovered the value of bargain at the supermarket and  the importance of making certain that you were not over charged at the cashier- a refund of 35 cents was worth a 10 minute wait at the customer service counter.
As I got older I discovered Bubbe’s patient wisdom and confidence that things have a way of working out. “Toby, there’s a lid for every pot!” she’d tell me. It’s not that she brushed off the challenges, she just had a firm belief that things come together as and when they should. Eventually, you reach Atlantic City just make sure you enjoyed the ride.
As can be expected, it was not easy to live so far apart and remain up to date on each other’s lives. We bridged the distance through letters, phone calls and occasional visits- she made three trips to Israel since I made Aliyah and danced at my wedding at 90-years-young. Amazingly,I never felt apart from her and always knew she was a phone call away, each time I’d call she’d excitedly greet me “Tobila! How are you?”.
Last year I received a Birthday card from her that sums it all up:
“I know this idea may seem baffling and new,
but know what? Your Grandma’s ‘been there, done that,’ too.
So when your young life isn’t going as planned,
Talk to your grandma- She’ll sure understand. She”s got lots of love and good counsel to give. She’ll be on your side for as long as you live.
She wrote at the bottom: “Keep up the good life, with that special guy.”
 Everyone who knew and loved her, knows that Bubbe was one- of-a-kind. She was the matriarch of our family. Her children, grandchildren and great-grandchildren will each take with them a piece of her wisdom, patience, humor and special energy.  יהי זכרה ברוך- May her memory be a blessing.

Lessons of Another Year

Way back in June I had planned to spend my summer blogging away. I wanted to share lots of anecdotes and thoughts with you all about our experiences. It all remains on my to-do list because this summer the war, my freelance work at The JerusalemBlueprint and visits from many friends and family members left me with little time to keep up with writing here. Guess it will have to wait until next year.

I could not let the new year pass without sharing something, but it will not begin to compare with what I wrote last year. Though last year is where I want to start as it’s been a year, nearly two, since we first began IVF.  I’ve stopped counting how long ago we started to trying to conceive. It goes without saying that all of this has influenced nearly every aspect of our lives both as individuals and as a couple.

Here is a short list of observations and lessons from the past year:

Communication: I have found our experience with infertility to be a mixed blessing of sorts, because as difficult as it has been, through the process Tommy and I learned communicate with one another in a way that I’m not sure we could have done otherwise. We have learned how to talk about complicated, emotional, and difficult issues and trust that the other person will listen. Most important we have learned to love right through all the trials and I feel privileged to have him as my partner.

Control: I’ve always been a bit of a klutz- Tommy calls me “tipsy Toby”- so leave it to me to end up cutting my head open and needing stitches while on complete bed rest. You’d think it be easy enough to just stay in bed and take it easy, but somehow I manage to turn that into an accident. It all goes to show you, how little control we have over the things that we have to deal with in life. Arriving at  the realization that many things are out of my hands ceased to be scary and instead I found it to be both refreshing and liberating.

Change: While the laws of inertia make it easy to stay the course, at times it is important to pause and consider a different approach, or maybe even a slightly different goal. Change does not always come easy and like most things it is both a risk and a process. I have discovered both the challenges and the benefits of change.

Hope: This word is the scariest word for a person dealing with infertility. When should you be hopeful? How do you temper your hope with realistic expectations? These questions apply to many different situations and over the past few days I have heard people express the wish that the upcoming year will be better than the previous.This tricky emotion allows us to push forward and believe that with a bit of effort the future can hold something better. I’ve learned that I do not need to ignore or qualify this feeling but rather embracing my hope helps me persevere through the challenges.

I enter this year taking all that I have learned with me and excited for the new lessons that lie ahead.

A Minor Nuisance

Bureaucracy, emotions, current events,your body and even the weather may become obstacles when going  through fertility treatments. If only we could anticipate and control all those “things” that come up in life and prevent us from getting the job done. Two years of treatments have taught me that some things are beyond my control and that realization is often a relief.

After both consulting with a new doctor and some deliberation, we decided to move forward with a new round of IVF. Everyone seemed to be telling us the same thing, it just takes time and keep at it. Even Dr. Google’s resource of choice concurred: IVF is effective in dealing infertility related to endometriosis. Still, I wanted to be sure that we had weighed all our options and I had heard good things about the Center for the Treatment of Endometriosis  at Tel Hashomer hospital. If anyone was going to have “the magic answer” it would be them.

Early this morning I left our apartment and thanks to the brilliant programmers at moovit I made it to the hospital complex(though finding the clinic within the hospital complex is an entirely different challenge). As my bus pulled into the hospital’s entrance my phone rang. My appointment had been cancelled; the doctor who I was scheduled to see would be attending the funeral of one of the soldiers who was killed in Gaza.

Given that I had traveled in from Jerusalem, I asked if I could see another doctor,but the secretary confirmed that there was no one else available. I hung up the phone mildly annoyed – another delay would cost us this month. Thank you Hamas. Then I took pause to comprehend the situation. The violence over the past few weeks has killed hundreds of people: civilians and soldiers. Living in Jerusalem, I feel safe and can only pray that we find a way out of this violent and painful moment. I am extremely lucky and incredibly thankful. Life is not lived in a vacuum and so it goes with fertility treatment: they move forward or are called to stop by both the mundane and the exceptional events.

On my way back to Jerusalem I picked up some supplies to donate to soldiers who are risking their lives. In the scheme of things, schlepping to Tel Hashomer and back was only a minor nuisance.


Returning to the Routine

This time is different, or at least I am experiencing in a new way. Over the past 13 years I’ve been through a number of cycles of violence between Israel and its neighbors. I don’t spend too much energy debating how it should be handled because I don’t have a good answer. Like most Israelis I do my best to continue with my life and pray that an enduring and peaceful resolution can be reached.

As a resident of Jerusalem, my daily routine continues: I continue to work and socialize almost as usual. Yes, I make sure that I know about safety precautions and the nearest bomb shelters when I am away from my home, but for the most part my life continues. When I hear a siren indicating that rockets have been launched in the direction of Jerusalem, I make my way to the shelter and wait until I can safely return to whatever I had previously been doing. I’m not suggesting that it is easy and certainly not ideal, but I, like many Israelis, continue to continue. People still go out to pubs and events – though a few larger events have been postponed or canceled due to safety concerns – there are still tourists on their summer vacations, and the World Cup is part of daily conversations. There is a real effort placed on maintaining as much of a normal routine as possible.

My routine involves IVF treatments and those continue as before but they may be my biggest challenge in dealing with this outbreak of violence. My Facebook feed is full of comments by parents forced to wake their sleeping children in the middle of the night to bring them to the safety of a bomb shelter. There is a part of me that is grateful to have been spared the fear of parent who finds themselves apart from their child at the sound of a siren. Still, the fear and violence affects my experience in fertility treatments. I fear the day that when I have to rush my child to safety.

Optimism and hope are what push me forward through the hardships of IVF. It pushes me through the stress of the treatments and allows me to see beyond my immediate situation. Unfortunately, it is precisely these two feelings that are most difficult maintain while standing in a bomb shelter. I do hope to bring a child into the world, but I’m concerned about the world that he or she would enter. Optimism is hard to maintain given the daily news cycle. Devoting significant energy to creating life seems trivial amidst the violence.

I return to the IVF clinic accompanied by two prayers: that this IVF cycle will be met with success and that my children will inherit a world where peace is routine.

For My Birthday

People who know me well have probably picked up on two things: I love to celebrate my birthday and I seek meaning in the numbers associated with each year. Both became more pronounced when I realized that anywhere outside the United States my date of birth is written 5/6/78 – I’ve yet to get over how unique that is and it makes me feel pretty cool. I went a bit overboard in the year 2012, on my 34th birthday, I insisted that a toast be made at both 9:00am and 9:00pm, thereby associating and celebrating all the single digits with related to my birthday.

The Hebrew language makes these associations all the more interesting because each Hebrew letter has a numerical value and adding significance to the birthday. Many people know that 18, Chet and Yud,  spell chai meaning life.  I know some of you believe this to be nonsense but I have observed these numbers playing out in my life. Take for example the number 28, its Hebrew letter equivalent is Kaf and Chet,  which form koach (strength); the year after that birthday was difficult and I needed a good amount of strength to push through. My favorite is 32, Lamed and Bet, lev (heart). Tommy and I met when he was 32 and I was 32 when we married. Maybe this is all about self-fulfilling prophecies, but either way I enjoy it.

All this brings me to this year, today, my 36th birthday- 18 is life and so 36 is double life. No, that is not a plea for twins and yes, I do know the risks of playing around with fertility drugs. Usually my birthday celebrations are quite standard: food, cake, wine …. This year, however, we’ll be doing things a bit differently as Tommy and I will spend a good portion of today trying to get pregnant. This is all absent of any romance you might imagine because this process involves: fasting, an IV, anesthesia, a couple of doctors, quite a few nurses, bed rest and mostly patience. It was not the celebration that I  had envisioned, but my body calls the shots on this one.

Tommy and I celebrated a few days early and I may arrange a belated birthday related event- with daily visits to the fertility clinic this past week I have  not found the head space or energy to put it together. For now, I am just focusing on today, this moment and all the hope and potential it holds.


*******Note to readers: Normally, my posts describe events that have already transpired and I don’t anticipate that changing moving forward. I felt a need to share colliding of events because they could not be ignored. This is not an invitation to ask if I am pregnant or if it worked. I will let you all know, at some point. For now send good vibes and happy thoughts.