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.

Good Enough.

Well, 6:30 a.m. rolled around this morning, and Henry decided that since Daddy was very obviously awake, he needed to be doing things too.  I would still be cranky about this if not for the fact that he is, mercifully, napping right now, which puts us on schedule for him to attend a Gymboree class at 12:30, assuming it doesn’t rain.

You know, life is funny. When you’re little, you rage against naps and against sleep. Fear of missing out is so strong that you can’t even comprehend why your parents want you to rest.  As a grown up,  I know that what I’m actually missing out on most of the time is… a restful nap.

The irony that I could be taking one right now instead of writing is not lost on me.

Ghosts of the Past

Social media never ceases to amaze me. Several days ago, I got a friend request from someone who used to be my best friend in the whole world.  When I say “used to be,” I mean that it’s been 25 years since I last saw her. We went to elementary school together, and after my family moved to Collierville, for all intents and purposes, I never saw anyone from elementary school again, and I was more than okay with that.

See, I went to a prestigious (read “snobby”) private school.  From 2nd-6th grade, my daily thought processes were consumed not primarily with learning, but rather, with an unrelenting psychological struggle for acceptance. On the one hand, I would desperately try to convince a bunch of rich little girls that I deserved acceptance, despite being of a different religion and socioeconomic background than almost all of them — and on the other, I would desperately try to convince myself that their acceptance was completely meaningless and empty.

In my ideal imaginary world, where I never ended up with MS or seizure disorder, I’d have made my mark by now as a rich and powerful entertainment attorney who also just happened to be happily married, beautiful as an adult, and energetic enough that I could still perform music on the weekends — you know, just for fun.  I could totally talk to the girls I grew up with and be like, “See. I am your people. Aren’t you glad you grew up with me now?”

…but I’m not.

I’m a disabled stay-at-home-mom who writes sporadically and doesn’t wear pink on Wednesdays. Mercifully, I’ve not only come to terms with that, but I’m actually pretty proud of it. It took years to get healthy enough to have Henry, and it takes concerted effort to carve out time to write.

Surprisingly enough, after I accepted her friend request, I found myself worrying about whether or not my life was “good enough.”  I openly questioned whether this person genuinely wanted to rekindle a long-lost friendship or if she was going to be headed to a reunion and she wanted some good gossip for everyone.

A day later, another elementary school classmate requested friendship, and I had to really consider whether or not I was going to accept.  It’s not like this request was from a former bully. This woman was the nicest (and prettiest) girl in class, and I didn’t even have an inkling of bad intention on her part — which really gave me pause.

In that moment, it hit me square in the face just how toxic and deep my shame is over the direction my life took after I was diagnosed with seizure disorder… and I had to figure out both why I was shaming myself and what I could do about it. My life is not a trainwreck people can’t help but stop to look at. It’s performance art.

Turns out that despite all of my years of growth as a person, my inner child is still classist, ableist, and misogynistic. She attended enough ballet classes, watched enough TV, and read enough magazines to know that she’s only pretty if she’s thin, important if she’s rich or in a position to help someone else social climb, and worthwhile as a person if she’s “contributing to society” through paid work, glamour, or widely-accepted art or music.

It’s a damn good thing that I’ve grown past those old ways of thinking as an adult.

So Much More Than Good Enough.

I accepted both friend requests, and I’m glad I did. It’s cool to know that my old bestie and the girl I was most impressed with while growing up actually care to know me as an adult. I’m curious to see who they’ve become too!  We’re all mommies now. That alone changes you a lot.

It’s even cooler to know that the good side of my early-life struggle finally won out. I give zero fucks about what other people think of me at this point. I would actually give negative fucks if that were possible. (Like, my fuck deficiency is so pronounced that I could really use some of yours. I might have to declare fuck bankruptcy.)  I’m also entirely certain that my father, upon reading this, will pump his fist in the air, and think, “That’s my girl.”

What matters is what I think of myself… and my record for awesomeness is pretty good. I’m well educated in interesting topics. I’m relentless in the pursuit of bettering myself as a person. I engage in community service, and I make an effort to have fun too. I’m raising a kid who’s not a little asshole, and my husband still grabs my butt after 10 years.

Altogether, I know that I am more than “good enough” for myself, even if I have to remind my insecure inner child of that. I try hard to be the kind of person I’d want to hang out with. And sometimes, that person needs to be someone who reminds you of how special you are.

I’m happy that these very old friends unintentionally gave me the opportunity to take a good hard look at the life I’m leading. I’m even happier with what I saw… because, really, how could I be anything but happy when I get to see this face all day?



News of the Rae

Today, I was thinking about how much I miss actively participating on LiveJournal. What I really have been missing is reading about what’s actually going on in my friends’ lives (as opposed to looking at memes about politics, sarcasm, and incorrect grammar), and writing about what’s going on in mine.  Twitter and FB are absolute shit for emotionally meaningful communication, and the only way for me to remedy things is to do some writing myself and to reach out to friends on the phone or Skype.

Medical Insurance Is A Lot Of Work

This week has been fucking crazy. I’ve gotten calls from almost every medical care provider I’ve worked with in the last 3 years because Humana was given incorrect information by BCBS of MN with regard to my coverage, and they sent out letters to those providers requesting a refund of the money they paid for my medical care.  You can just imagine how many providers I’ve seen in 3 years with my health being the way it is. Needless to say, a tiny mistake turned into a ridiculous clusterfuck (and one hellacious panic attack) for me.

See, BCBS does identification numbers weird.  Our family has 1 identification number and 3 member numbers, one for each of us. When CMS (Centers for Medicare & Medicaid Services) and Humana asked BCBS how long I’d had coverage, they only provided the identification number (because, apparently, all the other insurance companies have unique identification numbers for each person), without knowing that there were 3 members under that number. This lead to a simple, but unfortunately large, misunderstanding, since Adam’s had BCBS since 2011. It also lead to about 30 minutes of actual talking and 4 hours of sitting on hold to clear this shit up.


So accurate that it hurts.

In the end, it all boiled down to BCBS needing to fax a letter to both Humana and CMS letting them know that my coverage only started in January of this year. I just had to call back and forth between the different organizations and talk to different CSRs, explaining the situation over and over again. (For the record – customer service at BCBS is much faster to get a hold of and to work with than that at Humana.)

But I learned important things!  Like that every insurance company has a department devoted to the coordination of benefits, and that if you are on Medicare or Medicaid and you purchase private insurance or change providers, you absolutely must call CMS (at 1-855-798-2627) and also let their coordination of benefits department know, so your billing doesn’t get all jacked up.

I also learned that if you have Medicare (or Medicaid), and you choose to purchase another policy from a private insurance company, then the private insurance will always be your primary insurance, and Medicare (or Medicaid, or whatever other state-based insurance) will be your secondary.

Pharmaceutical-Grade Supplements Are Totally Worth It (For Me).

Also filed under “crazy” this week (but in the crazy GOOD category), I weighed myself after 2 weeks on the diet and supplement regimen prescribed to me by the endocrinologist I saw at BodyLogicMD.  I lost 7 pounds!  That’s a tenth of how much I want to lose, and it happened without any frustration.

This may not seem like the biggest deal in the world to anybody but me, but I seriously have been trying to lose weight for years with no success. I went paleo for months at a time. I weightlifted. I tried South Beach. I tried doubling my cardio. I tried calorie restriction, eating 1000 calories a day or less for a couple of weeks.  I  GOT PREGNANT AND HAD A BABY, and still had no change. (I seriously gained a total of 18 pounds with the pregnancy and lost 10 of it when Henry came out, and went right back to the same weight I had started at within a week.)

But now, I have movement on the scale, and all I’ve been doing is taking the supplements (prescribed based on deficiencies that showed up in my bloodwork), eating small meals every 3 hours (just like during pregnancy), drinking at least 64 oz of water a day, and not eating bread or pasta. I’ve been eating rice. I’ve been eating potatoes. I haven’t been working out. And the weight just  disappeared.

Another bonus: I have a ton of energy that I haven’t had in years. It’s amazing to me. I didn’t even expect that it would affect my fatigue… but it has.  There have been days where I didn’t even feel like I have MS. I mean, I went 2 whole weeks without an energy drink, or even 2 cups of coffee.  I don’t think that’s happened in the last 10 years.

But What About BioIdentical Hormones?

The doc at BodyLogicMD also prescribed me some bioidentical hormones to help with MS and seizures.

Based on the studies on estriol that have come out of UCLA, she put me on an estriol cream. It looks like it should be as effective at staving off relapses as Copaxone, at least for the first year.  I start it tomorrow.  I’m hopeful that it will be just as good as a DMD.

I’ve been very lucky not to have any progression since coming off Gilenya in February of 2014 to conceive Henry.  Dr. Javed wants me back on something if we’re not actively trying to conceive, but I have yet to try a disease-modifying drug for MS that isn’t somehow worse than the disease itself — so I’m keen to give Estriol a try, since the second and third trimesters of pregnancy were very much like a vacation from MS.

I’ll be starting a daily progesterone pill on Day 12 of this cycle to help combat catamenial  (read: caused by hormonal fluctuations around menstruation) seizures. When I was pregnant, I went for months at a time without a seizure. It is my most profound hope that I can return to a life where seizures are a “sometimes” thing and not an everyday occurrence.

I’ll be sure to let everyone know how these therapies affect me.

But for now, my honey just got home, and I wanna go give him kisses. ❤


Every Monday Deserves Corgis.

Happy Monday!

mondaycorgiToday, I’m trying my best to have a good day and to stop thinking about the fact that today we should hear back from the bank about the house.

Obsessing doesn’t help anything. We either have it or we don’t. Still, the truth is that I’m both excited and scared. Homeownership is both super cool and potentially difficult. I keep thinking about how we’d set the place up, where our furniture would go, and what work we need to do on it… I both keep thinking about how great it’ll be to have our own place with enough rooms that we could have 3 kids and still be comfortable and how incredibly worried I am that we somehow won’t be able to afford it — even though I did the math and know for absolutely certain that it’s in our price range. The fear is totally irrational but intense.

Truth be told, I’ve gotten very comfortable at our current apartment. I like where we live. It’s big enough to not feel cooped-up when you stay there for days on end and small enough that it’s easy to keep clean. I know how to get around here, and I like the gym we go to. All of that might be changing. I honestly think I’m more afraid of the change than anything.

I Want The Crown!

Tomorrow, I have a rare double-neurologist visit. I’m seeing both my MS specialist and seizure doctor at the same time. Usually, I would be excited by this, but I have been lucky — nothing’s really been out of the ordinary for me, recently. I am aware, however, that my “ordinary” is anything but. I know it’s important to keep the doctors in the loop about everything, anyway, and not to sugar coat things just because I’m handling them well.

I don’t know if anyone else does this, but I have a terrible habit of showing up to neurology appointments and smiling through them and saying I’m fine… like I’m auditioning to be a contestant on America’s Happiest Cripple or something. Doing this helps exactly no one. It’s like on some sick, subconscious level, I’m trying to get my doctor to like me. I honestly feel more of an instinctual need to hide my infirmity from them than I do towards anyone else. It’s messed up. The worst thing to hear from a doctor (which I have heard countless times) is, “You’re complicated.” or “Your case is challenging.” I don’t want to be a challenge or a bother. I just want to be better, and for doctors to stop grimacing when they read my chart.

Hello, is there anybody in there?

(Why, yes, I am referencing a Pink Floyd song.) I’ve been feeling kind of lonely recently, and I realized it’s because I’m not really connected with my friends anymore. I mean, we post memes and occasionally chat on Facebook, but there’s rarely deeper conversation.

I started blogging about 12 years ago on a platform called LiveJournal. I made some of the best friends I’ve ever had through that service. Most of them, I still keep up with over Facebook. But I realized, the other day, that I’m really missing the deeper level of communication that comes from sharing your life through blogging, so I re-joined in the hopes that I could regain that closeness with them. I was saddened to find that only 2 of my friends still regularly post there.

I wonder how many of my friends still blog at all, honestly. I only usually read what people cross-post to FB, and that’s not much. I should probably make more of an effort if I genuinely want the deeper relationships that we used to have. That might even mean emailing people directly to see how they’re doing, or, God-forbid, picking up a phone or using Skype to have an actual conversation. (Crazy, right?)

Speaking of making an effort, I have got to get up and get off the computer. If I don’t get dressed and go to the grocery store, we won’t have dinner at a reasonable time tonight, and that would suck. I should also probably eat some lunch, because, you know, eating is a good thing.

BTW — I asked my FB friends for suggestions for delicious weeknight meals, and I got several great recipes. I’ll be sure to hook you up with them tomorrow.

And the Awesomeness


Three Great Things About Yesterday
I’ve been doing Three Great Things About Yesterday for over a year now, but it’s only just made it to this blog. I have to say, I end up with the best insights on days that, for whatever reason, pretty much sucked. The toughest days to come up with 3 great things for are days like yesterday, where nothing particularly good or bad seemed to happen. It was just relaxing. Still, you gotta look for the good, so here goes nothing.

  1. Accidentally found a kitchy, adorable coffee shop while waiting for a table at the Bongo Room. It was full of 80s movie memorabilia and couches. There was a mock Back to the Future Delorean parked near the ceiling and a replica flux capacitor on the wall. I don’t mind that the coffee is overpriced if I am that amused.
  2. Enjoyed a new episode of my favorite soap opera, TrueBlood. (Interestingly enough, the folks at HBO have created a blog that’s “written” by one of the characters on the show. It’s a pretty decent time-waster.)
  3. Deeply appreciated spending time relaxing with Adam. Loving that man is my joy.

What made your Sunday special?
Daily Cute

Somebody loves his teddybear. ❤
Everyday Earbug

I’m really digging this song because it both makes me want to shake my butt and laugh it off. I mean, how can you not be amused by TwerkBot?


Make The Most Of Every Day.

Nothing throws your worldview into sharp perspective like losing someone you care about.

This morning, one of my friends from college died. He was only 35. He also happened to be the best guitarist I’d ever heard play (in person) in my entire life. And that’s saying something, honestly, because we went to Berklee College of Music and there is no shortage of amazing guitar players there.

Officially, the cause of death was that they couldn’t get his blood to clot… but he was in the hospital in the first place because of health complications caused by alcoholism. He’d struggled with it for years, but the last time we’d talked, he had things under control.

Alcoholism and RRMS are similar in many respects. You have to deal with them for the rest of your life. There are times of remission and there are times of relapse. It’s a rollercoaster you can’t get off or ignore. Alcohol addiction is a disease… it’s not all about choice. It’s actually a neurological disorder, just like MS. Unlike, MS, however, alcoholism will absolutely kill you. Alcohol doesn’t care who you are or what you do. It just poisons you. It just fucking sucks.

Shane’s death especially sucks because of how much inspiration he gave others just by being himself. He was a rock star. Literally. He played guitar on tour for Korn! He had 2 awesome metal bands of his own, Schwarzenator & stOrk that played in Los Angeles, and he taught guitar lessons to folks all over the world using Skype.

I remember meeting him. He was practicing guitar, sitting outside the classroom before ear training. I thought he was way too hot and talented to talk to. Fortunately, he didn’t think I was unapproachable. We even had mutual friends, and it was only the first week of our freshman year. I got to know him, and found out that he was just as big a goof as I am. Actually, goofier at times. 🙂

When I made the switch from percussion to voice, it was Shane who helped me get over nearly crippling stage fright. He didn’t tell me to think about people being naked. He didn’t tell me to stare at a place on the back wall. He didn’t even tell me to pretend that I thought I was awesome. He said (and of course I’m paraphrasing), “Everybody here (Berklee) thinks they suck. That’s why we practice so much. Focus on the music because that’s what it’s about. It’s not about you.”

When I was totally confused in Harmony 4, Shane was the one who explained chord scales to me. I never would have graduated without his help. Heck, aside from ear training and harmony classes that we had together, the guy sat next to me at our college graduation and walked right behind me when we were picking up our degrees. I told him that he should wear pink more often. 🙂 (When you graduate with a degree in music, you get a pink sash to wear.)

8 years after graduation, in what felt like another lifetime entirely, I was lucky enough to spend some time with him again. He helped me learn to play guitar and encouraged me to keep at it, even when I was dealing with the worst part of learning to live with seizure disorder. I remember feeling so embarrassed while I was seizing in his living room. He reminded me that he graduated with a degree in music therapy, and that I wasn’t the first person he’d seen have a seizure. He said that if anything can help me feel more “in control,” it would be practicing.

I feel very lucky to have had him in my life.

Random Message Generator: For The Win

There’s this random message generator on Facebook called “God Wants You To Know.” Occasionally, I click on it for shits and giggles. I do this because I very firmly believe that everyone and everything in creation is God. God is, in my mind, comprised of the totality of existence. Because of that, I find myself smirking at this random message generator, occasionally thinking that maybe it *is* telling me what I need to know at a certain moment.

Today, its message was this:

“[I]t’s time to STOP going through the motions of living, and START living.”

If that wasn’t a bit on-the-nose for today, I don’t know what is. There’s nothing like the death of a friend to remind you both of your own mortality and the importance of living each day to the fullest.

Sometimes, while dealing with MS and seizure disorder, making goals and being creative feels impossible. I think it’s important, though, that we never let ourselves stop dreaming.

Daring to Dream

I know that I try to live every day the best that I can. Sometimes, just existing is a tough gig. But just existing isn’t why we’re here.

My dreams right now are fairly straightforward, and I’m doing my best to achieve those dreams.

I want to be a mother. Been working towards that for a couple of years now. Day after tomorrow, I actually have an appointment with a high-risk pregnancy OB, and I’ve just finished my last pack of birth control pills. The only medication left to stop before conception is Prilosec, and I’m probably gonna stop taking that at the end of the week.

I want to travel. There are places I’ve always wanted to go, and one of the best things that Adam and I made when we were dating was our “world tour” plan. Sure, it’ll take a lifetime to see even half of the places on our list, but I’m game to try. I want to see New Zealand, Australia, Italy, Greece, France, and Japan at some point. I wouldn’t hate spending more time in the tropics either.

I want to be happy with my body. I say this as someone who has felt like she has been at war with her body since elementary school. I go to the gym any day that I’m well enough to do so. I struggle with what’s “right” to eat. I hate looking in the mirror. I feel like a weirdo when I wear makeup, but I feel like I’m supposed to wear it or else I’m not feminine enough. Body issues blow. It’s a genuine dream of mine to one day be happy with my body as it is.

I want to create art of lasting value. I don’t know whether or not this blog counts as art. More often than not, it feels like some sort of confessional. I songwrite from time to time, but I stubbornly refuse to write out the music to any of it. I feel like the computer should be able to “hear” it and make the notation happen. I can’t explain it. It’s a weird bit of resistance that I’ve struggled against since high school. More than that, though, I don’t know if my songs are a real contribution to the world. Maybe my big contribution is a novel. I’ve started and tossed 3 books so far, all of them with about 3 chapters written. Hell, maybe my future kids are the real art project. Whatever the case, I just want to be remembered for something good.

I want to inspire people to live life as well as they possibly can by living my life as well as I can. I want for folks to be able to say that because they knew me, their lives were better. I don’t want to always be complaining about MS. I want to be able to show people that they don’t need to hold themselves back from happiness because of chronic illness.

Those aren’t even close to the dreams I had as a kid. Back then, I wanted to be a rockstar. I wanted my music to magically change the world into a kinder and cooler place. I wanted people to carry my songs in their hearts.

In college, I saw how many incredibly talented musicians had the exact same dream as me… so my dream changed. I learned all about how the music business worked. I wanted to start a business that would revolutionize the music industry. I wanted to promote indie music until it became mainstream. I wanted to be a multi-millionaire and to have enough money to be able to make lasting, positive changes in politics.

When I was in law school, I wanted to be able to protect people who couldn’t protect themselves. I wanted to make it possible for folks who had the talent, drive, and passion to create art to do so without fear of being screwed over. I wanted to enable people to film their movies and record albums.

My dreams nowadays seem banal in comparison. I just really want to be happy and healthy. And I don’t think that’s necessarily a bad thing. I think, instead, maybe it’s a sign of maturity.

Today, I’m just really grateful to still be alive. When I consider how many times I’ve struggled with suicidal ideation, I’m grateful for all of the love and support that kept me going to therapy until I conquered it. I’m grateful to still have the chance to make a positive difference. I’m glad to be living the life I have, and I’m going to keep doing my best to make the most of it.

In Another Life…

There are times when I reminisce about my life and feel like it barely belongs to me. Like “Past Rachael” and “Present Rachael” come from 2 completely different places, are 2 completely different people, and the resemblance to one another is so faint that people wouldn’t even realize we were related to one another, let alone the same person.

This morning is one of those times.

Today, I logged on to Facebook and saw photos of the wedding of someone who I used to call my best friend. She was the best roommate I’ve had in my life (next to Adam, of course), a bridesmaid in my first wedding, and someone whom I deeply respect and admire. And I found out that she got married, not by an announcement in the mail or an email from her, but by seeing pictures of her wedding posted on Facebook by mutual friends.

It hit me at that moment that she probably doesn’t even consider me a friend anymore. We barely know each other now.

“Rachael From Way Back When” rocked. Literally.

When I think about who I was when I was close to this person, I get almost mournful… not just because I miss the friendship (I do), but because I miss who I was and how I thought about myself back then.

I was at Berklee College of Music, had just switched my principal instrument from percussion to voice, and had declared a major in music business. I was songwriting with a very talented partner (whose friendship I kind of fucked up while going through therapy to treat PTSD), and still believed that I could change the world through music. I was going to be a rockstar — I just knew it.  I went to live music shows, worked my ass off in performance labs, and didn’t believe I could make bad choices.

But I could. And I did.

And in the midst of those bad choices, I did some pretty amazing stuff. I started Greek life on campus, bringing a professional co-educational fraternity for people in the creative and performing arts to Berklee and the Pro-Arts Consortium.  I constructed and shopped a $5 million dollar business plan that I thought was going to revolutionize the music industry. (Some of the things in my plan were actually implemented by CDBaby after our 2 year non-disclosure agreement was complete.) And I did a lot of unpaid work in internet radio.

I didn’t believe in failure. Or rather, I wouldn’t accept failure, in any circumstance of my life – even when there were times where I should have walked away from situations that were terribly negative for me.

If that version of “Past Rachael” were to hear about the life I’m currently living, she would have freaked the fuck out. And not in a positive way.

I remember, when I was first diagnosed with seizure disorder and was having time-travel with my cognition, waking up, thinking I was 18 again and being in complete disbelief that (1) I had graduated from law school  (I always thought that it was too much hard work) and (2) that I was in the process of studying for the bar exam.  My thought was always, “But I was going to be a musician. I sold out.”

That Time When I Sold Out…

I don’t remember exactly when I decided that making money was more important than making music… but I know I was still in college. I think it was during a film scoring class, when the professor said that a film scoring graduate would be lucky to make $25,000 a year. I declared my major in music business the next day. And the longer I took music business classes, the harder I worked at web and graphic design, on that business plan I talked about, and less on practicing any kind of music.

The future well-being of “my family” (and children I didn’t have) meant more to me than music.

Fast forward to 2005: I was living in Memphis and had just gotten divorced.  Life was beginning to teach me that it is very possible to fail at things that are important to you, despite how much you try to succeed.

At that time, I had a wonderful job with a fantastic, friendly boss and coworkers who I genuinely enjoyed and respected.  I could even afford the mortgage on my own house. But something about getting divorced threw me into a headspace that said, “You’ve got to do better than what you’re doing now. You never want to be dependent on anyone else ever again. Become a professional.”

So, I studied like a madwoman for the LSAT and I went to law school in Los Angeles, thinking I could return to the music industry as an advocate, even though I had said at least a million times before in my life, “I don’t ever want to be a lawyer.” I watched how life as an attorney had drained the happiness from my father during his years as a prosecutor.

But, it became more important to me to be independent and be able to support “my family” (that I didn’t have) than it was to stay at a good job, in a city filled with friends.

“Past Rachael” was tough as nails.

Law school was stressful. That, of course, is a magnificent understatement. I took at least 15 credits per semester, had a workstudy job, and tried to be as active in the student bar association as I could. I took on “extracurricular activities” that made life much more colorful.  I lost 70 pounds. But it never was enough. I was always pushing myself to do more, and was looking, constantly, for “Mr. Right.”

Adam (yes, THE “Mr. Right”) found me, however… 2 weeks after a breakup with Mr. Amazing-but-not-for-me… and for that I am profoundly grateful. It was the first time when Life tried to teach me that things can go very right when you’re not even trying.

I was 2 years into law school when I was diagnosed with multiple sclerosis, and Adam and my mom held my hands as the doctor told me.  Crazy thing: I wasn’t upset by the news or afraid for my future. I just wanted to treat the disease and get on with my life like nothing had changed. I honestly didn’t think anything had changed.  It really hadn’t, yet.

I was absolutely determined to finish law school, despite the symptoms of MS and the seizures that we thought, at the time, were narcolepsy. Again, I had decided that failure was absolutely not an option.  That stubbornness suited me well. I proudly graduated in May of 2008, and started preparing for the bar exam, studying 8-12 hours a day.

On Thursday, July 10, 2008, the question of whether or not I would succeed at becoming an attorney in CA was completely removed from my hands. I had my first grand mal seizure, in the the kitchen of our apartment, while I was doing dishes.  The next day, my mom came in town from Las Vegas and took me to my primary care physician.  I had another seizure in the office, and the next thing I knew I was at a hospital, handwriting my last will and testament as fast as I could before I had another seizure.

I regained consciousness/memory 8 days later. (Though I have heard stories about that first week in the hospital and how I was just constantly spewing legal knowledge the whole time… which is kind of embarrassing.)  The bar exam was 2 weeks away, and I was actually trying to bribe orderlies to give me my notes. The words out of my new epileptologist’s mouth were simple, “Relax, you can take it next time. For now, rest.”

Dark Times

In the months that followed, I faced some of the worst emotional pain of my life, dealing with pseudoseizures caused by PTSD: I was unearthing and reprocessing repressed memories about terrible things that had happened in my life. EMDR let me “time travel” back and sort out some very bad lessons that I had learned about myself and life.

To be honest, the work I did with Ann (my therapist) was invaluable, but we only met once a week. Between sessions, I was an absolute trainwreck of a person. I shook half the day, smoked weed the rest of it, but I was still studying all day long for the bar exam… (and taking it, and failing it. Twice.)

It was during this time that I feel like I actually lost my mind. I was mean to people who didn’t deserve it. (Like the friend I songwrote with at Berklee, for example.) I was unable to control my emotions or my behavior.  I felt so deeply lost and so angry at the world for being unfair and so fucked up in so many ways, and so scared about my future (and what it could mean for my family) that I became suicidal — because I thought my life was over anyway.

In a manner of speaking, my life (at least as I knew it) was over. I couldn’t work because of the near-constant seizures. I couldn’t (and still can’t) drive, so I couldn’t get out of the house to do things.  I couldn’t even walk to the store by myself because of the seizures.  I was miserable, but eventually I got used to the idea that life for me meant sitting on the couch, typing on Facebook, watching TV, and eating.  I had a shower chair, because I couldn’t shower safely standing up, thanks to the seizures.  I couldn’t cook, because wielding sharp knives isn’t safe for someone who is constantly seizing. I felt pathetic and worthless.

As if trying to nail down the lesson that it is very possible to fail at things that are important to you, despite how much you try to succeed, life threw me a crushing blow in 2011. Because I couldn’t pass the bar exam and work and Adam couldn’t find work, our financial situation became so desperate that we had to leave Los Angeles and move in with his brother, Nick, in Romeoville, IL (otherwise known as the middle of nowhere). I had to organize a new care team of doctors, which was complicated and weird. Adam (who had finally gotten to work using the skills he studied in college) had to give up a potential job with the NFL (who waited over 5 months to decide that they wanted him) and return to working for the railroad.

Fortunately, the rail has been good to him. They took him back immediately, and we were able to move from Nick’s house get an apartment of our own in Chicago in 2012. He also got an even better job with the rail shortly after our move.

A fresh set of doctor’s eyes meant that in December of 2012, I had to do a second week-long video-monitored EEG session.  To make sure that everything they got on video EEG was accurate and not caused by the medications I was taking (and because I wanted to have a clean body so Adam and I could start our family), I stopped taking the Cymbalta and Abilify that had been prescribed to me after diagnosis with seizure disorder.

Suddenly, I wasn’t having seizures on and off through the day. And the ones that I did have were simple partial facial ticks and not grand mals. Life was again showing me that things can go very right when you’re not even trying. 

“Present Rachael”

I still am adapting to the idea that life is more than sitting on the couch, typing on FB, watching TV, or eating. I walk to and from the grocery store most days. I exercise at the gym whenever I am able. I apply for jobs that I think I am qualified for…

But I’m not a rockstar. And I’m not an attorney. I am a housewife who struggles with MS. I consider myself a success on the days when I go out to get groceries, do the laundry, and wash the dishes.

I have a hard time getting myself to practice guitar or piano because it’s emotionally difficult to hear yourself not playing as well as you know you used to…  I know that at 32, I am too old and not attractive enough to get signed to a record label – but moreover, I know that I don’t want the pressures of that life. I don’t want to go on the road anymore. I like being home and with my husband.  If I do anything musical anymore, it’s rare and occasional songwriting… and, as always, I never actually write out the notes. So, I guess if I’m being honest with myself, I’m really more of a poet.

When I judge myself based on the high standards I set for myself in the past, I come up exceedingly short.  I am not changing the world. I am not independent. I am not doing anything amazing or memorable or worthy of mention in history textbooks.  And that sometimes makes me sad.

But when I look at where I am today: Able to be physically independent enough to walk to and from the grocery store alone, able to shower without a chair, able to cook, able to workout, and able to say that despite failing the CA bar exam twice, I am not a failure as a person…  I am actually thrilled.

So, sure, I’m nothing like I used to be… but maybe that’s not such a bad thing.

In another life, financial success meant more to me than all the things that brought me happiness.  I’m glad that’s no longer the case. The future well-being of “my family” (and children I still don’t have) means more to me than money.

Things Are Getting Better

Quantifiable Betterness

So you remember that self-care chart I was talking about?  Well, I actually printed it out and am using it.  It’s like I actually want to feel good!

Oh wait, I do! 🙂

Luckily for me, I woke up this morning feeling hopeful as opposed to hopeless, and that made it a lot easier to pull on some jeans and take my dog for a walk in the cold, despite the fact that I’ve injured my left leg during exercise at the gym.  I’m not sure what I did to bruise my Achilles tendon, but it seriously hurts to even stand for very long, let alone to put weight on my left leg. I think that means I need to take some time off from the treadmill, but not time off from working out, because I need the positive effects of exercise for my overall health.  Maybe I can talk Adam into swimming with me.  The YMCA we go to does have a pool, and we haven’t taken advantage of that yet.

One thing that I am very proud of is that Adam and I are now regular gym-goers. We’re there at least every other day, working out. It’s been good for our health and for our relationship, not to mention good for self esteem for both of us. I know that I at least feel more empowered, and that I feel prettier and better about myself when we go. It’s also good to see Adam shake off the stress from work when he’s had a good run, and it’s been awesome to see how supportive we are of each other. I feel really lucky to have a built in gym-buddy in my marriage. I’m lucky.

The New Kitten Hotness

Last night, we headed out to Romeoville to pick up some new foster kittens. We now have two 7-week old kittens that we’re taking care of, and they’re adorable. We’ve named them Princess Peach (because she’s cream-colored and wonderfully affectionate) and Mario (because it goes w/ the Princess and he can jump extra high!)



In other news, I’m finally starting on a project that I’ve never done before: scrapbooking. I got a glue stick, a baby magazine, some cool paper, and I’m gonna see if I remember how to collage. A good friend suggested putting together a baby scrapbook to make the whole “having a kid” thing more tangible and realistic. I will tell you, just having a baby magazine and reading through it made the whole thing a little more real — and a little more scary. (Have you read the articles on cracked nipples? Just reading the term makes me cringe!)

Recognizing The Need For True Integration

And to be frank, even though the person who suggested that I scrapbook was Adam’s friend first, it doesn’t make him any less my friend too. For too long, I’ve had a really shitty outlook of “I don’t have any friends here.” and that really is a slap in the face to all the wonderful people who have taken me under their wing here as Adam’s wife. They don’t have to care about me, or treat me nice, but they do, and I’m thankful for that.

For the longest time, when I moved here, I was so wrapped up in the anxiety of how I felt about what was going on in my own life that I forgot that when I married Adam, I became a part of his family too. I saw myself as separate and apart from everyone else, and didn’t feel like a part of the Majka family, but just someone who wore the last name. It wasn’t until this past Thanksgiving that I really felt comfortable with everyone… and that’s two years into our marriage. And it’s no one’s fault but my own.

I think — no, I know — that half the time, I don’t feel comfortable in my own skin. And it can’t be comfortable for anyone to want to be close to me when I can’t be calm within myself. I mean, who wants to hug a ticking time bomb? I wouldn’t.

And that’s not to be down on myself. I’m just acknowledging that any sort of emotional intimacy is sort of impossible when you’re afraid to say or do the wrong thing. And I’m always afraid of saying or doing the wrong thing. The sad fact is that you can’t feel accepted if you’re always nervous because you’re constantly worried you’re being judged by others because you’re always judging yourself.

So I guess my job, having recognized that, is to learn how to stop walking on eggshells with myself…

I guess it’s time to get back to training self-compassion.

Happy Halloween!


Jack-o’-lantern (Photo credit: wwarby)

It’s one of my favorite holidays! The day that everyone dresses up in costume and trades sweets!

Who cares that it’s steeped in Christian (and pagan) mythology? Not me. It’s all about CANDY and COSTUMES, people. Candy and costumes. That’s what you’ve got to focus on. Not “the reason for the season” because the real reason for the season is generosity, sharing, and creativity.

When else do we teach our children that they can go up to strangers (ok, neighbors) and ask for candy and receive it? When else do we teach our children that when they grow up, they will go to the stores, and buy candy for strangers? Only on Halloween.

To tell the truth, I’m slightly ashamed of myself.  Usually, I go all out for All Hallow’s Eve and make some sort of really fantastic costume, but this year, I’m just a plain-jane witch giving out candy.  Honestly, I think it’s because the group of friends we have out here didn’t have some sort of ridiculously awesome costume party like our L.A. friends Rose and Or do every year.  Their sort of epic fun-fests just can’t be matched.  (No offense meant to our Chicago-based crew. Y’all are the tits. It’s just that no human can match the unbridled awesomeness of a RoXor party without somehow ending up with a massive party foul or having cops called.  It’s been tried.)  One of these days, I’ll sew myself a dinosaur suit and be as cool as Rose, minus the Ultramarathons. 🙂 One of these days…I’ll actually learn how to use my sewing machine. *smirk*

Anyway, I hope that everyone reading this has a fun time tonight and stays safe!  Remember, it’s amateur night on the roads, and everybody thinks they’re “ok” to drive. Don’t hesitate to take a cab if you have even the slightest inclination to do so.

And eat an extra piece of chocolate for me during the binge.  It’s all calorie-free tonight, didn’t you know? 😉

A Convention Just For Us

There are days where I wonder to myself why I ever went to law school.  Today is one of those days.

I woke up after a really excellent dream.  I had put together a convention for my Facebook friends and their Facebook friends only.  It was by invitation only. Everyone had fun playing board games, dice-rolling RPGs, and watching movies and bands.  All of the bands that played at the convention were friends of the group.  Folks like Schwarzenator, Joyce Lee and The Killing Shoes, and Esque.

I got to thinking today, and living that dream is totally plausible.  I have a lot of event coordination experience, and some truly excellent friends.  I bet I could make one hell of a convention/party for about a thousand people or so.  I think it would take at least a year to plan properly. I just need to make a business plan for it, and get some people on board to help with it.

Now, I know what you’re thinking: why not just get your friends to go to a convention that already exists?  I mean, there’s ComicCon, GenCon, DragonCon, AwesomeCon, and so many others that I could go on… and honestly, it’s because I don’t want to do what’s already been done. I’m not looking to do the same thing that’s already out there. I’m looking to get us computer geeks together in a social atmosphere.  I’m not looking for cosplay. (Though with my friends, I wouldn’t rule it out…) I’m not looking for comics. (The books — funny people, however, I *am* interested in!) I’m not trying to force people into playing games with strangers. I’m looking for a party with friends and friends of friends.

One of my friends, Reichart Von Wolfsheild, started BIL – the Southern California counterpart to TED.  He’s a huge inspiration to me. One of the things I can see happening at this convention is inspirational talks by folks like me who have chronic illnesses who are letting people know how they cope with their issues and live their lives to the fullest.

I think I’d also have some people in the entertainment industry, like folks who are involved in TV or who are professional musicians come and talk about what their daily lives are actually like.  Maybe visual artists too.  I’d call the track “Secrets of the Universe.” 🙂  Because that shit needs to be demystified and de-glamorized.

Anyway, I think getting this idea out of my head and into the real world is the best that I can do for myself and for the world today. It’s a step in the right direction.

By all means, let me know what you think – positive or negative. Just don’t be surprised if you’re negative if I don’t listen. 😉

Through The Looking Glass

English: Screenshot of Alice from the trailer ...

English: Screenshot of Alice from the trailer for the film Alice in Wonderland (1951). (Photo credit: Wikipedia)

This past weekend, I traveled to San Francisco to attend a vow renewal ceremony of two very dear friends.

They had an Alice in Wonderland theme, and the event took place in a beautiful house with a view on the Bay that was breathtaking.

Of course there were the mandatory jokes about how great it was that each of them was marrying their spouse, but to be honest, as someone who had just celebrated her second anniversary with her husband, it was great to see 2 people who love each other so much at 10 years that they’d marry each other all over again.

To tell you the truth though, my favorite part of the event was seeing them interact with their 3 year old daughter, Lily, whom they had given up for adoption to John and Mikio — a wonderful gay couple who came in with her all the way from New York to attend.

And in a subtly-annoying-but-ultimately-serendipitous sort of way, John, Mikio, and Lily got tied up in traffic — so the ceremony that was set to start at 4 didn’t start until after they got there — much closer to 7 — which also happened to be the same time that Grandpa Ray made it to the party. And because of that, it was so much more romantic! Guests from ages 3 to 95 were there, and it was right at sunset, or twilight, if you prefer…

Lily was blowing bubbles through the whole ceremony and dancing and cheering.  And so was my heart.

A child really is the embodiment of 2 becoming 1. You couldn’t help but see the beauty, joy, and femininity of Deb in her, and the strength, intellect, and attention-commanding presence of Jason all present in her at the same time. She made me think about what a child would be like if it were a mixture of Adam and me… and it made me want one all the more.

I’ve been really hung up on getting pregnant with Adam’s child and coming off of my meds in order to do so.  Last week, though, I had to temporarily go back up to 60mg of Cymbalta because I was having suicidal thoughts again.  I know for a fact that it’s a chemical thing, and not me, though.  Life is so great right now, with Adam. We have family here in Chicago who love us, friends who like to hang out with us, plenty in the city to do and to explore. And there are always friends and family members that we love and want to visit all over the country, and even some in different countries.   No, I want to live. I want to bring more life into the world — so any suicidal thoughts — I’m blaming those on medicine, or lack there of.

I was doing okay at 40mg for a couple of weeks, so we’re going to try to bring me back down again to that level over the next 2 weeks. Then we can do the 6 week taper to nothing.

Trying to come off of SSRIs is so much more difficult than I thought it would be. It requires far more patience with myself and with the process than I anticipated, and a stronger commitment to meditation than I previously had.  It can only be a “some days” thing if I’m around friends and family.  If I’m mostly alone, I had better be letting the thoughts go their merry way by order of meditation every day.

But, on the bright side, I’ve noticed a significant decrease in seizure activity.  I don’t know if I can attribute this to the decrease in Cymbalta or to the increase in exercise, or some combination of the above.  Either way: I only had 1 seizure while I was with my friends this weekend, and that made for a great mini-vacation.

All that, and I even made new friends at the party.  In my new, pretty, shiny party dress.

*contented sigh*  Life is good, readers.  Right now, life is good.