Tuesday, July 31, 2018

Outside looking in

Yesterday, upon arriving home, I ran into a neighbor who was coming home with her daughter following a doctor's visit. Over the past month, this young woman who is in her early 20s has gone from being completely mobile to requiring a walker to get around. When originally asked, there were snippets about an ovarian cyst that needed to be resolved. Yesterday, it became clear a lot more was going on.

In a fit of despair, I overstepped and reached out to Moon for help. Given her training as a nurse practitioner specializing in women's health, I asked if she could talk. Then I walked over to the neighbors apartment, knocked on the door and rapidly explained that not only was I extremely worried about her, but that I had someone she could chat with to get a second opinion.

The long and the short of it is that as a young woman, she's already lost one ovary, her other ovary has a large cyst and there are two additional large masses in her pelvic region. She's in a substantial amount of pain and yet fears going to the ER as she doesn't want to lose her remaining ovary. All the while the doctors telling her they cannot understand why she would be in the amount of pain she's in based on what they are seeing.

All this made me want to cry. Here's someone who shouldn't even be having to think about her fertility and is choosing pain in an attempt to preserve it. Here are doctors who are failing her (her regular OB/GYN is apparently on vacation, leaving her no one else to see over the course of 2 weeks) and she's being minimized for something that is life altering. Though our stories are different, the emotions involved are extremely familiar.

I feel helpless in all of this. To scream about how if her heart was failing how differently the treatment plan would be. How what's she's facing isn't a trivial matter. And yet I know that even if I frighten her physicians, nothing will change. Just as no part of what I went through changed any part of the current system. Fertility is still seen as this taboo element that society then uses as a moral measurement, not a something that qualifies as life-threatening or altering.

Friday is this young woman's appointment; Friday is also my appointment with the Rheumatologist to begin exploring my own lingering fertility issues. All with me not expecting much from either situation.

Monday, July 30, 2018

#MicroblogMondays: Standing hand-in-hand


Almost 9 years ago, Grey and I made a trip to Washington DC to help Lucas and Moon with their almost 3 month old twins. Over the course of those 10 days, we would not only bond with the babies, but Grey and I would come to a tearful agreement that it was time to expand our own family.

Little did we know what would lie ahead; the heartache, the pain, the loss and the darkness all caused by loss and infertility. The idea of something so simple that would become so tainted and a myth shattered with the reality that far too many face.

4 years later, that chapter would end when Maddy and Teddy came into the world. Though there was much celebration, the healing that needed to happen would take almost another 5 years. 

On Sunday, Grey, Teddy, Maddy and I made our way down to the Monterey Bay Aquarium to spend the day with Lucas, Moon and the cousins to celebrate Teddy and Maddy's 5th birthday. And in that space, there was a moment where all those babies we held and cared for were hand-in-hand, guiding one another through the exhibits and sharing their excitement.

The truth is this moment didn't make infertility right or worthwhile. All the pain and loss of those that died in my womb cannot be justified by this sight, but seeing them all hand-in-hand ushered in more healing to reenforce the scar-tissue to those very deep wounds. Just a simple reminder that there is always a reason to fight towards the light.

Thursday, July 26, 2018

A Name Ceremony

Years ago I read somewhere about a naming ceremony for children around their 5th birthday. For the life of me I cannot remember were I first encountered this (I want to say it's from the !Kung, but have no references for this), but the tradition came from a culture where child mortality was high and the community had established age 5 as a milestone.

For the past few years, I've been subconsciously holding onto this milestone. Following infertility, a high-risk pregnancy that ended with the Beats arriving at 32 weeks and then a month-long NICU stay, I got it into my heart that this milestone would be important.

Tomorrow the Beats turn 5. 5 years since they were pulled from my failing body and brought into the world. 5 years of watching them demand to live and live their own lives. And over the past 5 years, watching them define for everyone in their lives who they are as separate individuals.

So it only seems fitting to mark this milestone for them by doing a name-change ceremony of sorts in this space. Because though Sugar Beat was a name of endearment given during a moment where Grey and I were grasping for hope, it's also a name that they have both outgrown.

Prior to the Beats arriving, Grey and I spent a far amount of time arguing about discussing names for these two. While there was a lot of back and forth about their first names, we wanted their middle names to be reflective for the journey it took to bring them into the world. What neither of us could anticipate is how well their middle names suit them, reflecting their personalities and mannerisms.

She-Beat's middle name is from that night Grey and I stood outside the IVF lab where we left a single madeleine cookie for our embryos that were actively growing inside those incubators. "Mads" and "Maddy" have become names we use affectionately when interacting with her, but we also get questions about our little "french girl" given her mannerisms and physical characteristics.

He-Beat's middle name is in honor of the clinic where our embryos were conceived. Located on Roosevelt Way in Seattle, Grey and I had a lot of back-and-forth about which former President's given name we would use. A coin-toss resulted in "Theodore" and given his energy and competitiveness, he seems like a modern-day Teddy in many respects.

Thus, in honor of their 5th birthday, I'm retiring "He-Beat" and "She-Beat," renaming them for this space as Maddy and Teddy. Because though these two shared a petri dish and were womb-mates, they are unique individuals who remind me each day that they are not only have their own paths but their own ways of traveling down them.

Wednesday, July 25, 2018

IVF turns 40

40 years ago today, the first IVF baby was born. This seemingly simple event marked the beginning of an industry, providing a medical means for couples would were struggling to expand their families. To date, more people than ever are using IVF to resolve infertility and the technology resulted in Robert Edwards winning the Nobel Prize.

Yet 40 years later, the truths about IVF are only starting to come to light. In the United States, IVF is still generally not covered by insurance, leaving most pursing this route to drain financial savings (if they have any) or take on massive amounts of debt in the hopes of becoming pregnant. Adding to this is the fact that IVF success rates are actually pretty low, with a recommendation of multiple rounds in order to optimize a positive outcome. Then there's the simple fact that IVF is being used as a fix-all to treat anyone with a diagnosis of infertility, even though the procedure was developed specifically for those with getting sperm to connect with egg. It's the equivalent of telling someone with heart failure and another person with kidney failure that they need to undergo the exact same operation and assuming the same outcome.

Fertility treatments are a mixed bag. For those undergoing them, there's a gratefulness that exists to even be given a shot at parenting. Speaking from experience, when those around me were clueless how to offer support and often fell back on platitudes, the REs were the ones I felt were actively working with me to resolve. To date, I have no regrets about the decisions we made, though I also am very aware that both Grey and I were armed with a lot more scientific knowledge than most people will ever have.

Despite the good, there was a lot of bad that happened. The utter lack of emotional support by the clinicians, a general offering of "bad luck" for explanations of why I was miscarrying or IVF rounds were failing and a price-tag that left us in crippling debt all left me not only with a severe case of PTSD, but also a realization that this largely unregulated industry was focused more on profits than on patient well-being. And that we have a long journey ahead of us to rectify that.

Recently a group of amazing bloggers and advocates took to social media to bring these truths to light. They've each talked candidly about their experiences and how they've been impacted by the myth that IVF is the cure for infertility. Just as the dark-side of CRISPR has hit the news media, so too does a similar spotlight need to focused on IVF. And the conversation needs to be brought to the forefront, making the general public aware that treatment is far from a guarantee and is one that is often trauma inducing.

Happy birthday Louise Brown. Your birth has changed the world. May it now mark this anniversary by ushering in much needed change again.

Tuesday, July 24, 2018

The American lie

Yesterday morning, as I walked the couple of blocks between the train station and my office, I found a woman curled up on a blanket on the corner of an intersection. Barefoot, the wear and tear on her feet was visible and all her belongings were inside a brown paper bag she kept close to her head. All the while traffic rushing by a few feet from her head.

Early that day, while on the train, I saw the vast homeless camp that was set up along the rails. Composed of scrap wood, metal and cloth and monitored by a single police officer. 

Later in the day I would have a woman around my age approach me as I was exiting the grocery store after finishing my commute back to the other side of the bay. With tears in her eyes, she would ask if I could spare any food for herself and her child, leaving me with half my original groceries.

Finally there was the high school age girl who was begging on the train, who left a package of tissues and a note next to me on the train. 
Hi. I have two brothers. My mom is sick and I have no father or job. If you can please help me for food or for rent. Or if you can any gift card. Thank you and God Bless You!
Part of me would like to tell you what an atypical day yesterday was. How I'm not collecting stories about begging incidents and sights that make my heart hurt. How I don't regularly lose my lunch to someone I find on the street who clearly hasn't been eating on a regular basis. Or that my shopping trips aren't regularly interrupted by someone looking for spare change or a few items of food.

The other part of me no longer cares if those reading this find it hard. Because the truth is that these sights I've been witnessing aren't new; they are just getting more common. 

But the root of this, a very real truth that many still don't like to hear, is how Grey and I came dangerously close to being among this ranks. And we were ignored or silenced because it made those around us uncomfortable. How often we are blamed for the unemployment both of us faced and that the normal equation used to justify the judgement (two PhDs in STEM careers with extensive training who have very little familial support and survived infertility) often leaves those who want an easy out tripped up and uncomfortable.

The United States is a misclassified country. While so many refer to it as a land of opportunity, the reality is we do not have a social safety net to help those living in poverty. It's seen as a moral sin to be living in the lower class, with platitudes being shared among those who have financial security that "education" or "work-ethic" will somehow rectify. And yet the truth is those who are secure have are part of a privileged group that is actually rapidly eroding. An article in the Atlantic about the Birth of the New American Aristocracy illustrates that nicely, sounding a wake-up call to the top 10% of Americans. The truth is we are at a turning point in history where poverty and homelessness are literally on peoples' doorsteps, making it so we can no longer afford to ignore it without dire consequences.

For my part, I'm trying. From a conversation with a man about where to find a local shelter group to buying breakfast for a teen who looks like she's new to the streets. Some days the best I can offer is looking them in the eyes and offering a smile and nod. All the while knowing that it's not nearly enough and it's we're long overdue for communities to start embracing these members, weaving the nets of security and help that are so desperately needed.

Because the lie that we've been telling anyone living in poverty is it's just a matter of doing well in school and not buying lattes is a complete myth. And we need to stop spreading it.

Monday, July 23, 2018

#MicroblogMondays: Redwood Cathedral


Sunday before last, Grey, the Beats and I met up with Rain and her boys, Cadet and Pumpkin, to take a train ride through a Redwood forest. It's the second time Rain and I have seen one another in real life and I can tell you without a shadow of a doubt how much more amazing she is in person. Most gratifying was watching Cadet and Pumpkin play with the Beats. Two different paths of resolving infertility dancing in front of survivors was a bit surreal.

At the end of the train ride to the top of the mountain, we passed a small grove of Redwood trees. Walking back to this grove investigate, Grey and I found ourselves overwhelmed at the sight of these creatures. The smell, the feel of the wetness in the air and the sight of this Redwood Cathedral was enough to bring tears to my eyes. 

Thursday, July 12, 2018

Someone else's bad day

A year ago, I walked into my supervisor's office knowing full well that the conversation would not be a good one. The month prior, as my colleagues around me received news about promotions or transitions, my requests for meetings had been met with silence. It was when one of my coworkers texted me about an urgent coffee meeting, alerting me that I no longer had access to an upcoming course's class website that I connected the dots about my contract not being renewed. The meeting with my supervisor confirmed my fears.

Over the next few months, I would learn how badly my situation was being handled, with those higher up in admin confessing that all of this was not only handled poorly but in a manner that made them worried about a potential lawsuit. On my end, I was determined to exit with grace and as many good reviews as possible, much to the shock of many of the professors and administrators I worked with (hence some of the candid confessions). It was hard to be the pariah walking those hallways, fighting to complete my work to a standard I would be proud of when others were actively avoiding me. But given I was the one with the paper trail for cause, there wasn't much that could be done as I prepared for unemployment.

This past week has been a hard one because today is the day that my new place of employment is firing one of our team members. The situation is entirely different as there is SO MUCH documentation about this employee, including action plans for discipline and documentation of clear goals/expectations not being met. Basically an open-and-shut case for HR. Yet it's been damn hard given my own experience and mistreatment, leaving me wanting to curl up into a small ball as even though it is the right decision for this organization; it's just going to suck.

Last night Grey and I had a long conversation about all of this, tying in with some news on his end. While in Boston, he had lunch with one of his former supervisors (who we call rockstar midwest guy) and learned about the drastic changes that happened when he announced he was quitting after they failed to hire him on permanently due to one asshole supervisor. That basically everything on the project of this asshole supervisor continued to fail, with her blaming others and firing people to cover her butt. That when the team finally decided to take Grey's advice and implement the plan from rockstar midwest guy that everything not only worked, but worked better than anyone anticipated. That rockstar midwest guy is also successfully shopping another device Grey created with him and word is getting around. And that finally the other member of this team was permanently hired after Grey's supervisors freaked out and declared they couldn't loss anymore people from a team that was getting things done. That it basically took him leaving for all this amazing change to happen.

Reflecting on all of this last night, I remembered that too often people stay in situations that aren't working. Whether it's a job, a career trek, a relationship or even roads to family expansion, often we stay because the unknown terrifies us and we are determined to find a way to overcome. But sometimes, the best solution is to cut our losses or be kicked out of the nest. The freedom from having the choice in continuing down a toxic path allows us to find new roads and grow in ways that can lead to opportunities and experiences we never imaged.

A year ago, I was miserable. I was teaching a summer course and gearing up to teach another class all in a manner that I deeply believe doesn't work. I didn't see a path forward and was going through the motions under the guise that it was just a matter of getting others to see my viewpoints. The moment I learned my contract wasn't going to be renewed, I started taking chances that I didn't consider before, giving me connections and opportunities that have lead me to this current position that basically was created while I was in the interview for another one.

Looking at my team now, we have so much we need to do before the school year starts. Reagents to prepare, curriculum to update, an event to finish planning not to mention social media to get off the ground. All of which has been stalled by this current person and creating a lot of frustration, meaning it's not a good fit. But all of it is something that I am excited to be a part of as it meets a goal and mission I believe in and have long sought. And it's a team I not only enjoy working with but also believe has a shared mindset.

Today is going to be someone else's bad day. There will be tears, anxiety, anger and even some hatred. But my hope is that this low is the beginning of a new chapter for this person, leading them to things they could not have imagined. Just as it was for me.

Wednesday, July 11, 2018

All the things

It's only Wednesday. That's the only thing I could think of while laying in bed this morning, willing myself to get up and prepared for the day. It's only Wednesday and yet the amount of things that have happened make me want to crawl back under the covers.

Like the fact that Grey is currently back in Boston for work, doing a full-week of training for a new product from his company. The emotions surrounding having him literally doors away from former colleagues and walking the pavement where so much crap happened has been a lot for both of us.

There's also the doctor's visit the Beats had yesterday that resulted in mixed news. She-Beat's hearing is excellent and her surgery from May has resulted in her making huge gains in speech, behavior and healing. She graduated from ENT yesterday. All while we learned that He-Beat hasn't healed from the ear tube removal surgery, resulting in him having some hearing loss and the fact that he is struggling more with behavior. Basically the surgery he is having in September for resolving sleep apnea is also needed to put new patches on the holes in his ear drums, making it from needed to urgently needed.

Then there's this new lyric video from Death Cab for Cutie that made me cry. I know the intersection Ben Gibbard is standing in and there are so many memories from walking those streets, including the costume shop where Grey rented his tuxedo for our wedding. All being destroyed for condos. It's hard not to feel lost when something that was so loved is coming to ruin around you, changing into something else. Death Cab says it better than I ever could.

There's also been drama at work, consisting of a 3 hour meeting on Monday where we discussed potentially letting go of someone on the team. I was in a complete panic for the rest of the night, even though it's not me that under this lens, because this decision directly impacts someone's life and I know intimately what that impact can look like.

Finally, there's the fact the Beats are turning 5 years old at the end of the month. Both extremely excited about the prospect of all that comes with this milestone. Flipping through old photos, I've managed to trigger myself a few times from memories of NICU. How insanely fucking hard that experience was, feeling like a failure to both of them and spending so many time since trying to make up for that failure. Yet somehow, they are thriving; a testament to each of them and how amazing they both are. 

In short all the things and all the feels that come with those things.

And it's only Wednesday.

Monday, July 9, 2018

Thursday, July 5, 2018

Beginning of the bike chapter

For the past 3 years, Grey and I have talked about bikes for the Beats. Given how important biking is to Grey (and I enjoy it myself), this activity seemed like given when we started talking about expanding our family. The unforeseen hurdles we faced, though, stopped us dead in our tracks for proceeding with getting these two their own set of wheels. First being the financial expense, with recommended bikes running close to $400 each, combined with an issue of storage not to mention an area to practice. Despite our desire, we were struggling just to get Grey back on his bike making this goal for the Beats seem impossible.

Last month, that started to change. First with moving to the Bay Area, where bike culture borders on cult-like, we easily found quality bike shops that weren’t limited to the upper-middle class. With a lot of pushing and nagging reassurance and promise to make time, Grey finally got his bike out of the moving box it's been in for the past 3 years, got it tuned up and found a trail system he enjoys.

But the ultimate push came with seeing both Beats standing on their tip-toes, watching the neighborhood kids through their bedroom windows as they would zip along the green space on their bikes. The scene was like a thousand knives to my heart, with me hitting a tipping point this past weekend.

On Tuesday, following a morning of curriculum evaluation, I ventured across town to an organization called HopeBIKES, an organization that not only refurbishes used bikes but also offers employment and training to those with developmental disabilities. Upon walking in the door, I spotted exactly what I was looking for and within 30 minutes I was heading home with the below and some helmets, total damage being ~$140, complete with a plan for how we would be spending our Fourth of July holiday.

None of this has been perfect. Grey has been insanely busy with work, getting ready for 3 weeks of extensive travel for a new product his company is launching, meaning not only has he not been able to be involved with this process, but he also had zero clue what I was doing Tuesday. In addition, the original plan of removing the pedals, turning these into balance bikes, was thwarted when I learned that the seats couldn't be lowered enough for the Beats to get their feet flat on the ground. This meant installing training wheels for their first day of riding (the ultimate failure for anyone who subscribes to bike culture). And space is still an issue, with it becoming apparent that the 4 moving boxes, including the one containing my bike, in the living room I've been ignoring can't be ignored any longer.

Despite the pain and fighting from training wheel installation, yesterday was spent with two almost 5 year olds pedaling around the park, insisting on more and more laps even though it was getting late. And at the end of the day, when they saw the older kids biking around the green space, they talked excitedly about joining in instead of looking on with longing.

To be determined if any of this is considered a win. But suddenly one dream of getting these two on bike trails doesn't seem so far away.

Tuesday, July 3, 2018

The outsiders

On Saturday, in an effort to beat the heat, Grey and I contacted our apartment complex manager and asked for access to the pool. The property has purchased by the current management company a little over a year ago, resulting in everything being renovated from the interiors of each unit to the grounds and the common areas. Due to this the pools haven't been available until recently, and with temperatures reach to the 90s Fahrenheit (30s Celsius) access has been almost a requirement.

For a little over an hour we had the pool to ourselves, with the Beats splashing around, Grey and me getting in a couple of laps and all of us cooling off. But during that time, I noticed that most of the neighbor kids were peeking out at us, looking at this family they both didn't know and didn't trust.

It's been a weird experience to move into a complex that is actively undergoing transition. Those moving in that look like working professionals do well with Grey and me, but winning over those that have resided here prior to new management has been a bit of a struggle. To date I am on friendly terms with at least two families that have resided here for close to 20 years, with them helping me relearn Spanish (English is their second language) and slowing coming to trust Grey and me. But other neighbors still see us as outsiders who are threatening their previous way of life. Between porch piracy (which we've now resolved with getting packages delivered to Grey's work), some minor vandalism (resolved by installing a security camera), some intrusion onto our designated parking spaces (resolved following asking people to move, which has left them dumbfounded) to simply using the green-space in the evenings, it's become clear that some here don't want us.

The hard thing about all of this is I get where they are coming from. Grey and I are part of a wave of change that is happening, marking a change in life for some of these residents. But what isn't talked about openly is that though we may be seen as the problem, the truth is those that are driving forces purposefully have remained removed and invisible. And they don't like it one bit when I draw attention to them.

The bee hive incident is something the neighbors still talk about, giving those that don't want us here pause. Apparently many have never seen such a rapid response from management to a situation that was impacting their homes and I'm starting to have some neighbors approach me with questions about other maintenance issues (like not having running water). In addition, due to my continued conversations with these two families, word is getting around about the work I do. To say there's curiosity is an understatement.

Given all of this, there's currently an element of frustration with home. Grey and I always intended this space to be transitional; a West Coast landing zone. That said, my new-found goal is to win a few more of my neighbors over, hopefully breaking some of the misconceptions about white Americans while opening the lines of communication. It's too important not to try.

Monday, July 2, 2018

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