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.

looksick

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.

ms-nerve-cells

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.

facebook-mewe

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.

Not Alone.

“You’ve always been addicted to the internet.”

Those were the words that my brother spoke yesterday when we talked on the phone. And he’s right. I was actually addicted to social media before the world wide web was a thing. Back in the early 1990’s, I started getting on bulletin board systems (BBS for short) in an effort to connect with people during the times that I spent at home alone. I’m pretty sure that I was 11 years old and in 7th grade the first time that I dialed in.

“If you’re on the computer with other people, you’re not alone.” was my response. We chuckled about it and moved on with our conversation.

But it got me to thinking. Even when I went away to summer orchestral band camp in 10th and 11th grades, I spent a good amount of my free time (when I was not practicing percussion) in the library at Sewanee, telnetting in to Shadowscape in the hopes of saying hi to friends. I spent time when I could have been connecting with new friends, or growing as a person, desperately trying to stay in touch with old ones so that I wouldn’t be out of the loop when I got back.

The same was true for me in college. Using the BBSes to stave off loneliness was such a real thing for me that I continued to do it once I started at Berklee. With the advent of AOL Instant Messenger, I lost the big conversations that happened in teleconference, but I got closer to many people through individual chats.

I used my computer for friendship so often that my first set of roommates kicked me out for typing too loudly, late at night. My second-semester roommate also noticed how glued-to-the-screen that I was, as I chose not to try to find parties or hang out with other students and instead waited, often for hours, for my long-distance boyfriend to log on to say hi.

I transferred to USC my sophomore year of college, and tried in vain to rush a sorority and make friends in real life. My roommate was a total cunt who went out of her way to hurt me. And I met my first husband, who was similarly attached to his computer, though his addiction was video gaming.

I realized that USC wasn’t the place for me, and I went back to Berklee… but I didn’t have the self-confidence necessary to break up with that guy, so, even though I had my own apartment in Boston, I didn’t go out exploring. I didn’t go to parties in a city where there are more college students than regular citizens. I stayed in, waiting for him to log on to See-You-See-Me or AIM. And on the rare occasion when I did choose to leave the apartment or have friends over, he accused me of cheating on him (which is kind of hilarious in retrospect, since he went to parties at USC and admitted to cheating on me.)

After he moved to Boston, I will admit, my obsession moved from social media to him and business planning. I was convinced that if I wrote the business plan for AudioXtacy well enough, that I’d be able to get venture capital, and could help change the landscape of the music industry. Oh, the hubris!

In late 2002, one of my friends from the BBSes introduced me to Live Journal, and a new obsession was born. Not only could I keep up with my friends from the BBSes who were busy writing about their thoughts, feelings, hopes, and dreams — but also friends from college who were trying to promote their bands and build their brands.

In 2005, after my divorce, I moved to Los Angeles for law school, and Live Journal is where I found my people. There was another girl from the BBSes who had moved to L.A., and our friend-overlap was huge, so she invited me to meet “the geeks” she was friends with in L.A. It was love at first type.

If there was ever a time in my life when I actually got out of my home and lived, it was during my first 2 years in Los Angeles. I was the Section A representative for the Student Bar Association. I felt what it was like to be well-known for something other than being the weird, brainy Jewish kid, and I liked it. I went to bars or parties at least 2 nights a week. I read up on human sexuality when I wasn’t reading case law. I worked out at least 2 hours a day, and was in better shape than I had ever been in my life. I got on OkCupid — another social network — which was responsible for my meeting and ultimately falling deeply in love with Adam (my current and forever husband), who ended up getting a job at MySpace.

And then, I was diagnosed with MS.

The diagnosis itself wasn’t what drove me back to social media overuse, though it is what caused me to start this blog. Truthfully, I never stopped reaching out online. I was still posting daily (sometimes multiple times per day) on Live Journal, always had AIM open on my system, and with Adam and our friend Gideon working at MySpace, I spent a truly stupid amount of time on that platform as well. Once Twitter and Facebook became things, I was on them, immediately. And often, to my detriment, in class. Hell, I even had a Friendster account at one point.

When seizure disorder struck, and I couldn’t make it to all my classes or safely go out with friends, Live Journal and Facebook were my only real windows to the outside world and the people I cared about. Then Live Journal got purchased by some Russians, and everyone just stopped blogging.

I spent a good 5 years couch-locked because of seizures. During that time, if I wasn’t preparing for the bar exam or doing the basic chores of life, I was on Facebook (or, for a hot second, Google+). That includes when we had to move to Romeoville because MS and 2 years of unemployment had basically bankrupted us, and the years we lived in Chicago-proper, before having Henry.

After Henry was born, Facebook became even more important to me because the message boards on TheBump were filled with angry, self-righteous bitches. I was so painfully lonely in that apartment, trying to figure out how to be a mom while dealing with MS, seizures, lack of transportation, and a horrible case of PPD.

And now, after studying how food affects me, I have fewer seizures than I have for the past decade. Most days, I can walk to the store or Gymboree with Henry easily. Most weeknights, I can make it to the gym. But I wasn’t fully living in meatspace.

Where did I look for healthy recipes? Facebook (and Pinterest). Where did I go for support and guidance with weight loss or suicide prevention or questions about motherhood? Facebook. Where did I do research into the best methods for homeschooling my son? Facebook. Where did I spend most of my time, when I should have been cleaning and connecting with my son? Facebook.

I was still looking online for companionship. I was still scrolling compulsively. I was still feeling innately lonely. Hell, even with my husband in the room, I still felt the need to constantly check in, and I didn’t realize how that may have been hurting him. (Sorry, babe.)

And when my PTSD went absolutely haywire a couple of days ago because of the combo of time-travel and a terrifying news cycle, I got angry when confronted with the fact that I quite literally couldn’t look away.

So, at the age of 38, I’m breaking a pattern that has served as an emotional crutch for 27 years — nearly two thirds of my life. It’s downright painful.

I feel like I’ve abandoned a ton of people who I deeply care about, even though I am actively reaching out to folks on the phone and over text. In the interest of personal growth and positive mental health, I’ve abdicated responsibility as an admin on more than 20 groups, without warning anyone, which feels really shitty, since I derived a sense of purpose from helping people in those groups. And to be frank, I feel like I’ve entirely cut myself off from society, since I still can’t drive anywhere, and all of the community’s social events are available to view there.

I feel like a failure at one of life’s most basic skills: just being okay being alone. And I have no idea how to make friends who aren’t the mothers of my son’s playground playmates anymore. That being said, I’m profoundly grateful for that small handful of mommies. They are real friends, and it’s because of them that I feel like I am up to this challenge.

I hear that making friends after your 20s is tough for most people anyway, and that fear of loneliness drives some of humanity’s most prolific and toxic behaviors, like substance abuse.

So, I guess, when it comes to needing to grow this skill, I’m really not alone.

Opting out of psyops.

So, longtime readers of this blog are well aware of the fact that I have seizures that occasionally culminate in postictal confusion where I believe it’s a different date when I wake up. I like to jokingly call it “time travel.”

Recently, I had a larger seizure (which is increasingly rare for me since making changes to my diet), and when I woke up I was certain it was 2003.

16 years is a huge difference when it comes to life, the news cycle, and, well, pretty much everything! It really freaked me out to know that I was married to a different man, had a 4-year-old child, and owned property in Chicago.

Back in 2003, Chicago was probably my least favorite American city because of some ridiculous shenanigans that occurred here in 1996/1997, when my then-best-friend moved here from Memphis. We made some terribad decisions together on New Year’s Eve. Anyhow — in 2019, Chicago might be my favorite American city — and not just because I live in the burbs. It has all the best things of Boston (accessible, inexpensive public transit), Los Angeles (arts!), and Nashville (low cost of living for a major city) without the detriments of each of those cities.

Anyway, I found myself compulsively scrolling Facebook after I came back from the confusion. I habitually check my timeline when I come back from postictal confusion to try to jog my memory and make sure that I am up to date. This time, I couldn’t look away.

Now, I understand that fight/flight/freeze is a real thing, with or without mental health issues — but I also recognize that I have both the opportunity and obligation to opt out of the info stream that is causing exacerbated problems! So, rather than continuing to be affected by psyops, I am taking a social media break.

The constant news cycle and prolific articles about what is happening in our country are genuinely terrifying. It was so bad that I was feeling an intense need to run to another country, with or without my family. And that’s a terrible, terrible idea.

It is really difficult to not be constantly checking my phone right now. The fear is real. The anger is real. But the idea that staring at the dumpster fire will help me feel more in control of the situation is, well, just false.

One of the things that I’m really concerned about is that I participate in a ton of communities on Facebook that are designed to help with accountability and support for chronic illness, weight loss, and mental health. I don’t want the people in my communities to think that I’m abandoning them, but I have to put my and my family’s safety and wellbeing first.

Fortunately, having a memory problem makes it a little bit easier to avoid social media. I was able to log out of all of my accounts on all of my devices, and I genuinely do not know my passwords to get into, well, anything. That road block is far more effective than the BlockSite app at stopping me from logging in despite my better judgment.

So, if you need me, or if you want to respond, please email or text or ping me here by replying.

Hope you’re all having a happy Friday. ❤

In the Interest of Honesty

It’s been a very long time since I let myself write here. That needs to change.

It Hurt Too Badly Then.

My last entry was private because I wasn’t sure if I could handle response to it. But, it’s been months now — so, in the interest of honesty — I feel like it’s only fair to share that Adam and I had to make the terrible choice to end a very wanted pregnancy at 14 weeks because of a whole bunch of bad physical shit involving both the baby’s and my likelihood of survival. It was a layer of hell, and I’m glad it’s over. It’s been about 2 months since the surgery, and I’ve never been more vehemently pro-choice or more grateful to live in Illinois.

It Hurts Right Now.

I saw Dr. J (my neurologist) in December, and he let me know that he expected me to have a flare because of the surgery, just like I would have if I’d been able to carry to term. Well, it’s presently medrol dose pack time for me, and I figure if I can’t write about having an exacerbation my 10+ year MS journal, it’s time to hang up my blog… and I’m not ready to do that.

It Just Might Hurt Forever.

Also in the interest of honesty — I’m genuinely sorry for saying that I “conquered” suicidal thinking. That shit is habitual AF after 30 years. So, the thoughts still happen most days, and I am still expert-level at acknowledging the thoughts and dismissing them — or telling Adam when they get persistent and not engaging in active self-harm.

It was blithe of me to act like I was “all better.” Truth is, I understand myself a lot better, and getting to that point was freeing. But 30 years of consistent incorrect thinking doesn’t re-route over night, or even over a decade, apparently… much as I wish it would. I just hope, in the great someday, when I actually am dying (not by my own hand), that the part of me that begs for relief or release finally gets to be happy, right at the end… though I’d settle for passing without there being a moment to acknowledge I’m done. I wouldn’t want the opportunity to judge my story like a book. I’m too harsh a critic.

But Life Is Pain. Anyone Who Says Otherwise Is Selling Something.

Real talk, someone I barely knew died about a couple of weeks ago. She was vibrant, sarcastic, geeky, and hilarious — and friends with a bunch of my friends from growing up. I thought really well of her, despite not being close. Her death, while it has no day-to-day affect on my life, hit me harder than I could have anticipated. I’ve been thinking about her (and our mutual friends) every day since I found out.

I keep wondering “Why did she just randomly die, and not me?” It’s a question that is only natural when someone younger than you dies — especially for anyone who is already acutely aware of their mortality and natural human fragility. I keep trying to answer that question, as though an answer exists. (Ha!) I both want to vent my unquenchable fury at the random chaos that is existence *and* justify my being. So, I’ve been trying to focus on being kind and supportive of others. It’s more productive.

Should I Be Selling Something?

In that vein (kindness and support), I’m still working on refining the keto cookbook. I’ve even gotten a domain name for it, and I’m thinking about setting up a simple meal-planning/support service. I just wish I felt more confident in offering that sort of help without a nutrition degree.

I’m doing my best, sticking to the diet and staying under 20 net carbs, but all the seizures I’ve had this week have me questioning if I actually know what I’m doing. More and more, the answer seems to be “no.” Of course, MS does sort of gaslight you about how your body’s supposed to behave… but I think it may be wise to buy a blood testing kit to be sure that I’m actually accomplishing neurologically therapeutic levels of ketones. I’ve heard that the pee strips lie.

Unfortunately, the blood glucose/ketone meters are ~$60, and the test strips are a buck a pop (on Amazon, at least). I’m going to call Aetna tomorrow and see if they offer it to Medicare patients through mail order for cheaper. Heck, even if they don’t, I should probably get one anyway, in the interest of honesty.

The Things That Need To Be Said

It’s been a long time since I have written here… and that’s by design. Truth be told, this blog is, in many ways, much more like a personal diary than anything else. Not sure if that’s a good or bad thing, or if judgment is even necessary (It’s not!) — but it is what it is.

If I don’t write something about this last week right now, it probably won’t ever get written… and something about that feels, well, wrong.  So, even though this emotionally feels like what I imagine getting your brains yanked out of your nose would feel like, I’m going to let the words do their thing, so that, hopefully, I only have to do this once.

On Wednesday, November 28th, I had to terminate a very wanted pregnancy at 14 weeks because of both genetic abnormality in the fetus and additional medical complications that placed both the fetus and my health in jeopardy. 

I didn’t want to do it, but the likelihood the kid would be born was less than 10%, and if it did manage to survive childbirth, the likelihood of it surviving to age 2 was even lower. Its immune system, lungs, and heart were all compromised, and it had a genetic abnormality that would require full-time medical care.

So, it wasn’t much of a choice. Adam and I had to “decide” between ending the pregnancy quickly (before the fetus developed to a point that it would begin suffering) and a best case scenario that involved impossible odds and required money we could never scrape up.  The most likely outcome of not deciding to end the pregnancy as soon as possible was that at least one of us would die, possibly both of us.  On the other side: if I ended the pregnancy, Adam and I could try again, and would most likely not face the problem again. (One educated friend described our situation as being hit with genetic lightning.) 

Family members and close friends keep checking in — wanting to know how I’m doing, and the answer is the same as it has been since the cystic hygroma was first spotted at week 11. I’m shitty!  And okay.  I’m very sad about the situation. I’m angry at nature. And I don’t want to talk about it. In fact, I’m typing about it right now because it requires the least amount of using my voice or emotional strength to communicate with anyone about this. 

Presently, I’m sore and achy and exhausted on every level. I’m still healing, and will be for the next 2 weeks, apparently.  But really, really — no matter how much grief I’m dealing with, no single emotion has overwhelmed me as strongly as the intense fury I hold for the people of Ohio, who, while I’ve been going through this, have been working hard to make the seemingly-unending agony that I was experiencing into a capital offense

So, while wrestling with the situation, waiting for genetic testing to be done and then returned, while worrying about what this could be — for the week leading up to the painful testing (CVS: not comfortable.) and the next 2 weeks leading to surgery, I kept asking myself, “Why not me? Should I die instead? Am I a murderer? Do I want to kill my child?”

I kept thinking about how hard I worked over the last decade to stop cyclical suicidal thinking. I kept asking myself if it wasn’t a more ethical choice to just kill myself instead — if this wasn’t somehow my fault. Doctors assured us that neither Adam nor I could have caused either of the medical situations that affected our fetus, but I kept searching for reasons to hate myself. I kept looking for malfeasance.

I found myself genuinely wondering how a loving and all-knowing God could create pregnancies like the one I was experiencing and then also make unkind idiots who believe that a woman should be put to death by her government if she, her doctor, and her partner made the horrifically painful, but necessary choice to end a pregnancy that was already all but guaranteed to kill the baby within the womb, and definitely within the first 2 years of life, but also put that woman’s very existence in danger as well.  

It honestly boggles the mind to think that an action that my OB/GYN — an expert in high-risk maternal fetal medicine — called “the only compassionate choice” is also, somehow an action deserving of death in the minds of folks who have never had to experience it. 

To be clear on my perspective: There’s no goodness in letting a fetus develop to the point that it has cognition and can feel pain, just so that it can definitely die, painfully, before it would ever utter a “hello.” There’s no Godliness in making a woman choose the life of a doomed baby over her own. There is no legitimate government interest in actively increasing the misery, pain, and financial burden of the parents of a doomed and dangerous pregnancy.

Society does not need to be protected from mothers like me. I do not belong in prison for life for this. I have to live with this. I have to live with myself and the knowledge of what this experience feels like and means about nature and my place in society and even the cosmic order. I chose to live… so I had better fucking live.

Part of the reason that I haven’t written about this or been willing to talk with the many of you who have reached out is that I’m not looking for anyone’s permission or absolution. I’m not signing up for judgment, and writing about your life or sharing with concerned friends or family members oftentimes seems like an invitation for others’ comments. I don’t have the emotional energy to deal with more negativity. I have enough. Shit, I don’t have the emotional energy to deal with thanking more people for caring! I barely have the will to “person,” let alone to entertain other people’s thoughts and questions.

I already have family members who have decided to bitch behind my back to my mother about how I update about my life quickly on Facebook instead of talking to them. Honestly, I’m just getting info out to people who care about me as expediently as I can. I’m floored and slightly overwhelmed by how many people have reached out with love and support in this gigantically awful time… and my ability to respond has been emotionally stunted, at best.  So, if you’re actually cranky about me not giving you “preferred status” with regard to windows into this hellscape nightmare, do us both a favor and get yourself a hobby. Gossip obviously isn’t entertaining you enough, and I’m not calling to entertain you. 

I am grieving.  But it doesn’t mean I have to share it.  My grief may not look like yours would. I’m not on anyone’s schedule, and I don’t owe anyone. Grief doesn’t care about schedules. Neither does pain.

TBH, I’m not crying much. I’m not thinking about what should have been my 4th child, if pregnancy were always perfect. I’m thinking about how Real Child 2, version 2.0 didn’t make it through beta testing, and hoping against hope that version 3.0 does better. 

I’m thinking about how, if version 3.0  is also a girl like its rainbow sister, I need to fight harder to protect her reproductive rights. 

I’m seething for the women of Ohio, who deserve more respect and care.

And, I’m grateful to live in Illinois, for the time, attention, and care given to me by the medical teams we worked with at UCMC and Northwestern, and to have both my mom and Adam around to help me get through this.

And for Henry, who cannot really understand what’s going on, but who is really enjoying extra time with MeeMaw.

And, yes, sometimes I’m crying out of absolute frustration over my lack of control over some of the most meaningful bits of life… but crying doesn’t help me feel better. Writing does. So, I’ve written the things that need to be said, so I can stop hearing them in my head.