Category Archives: Just Life.

Proof of Life

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

I’m still here. Still at “safer at home.” Still covid-free as a nuclear family.

July brought a couple of really great changes for us. The most significant change is that Adam got a job! He’s working with SENS Research Foundation as their executive assistant. He’s supporting multiple executives, gets to work remotely, and is excited to be using his skills to support scientific research that focuses on life extension instead of just helping a company make profit. It’s been amazing to me how seamlessly his new job has fit in with our regular day-to-day life. It’s been such a blessing, and I’m so grateful for the serendipity that created this opportunity.

The other change is that Gabrielle has gotten her first vaccine dose! By now, we should have had a fully vaccinated family, but the clinic where she received her first dose is no longer operating, so earlier this week, I had to source a second Moderna dose for her. She’s supposed to go in on Monday at 10 a.m.

“HOORAY,” you might think. “FINALLY, THE MAJKA FAMILY CAN LEAVE THE HOUSE AND DO THINGS WITH PEOPLE!!!!” And before today, you and I would have been having a celebratory moment together. But today, a daycare worker in central Illinois popped positive for monkeypox, and I’m gonna nope right outta that one. We’ll stick to outdoor, masked hangs for the time being, thanks.

I have both hypogammaglobulinemia (a primary immune deficiency) and multiple sclerosis. I also gave birth in April of 2020. Because of this, I’ve been hyper-vigilant about covid safety for our family this whole pandemic. I’ve been reading studies as they’ve come out. I’ve been reading physicians challenge each other over FB and Twitter. I’ve been watching, astonished, as the Western world has allowed politicians who are more concerned with the economy than the wellness of the citizenry to shape public health policy.

Someone’s gotta say it. The world has lost its damn mind.

Our leaders have purposefully lied to the public, chased after herd immunity that is not possible, and the result has been and will continue to be mass death. The public not only seems perfectly alright with it, but to defend the practice because they don’t enjoy wearing masks and can’t cope with their idea of normal changing.

But seriously, covid-19 infection can cause every single one of my disabling conditions.

But people are pretending that the pandemic is over, despite numbers being high almost everywhere. They continue on with life as normal, acting like getting infected with covid-19 as often as every 3 weeks is not a big deal. I don’t get it. Is their health so taken for granted that they actually don’t care?

I’ve even had friends try to tell me that I should “stop living in fear” and just “get back to living life.” They clearly did not realize that this was already my life. I was staying home before it was trendy because I had to. I can’t drive anywhere, thanks to the seizures gifted to me by MS. I do not need a second helping of all of *wildly gestures* all this.

PEOPLE, YOU DO NOT WANT TO WALK THIS PATH.

Please, wear a N95 or P100 mask anytime you leave the house and will be around other people, and don’t take it off unless you are in a safe place. An indoor restaurant (like a school cafeteria), unless it has been equipped with Far UVC lights and HEPA air filters, is not a safe place.

If I’ve said it before, I’ll say it a thousand times: I would do literally anything to protect my children from having the same health outcomes as I have had. Shit, I wouldn’t wish these conditions on my worst enemy — and these outcomes are only a few of the ways that covid can affect you. “We have the tools” is such a lie. Physicians can’t even agree about whether or not long covid is real. (Spoiler: IT’S REAL.)

In fact, I have now reached out to 3 of the 5 doctors who are a part of my care team to ask about whether or not a prescription for Evusheld would be appropriate for me and whether or not I should go get my 2nd booster (5th shot) now or wait for the updated booster in October. So far, none of them can help, and they don’t even know anything about the treatment. Is this what protecting the most vulnerable looks like? Really?

Maybe we’ll get lucky, and the public will decide that monkeypox doesn’t sound like fun, so they’ll implement adequate protective measures for both pandemics… but recent lived experience seems to indicate the opposite is true.

In the meantime, I’ll be making life as fun as possible while we’re outliving public health policy based in eugenics. I remind myself, every day, when I get upset that the government has essentially thrown us to the wolves, that the most punk rock thing I can possibly do is loudly enjoy myself while persisting despite anyone’s efforts to bring me down.

An Update

Posted in Just Life. by

Things are better than they were, and I think that’s worth recording.

We got things straightened out with regard to SNAP and Medicaid in February, and they awarded us back-dated aid to December. So, we have food and medical coverage. It was a lot more work than it should have been, but we were persistent and meticulous, and that yielded results. I’m glad it’s done.

Life is both wonderful and heavy in many regards right now.

It’s the end of April 2022. Adam just turned 43, and got his PMP certification. In 5 days, Gabrielle turns 2. In 7 days, Henry turns 7.

We’ve been home together this entire time (all 2 years), having minimal contact with the outside world in order to keep us all safe from covid. And overall, we’re doing really well, all things considered. Henry’s due for his booster next month, and the US government has decided to keep twiddling their thumbs rather than inoculate children under the age of 5 in a timely fashion, so God only knows when we will be able to resume anything that looks akin to what “normal life” looked like in 2019.

The idea of “Life before Ellie” as our normal? HA. right. Anyhow.

There are a fair number of challenges that I never anticipated dealing with as a mother. One of them is mask training. I mean, survival is the name of the game, so it only makes sense that it’s a parent’s job. But really, I need to spend some quality time with TikTok or YouTube to learn how to get her to wear it reliably. I figure, if I can get her to leave her pigtails in, I might have a chance of getting her to reliably wear a mask. So far, I can get almost 3 minutes of her tolerating having cute hair. So, we’re sticking to outdoor interactions only with a very select number of people who can and do mask around her.

You wouldn’t think, with 20 million kids being unable to get any sort of protection from the virus that we would be seeing an end to federal mask mandates… but I guess the people in charge figure that children who are too young to mask don’t belong out in public at all. It’s the only thing I can think, because kids under 2 cannot wear high quality masks or take any personal responsibility for their own health, and the idea that kids aged 2-4 can reliably wear masks to protect themselves is delusional. I look forward to a future when my daughter gets to meet other kids her age without fear for her well being or mine.

Through all of this, we’ve been homeschooling Henry, and I have been exceptionally proud of his growth. We got him a journal, and so, his recent handwriting work has almost exclusively involved a daily journal practice. The cool thing is that he likes to remind himself of what he’s accomplished, so almost every page involves him talking about how he’s beaten another video game or level boss. I admire his tenacity and persistence and ambition. My kid goes back to games he’s already won and makes sure he has done absolutely everything. This is especially great when it comes to edutainment titles like Letter Quest or Scribblenauts.

So, really, what I need to do with the time I have right now is to stop writing this and get back to researching how to host an awesome online birthday party, since that’s what I’m doing for him next week. It is absolutely not the time for me to drink from the firehose of history and compulsively scroll for information on the ongoing war in Ukraine or the January 6th hearings or the most recent covid research or info about what I can personally do to affect climate change or tips and tricks for neurodivergent parents raising likely-neurodivergent kids or gardening-at-home-on-a-budget tips.

*deep breath*

Everybody’s home, safe.
Everybody’s happy and loved.
Everybody’s healthy enough.
We’re living with as much ease as we can while we move through this moment.

Apologies for the lack of pictures. I’m out of spoons, and frankly, kind of impressed that I found the time to write this much.

Hope you are well. ❤

How you can help.

Posted in Just Life. by

So, last week I wrote about the faustian nightmare my family is navigating with regard to public aid. I was surprised at the response.

My mom, an educated and compassionate woman, was super pissed. Her immediate thought was that we should get an attorney, and fight the decision. I reminded her that I have a J.D., and that they sent the paperwork nearly 3 months later in order to deny us an appeal.

I asked her, “What do you think an attorney would do in this situation?” and the only real answer is to apply again on our behalf — only this time, we’d be paying someone hundreds of dollars to do the work that I did last time. It doesn’t guarantee that the system will operate as it should. It would just equip us with someone else to lobby on our behalf, assuming we could pay them to do so. (Inadequate financial position is an ouroboros.)

Another friend reached out and offered to buy us Thanksgiving dinner, which was extremely kind, but unnecessary. It also, oddly, made me feel painfully ashamed — like folks may have misinterpreted the point of my last post.

I am not begging for money. Full stop.

I am loudly declaring that I have noticed a specific pattern of corruption in the public aid process that needs to be addressed somehow. The complete lack of dated postmarks from these specific letters is suspicious to me. And when I spoke with my therapist this week, I found out that I’m not even her only client dealing with the exact same problem. (She can talk us through coping techniques for anxiety and depression, but a lack of medical coverage during a pandemic? It’s not pathological worry and sadness. It’s the only reasonable response to a traumatic situation.)

The fact is that we are applying for participation in the public welfare programs we have paid into our whole lives. I do not feel any shame in that. We deserve access to those services, and I don’t think that’s controversial or indicative of any sort of personal failing. The tools are supposed to be there for us… they’re just not being given.

I feel like a canary in a coal mine. Historically, state fuckery always starts with disabled folks. Abled folks need to recognize and address what’s happening before it starts to badly affect them too.

Right now, my family is okay. We have our needs met. What we don’t have is any kind of financial security if there’s a medical emergency. The health insurance we’re supposed to be able to access is inaccessible.

So, if you really want to know how you can help me and my family in the long run, here’s what you can do that will actually help: support universal healthcare and, if you have a hook up for a remote project manager position for Adam, hit me up.

The Institutional Gaslighting Has To Stop

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It’s Week 46 of my writer’s group. Today, I’m supposed to be writing about my DREAM day… but I can’t, because I’m too upset by reality.

To catch anyone up who isn’t aware of our situation: Adam has been unemployed, caring for me and the kids since the week Gabrielle was born in April 2020. When he let HR know that I was being induced, within 24 hours, they fired him rather than giving him the paid paternity leave he had earned. Adam started collecting unemployment, which had a federal pandemic bump that kept us afloat. All unemployment benefits ended at the beginning of September. We are currently living off of our savings, WIC benefits, and less than $800/mo from SSDI.

So, October 26, we received letters from IDHS telling us that our kids were being moved to the Medicaid insurance plan that doesn’t actually pay for anything and that Adam has a spenddown of $150K before he gets any medical benefits. Of course, we’re also denied for SNAP. I’m denied Medicaid at all.  The notice of decision was dated August 8!  So, we received the notice after all possibility for appeal had passed.

Adam called and spoke with a manager who said that we told them that we have $150K in stocks (We don’t!), and that we missed the window for appeal.  Essentially, what happened was that someone on their side of things COMPLETELY FABRICATED A FORTUNE for us and used the fake fortune to deny us our social safety net — and then sent us the notice of denial at a time that was too late to take action against.

Like, the levels of abuse there are manifold: 

  1. Saying we said something we didn’t say in a document that has perjury standards in court.
  2. Denying us food and medical aid based on that fabrication,
  3. Letting us know we were denied a full month after it’s too late to address the problem.
  4. Admitting on the phone that someone must have made a typo, but there’s nothing that can be done.
  5. Telling us the best way to fix things is to apply again, as though someone’s not going to go right behind us and fabricate stuff later.

I want to say this loudly, so that everyone can hear my frustration: WE ARE BEING DENIED FOOD AND MEDICAL CARE BECAUSE SOMEONE MADE A TYPO — AND WERE TOLD THERE IS NOTHING WE CAN DO ABOUT IT OTHER THAN APPLY AGAIN.

THAT IS NOT OKAY.

If it were the first time that I was dealing with IDHS gaslighting in this specific way, I would just apply again and say, “Well, accidents happen!” But this sort of thing has happened more than once. I do not believe that it is an accident, and I wonder why no one has alerted the press. I wonder if I need to be that person.

In earlier years, I have helped my in-laws apply for assistance. Despite meticulous calculations, sending all documentation in hard copy, certified, with return receipt — we saw the same sort of shenanigans with them.  IDHS denied them medical help and SNAP while my father-in-law was dealing with lung cancer because they decided that, even though my in-laws reported over $1000 a month in medical expenses (Remember: Medicare can’t negotiate drug prices!), they had $0 in medical expenses. (Fabrication!) And, just like with us, the notices were not delivered by USPS in a timely manner and had NO TIME STAMP on the envelope on delivery day.

I have gotten to this point, as a person with a law degree who is suffering from chronic illness and poverty, where I wonder if there is any point even asking for help… Advocating for myself and others has become almost impossible because I don’t know how the people who are supposed to help are actually going to fuck us — I just know that they are.

I mean, my baby is on WIC (which gives us a small amount of food for her), and it just cost us more than $300 out of pocket to get her 18 month shots — shots that must happen for her to receive those WIC benefits or attend public school. (Someone make that make sense to me! If a shot is required for something that the public has mandated as necessary, like school, why on earth are we paying out of pocket for it?)

Anyway, my point in writing this isn’t to ask anybody to help us out or just to vent. We are doing well enough in this moment. We have our house. We own our car outright. We have food. We have a plan of attack for increasing future income. My point — my whole reason for writing this — is that healthy people believe that our social safety net both exists and is functioning properly. It is not.

I do not have a solution. I will apply for government help again and hope that this time, we are not victims of a corrupted system. Adam will continue to apply for work, as he has this whole time, and I will continue to do what I can online to involve us in Mutual Aid. We, as a family, will continue to do what we need to do to survive. It’s the only option. I just can’t do it quietly.

I suppose my dream day is one when we can trust our institutions to function as they were intended, for the betterment of us all.

Resistance Training

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I’m sitting here, during week 42 of my writer’s group – one that has occurred in the same week as the 42nd anniversary of Douglas Adams’s Hitchhiker’s Guide to the Galaxy (a work of comedic fiction that I deeply appreciate) – and am having to fight off the urge to be quiet… because quiet doesn’t entertain anyone, myself included.

It doesn’t help that there are several people tugging at me for attention. Taking the hour every week to check in with a small social circle and then sit and write, with purpose, for a short period of time? It’s one of the most important parts of my self care routine. In fact, without it, I wonder sometimes whether I am a self or just RoboMommy. (I am programmed to love, beep borp!)

That is, of course, nonsense. But it’s the kind of nonsense that overwhelmed parents of small children think and then have to refute. I find, more and more lately, that I spend an inordinate amount of time and energy correcting my initial thoughts/reactions to pretty much everything in life. And that is exhausting in part because it is literally always met with internal resistance.

The thinking goes: your initial automatic thought is your conditioned response. Your response to that response is your true self. And so giving yourself a pause – even just a deep breath to let yourself consider things when you’re about to address a situation with a toddler can make a huge difference, not only in your response and ability to tolerate behavior and discomfort, but also in programming your baby’s self esteem.

Asking yourself, several times a day, “Is this something we can clean up/fix easily? Then don’t sweat it!” is simultaneously very helpful and very tiresome. This is, in no small part, due to the messes that inevitably are a part of this dance of acceptance. As someone who struggles with executive dysfunction thanks to neurological and psychological disorders, things can get unwieldy. And the guilt that accompanies unmet personal expectations can feel very impossibly heavy. 

I’ve started to wonder, honestly, how anyone keeps their home clean with a toddler. I’ve decided they don’t. At least, not if they’re in our position, on month 19 of covid lockdown with no help with child care. The idea of a clean home? It’s a myth. It’s social conditioning. It’s not real. Clean homes are ones that aren’t being used for living. The only way to keep them clean is to keep everyone out of them.

And so, I’m trying extra hard to let go of the stress and negative self judgment that I constantly feel internally. I’ve been following KC Davis on TikTok, and she keeps stressing that “care tasks” (the evil formerly known as “chores”) are morally neutral. Reframing spaces as “functional” or “nonfunctional” instead of “clean” or “dirty” has given me the ability to take a break from the internal self-flagellation.

WORDS HAVE POWER.

That’s part of the reason I’m so excited my friend Liz is starting a literary magazine featuring the work of fellow Jewish authors. She’s just opened submissions, and I have til Halloween to send her some poetry.

I wonder if all artists, when called to submit something, wonder if they should just craft something new or find something they’ve already created to polish. I wonder how many times William Shakespeare retooled a sonnet just to try to get laid or to pay for his rent.


Being a content creator is so weird. Like, I know I’m just a vessel for whatever comes out of me. And if I don’t submit or publish, nobody else gets to experience the art. But also, that requires me to legitimize my own work.

Yep. You heard me. For any artist to succeed, they must self-validate.

I think that’s why the act of submitting works has been something I’ve felt intolerable resistance to. I’m not sure which thing feels worse: asking someone to judge your work (the act of which is both subjective and bile inducing in its consideration) or not asking someone to judge your work (and therefore allowing it to die on the page).

What’s always harrowing is wondering who is judging your work and why their opinion matters (or should matter) to you. At least in this situation, a dear friend is starting a passion project. I’d be a fool not to show her my support by participating.

BTW – if you are also a writer and Jewish, and you want more information about her project, ping me. I will absolutely get you connected.

Anyway! The point of this post was supposed to be about how challenging your resistance is almost always the way forward. I totally forgot to write the paragraph about how resistance training works in bodybuilding. lol. Whoops. If you know, you know. And if you don’t, now you do.

Right now, I’m resisting some necessary self care. I need to go make myself eat lunch. I’m taking way more time than I intended, writing this, and Adam’s being a very good sport about it.

I hope you have a good week. I aim to write more next Friday. I’m also strongly considering starting at the beginning of the Tao again and seeing how it hits at this phase of life. ❤ Not sure why I feel a transition so strongly on the horizon… but I do.

I have no idea what I am doing.

Posted in Just Life., Multiple Sclerosis, Spirituality by

Week 41. That’s where I am with my Friday writers’ group. Today, we’re supposed to craft an essay around our favorite childhood memories. I have, instead, opted to actually post in this blog — something I haven’t felt called to do in quite some time. My inner child was all about some good stories, so I’m certain she’d approve of my choice to pick up my digital pen in a place where someone else might actually get the chance to read the work.

Today is October 8, 2021. There’s nothing particularly special about today. It’s beautiful outside. 67 and partly sunny. Things are joyfully normal at the moment. Henry and Gabrielle are upstairs with Adam, and I’m in the basement on a Zoom call with some of the best people I know, writing together, separately.

I’m 2 days out from having taken a 6-day medrol dose pack for what appears to be a near-yearly beginning-of-October MS relapse. This is knowledge I came to thanks to FB memories. Reviewing my memories earlier this week showed me that I had a MS relapse 6 out of the last 10 years around this time. So, it looks like better than 50/50 odds that, in the future, I’m going to be feeling like shit on my anniversary. Considering that I had a flu-like virus and seizures at my wedding and still sang and danced and had the best day of my life, it only figures that our anniversary would remind me that having a good time has more to do with attitude than anything.

At the moment, my body feels normal. I’m no longer dealing with crushing fatigue or numbness on parts of my left side (back of the arm and chest most pronounced, which were the first symptoms that caused me to go to urgent care and end up with a diagnosis in 2007), and I haven’t noticed any seizure activity yet today.

Earlier this week, was, if I’m going to be honest, a total shitshow of pain (physical and emotional), memory issues, PTSD flashbacks, nightmares, and personal growth. I’m so grateful for corticosteroids, EMDR home practice techniques, and music.

And I’m grateful for TikTok, though I’m terribly slow to figure it out.

Recently, I’ve been watching it in the mornings and at night while medicating. (I smoke MMJ these days to help with seizures, MS pain and muscle spasms, and PTSD/anxiety/depression. It helps more than other medications have, but I’m strongly considering starting to buy RSO and making coconut oil capsules because I want to feel more in control of the dosage of my medication and to not be causing my voice damage. I’d buy the edibles at the dispensary that are already ready, but they all contain sugar. WTF is up with that? Like, if you’re making medicine for people with seizures, maybe, like, consider their potential diets. Just a thought.)

Anyway, TikTok has been an amazing resource for meditation. So many people make singing bowl videos or affirmation videos. I haven’t bought into the “Law of Attraction” (and I never will, because I understand the victim blaming part of that mentality, and I am not buying into a spiritual way to berate myself for existing in a way other than I would prefer), but affirmations are a science-backed way to help yourself create new neural pathways when you’re choosing to improve your self-esteem and change how you talk to yourself.

Sure, I don’t believe that “I am healthy, I am wealthy, I’m the shit, I am that bitch” –YET, but one day, I’ll get there. One TikTok video suggested putting “What If” before affirmations that feel like bullshit to help you consider the possibilities.

What if I am a bad bitch? What if I am, in fact, the baddest?

There are also a double fuckton of people just busking on there. I’m not going to pretend otherwise: it makes me want to do the same thing. I mean, could I go live, practice an instrument, and just let people send me money? Can life be that easy? IS THAT ALLOWED??? More importantly, can I allow myself to do so? I haven’t busked since Berklee.

One of the biggest downsides of being diagnosed with CVID has been a fear of crowds. I mean, it’s hard to want to perform in a venue (even not during a global pandemic), for an open mic night when you’re immune compromised. But where’s my excuse when I can perform from home whenever I want?

Of course, it also helps to have a seemingly endless parade of videos in my FYP (For You Page) encouraging me to make and post content. Need a pep talk? TikTok has your back. I have saved some of my favorites. I know they don’t know me! Do I care? NO! DIVINE ENERGY IS TELLING ME GOOD THINGS, AND I ACCEPT THE MESSAGE.

Do I love and interact with every single singer-songwriter, harmony stacker, poet, artist, or D&D nerd that comes across my feed? YOU BET YOUR ASS I DO.

Do I make ridiculous 1-shot videos with a goofy beauty filter to help encourage other people too? Um, yes. I very much do. In fact, I am low-key cosplaying as a bejeweled goddess of inspiration because it makes me laugh. Who needs a book and dice to play make believe? The whimsy is strong in me when I see the filter. It makes me feel playful, so I let myself play. And allowing for play? That’s sort of new to me – and a sure sign that I am conquering depression in the moment.

Yesterday, I read some of my first entries from this blog, and they made me laugh and have bittersweet feelings. I have grown and changed so much. I’ve been deeply committed to being who I am and doing what I can with life, despite my limitations, and that hasn’t changed.

In fact, it’s really cool to be able to look back over it. I wish I could send a love-bomb back in time to the Rae who was coming off of Cymbalta and Abilify at this time in 2012. That shit was super hard. It caused nearly constant suicidal ideation — but I’ve learned to treat the persistent, unwanted thought like sneezes most times. It doesn’t feel like an emergency. Probably because of the number of times my inner response to it has been, “Thanks for your suggestion. Our operator is currently busy. Death is inevitable. We thank you for your patience.”

I could never have envisioned the life I live today back then. Sure, I’ve had a lot of setbacks, but ultimately, I’ve been so successful. It’s impossible to look into my children’s eyes and feel any other way.

Gabrielle blowing raspberries.
Awwww, raspberries!!!

Happy New Year!

Posted in Just Life., Keto Diet by

Hard to believe that it’s already January 5th, 2021. I’d say “Time flies when you’re having fun,” but while it’s only been 4 months since my last post, it feels like a year at least.

Living through this pandemic and the political shenanigans of the day is exhausting. The absolute fire hose of relevant information about the virus and “WTAF” stories regarding law and politics is tough to endure simultaneously. It takes real effort not to tune all of it out, since most of the really awful shit is stuff I personally have no ability to affect. Since March, 365,000+ Americans have died of COVID-19, police officers still have qualified immunity and frequently kill folks (especially Black folks) with impunity, and the concentration camps still exist with almost no oversight.

Tomorrow is January 6th. That’s the day Congress is supposed to officially declare Biden as our next president. It’s also the date of a planned protest to “Stop the Steal” in D.C. Nutjobs on the far right insist that their candidate won, despite overwhelming evidence to the contrary, and these same folks, who call themselves “patriots” and claim to love America, are beating the drums of violence and clamoring for civil war.

Like, settle down, guys. Biden will definitely pander to the oligarchy too. Don’t go lighting yourselves on fire to stop other poor people from having food or medicine. We all know how important it is to you for Bezos to get a new super yacht, but it’s not worth all this. He isn’t gonna share it.

On a personal note, which is most likely why you’re even reading this, Adam, the kids, and I are all doing alright. My neurologist has confirmed that my MS is still stable. (6 years, no progression!) I’ve joined a writing group that is meeting once a week in an effort to get back to this art form. I’m not sure if it makes more sense to write a book or to write here, but I figure, as long as I’m writing something I’m headed in the right direction.

And speaking of heading in the right direction, I took a few minutes to look at my blog’s statistics, since I’ve written here for more than a decade. I have to say that I am amused by the fact that my most popular posts are ones that I feel are the cheapest. People end up finding my blog because they’re looking for paleo recipes by Food Network chefs or because they’re looking for a dominatrix in Philadelphia who happens to use the same moniker that I chose for a one night show in Los Angeles in 2006. Ridiculous, ehh? Maybe I should take that post down.

For the last year or so, I’ve been kicking around the idea of creating a new blog — one devoted to the keto diet. My mind won’t let go of the belief that I have skills that could somehow be exploited for my family’s financial gain. I don’t know why that still matters to me, but it does. Is it internalized ableism? Is it simply survival under capitalism? Yes and yes.

I’m just not sure that I want to deal with everything that would go with it, since blogging isn’t just blogging anymore. It’s running groups on Facebook (and other social media), keeping an active Pinterest page, posting videos on Instagram and YouTube and TikTok, managing advertisers and storefronts with multiple online retailers, writing and publishing ebooks, and eventually publishing cookbooks and promoting them at real book stores. Just thinking about it is overwhelming — especially considering I can’t remember the last time anyone over the age of 5 got enough sleep. If I did it, I’d need plenty of help from Adam. He takes better pictures than I do, actually cooks most of our meals, and is the yang to my yin in every regard.

I am, quite truthfully, doing the best I can right now, so I probably should just calm down. It would be stressful enough going through this time if I were healthy, but we both know my difficulty modifier is nothing to sneeze at. I just can’t ignore the feeling that it’s a good time for me to leave notes for others who will walk a similar path. Or that this is all just stuff my future self will smirk at when she reads.

Regardless, you can expect more stories and recipes soon.

Henry hugging Gabrielle in her high chair.
These two: my reason for, well, everything.

Meet Gabrielle

Posted in Just Life. by

On April 27, I gave birth to a beautiful baby girl. I almost died immediately afterwards. Turns out that VBAC wasn’t the best choice. The placenta had adhered to my internal c-section scar. It took 3 hours of doctors pulling clots out of me and applying a bakri balloon for a whole 24 hours to stop the hemorrhage.  Totally worth it for this girl.

It’s now been 4 months, and I’m still amazed with her every day. Unfortunately, it’s also meant very little sleep (translation: increased seizure activity) and even less time to write. It’s tough to try to focus on chronicling motherhood with multiple chronic illnesses while in the thick of actually doing the damn thing.  I’d much rather spend my time enjoying these smiles.

One day, probably sooner than I expect, I’ll get back to writing here the way that I used to. But for now, I’ll be busy homeschooling Henry (who would have started public school kindergarten if not for COVID-19 and instead is already halfway through 1st grade math using Prodigy and burning through books recommended to us by Torchlight.), tending to this beautiful baby, and doing the best I can to be a good partner to Adam (who has been an incredible partner to me through all of this).

I hope you’re all doing as well as we are. ❤ Please stay safe.

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.