Sunday, January 26, 2020

Tasting privileges

Two years ago, I had my very first night away from Maddy and Teddy. The trip is for an interview in the Bay Area with a small biotech company, which meant I had to fly solo with two 4-year-olds across the country before continuing on to my final destination. Flying first to Seattle, I spent the day helping Maddy and Teddy settle in with my aunt and uncle before packing a small carry on and disappearing at nap time. Upon arriving in the Bay Area, I would navigate the airport and then the city with my small bag before checking into my hotel and nose-diving into a King size bed. The whole time, I marveled at how amazingly wonderful it was to not only be on my own but doing so with the peace-of-mind that both kids were in excellent hands being safe, sound and well cared for. A luxury Grey and I don't normally have.

Since Maddy and Teddy arrived, I haven't spent more than 48 hours away from them. Part of this has been due to my different positions for work not requiring extensive travel, but another end is that up until very recently traveling without the kids hasn't been something we could do. Unlike others, we didn't have access to family who was close-by or anyone we trusted to leave Maddy and Teddy with. All of this has lead to an interesting "otherness" when around those who talk having family close-by or can afford live-in child care.

All of this has been on my brain this week as I both prepare to leave for a week-long meeting in Southern California and have been in negotiations with Moon about her and Lucas taking Maddy and Teddy for a few days. It wasn't that long ago that neither of these things were options, which leaves me in strange territory of juggling my anxiety over leaving my kids while also being acutely aware of what a privilege it is that this is suddenly an option.

Privilege is an odd thing, given that many are unaware of until their situation changes. Coming from the camp of the have-nots, it's always been interesting to transition into the world of having something and learning how to navigate it. Grey and I still get odd looks when I talk about our weekly "dates" to the grocery store or doing some errand sans Maddy and Teddy, yet these are times I still look forward to both to spend time with my partner but also to do so without having to wrangle two energetic children.

But what is also fascinating is hearing the arguments for those who try to justify their privileges. While in Boston, arguments for deserving were common, particularly when faced by others who had lost these same privileges. My former landlord was a great resource for this as she would bemoan the toils of having inherited 3 properties, all of which were requiring maintenance due to decades of neglect. But there were other examples too, all of which were cringe-inducing to the average observer, with arguments ranging from superior intelligence to superior lineage.

One hard reality I've faced starting in 2010 was that life is far from fair. There are those who can never seem to get out of their situation, forever doomed by misfortune, and there are others who have an infinite amount of safety nets. Living the reality that class and social ranking is very much alive today can be depressing, especially when it doesn't take much to level the playing field.

But equally interesting is a new realization I've been experiencing, which is that privilege can also be a toxic thing if in excessive amounts. In order to develop resilience, one must encounter hardship or challenge. Privilege in excess can stifle growth, leaving someone in a mentally and emotionally immature state.

And where it's particularly a shock is when that access changes. When someone who assumed something that was limited as normal and suddenly has to face the reality of the safety nets are retracted. I cannot begin to tell you the stories I have from students who weren't prepared, the mistakes they made that were ultimately more costly to them because of their lack of resilience and how painful it was to watch as they grappled with these challenges without the required toolkit.

As I prepare for my first solo work trip, there are so many things I'm grateful for. I'm grateful for having the babysitter we have, who can help Grey with kid and cat care. I'm grateful that family is in driving distance. I'm grateful that we finally have the structure in place to do this. And I'm realizing that I need to start trusting the structure; learning to ask for help instead of assuming it doesn't exist.

But I'm also sad that what I get isn't something that's more universal. Everyone has their share of hardships and burdens and I'm not naive at assuming the grass is greener on the other side, but it's the knowledge the positive impact so many would have simple from more equal access to many things in our world that are limited (childcare, healthcare, educational opportunities for advancement to name a few) is something that's hard to live with. That the privilege I've been tasting, though sweet, isn't something that should be restricted.

Friday, January 17, 2020

Coming full circle

Monday night marked the beginning of a new adventure. All initiated with one text. It had been a normal day, with me simply wanting to get the family settled so I could spend a night reading, but following seeing the message on my phone, everything shifted and I was trying to figure out how best to proceed; my mind racing as I was trying to make sense of what I was reading.

You see, the text was an apology from my sister. My younger sister whom I haven't spoken to in almost 9 years.


My sister and I have always had a complicated relationship. While I was the oldest, she was the baby of the family and the one my mom visibly favored. I could wax and wane about favoritism and all the damage it can do to siblings, but needless to say things were complicated and hard. I loved my brother and sister and yet didn't know how to bond with them as I had a similar relationship with my mother.

Things only got harder as we got older, with my sister and I running in very different circles: she was the pretty, popular social butterfly while I was the fat but smart one who was hell-bent on getting away. Further on this was learning that my sister was sexually assaulted as a child by a neighbor boy, with her not remembering the assault until she was older. Thus there were years of dealing with someone who was angry and hostile, lashing out the most fiercely at the ones who were trying to support her.

The list is long. There's my wedding, where my sister threw a massive temper tantrum and I literally was wondering who would step in as my maid of honor. There were the trips home where we were supposed to spend time together that we instead spent with her leaving me in a crowd of strangers. There were the fights and the lashing out. All of it horrible, but I didn't know any other way.

Then infertility hit. And things started to become unbearable. The pain filled my body and soul in ways that few around me could understand. The day my sister told me she was pregnant due to failed birth control, right before I traveled home for my grandfather's funeral, my heart felt like it was ripped out of my chest. Though others told me that her pregnancy didn't mean that there would be less love, I immediately could see how much of an outsider I was and how any hope of support I had was about to evaporate.

Two months later, when I asked my sister to promise to not make another scene at my Ph.D. defense, she responded by accusing me of trying to harm her unborn child. At that moment, I knew that though I loved her, I couldn't continue having her in my life. And as the rest of my familial ties were cut, with my mother attempting to force me to temporarily adopt my cousin's son, I would find myself truly alone and cut off from all I knew.

It's the loneliest I've ever been in my life.

For 9 years, through infertility, the arrival of Maddy and Teddy, two cross country moves and redefining my career path, I've not ever tried to reestablish ties. My sister did reach out in 2015 after Grey and I initiated contact with my parents and my family learning about Maddy and Teddy's existence. But her message then was worded the same as past interactions, with her lamenting that Maddy and Teddy would never have the opportunity to know her (and me having the gut reaction of "hell no").

For 9 years, I've focused on moving forward, defining who I am not on my past but on how I chose to be in the world and how I was defining myself.

For 9 years, outside the occasional visit from my brother, I've been homeless; rootless. So many passed judgement because I did the most unholy of unholy things and cut contact with those who shared my blood.

This recent text from my sister was wholly different.
I am currenly seeing a very good theapist. We have been discussing Mom and Dad. I am finally understanding why you have made the choices you have made to distance yourself from them. I'm sorry I didn't see this earlier. I'm also sorry for the things I did to you. All these years later, I have a very different perspective I know apologizing doesn't make it better. I just wanted to let you know. I won't message you again.
With that text came the first glimmers of hope for rebuilding and forming bridges. As I responded and probed, asking questions and allowing her to talk, I knew Grey was seeing what I was from the other room on the iPad and quietly taking it all in.

There's a long road ahead and I'm not naive that any of this will be easy. As I told my sister, hurts can be healed, but rebuilding trust is something that takes time. In addition, there's so much more at stake as I think not only about Maddy, Teddy, and Grey, but also about my sister's family. None of it can be grown overnight. All that said, another gift infertility gave me is the ability to walk forward into the unknown despite being terrified of the potential of hurt. To take chances because though the pain of failing is very real, worse is never even have tried at all.

Because the hope is that after everything, my sister and I are ready to come full circle. Resetting the foundation so that the sins of our ancestors can die with us.

Sunday, January 12, 2020

Part of the problem

In January 2017, right after we learned the company Grey worked for was being sold and he would be unemployed for a second time, we joined friends on a trip to the science museum. The day was generally a good one, with the kids playing together and exploring all the exhibits (with near-misses in exhibits that should be marked "adults only"). Sitting down to lunch, we began to chat while navigating feeding three small children. It was then when the topic of Grey facing unemployment again we were asked: "So, where are you going on vacation?"

To this day, I'm still shocked by this question. It was both callous and apathetic given what Grey and I were facing with juggling supporting our family while managing a mountain of debt. But what hurts the most was that it illustrated how the couple sitting across from us was completely clueless that this wouldn't be an option for the average person. At that moment, the cracks in a friendship we had tried were revealed as being deep ravines and though Grey and I asked for space from them, trying to figure out a way to repair the hurt, the truth is we never found a way to bridge this gap.

This past week was a reminder of this one personal gap and how it's actually more widespread. Starting with a set of articles form the Chronicles of Higher Education about Higher Education's unfulfilled promise to lessen socioeconomic divides, I went down the rabbit hole reading about the barriers in mobility, having discussions within my professional network about how political moves have specifically been aimed at deepening this divide, and also revisiting past articles, such this one in the Atlantic about the Birth of the New American Aristocracy about how every aspect of our society and how the current structure is set up to promote only a select few - that the rhetoric we've all been fed about hard-work and equal opportunity is actually completely false as we've actually created a social structure that is poised to collapse on itself.

Adding to all of this was me witnessing all of this again first hand as I was summoned for jury duty. Riding the BART off-peak hours is a great way to witness what happens when people don't any hope that their lives can get better. From open drug use to witnessing begging and experiencing threats simply for riding the train, it's a bit traumatic. On top of this, I found myself having to revisit past trauma triggered by the juror selection questionnaire where I was asked whether I had ever been a victim of a violent crime, whether I had ever experienced threats to my person while on mass transit, whether I had ever been sued, and if any of this would inhibit my ability to be impartial as I listened to evidence about this case. The next day, in front of 80 strangers, I would be asked all these questions again and ultimately be excused from serving as I answered all these questions while visibly shaking.

As I've been working on recovering from this latest panic attack (and dealing with the shame from having to disclose all I did), I've been thinking a lot about the roles each of us has in the world and what happens to those who challenge others views of their place in the world. The truth is that though all of us are doing the best we can, most won't venture outside the comfort of the narrative they've been given. A big part of this is a primal response, given that questioning support networks and social roles can be extremely dangerous towards continuing to be accepted, but another part that so few want to admit is there comfort behind not challenging the narrative. The idea that we work hard for what we have is far more appealing than learning that those in positions of privilege really could never have failed and those supporting them are there solely because they were placed to be able to check off those boxes.

In short, it's been a rough week. And I frankly don't know what is going to come from all of it. But I do know that I'm tired of doing nothing and seeing things deteriorate. It's a matter of how to start pulling all the pieces together.

Tuesday, January 7, 2020

The next chapter

The image is still engrained in my mind. It was midnight on New Year's eve of 2010 and Grey and I were standing on the top balcony to our condo, toasting in the new decade. We were both excited for the future, as the stroke of midnight marked us officially venturing into actively trying to become pregnant and making plans for our careers in academic science. 

As fireworks were being set off around us, I suddenly noticed a dog sprint into the street. A young Golden Retriever who had somehow escaped the yard and will visibly upset by all the booming and smoke. My heart immediately collapsed into my chest as the dog rocketed down the street, heading straight for the downtown area of our neighborhood that was heavily trafficked and where we knew more noise awaited. 

There was nothing Grey or I could do but watch, knowing we were too high up to get down to the dog before it disappeared; knowing no one would hear us.

For the last decade, that scene with the dog has been an omen for all that was to come. Family building, which we naively believed would be easy, lead to an unexplained infertility diagnosis, fertility treatments and 3 years of pain that changed who I was and how I saw myself in the world. After Maddy and Teddy came home, we faced the city around us rapidly changing, forcing us to leave the place we had called home for almost 11 years as neither of us could find work. There was living in poverty, job loss, workplace abuse, and harassment leading both Grey and me to decide to leave academia entirely. And most recently has been the collapse of my health, with me spending the last 4 months battling gastrointestinal issues that no physician had an explanation for, only to be resolved through me pushing a working hypothesis that turned out to not only be right, but has now lead to me gathering a group of medical providers who are eager to dive into cutting edge medicine with me.

The summary of all of this is that a decade later, life looks entirely different from what Grey and I imagined that night. Like that Golden Retriever, everything we thought we knew and dreamed of sprinted off into traffic, only to be killed or terribly mangled over the last 10 years. But what is left isn't something to be sad about and those that meet us today actually see we are living what is considered a charmed life.

Instead of owning a condo in a neighborhood that was transitioning (and happens to now be a very desired place to live), we're renting a house with a nice yard in a quiet suburban town with an amazing school district.  

Instead of a career in academia, Grey and I are both working in biotech for a company that not only went public this past autumn but is setting the standard in the field for genomics and precision medicine. Grey is not only well-respected but is becoming well-known for his work. And though the transition was rougher for me, the feedback I've been getting on my performance has been very positive and their movement for expansion within my role. 

Both Maddy and Teddy continue to thrive, loving their school and their teachers. 

And as mentioned above, I figured out that the root of my chronic and acute hemorrhoids was linked to autoimmune disease, all resolved when I had my cooper IUD removed. A 2-week journey that ended up looking like a crude abortion after they couldn't find the strings, but within hours lead to pain relief and resulted in me not needing any surgery. 

All that said, life still has its hardships. My family is still largely absent from my life due to boundaries that were established and there are still days where life seems abnormally hard. The current trauma is watching Grey's sister beginning to navigate a divorce after her husband of 12 years announced he no longer wants to be married, hearing about the affairs he's actively engaging in that are hurt both her and her son. And there are all the memories of loss. Some scars, though healed, still ache.

2020 ushers in not only a new decade but the promise of a new chapter. Though I don't know what lies ahead, so far there haven't been any omens. Other than the overwhelming desire to sleep.

Sunday, October 13, 2019

Working hypothesis

I have a hypothesis that's been brewing for the past decade. Something that began to form while in the trenches of fertility treatments and I've been slowly probing for with each new physician appointment for establishing care or following a period of illness. For years, this hypothesis has been percolating in the mind, surfacing in moments for tweaking and adding supporting facts, but recent changes with my new position and combined health issues have brought it screaming to the forefront. Meaning it's time to share.

A few months ago, I came into possession of a new book by Matt Richtel titled "An Elegant Defense." For anyone that is science inclined but finds the jargon overwhelming, Mr. Richtel does a nice job of breaking down the history behind understanding the immune system and the role it plays in keeping us healthy. But the part that had me stopping to think were the stories of the patients Mr. Richtel interviewed, particularly the ones about two women who have autoimmune disorders, laying out the case for who their own bodies defenses were betraying them. And as I read their stories and all they had experienced, I couldn't help but notice the parallels for all I've been living with.

I'm currently in the middle of the worst hemorrhoid flare I've ever experienced. Hemorrhoids aren't a new thing for me, but 3 years ago mine were exacerbated to the level that surgery was first something my medical professionals were willing to consider. Despite this, due to continual warnings about how painful this surgery was, I didn't pursue surgery and have been in maintenance mode, using common techniques in order to get through flares. The problem is, my hemorrhoids don't behave the way most medical professionals commonly encounter, being triggered by changes in hormones (read they tend to crop up around my period) and me having extreme cases following a period of bodily stress or extreme illness. In short, I think they are immune-related, which hasn't been well received.

Last Monday, I hit the wall with pain and after vomiting due to how extreme it was, I made an appointment to see someone at my PCPs office. Unable to sit for any period of time, I decided I was done sugar-coating my concerns and made it clear to the nurse practitioner that I wasn't leaving without a referral to a gastroenterologist and some seriously strong meds.

At the end of the appointment, despite being visibly horrified from the examination at the state my body was in, she began to warn me about how painful hemorrhoidectomy is. And that's when I looked her in the eyes and told her about all the research that showed medical professionals routinely downgraded women's health due to not believing their patients about symptoms and pain levels. I told her how disappointed I was that my pain was continually being downgraded, leaving me frustrated that I had to fight in order to be taken seriously. As this NP's face turned bright-red, it was clear that this was not something she had ever considered, leaving her to stop fighting and instead upgrade my referral to urgent.

So what does all of this have to do with my hypothesis? Well, I've long believed that the underlying cause for my infertility is an autoimmune condition. One that medicine is unable to diagnose because we currently have not advanced to the point that it is detectable. And this is fueled by a growing belief that many in this community have undiagnosed immune issues. There is growing evidence that endometriosis is linked with immunity and that there's also a connection with PCOS and I've long suspected that premature menopause and diminished ovarian reserve also have an immune link.

What all of this has to do with me now is I believe that I have irritable bowel syndrome and that it's gone undiagnosed for a number of years. I'm not expecting a silver bullet with this, especially given that all test results tend to come back normal. But fueled with new knowledge about the immune system (I'm not an immunologist, so this has taken a bit) as well as some patient case studies, I now have sufficient information to make a case with the GI I'll be seeing this next week.

Because my hypothesis is that my infertility and my current flare aren't separate issues, but instead part of the same issue that has long been undetected, all pointing to issues with my immune system. And I firmly believe that many who receive an infertility diagnosis are facing the same systemic problem.

Monday, October 7, 2019

#Microblog Mondays: The new routine

It started with Jaxson running away from home. More specifically, sneaking out the front door. I didn't realize he was missing until 3 am when Daisy was calling for the birds without him joining her in a duet of meowing.

20 hours later I was curled up on the couch, sobbing uncontrollably while Daisy tried to calm me down and Grey gently consoled me. I was convinced my beloved cat of 15+ years was dead, eaten by a coyote/bit by a rattlesnake and somewhere in a ditch.

10 minutes later I would find him trying to sneak a meal from the cat food I left out for him on the front stoop, creeping low so as not to attract any attention from us. Happy, smelling of earth and no regrets.

Made my mother cry. No fucks given.

She was so happy to have him back. Then she spent the rest of the night beating him up for leaving without her.
The result from this incident was 2 elderly cats who decided that their days as indoor-exclusive animals were over and, hence, began a 5 am campaign to be let outside. After 16 years, they've both become skilled at maximizing the acoustics from a housing structure, allowing their howls to carry in a manner that mirrors surround sound.  This combined with years of stress, a new home setting that was generally peaceful, a backyard with a 7 ft fence, and an invasion of birds into said backyard led to a drastic decision I never expected to make.

I let them out.

And now, for 2 hours every morning, there's amazing silence. Combined with insanely happy felines. Grey and I can't remember the last time we slept this well.

Where's the sleeping kitty?

It hasn't been all sunshine and roses. Jaxson is far too large to get on top of the fence, but Daisy is another story. She's taken to fence walking every morning, teasing all the neighborhood dogs in the process, which has made me a bit unpopular with the neighbors. She's also decided roofs are pretty cool, especially for this purpose of dog-torture.

The only downside is that my mornings now start at 5 am. Like clockwork, the yowling starts with the promise that the pain ends the second I open the door. In addition, the bird invasion hasn't ceased since Daisy has been outside (if' nothing, they seem to know these two are too well fed to be a real threat), but Jaxson has been ridding the neighborhood of the mouse population and Daisy has been redeeming herself with the neighbors by shifting her attention to a local family of squirrels (who have been surprisingly destructive!!!)

In short we after so many years, we finally have found a routine that has brought peace, quiet, and a complete end to door dashing.

Sunday, October 6, 2019

Owning the narrative

Any hiatus on my end is rarely planned. The pattern usually starts with me going into something new, putting my all in, and suddenly finding myself too exhausted at the idea of facing another computer screen at the end of the day. But another aspect to these gaps in writing comes when I find myself in a place where it's beneficial to be listening. Where I'm absorbing so much information around me that often it's hard to make sense of where to begin. After 7-months, though, I'm long overdue for structuring my thoughts.

Please bear with me.

Each and every organism that walks this earth has its own story to tell. This statement in and of itself isn't terribly profound, but where it becomes reflective is when a layer is added that often most of these stories are repressed. This repression is often not done to be actively malicious but is a consequence of someone else viewing the sharing of an individual story as being threatening to their own. Despite our individualities, our stories are intertwined. Sharing is often not easy.

Since starting my new position, I've been shocked at the number of people I've encountered who not only own their stories but unapologetically control the narrative. Both impressive to observe and a bit unnerving, the consistency of how they present themselves to the world, quickly rejecting any outside objection to their narrative, is something that completely alien to me. I'm used to my own viewpoints and narrative being readily contradicted, with others silencing the aspects they don't agree with under the claims that their narrative is being infringed upon. What my colleagues have shown me is that owning your narrative doesn't mean that other narratives cannot exist, but this silencing is something that is not tolerated.

I've been rolling this concept around in my mind over the past year as I've been navigating this new position and deep-diving into the technologies my employer is creating. From a business standpoint, it's been extremely eye-opening. From a personal standpoint, it's been a paradigm shift in thinking about my story from the past decade. The reality is, sharing my story makes people uncomfortable, with each chapter having an aspect that either leaves the listener silent or actively engaging in contradiction. For a long time, I assumed that the heart of the problem lay in the message. It hasn't been until recently that I've begun re-evaluating that as I'm now acknowledging that I've also been allowing others' discomfort or versions of these events to drive my narrative.

What brought a lot of this to a head was a mixture of swimming in this new environment and picking up books from three Minnesota authors that all address their stories unapologetically. As I devoured these memoirs, first from Nora McInerny, then Hope Jahren and finally Cheryl Strayed, I found myself both homesick for my childhood home and inspired to revisit all that has happened over the past decade. Because if I'm being honest, the trauma didn't begin and end with infertility; infertility was just a chapter in this book. The truth is things have been hard for a long time, with me dealing with a lot of self-hatred that stems from illness and things outside of my control. And while others around me were talking with pride about all they have accomplished and overcome, I found myself shying away in shame, assuming that all the hurt and pain was due to me being completely broken. All of it starting with others silencing my narrative when I was very young.

There are problems with allowing a select few to drive global narratives. The first being that quashing other's narratives limits the conversation, giving the false impression about views and experiences which often lead to polarized views. The second problem, though, is that silencing others has a ripple effect that can ultimately be very destructive. Not allowing people to own their narratives not only sends the message that that individual isn't valued, but it also plants the seed for unresolved anger and pain that blocks people from growing. It also has a tendency to produce people who revisit these same evils on others, usually with ever-increasing aggression.

The wheels have been in motion over the past few months to begin breaking down a lot of this, starting with owning the fact that I'm still not okay from all of this and that I need help. So as I was fighting to find resources and help for Maddy and Teddy, making sure the same evils weren't visited on them, Grey and I had the hard conversation about me starting to do the same work on myself.

What all of this led to is a long-overdue diagnosis of ADHD; something that shocks many outside my inner circle as 1) I don't have the usual symptoms and 2) I hold a Ph.D. (don't ask me why this comes up as a justification for said shock). The other angle has been me owning the abuse I have survived, both as I child and as an adult. The truth is I have allowed others in my professional life to mistreat me solely for their own advancement and those toxic environments and relationships have left me questioning my own self worth and abilities. It's only been on the heels of news showing the continued toxic patterns from these situations that I've been able to begin reframing, but the reality is my narrative is something I've allowed them to have too much control over.

With all of this, I've begun working to own my narrative in this new manner. Acknowledging that others will have conflicting views about certain events or insights, but also that I no longer need to apologize for the discomfort my story causes others as that's a reflection on them. To date, it's been a slow and sometimes painful process, with me being extremely grateful to have the support I have from Grey and others who have been cheering me on along the way. What keeps me going is despite the stumbles and the pain is the shift I've been experiencing in how I view myself and the lightness of no longer carrying the emotional loads of others.

All that said, I still have a long road ahead in this new chapter. There are still days I worry too much about what others think or feel when frankly the problem shouldn't even be mine. So bear with me as I continue working through all of this in the space. Owning my narrative really and truly for the first time.
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