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

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

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.

For all that are gone and those yet to be

When I was in my 1st year of law school, I was very active on LiveJournal. And when I say “very active,” I mean that I posted a blog entry at least daily, if not multiple times per day.

Truthfully, I miss the platform terribly — not just as a repository for my thoughts, but because of the intimacy that it fostered among the people who used it. We weren’t resharing memes. That wasn’t a thing yet. We were actually sharing important, unspoken parts of our selves.

And, in that vein, when my boyfriend at the time asked, “You know, you can write in a private journal, right? You’re aware that’s an option?” I responded with an “of course.” But the truth was more complicated than that. The truth always is. Unspoken was the thought, “But what’s the fuckin’ point?”

I recognize that some people believe that I “overshare” from time to time. Occasionally, I’m one of them. But they’re missing out on a couple of incredibly important beliefs that I hold dear.  The first is that we are all one being.  And by “we,” I mean everything and everyone in all of time and space.  And by “one being,” I mean the divine.  By that logic, I’m always just writing to myself.  Separate consciousness itself seems like some kind of cruel parlor trick necessitated by material form.

To be frank,  it is my greatest hope and belief that my experiences enrich more than just me, and that by taking the time to write and to share, I empower those thoughts and experiences to be internalized by others in a way that helps them have a different understanding both of their existence and existence on the whole.

At the same time, I recognize that, all metaphysical bullshit aside, the “other” is a reality of life that can’t be escaped. Just like we all have an inner critic, being one with an outer bully doesn’t make them any less dangerous.

(I also would like to take this moment to assure you, dear reader, that I’m not high on anything right now. I’m 26 weeks pregnant and almost painfully introspective. While I miss the help with managing pain and PTSD, I’ve made it 6 months without weed, and I’m low-key proud of myself for it — both for putting this child’s needs first and for regaining a certain amount of endurance for being uncomfortable.)

Recently, I erased all traces of this blog from my Twitter account after a friend got doxxed by neo-nazis. These douchebags have made her life a living hell because she had the unmitigated gall to complain about being discriminated against by Uber drivers because she is disabled, in a wheelchair, and with a service dog — while also being a well-educated, non-binary, loud, feminist Jew.  I wanted to loudly support her, but I found that I couldn’t. I was afraid for my family’s safety. And I loathe that in that quiet, I let the fascists win.

I contemplated taking this blog down entirely. To be honest, the only reason I haven’t taken it down at this point is that more than a handful of friends and loved ones told me that it would be a shame to do so, and I still hope that Past Rae’s words help some folks in some way.

But I find it hard to write here, recently. It’s easier to share memes. It’s easier to post a one or two line response to an article talking about how ICE standards are meaningless or to remind friends sharing information about the atrocities in our concentration camps that they have been going on for over a year now, while nearly the entire American public has had so much shit political news thrown at them daily that they can’t possibly have the mental or emotional bandwidth necessary to carry this pain with them all the time. Especially not when there ain’t shit we can do about it, and the Supreme Court is busy affirming this sort of racist, classist behavior.

don't give up

So, I’ve been minding my hula hoop — focusing on self-care and then on care of my family and then on care of my friends — before contemplating trying to care, in earnest, about anyone else. That is, until earlier today, I came across this meme, and realized that despite all of my silence, I still have quite a bit to say, and quite a bit of self-care that I’ve been neglecting.

funeralsforpastversions

I shared the above meme this morning, when I read it — and my comment was simply, “Sometimes that someone is yourself.”

But what I wanted to say was that reading that short paragraph simultaneously shattered me and helped me find the strength in the ways that I’ve already rebuilt.

See, recently, I’ve been gutted about not being who I thought I was going to be. Past Rae had a lot of ambition… and beyond that ambition, she had a crazy work ethic.  When I think about how I would spend 3-5 hours a day practicing multiple instruments while at Berklee, I sort of blink in disbelief, especially since reading music is so hard for me nowadays.  When I think about how I would read a minimum of 300 pages a night of SCOTUS opinions or explanations in treatises while in law school, my brow furrows.  When I remember the nights I didn’t sleep while I was working on business plans and making websites for people in order to make a semblance of a living on my own, I shake my head — because compared to all of those Past Raes, I feel like I am almost intolerably lazy and entitled now.

Except, that I’m really not. I’m on 24/7 as a stay-at-home mom who is homeschooling a gifted 4 year old and gestating a second child.  Nevermind the “living with multiple chronic illnesses” bullshit. A healthy Rae would still be valuable in this situation. More than 5 times more financially valuable, according to Salary.com than healthy Rae ever was in the workplace. The only real difference, I imagine, would be that all the trim in my house would be painted to match, my son would be in more out-of-the-house activities, and the clothes might be folded.  (I say “might” because I honestly think that in all of creation, the idea that folding and putting away clean clothes is necessary for a person who almost never leaves the house is some kind of perverse cultural torture.)

I’ve found that I somehow manage to negate all that I do unless I have documented it… and even then, I brush it aside.  And really, I think that’s the only way I was able to achieve all the insane shit that I did when I was younger, too.  I remember, when I was applying to college, when I printed out the list of all of my extra-curricular endeavors, my guidance counselor laughed and didn’t think it was possible for any one person to do all those things, let alone to do them while maintaining a 3.8.  I really think the trick is not to think about it, and just do as much as you can with the opportunities you’ve got.

And in that line of thinking, these days, I rarely if ever take the time to mourn the old me. Or to mourn my hopes for who I’d be. It feels too much like pity, and I have yet to see the value in it. I think the years where I was actively suicidal were all the self-pity I can handle. Maybe that’s what grief looked like for me. *shrug*

Either way, I worry about how my son or my daughter will see me as they grow up. I think any parent does.  And I hope that they are able to see that no matter what life has thrown in my way, I’ve done my best. That even yelling into the void of the internet about suicide is better than following through… that resilience is a skill paid for, dearly, by pain and persistence, and that grit is a trait you can only build up by facing disappointment again and again… and the same is true of compassion.
the-fact-that-you-are-trying

Anyway, this was a long ramble, and I’ve just about lost the thread of where I was going with it, except to say, if you’re struggling, please keep it up and look for the value in it. And if you’re not, enjoy the short respite. It doesn’t seem to come frequently in life.  You don’t need to judge yourself, especially not for your feelings, and insecurity is just what ambition looks like when it’s mixed up with fear.  You’re more than enough, exactly as you are, at every moment — even your worst ones. You’re doing the best you can. We all are.

Remember: if you can encourage others, you can encourage yourself. If you can love others, you can love yourself.

letting lizzo down

 

What a difference a year makes.

At this time, last year, I was waiting on results from a CVS test to let me know whether or not my pregnancy was viable. It was not.

Yesterday, I gave my narrative in support of an amicus brief being written for the Supreme Court concerning June Medical Services v. Gee, a case challenging a Louisiana law identical to the Texas law the Court struck down in Whole Woman’s Health just a few years ago.

113 women in the legal profession who had abortions came forward as amici during the consideration of Whole Woman’s Health to explain to the Court how safe and legal access to abortion care was critical to their lives and careers, and to the legal profession itself. Their brief received coverage by multiple high-visibility, reputable, national media outlets, and is believed to have contributed a critical perspective to the Court and the public. It is hoped that this brief will provide some of the support necessary for continuing protection of women’s reproductive rights in America.

scotus-abortion

As a female member of the legal community, I explained why I terminated a wanted pregnancy, why I think the right to safe, legal abortion is important for all American women, and why it matters to me that my narrative be included.  Having already shared my personal narrative of what occurred last year, I want to share the last bit with you.

I wrote, “It means a lot to me to identify myself as a member of the legal profession who has had an abortion because I am now 15 weeks pregnant with another daughter, after the loss of my last. I have to be brave enough to tell our story loudly, so that she can avoid unnecessary suffering at the hands of people who do not value her as more than a brood mare. Her sister did not die because I didn’t want a child. Her sister died because I had to make the choice between the possibility of giving birth to a child who would certainly die a painful death within 2 years and/or kill me in the process of childbirth — and a guarantee of living, which would give rise to the possibility of future, healthy children. It’s not fair that any woman should have to look at a future of legal punishment for being faced with that terrible choice — especially when that choice was not made alone, but with the counsel of a respected high-risk maternal-fetal medicine doctor and her loving husband.  I’m honor and duty-bound to help protect the right to that medical care, and the gift of disability gives me the courage to do so without fear of comeuppance that could affect my career.”

To be honest, talking about being a part of this amicus brief is not how I envisioned announcing my viable, healthy pregnancy on this blog, but it feels right… Kinda like using Playdoh to create a baking soda & vinegar volcano seemed like the right way to announce to Henry that he is having a sister. (Seriously, you should click that link. The video is pretty damn cute, and I can’t imbed it here without paying extra to WordPress.)

Baby gender reveal illustration.

I’m due May 2nd or 3rd (depending on which set of ultrasounds you’re looking at). Funny enough, that’s the same due date that Henry had. So, it’s entirely possible that he’ll end up with a sibling as birthday present. If I get the luxury of scheduling a c-section and biology cooperates, I’ll give them separate days, for sure. May the 4th seems great for geek-positive reasons, though I’m not convinced that I want to name her “Leia,” and “Rey” is just right out.

My biggest fears, during this pregnancy, have to do with a medical condition that I was diagnosed with in January of 2018, which didn’t become terribly concerning to me until this pregnancy. I was so busy being excited that I didn’t have any cancers after my bone marrow biopsy that being worried about Primary Immunodeficiency (Common Variable Immune Deficiency most likely being my specific PI) didn’t even ping as a consideration… but now that I’m 15 weeks, 2 days pregnant with a pregnancy free from genetic abnormalities and cystic hygromas, it’s become concerning to me that across-the-board, my immunoglobulins (IgA, IgG, and IgM) are crazy low.  Fortunately, my white count, platelets, and everything else look good.

According to an article on NIH, “When a woman treated for CVID gets pregnant the adequate treatment is necessary not only to protect patient from infections, but also to allow sufficient transfer of IgG through the placenta to supply the fetus and consequently the newborn.”  So, I’m talking with my OB and neurology team about whether or not I should start IVIG.  I’ll do whatever they think is best — including finding an immunologist in their hospital network if necessary.  I’m not taking any chances with our daughter’s well-being — medically or legally.

Dear Universe, I’m listening…

Accosted at Costco

Last night, after a day of feeling terribad, I managed to drag myself out of the house and go to Costco with Adam and Henry to pick up some needed supplies and eat cheap pizza.

For the first time in years, an older, overweight, white gentleman looked at me with anger in his eyes, and said, as we were walking to the store, “WOW! Which one of you is handicapped?”

I didn’t miss a beat. Rather than being rude, I locked eyes with him and said, “Me!  Epilepsy and multiple sclerosis. Thanks!” And under my breath, I muttered, “You fuckin’ asshole.” Part of me wanted to answer, “None of your fuckin’ business, douchebag!” but honesty meant that he had the opportunity to understand both that he’s wrong for asking, and that I am not ashamed of my disability.

I spent at least the next 30 minutes trying to figure out why I was so furious, and why I couldn’t calm down. Was it because someone thought that they should be policing my body? Was it because I didn’t look disabled enough for someone to show basic compassion? Nah. I’m actually proud that I’ve done enough exercise to be able to walk well. But I finally figured it out…

I was pissed because every time a stranger calls me out over my parking space, what they’re really doing is publicly impugning my honor and my husband’s honor, since he’s the one who drives.  They’re suggesting, loudly, that we are liars — that I’m not really disabled, and that I don’t deserve the space.  And dear LORD, I wish that were the case.

Yesterday, I was actually feeling so badly that I almost didn’t go to the store. I hadn’t bathed in a couple of days (I don’t shower when I’m feeling shitty for fear of falling, and I need Adam at home with me in case of that.), so I put on extra deodorant and a baseball hat to cover my greasy hair. I was wearing pajama leggings and one of Adam’s old t-shirts with no bra — because yesterday, bras hurt too much to wear.  My arms were stinging, my legs were heavy, and I’d been battling stomach issues since I woke up.  But, apparently, I didn’t look disabled. I just looked like a slob. (Ha! Both can be true.) I dared to go to the store anyway, because I know how important it is to get up and move, even if it’s just a little bit of walking… and I had to get the fuck out of my house. Stir-crazy is no good. I don’t regret it.

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Atonement

Yesterday also happened to be Yom Kippur — the holiest holy day of the year for Jewish people. So, technically, I shouldn’t have been going to the store at sundown anyway… but my faith is anything but traditional.

Before getting in the car, I told Adam that I felt like the self-flagellation practice of the holiday didn’t make a lot of sense for me anyway. I could tell you (or G-d), without blinking an eye, everything that I think is wrong with me, and apologize for it any day of the week — but I have a lot harder time finding the things about me that I should celebrate and thank the Almighty for. If I need to atone for anything, my strong suspicion is that I need to atone for not recognizing or using my gifts to their utmost.

The whole point of Rosh Hashanah and Yom Kippur, and the Days of Awe in between, at least as far as I have groked, is to take stock of where you are in life, get right with yourself and everyone else, and start a new lap around the sun with a better attitude about life and renewed determination to be the best version of “you” you can be.

So, I didn’t just take the stranger’s provocation just at face value. I also felt a nudge from the Universe, reminding me to write here.

I actually started this blog after the first time someone accosted me for parking in an handicapped space. That was back when I could still drive.  I like to joke that I’m just in it for the parking because it’s a better attitude to have towards my disability than to sit, mired in self-pity.  Gratitude wins every time. So, here’s my prayer of thanks, patterned off of memories of temple services long-since attended.

If I must be disabled by seizure disorder and MS,

  • At least it makes parking easier.
  • At least it means I get SSDI and guaranteed medical insurance.
  • At least it means that I get to spend time with my son instead of having to send him to daycare while my labor generates wealth for others.
  • At least it means that I get the chance to individually tutor my son so that he can learn at his own pace.
  • At least it means that I get the chance to explore a side of femininity I would otherwise have entirely ignored due to internalized misogyny, and attempt to be a good housewife.
  • At least it gives me the time to check in on the people I love and offer them support.
  • At least it gives me the opportunity to participate in online support communities and help strangers who are suffering, on a daily basis.
  • At least it consistently helps me grow with regard to empathy and determination.
  • At least it challenges me to find ways of being that honor my past and build possibility for the future.
  • At least it helps the people who care about me grow in their understanding of our shared humanity.
  • At least it gives me the chance to write and be creative, and in doing so, to honor this experience and connect with others.

yomkippur

There’s Never Been A Better Time To Have MS

So, there’s never a great time to have MS, but really, really, it’s been as great a week to have multiple sclerosis as there can be.  There’s been a ton of research that’s come out with regard to the cause(s) and mechanisms by which the disease actually works.  This gives me a ton of hope for the future.

Here are some important news stories that have dropped in the last week.

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Starting Fresh

And in the spirit of being the best “me” that I can be, I’ve decided to massively decrease the amount of support that I give to Facebook by providing content. The news came out in the last week that they’ve decided to allow advertisers to lie, and that content that would get users banned will not be considered ban-worthy if it’s coming from politicians.  I think that’s outright foul. FB isn’t just facilitating defamation, they’re supporting it.

So, I’m taking my community-curating, constantly-posting-content self to MeWe.  I’d love to see you there.

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And one last thing…

Apparently, it’s also World Mental Health Day.  I still suffer from depression, anxiety, and PTSD. I am have worked in therapy for years to feel better, and I am not ashamed. If you are struggling, please reach out. There are good people out there who want to help you. I’m one of them.

*cracks knuckles*

It’s been 2 months since my last post.

In part, it’s because I spend a truly absurd amount of time scrolling my Facebook timeline. I’m not sure I’m not just stimming half the time. The other half of the time, I’m 100% sure that I’m helping people — most of whom, I will never meet.

For folks who aren’t savvy about stimming — it’s a term that describes repetitive behavior (usually physical) that acts as a psychological soothing mechanism. It’s typically discussed in connection with autism, but it’s also totally common in other non-neurotypical situations. For example, fidgeting/leg-bouncing and ADHD go together like PB and J. Personally, I remember threats from teachers in high school about my near-constant unconscious tapping. (Not saying all drummers naturally stim, but…) I definitely struggled with anxiety, depression, and perfectionism during those years, so learning that I was stimming that whole time was a bit of a revelation.  I honestly don’t think I’ve ever been neurotypical, and the more time I spend in online support groups for parents of gifted children, the more likely it seems to me that stimming is just as common to folks whose minds are constantly active as it is for folks whose minds force them to shut down.

Speaking of gifted children… another part of why I haven’t been writing is because I’m busy mommying. Henry’s 4 now, and we’re in full-swing on this whole homeschooling thing. We watch a lot of educational stuff on YouTube, read a ton of books (him reading to me almost as much as I read to him), and he plays so many games.  Dragonbox Numbers goes perfectly with BBC’s Numberblocks, btw.  Writing Wizard pairs brilliantly with a Magna Doodle. Monkey Word School Adventure (or any of the Monkey Preschool series) goes very nicely with Mommy getting to wash the dishes or take a shower in peace.  Of course, New Super Mario Wii & Wario Land Shake It! are no slouches in that department either.

But, perhaps the biggest reason that I haven’t been writing is because somewhere along the lines, I got this misguided, toxic notion that this blog is nothing more than narcissism, and that writing about my life is both self-indulgent and not particularly helpful to anyone but me. That shame spiral kept me real quiet and outwardly focused.

I have repeatedly considered taking this whole blog down and saving a copy of it, just in case I felt like reading it when I’m old, like I did with my LiveJournal (which, btw, is on a laptop I used during law school that I cannot get into because I cannot, for the life of me, remember my password. Oops.), but something always makes me hesitate.

Then, this past weekend, I got the notifications that I’d paid for re-upping the domain name and yearly domain pointing on WordPress, and was contacted by a total stranger who told me that my writing about MS and the ketogenic diet had positively influenced her. I thought that was pretty cool.

So, in the spirit of not being wasteful of money, thoughts, or opportunity, I’m going to make a real effort to write and remain both hopeful and vulnerable here. Thanks in advance for your patience with me while I dust off my digital quill and try to get out of my own head.

 

I’m alright.

As of today, it’s been 2 weeks since I last logged in to either Facebook or Twitter. I got my first, “Are you okay? People are worried about you.” text the day before yesterday.

I was both surprised (a) that anybody was worried (because Depression would have me believe that nobody cares) and (b) that it took 12 days for anybody to miss me enough to check in. (Though, to be fair, I’ve been checking in with a lot of people and making the first move because I recognize my responsibility to maintain relationships that are important to me.)

I had hoped that by posting here about my decision to step away from social media that it would have helped folks to not worry.  And then I found out that WordPress no longer publishes blog updates to personal timelines.  It only works if it’s attached to a Page and not to a personal account.  Adam thinks I should just create a Page for this blog. He’s probably right.

But, if I’m going to put in the work to do that, may as well put in the work to revamp the site and market it to increase readership… to start daily posting again, and hope that by leaving footprints on the path that I walk, that it does anything helpful and good for anyone else.

Thinking about it makes it feel like a lot more work than it is… It also would require me to log in to FB and Twitter and weed my digital garden to curate a better newsfeed experience. Right now, I’m not sure whether or not I have the time or energy for all that. I’ve just started to not automatically reach for my phone every few seconds.

Banality

To be really frank, I’ve dived deep into housewifery and stay-at-home mom-ness in the last few weeks. I’ve been focused on my family’s health and giving Henry the educational and emotional support he needs to grow up smart, kind, strong, and self-assured.

Sure, my house always seems to me to be in dire need of a maid, no matter how often I pick up (an act that feels constant and on-going), but life is happening here in full force. Loads of creativity through messy art projects and loud, often-dissonant, impromptu music sessions. Lots of science and math through baking and cooking and LEGO and video games.

As someone who used to live her life almost strictly for the stories (Cheers to you for being entertaining, 2004-2006 Past Rae), I find myself having a tough time feeling like I have much to gab about on my public, digital diary.

There’s not much excitement to be found in the daily, constant cycle of dishes and laundry, in religiously coupon-ing with multiple apps [Ibotta, Jewel’s app, Fetch Rewards (Use my referral code, 73962, during signup and you’ll get 2,000 Fetch Points just for starting.), & Coupons.com], meal planning around the weekly promotions at the 3 different grocery stores in walking distance to my house, and, oh yeah, managing my health.

The one remotely interesting thing that I’m doing right now is volunteering with Detention Lifeline, and writing legal briefs is only interesting to me because of the kind of nerd that I am. Truthfully, I’m just grateful that my legal knowledge might help, well, anyone at all.

Back on the Keto Bandwagon

One of the biggest changes of the last few months for me was stopping the keto diet and returning to the standard American diet (SAD for short) while trying to conceive because my high-risk OB wanted me to just do exactly what we did to end up with Henry. (The idea being that since Henry’s pregnancy was uncomplicated and he’s healthier than any of us, I had it right the last time around.)

Well, my 38 year old body isn’t my 33 year old body, and pain and seizures from unnecessary inflammation caused by diet does not make for optimal sexytime.  There’s an order of operations here that just cannot be ignored.

So, I gave the SAD 3 months. I gained 10 pounds and started genuinely struggling with MS, seizures, and depression again. Come to think of it, if it weren’t for the switch in diet, I probably wouldn’t have had the time-travel seizure that created the desire to quit social media. So, yeah. That’s enough of that nonsense.

Do I think I’m going to keep keto throughout my pregnancy?  Definitely not. I want to make sure a developing child has everything it could possibly need while inside me. And morning sickness absolutely begs for carbs. But fertility specialists recommend the ketogenic diet for both men and women who are trying to conceive — and that’s where we’re at. Plus, it helps with MS – both with managing symptoms and with slowing progression. I’m already supplementing with a prenatal vitamin with extra DHA and also take additional folate, so hopefully, everything will work out the way it needs to.

After having a spontaneous miscarriage in August of 2017 and having to end a pregnancy in late November of 2018 due to genetic abnormality, I’m really, really hoping that the 3rd time is the charm. I’ll do whatever needs to be done to help Baby Majka #2 to join our family. We all already feel their absence, and it sucks.

But it is nice to be able to sleep through the night, so I’m not taking that for granted for even a moment.

In that vein of thought, I’m going to get to work on a brief for a guy who is detained in one of our our many American concentration camps, so that he will eventually get to have some good sleep too.