Monthly Archives: March 2020

34 Weeks Into a High-Risk Pregnancy In the Wake of COVID-19

Posted in Just Life., Multiple Sclerosis, Seizure Disorder by

Ladies and Gentlemen, let me tell you: there’s never been a more ridiculous time to be anywhere from 3 to 8 weeks away from delivering a newborn.

Only a woman who was diagnosed with and disabled by seizure disorder caused by multiple sclerosis 2 weeks before she was scheduled to take the bar exam could look at this shitshow of a situation and find herself laughing. But, you know, if you can’t laugh at the absurdity of life, you’ll just end up crying. And with these hormones, and the difficult decisions I’ve been faced with, I’ve been doing that too from time to time.

For those of you who are uninitiated in the process of enduring a pregnancy, 34 weeks is damn near done with your pregnancy.  You’re at the point where, if you’re high risk, you have to see your obstetrician every week to check on the baby. If you haven’t packed your hospital bag (I haven’t), you’re behind the curve.  Why? Because you’re likely to give birth anywhere between 37 (early term) and 42 (late term) weeks. And the closer you get to “full term” (39-40 weeks), the more likely it is that you will naturally enter labor. [1]

This is where things get “fun” for high-risk mommies-to-be in this season of imminent doom. While everyone is being told to shelter-in-place to avoid contracting and spreading COVID-19, we are still expected to come to the hospital for weekly check ups for the health and well-being of our babies.

We know, every time we go to the hospital, that it means risking infection, and that even if we’re asymptomatic and otherwise do not leave our homes, we may still transmit the virus to our spouses and/or children.   We also know that every time we go to the hospital, it might be the day where they say that there’s an issue with our little one, and that the baby needs to be delivered immediately. As someone with primary immune deficiency, I am hyper-aware of how likely it is that I will be come infected, and thus wear a N95 mask anytime I’m at the hospital.

For our family, it also means I cannot drop my 4 year old son off at his grandparents’ house and have my husband by my side for any of these appointments. My in-laws (grandmother, grandfather, and great aunt) are in their 60s and 70s, and they have too many medical complications that would mean a higher likelihood of death if any of us were to accidentally transmit the virus to them.

Of course, I also cannot drive because of seizure disorder. My husband is the only person who can drive me the 45 minutes to the hospital, safely. This also means that without any other family living with us, my son has to come along for the ride and wait with him for at least an hour in the car. While I still am allowed to bring my husband with me (as my 1 support person) to the ultrasound test, with the current protections for COVID-19 in place, my son is not even allowed in the hospital to go to the bathroom.

[Edit: Less than 12 hours after I wrote this, I received a phone call from the hospital, informing me that I am no longer allowed to bring my husband with me to ultrasound tests, and that they anticipate in the coming weeks, that he will not be allowed in for delivery or recovery.]

Normally, at 34 weeks, my high-risk obstetrician would have me do a weekly non-stress test to make sure that the baby is getting enough oxygen. Typically, a non-stress test is recommended when it’s believed that the baby is at an increased risk of death because of a mother’s physical condition.[2]

We started the NST process at week 30, but by week 32, the coronavirus had reared its ugly head in Chicago, and processes were changed. Now, we only do an ultrasound to check fetal movement, heart function, and to see if the baby is taking “practice breaths.” If the baby doesn’t pass, I would move to NST, and if that fails, to delivery.  But if the baby wiggles in the right ways, I head home without a non-stress test and without seeing a doctor.

Apparently, I won’t be seeing a doctor until week 36. At that point, I’ll have gone 6 full weeks without seeing a doctor. For someone with seizures, chronic hypertension, and immune deficiency, it is an unusually long time to go without in-person care — longer than any other time during my pregnancy, including first trimester.

When I do finally see a doctor, it’s not going to be the high-risk OB who I have a relationship with. Even though Dr. I was the practitioner my husband and I chose for my care — the same amazing physician who delivered my son in 2015 — he is old, in his 60s at least, and is entirely avoiding the hospital to remain safe from the virus.  So, I will be meeting someone new at the beginning of April, who will, ostensibly, be responsible for helping me to deliver.

Of course, it’s customary around Week 36, whether you’re healthy or not, to be talking with your OB about your “birth plan.” If there’s anything I’ve learned from living with multiple comorbidities, it’s that the Universe laughs when we make plans.  Flexibility is the key to survival (and maybe even happiness) and rigidity to expectations equates only to pain and unnecessary suffering.  Guidance from that lesson is exactly why I’m changing the “birth plan” that’s on my chart.

See, because of COVID-19, partners are not allowed in the operating room if you’re having a c-section.  There’s no PPE (personal protective equipment) for them. To be entirely fair, there’s not enough PPE in the hospital for the staff, let alone birth partners. Things have gotten so bad that my hospital is begging for donations. I will be sewing some masks for them. My only fear is that the fabric I have is too porous — but considering that the CDC is telling nurses to wear bandanas over their one-a-day N95 mask, I figure something is better than nothing.

Anyway, current protocol at the hospital allows for one support person for women who are attempting a vaginal trial of labor (traditional delivery), and even though Dr. I said that there are some very scary possible problems that can occur when a woman goes for a vaginal delivery after a cesarean, I have a reasonable chance of success.

I feel, strongly, that I owe it to my husband to at least try to make it possible for him to be there for the birth of our daughter.  The way I figure it, the most likely worst-case scenario is that I endure the pain of labor until they end up choosing to move me to the OR for an emergency cesarean, which was initially our preference anyway. Arguably, VBAC is a safer bet than a second cesarean anyway, since I only had the 1st one because Henry was breach.  It also would get us out of the hospital 2 days earlier, which, during a pandemic, really matters.

Of course, there are no visitors allowed, and hospital protocol is changing daily. If, suddenly, women are told that they will have to labor on their own (as they are in NYC currently), you can bet your ass I’m going to be signing up for a planned second cesarean in a millisecond. I can withstand pain, but I doubt my ability to withstand the pain of labor without any emotional support.

[Edited to add: Oh yeah! I forgot that they cancelled all labor prep classes, so I’m learning breathing techniques and labor positions from YouTube videos!]

And then there’s other stuff to consider that we had not previously had to deal with: since COVID-19 has made travel unsafe (every gas station and hotel posing its own dangers), my parents cannot come in from Colorado to meet their granddaughter. This also means that they won’t be here to watch Henry. It means for their safety and for ours, I’ve had to ask them to stay home. It feels gross for all of us. I want them here. My mom was going to stay with us the whole first month. But now, my mother worries she’ll transmit the virus to me or the baby… and I worry for her and Dad picking it up in the first place, either on the road, on an airplane, at a hotel, or from us. I couldn’t live with myself if either of my parents died because of this birth.

When it comes time, and I go into labor, what are we going to do with our toddler?  Because of the weekly checkups, I worry infecting anyone who would help us. What family members do we believe are healthy enough that we would ask them to care for him for at least 3 days?  Do we trouble my husband’s brother who has 2 children and a wife who is enduring her own medical problems?  They’re already stir-crazy from the lockdown. Do we ask his other brother who has no kids? He still has to leave the house to go to work at a place with other people who have family members who have been exposed to the virus. Do we pray for the best and leave him with his grandparents?  There’s really no good answer.

And then there’s the existential dread: What if I die giving birth? I’m nearly 40, and according to the CDC, I’m more than 7 times more likely to die in childbirth than someone under the age of 25.  Women aged 40 and older die at a rate of 81.9 per 100,000 births. [3] I’m 39 and a half.

What if I survive labor and delivery and contract COVID-19 while in recovery at the hospital?  As someone with so many comorbidities, would they save me because I’m a new mother? Or would they decide that since I have multiple sclerosis, I’m not worth saving?  My home state of TN has already made the decision that folks with MS don’t deserve to live if they’re rationing care.

And then there’s this nightmare fuel: a NICU nurse tested positive for COVID-19, and now newborns on her wing are being placed in isolation. So, I not only get to worry about me picking it up, about anyone in my family getting it because I’ve got to go to the hospital instead of staying home, but I get to worry about whether or not my newborn will be tended to by a nurse who has it.  And with the lack of PPE, the likelihood of that is significant.

I’ve never, in my life, thought that a home birth sounded sane, let alone safer than a hospital birth… but here we are. And I am not a candidate.

So, for everyone who has hit me up over FB Messenger or text and asked, “How are you doin?”  This is the real answer.  This is what “fine” means.

It means I’m sitting with all of this, and I’m still raising a precocious, headstrong toddler and rationing the food in our home and helping friends whose mental health is failing them because they haven’t spent this many days in one place before.

It means I’m treading these waters while sharing information on Facebook about the mathematic reality of the oncoming storm and while vetting fact-checked, peer-reviewed studies and articles about the virus.  And advocating to free the prisoners in the concentration camps before they become death camps. And sharing funny memes.

It means that literally everything about life is harder and more frightening than it needs to be, not just for me, but for every mother-to-be with a disability while idiots (and by idiots, I’m talking about President Trump) still talk about how this is “just a flu” and that it only affects people who are old or sick (as though our lives are worthless).

It means I’m growing life inside me and protecting it, while privileged idiots like the governor of Mississippi actively work to make our lives more dangerous. While the talking heads on FoxNews act like it’s more important for people to get their hair cut and their nails done than for me to live. While the President tells people we’re going to have to “let people die” to maintain the economy.

It means that every day, multiple times a day, my existence is attacked, and I am charged with the sacred duty of standing up for my right to live.

“Fine” or “okay” is the only word I have for it.  Because “furious” or “disheartened” or “lost in grief” or “hopeless” are not good options for how to be while you’re gestating.  You know, stress isn’t good for the baby. (Really, it’s not. It affects their neurological development and likelihood to experience anxiety as they age.) So, paying attention to what’s going on, while it’s not optional, is also objectively harmful. And I get to feel guilty about that. (But, hey, I’m Jewish, so I’m practiced in this arena.)

So, I try to take breaks and do some yoga. I color and play games with my son. I cook some food. I take a not-too-hot bath. I focus on maintaining good mental health. I call my parents and remind them that I love them, because I never know when it will be the last time. And, for whatever good it does, I pray – not just for myself, but for the safety and well-being of us all.

On Resilience & Cowardice

Posted in Art, Just Life. by

I’m writing this from my bed.  It’s been a long time since I brought my computer to my bed, but here we are.

Am I hiding from my husband and my son?  Nah. They’re playing Minecraft downstairs. But the truth is: I’m up here, listening to Kelly Buchanan on Spotify, and recognizing that there are lessons from my past that I absolutely have to acknowledge right now, or I’ll miss them.

For those who haven’t been friends or family since I was in college, a little backstory to clarify where I’m coming from:  I attended Berklee College of Music from 1998 to 2002. At first, after years of being in honor bands and symphonies in high school, I wanted to be a film scorer or rock star. Berklee seemed like the place to do it. But, as my entrepreneurship teacher so aptly said in class one day, “Berklee turns artists into assholes.” And, I can’t say Prof. McCluskey was wrong. It certainly worked that way for me.

I started out in total percussion and switched to voice second semester, in no small part due to the fact that I loved singing, and I couldn’t develop the skills necessary to succeed on drumset for Drum Lab 3, no matter how many hours a day I practiced.  Failing a class wasn’t an option for me. I was too much of a perfectionist back then. So, I withdrew, and I switched my principal instrument at the same time that I declared a major in music business/management.

My first semester of vocal training, I was lucky enough to be placed in a performance lab with Kelly Buchanan.  I was in awe of her — like “rockstar effect” awe, and I don’t think she realized that. She played her guitar and sang at the same time. She brought her original songs to class. She was the messy blonde-haired blue-eyed punk rock goddess that I had groked in music business classes was the only kind of person who could really succeed in the fucked up industry we were trying to be a part of. She was the embodiment of what I wished I was at the time. But there I stood, in all my brown-haired, hazel-eyed, fat glory, daring to be in the same class as her.

I will never forget this one time, in the cafeteria running into her and another classmate who sang Mariah Carey songs better than Mariah did — I let them both know how amazing I thought they were, and they were both shocked, because they said that in their estimation, I was the best performer in the class. My mind was blown. I decided that they were just being nice – because, if I knew anything about myself by that time, it was that I was a total weirdo, and it was impossible to actually like me.

Fast forward to 2020 — past the mistake of a first marriage and its abuse. Fast forward past graduating law school and failing the bar exam multiple times — past EMDR and acknowledging all the trauma I’ve repressed over the years. Fast forward past being diagnosed with MS and seizure disorder and later common variable immune deficiency. Fast forward past falling in love with a man who understands me on levels I don’t understand myself, who sees my value when I don’t. Past our marriage and the birth of our first child. Fast forward to the point where everyone else has entered quarantine and is freaking the fuck out about a viral global pandemic that is killing 3% of the people who become infected, while my life has changed in exactly one way: I no longer go grocery shopping on Saturday.

I’m now 34 weeks pregnant with my second child, and the world is being overtaken by COVID-19.  I found out today, that the medical community is hurting so badly for personal protective equipment that many spouses are not being allowed in to c-section surgery because of a lack of appropriate protective masks and scrubs. Finding this out sent me into a hormonal tailspin of anxiety. Like if Adam holds my hand, I can make it through labor, but without him, I will almost certainly die.

And if I die, what am I leaving behind besides my son?  A blog.

For some reason, I can write and not give a shit whether or not anyone thinks it’s valid. Nobody’s forcing anybody to read my online diary. But songwriting? For some reason, it’s sacred and put on a pedestal.  I’ve got notebooks full of lyrics. But I never forced myself to get over my fear of bad notation and write the music out, so no one else knows the melodies.  And I haven’t made a chapbook and acknowledged that it’s poetry.  It’s just pages in random spiral notebooks, scattered throughout my house.

Kelly has 3 albums on Spotify. And one of those CDs came out after she recovered from a traumatic brain injury.  I have none. In fact, I have only 1 recording of an original song, and it is not one that I’m terribly proud of. (I wrote a goofy song for a boyfriend while in law school, and his good friend recorded it with me as a present to him. It was not my best work, lyrically.)

So what does this have to do with resilience and cowardice?  Everything.

Kelly performs to this day. She had to reteach herself guitar after her injury.  My buddy Chase, who I grew up with, had broken legs from a bike accident and re-taught himself drums.  I’ve got a piano and 2 guitars in this house, all gathering dust, because I can’t stand sounding bad.  I’ve got books of songs no one’s ever heard because I can’t let my art be judged.  If I die tomorrow, it will die with me, all because I can’t be nice enough to myself to spend time sounding bad.

And that, in my estimation, is the very definition of cowardice.

I can say that it’s because I don’t want anyone to steal it if  I dare to put it online. I can say that I know that it enters the public domain if I don’t copyright it first. I can say that it’s because I don’t want to release anything that isn’t exactly right. I can say that I should be spending that time doing other things for my family. But they’re all lousy excuses.

It feels unforgivable when I can, in one breath, be willing to bear every inch of my soul in words that the whole world can read, and in the next, be too afraid to record and share any original music.  As if the music itself is actually is part of me or belongs to me.  As if the music I’ve listened to by other artists, my whole life, didn’t weave the soundtrack of my very existence.  Like knowing every lyric of Kelly’s work doesn’t mean it’s part of me too. As if by keeping it quiet, I’m not denying the ephemeral stuff of life that isn’t just part of my identity, but part of other people’s too.

It feels like the older I get, the more I sink into my oddity, the more I embrace the weirdness and uncomfortableness of inhabiting this existence and recognize that the entirety of who I am is neither known nor understood by anyone, even me… the more that I recognize that I am just NOT for everyone.

Sometimes, I wonder if I’m even for myself, but to be honest, I don’t get the luxury of having a break from me. This brain constantly chatters. And that’s okay.

See, one of the things I’ve learned from all these years with multiple chronic illnesses — from connecting with people all over the world who deal with incessant pain and fatigue and brain fog and uncertainty — is that resilience isn’t just a skill. It’s a mindset.  It’s a way of being. It’s not just about not giving up. It’s not just about trying — or even how hard you try.  It’s about not forgetting who you are. It’s honoring the fact that every past iteration of your self resides inside you still, at every minute of every day. It’s recognizing seasons exist in life, and not fighting them.  We can’t bloom all the time. And when we do bloom, it won’t always look the same.

Resilience is rooted in self-acceptance, and self-acceptance only comes when you either do the things you need to do to earn your own respect or give yourself grace and understanding for not living up to unreasonable expectations. You have to learn to treat yourself with the same kindness you reserve for others.

To put it in the words of Lizzo, “If you love me, you can love yourself.” I’d hate to think of what life would be like if she hadn’t had the guts to self-validate when it comes to her music.

These days, I’m teaching my son piano basics. He’s about to be 5. He knows “Hot Cross Buns” and how to play both a major and minor scale. He can pick out “Jingle Bells,” and he doesn’t beat himself up when things aren’t perfect because he knows he can always try again, and nobody in this house will ever like him less for making a mistake – no matter what kind of mistake that is.

And if I can teach him that, I’m pretty sure I can internalize the lesson myself.

Even shitty art is valid. Bad music is better than no music. And bravery is sometimes just letting yourself make mistakes in front of other people until you get it right.