*waves*

Hey there.

Life’s been crazy. I have been writing – just not on this blog. I’ve been writing here.

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Here’s a link to my most recent stuff.

I was actually just featured in an interview on that site yesterday.

Love That Hugabug!

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Henry is growing like crazy. 10 months old, wearing size “18 month” clothes. He’s babbling all the time, blowing raspberries, and pulling himself up on furniture. He’s so close to walking that I’m trying my best to appreciate how easy it is to keep up with him these days.

I’ve started working on planning his 1st birthday party, which will be a joint party with his Grandpa (my dad), since they share a birthday weekend.  I think I’m actually more excited about my parents, my brother and his awesome wife coming in town to celebrate than I am about the fact that we managed to make it a full year without accidentally killing our beautiful, amazing baby. Being a parent is hard, yo.

I’m a mess, but I’m doing my best.

My health has been frustrating and upsetting, so I’ve been doing my best to minimize the struggle while responsibly handling it.

I believe I had an early miscarriage a couple of months ago. I’m usually very regular, but had a couple of very faint positive pregnancy tests and then didn’t bleed for 50+ days.  When I did get my period, it was the heaviest, most awful period I’ve ever had.  Dr. Dad thinks I might have just missed a period. He said it happens all the time, and not to worry about it. Adam has decided Dad’s right, so I’ve jumped on the “don’t mourn something that never was” bandwagon with my conscious mind and have been dealing with terrible depression and nightmares because of the choice to repress my feelings of guilt and sadness. I see my therapist on Saturday, thankfully.

Of course, just afterwards, I had a MS relapse, complete with tons of seizures, neuropathic pain in my legs, muscle spasms, and tingling/burning on various parts of my back. A medrol dose pack seems to have done the trick to quiet most of it. Come to think of it, it’s been almost 6 years without a drip — so that’s pretty good, I guess.

My stomach is still up to its shenanigans, reminding me after almost every meal that eating is not a good idea… and that’s despite my gastroenterologist doubling the amount of Prilosec I take. I am scheduled for an upper and lower GI scope on St. Patrick’s Day.  (Fun, right?)

After 2 years of not seeing a dentist for a myriad of reasons, I finally went in for a cleaning and exam. I have 2 cavities to get filled this month as well, in 2 separate visits.

I honestly don’t remember the last time that I went to the gym to work out (though I did see a nutritionist), and today, I’m fantasizing about finding a chiropractor because my neck is super-sore from my head dropping thanks to seizures. Unintentional headbanging FTW. Honestly, I’m tired of hurting. Apparently, not tired enough to use my foam roller, but just enough to think about it and then whine to myself you.

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The bright spot in the health area is that I finally got glasses.  They’re cute and helpful. I had no idea how badly I needed them!  I now look forward to the day when Henry stops wanting to rip them off my face and throw them. I’m sure that will eventually happen someday.

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Anyway, that’s all for now. The little one is stirring, and I need to change and feed him.  Hope you’re having a good day! Be well!

Slightly more effective than whining to myself.

A long time ago, I started keeping a journal online. Back in 2001, LiveJournal was all the rage with the group of friends I had made during high school. I loved it. I wrote all the time, about any little thing that came into my head, and so did most of my friends. I was always excited to read what they had written because it made me feel close to them, even though we were miles apart from one another.

I kept that online journal through the end of college, through my entire first marriage, and even through law school.  That blog was responsible for me making some of the best friends I’ve ever had, as well as learning a lot about myself, mostly because I had absolutely no verbal filter on there whatsoever. I never considered how I was publicizing my emotional garbage or how it affected anyone else. I just wrote — raw and honestly. And there was a sort of freedom in that. A kind of validation that I was able to give myself. It was proof that what I thought and how I felt mattered. I miss writing with that kind of abandon, but I also value the restraint that I’ve learned to have with my words.

Words can hurt or they can strengthen. They can inspire and they can thwart dreams.  They can foster intimacy, and they can degrade reputations. Words have power. But so does silence. And when I’m silent, it usually means I’m either terribly busy or that something’s wrong.

Over the years, I’ve chronicled some serious stuff here. Some deeply painful emotional growth, struggles with disease, diet, mental health and, sure, even some random bullshit. But at least I was writing.

These days, with a 3 month old, it’s hard to do much of anything. It’s hard to get restful sleep. It’s hard to remember to eat full meals. It’s hard to go to the bathroom without feeling guilty, to remember to brush my teeth every morning, to shower regularly. But mostly, it’s hard to be creative.

It’s both hard to find time to write, and harder, when I get some “free” time, to find the words to discuss what’s on my mind without breaking down and crying.  The only way out is through, and someday, God-willing, I’ll feel like myself again. I just have a feeling it’s going to take a lot of effort.

And, yes, I’m very well aware that this is textbook postpartum depression. I’ve seen my therapist, and she’s basically said that I’m handling it as well as anyone can.  She said that PPD creates ANTs (automatic negative thoughts) on steroids. To be clear: I’m not actually the worst mother ever, ever.  But we all knew that. Postpartum depression has been written about exhaustively.

You know what hasn’t been written about?  How totally shitty it is to be a decent writer and to be reading absolute garbage to your kid repeatedly.

Every day, I read books to my beautiful son. He loves them. His eyes light up, and he smiles the moment a book comes out.  He doesn’t light up when I bring out my laptop and read stories out loud. He actually cares about the paper in my hand, and his happiness makes me smile, so I spend a lot of time flipping pages and accidentally giving myself paper cuts.

Sadly, these books are terrible, people. They’re 5-10 pages long at most, and each page has maybe 2 lines. More often than not, those lines rhyme in a sing-song fashion.  And beyond rhyming, they teach basic stuff that in today’s day and age don’t matter one iota.

Who cares that the cow goes “moo?” when you’re more than likely never going to spend any time whatsoever with a cow? We are not an agricultural society anymore. Why are we teaching kids about livestock?

Why, if you’re reading about “all the thinks you can think,” would you challenge a baby to imagine places and things that don’t exist (and never have), when they’re still trying to get a basic grasp on the world around them?  I mean, he doesn’t even know what “blue” means yet. I’d love to challenge him to imagine a lake rather than “a day in DaDake.” He doesn’t know what “day” is yet. But who’s allowed to rip on Dr. Seuss? It’s blasphemy. The guy was a genius, and most of his books are amazing. I guess I’m lacking proper respect.

So, yeah, I find myself getting irrationally angry and frustrated with children’s baby literature, but even more irrationally angry with myself.  I am constantly thinking, “I could write something better than that!” And yet, when I sit to write something, I think the most unhelpful thoughts – like “What if this has been done already?” or “Am I wasting my time? I could be making myself something to eat. Is this a good use of my time?”

It’s a sort of writer’s block that I can only compare to how I have dealt with music.  And I’ve dealt with music very, very poorly. I mean, I graduated from Berklee College of Music and studied voice, but I don’t perform with anyone, anywhere, ever. It’s not like you can go to karaoke when you have a newborn, and when I sing at home, I have a hard time silencing my inner critic. WTF is that about? Not helpful, ever. It’s not like Henry has anyone to judge me against or that a 3 month old would have the audacity or even the ability to be shitty to a mom singing him lullabyes.

And God help me if I consider spending any time with my piano or guitar. Even before I’ve tried, it’s like, “Have you ever taken a lesson in your life, Rae? (Only several years worth.) Not sure why it’s like I don’t know a damn thing.” I don’t have any idea what I’m actually afraid of, but it legit feels like panic and fear. I remember sounding bad for years to get to sound good. Why should I be so impatient with myself now?

So, yeah, I’m creatively constipated. That’s the only way I can describe it. I desperately want to make music and write new songs. I wholeheartedly want to create children’s books that Henry will find helpful and that will show the world that there’s some value to my existence… but I can’t seem to do shit. (Pun intended.)

At least, I can blog while my husband and child sleep.  Because blogging is basically whining to yourself. You just happen to let the whole world see it, and that accountability counts for something. It’s not high art, but it’s a damn sight better than being silent.

Mostly Better

It’s been a week. My last entry happened on a day when I had more than 20 seizures. I’ve learned that if I’m that incapacitated by seizures, I’m definitely having an MS relapse. I called my neurologist to follow up, and he called in a medrol dose pack on Friday afternoon. The effect was damn near instant. Thursday: 20+ seizures, Friday prior to meds: 13 seizures (I took the first day’s worth after dinner), Saturday: 0 seizures. NONE. Not one.

I wish I could say that I haven’t had any since Saturday, but that wouldn’t be true. Yesterday I had a couple, but they were simple partials (facial twitches), so I’m not worried about them. I’ve come to the point in my experience having seizure disorder where 1-2 simple partial seizures a day doesn’t feel like any big deal to me at all. Today, so far, I’m good. Maybe that means that tomorrow I can get back to the gym. I’d really like that.

Doing The Right Thing

Sometimes, I do the right thing without even realizing that I’m doing it. It always makes me smile when that happens. Take that letter that I wrote myself last week, for example. Apparently, science has proven that writing yourself compassionate letters is good for your mental health. It stops you from ruminating on the negative and allows you to take positive action. (Like taking a much-needed nap!)

Today, I’m doing my best not to ruminate on an irrational concept that a friend brought up in reference to herself. She said that she didn’t want to live a mediocre life.

A Mediocre Life? There’s No Such Thing.

For whatever reason, reading the phrase “living a mediocre life” felt like a punch in the chest. The idea that I might be living what she considered to be a mediocre life stuck in my craw. What upset me worse was the idea that I might think that I’m living a mediocre life.

I mean, I spend most of my days alone in an apartment, doing household chores and participating on social media.  It’s not exactly the stuff of legend.  Back in the day, before seizures, I used to be much more social and was very career-driven. But does a change from that way of being mean that my life is second-rate or ordinary? Since when has anything about me been ordinary?

Truth be told, I spent a significant amount of time in therapy wrestling with the question of why I’m even alive, if I’m not doing anything important. The answer to that question was remarkably simple: Because it’s better than the alternative! And, besides, how am I supposed to accurately know what is or isn’t “important” in the grand scheme of Life, The Universe, and Everything? That requires a level of objectivity that no human can possibly attain.

So, sure, I’m not living life the way that I had hoped for myself. So what? What person living with a chronic illness is? Hell, I’d go so far as to wager that no one is! We all deal with shit being thrown at us that we neither expected nor wanted, and we deal with it. Does living a life that is different from the one “of my dreams” mean that my life is inferior, insignificant, or of poor quality?  No, it doesn’t.

Just Because You’re Not Living The Life Of Your Dreams Doesn’t Mean You’re Not Living Well.

There’s so much pressure in our society to stand out and be considered important, and it’s totally unnecessary. It comes from our constant consumption of narratives: TV shows and movies and books. And most of these narratives are fictitious. In real life, we’re each the protagonist of our own story, but none of us knows the whole story because it’s constantly unfolding before us.

Hell, the US military even capitalized on this idea by asking the question, “If your life was a story, would anybody read it?” in recruitment ads. It’s such a silly way of thinking. Comparing stories from our lives with other people’s stories based on entertainment value is fruitless. It’s a directive for misery. There will always be people who have it better and those who have it worse. There will always be people achieving more and those who aspire to far less.

I mean, let’s take a step back from the question of “Is my life mediocre?” and ask an even more important question: who’s judging? Society? The media? History? Why should I care what anyone (other than me) thinks of my life? I’m the one living it, and I’m proud of who I am. That’s what studying Tao is all about: the idea that your path is unique to you, and that you can’t do life wrong.

If we must put ourselves up for judgment, I think it’s better to focus on a set of objective metrics.

  1. Do you do something to learn and grow as a person every day?
  2. Do you engage in activities that contribute positively to your community, such as philanthropy, charity, or advocacy?
  3. Do you treat yourself and others with kindness, compassion, and respect?
  4. Do you make an effort to use your unique talents when you’re able to?
  5. Do you take time to express gratitude and to appreciate the people and things in your life?
  6. Do you share your knowledge with others? Everybody knows something you don’t! It’s one of humanity’s greatest gifts!
  7. Do you make an effort to be empathetic and honor the experiences of others?

I think that if you can say “yes” to those questions, then you’re living a life you can be proud of.  And to be honest, even if you can’t answer “yes” to all of them, it doesn’t mean that your life is mediocre.
 

Shake It Off

Today’s earbug is a pop song by Taylor Swift. I usually don’t like her music, but I’ve had this song stuck in my head for a few days, and it works with the theme of today’s post. I hope it makes you want to shake your booty too.

The Irony Is Not Lost On Me.

In the wake of Robin Williams’ death, I’ve been talking with a lot of my friends about the topic of suicide.

Suicidal Thinking: I know a little about it…

suicideThe first time I tried to kill myself, I was very young. I want to say I was 8. I might have been 9. I was in 3rd grade. I had been through some shit. I took double the adult dosage of some cough syrup. (What can I say? As a kid, I didn’t understand how it worked.) To my surprise, I didn’t die. I did, however, faint, and get to deal with EMTs. I actually was glad I lived, but I never stopped thinking about it. Any time I was down on myself or dealing with bullies, it seemed like the natural, appropriate answer to the situation. It wasn’t.

In early 2003, at the age of 22, I walked into Lakeside and said, “I need help. I can’t stop thinking about killing myself.” The week that followed was horrifying, but helpful. They put me in a room with an anorexic lady who stole my down jacket so that she could sweat off more weight, and I actually had to spend a significant amount of time in group therapy with the very woman who had abused me as a kid at child care and convinced me that I was nothing more than a burden to my parents.

In a very everything-happens-for-a-reason sort of way, I learned all about the abuse she suffered as a child and her messed up reasoning for abusing me. Turns out, I was actually her favorite child from day care, ever. At the time, she was unmedicated, undiagnosed, and suffering from schizophrenia. She genuinely believed that she was trying to teach me necessary life skills and the reality of the world we are living in. Abusers often don’t understand that what they’re doing is harmful because they’re repeating a cycle from their own lives. So, I had to forgive her, in front of a group of strangers, so she could begin to forgive herself. She had been red-banded (a red wrist band told hospital workers not to allow her outside or near anything she could use to harm herself) for more than 6 months. In contrast, I was red-banded for 2 of my 5 days.

The second time I was hospitalized thanks to suicide was 7 years later. Even after going through EMDR therapy to help stop seizures and deal with trauma from earlier in life (much of which I have intentionally kept off this blog), I genuinely believed that I was nothing more than a burden to my family and friends. In the course of 2 years, I had gone from being a socially adventurous academic overachiever to someone who had seizures almost all day long, every day, who couldn’t work and spent all of her days either on the couch or in bed.

suicide2When my parents suddenly let me know that they could no longer help us with rent, Adam and I faced an immediate choice between heading to a homeless shelter and leaving the Los Angeles area to move in with his brother in Romeoville, IL. Either way, we would lose most of our possessions and pride. I felt entirely responsible for our situation, regardless of the facts that Adam had been unemployed for 2 years thanks to the recession and I had no control over having MS or a seizure disorder. I simply wasn’t willing to pull Adam down any further, and I could no longer handle my shame.

I was put on a 72-hour mandatory hold at Glendale Adventist after he called the police because I walked directly into traffic on a busy street. It was the most loving thing anyone has ever done for me, and it helped transform my life. It was there that I learned the truthful phrase, “Suicide is a liar demon.”

I wish I could say that my fight against suicidal thinking ended in that hospital, but it didn’t. It did, however, jump-start some better behaviors, like using aromatherapy to help keep you in the present moment. Unfortunately, I still couldn’t cope with the fact that I’d failed the CA bar exam twice (and wasted $20,000 in the process) or that I still couldn’t magically make myself better enough to be able to work.

It wasn’t until January of 2013, when I started working with a cognitive behavioral therapist to really break the cycle of suicide addiction, that I learned how to stop suicidal thinking in its tracks. It’s probably the most valuable set of rituals I’ve ever learned.

How I Kick Suicidal Thinking’s Sorry Ass Every Single Day

behappyThe best advice I got from CBT was to keep busy. My therapist often said, “An idle mind is the devil’s playground.” But just keeping busy doesn’t get the job done. It only helps distract you from your thoughts so you can get a word in edgewise with your thoughts. You still have to be pro-active. You still have to recognize when you have irrational thoughts and fight them. And any suicidal thought is irrational. Trust me on this one.

Here’s what I do to keep suicidal thoughts at bay:

1.) Every morning, I list 3 Great Things About Yesterday to remember the good that happened in the past and trick my brain into forgetting about or at least not focusing on the bad. Sometimes I write it here. Sometimes I write it on Facebook. Sometimes, I write in a real paper journal.

2.) Daily gratitude rampages help me focus on what’s good in the moment. Most of mine are in the journal, but sometimes I do them here or on Facebook.

3.) Daily meditation helps me focus my intentions. Right now, Chopra Center has a free 21-day meditation challenge going on, if you want some guidance to start your practice.

4.) I am constantly examining my thoughts for truth to figure out what’s real and what’s an ANT (automatic negative thought). If I find out that a thought is an ANT, I challenge it. It’s like running virus protection for your mind.

5.) Move! Even if you only take a 5-10 minute walk a day or do a few minutes of chair yoga because your legs don’t want to cooperate, getting your body in motion makes a huge difference in your ability to be happy.

When I started these practices, they were very difficult and a constant pain in the ass, but so was enduring life! Nowadays, they’re usually easy, quick, and enjoyable.

Rest In Peace, Mr. Williams.

robinwilliamsI have to say though, that I wouldn’t have written any of this if not for the fact that Robin Williams choked himself to death with a belt.

This guy — this actor/comedian whose roles were so intensely life-affirming that I watched many of them (especially Robots, Dead Poets Society, Good Will Hunting, and Hook) multiple times while fighting suicidal ideation — he did the world a horrible favor by dying this way. He brought suicide into popular consciousness in the worst imaginable way — by being the very last person anyone would have expected to do it. The irony is not lost on me.

Robin Williams got us talking about how international fame, ludicrous amounts money, and talent-without-match are absolutely fucking meaningless when you’re dealing with addiction and suicidal thoughts. He reminded us that just because someone is smiling doesn’t mean they’re okay. He reminded us that actors can completely miss the messages for which they’re so loved. It’s profoundly sad.

Here are my favorite quotes from his incredible body of work:

Sean Maguire in Good Will Hunting: “You’ll have bad times, but it’ll always wake you up to the good stuff you weren’t paying attention to.”

Armand Goldman in The Birdcage: “So what? The important thing to remember is not to go to pieces when that happens. You have to react like a man, calmly. You have to say to yourself, ‘Albert, you pierced the toast, so what? It’s not the end of your life.’”

Fender in Robots: “You know Rodney, even if you know you had an discouraging day, remember. There is another one coming tomorrow!”

Genie in Aladdin: “To be my own master. Such a thing would be greater than all the magic and all the treasures in all the world.”

Peter Banning in Hook: “To live… to live would be an awfully big adventure.”

John Keating in Dead Poets Society: “They’re not that different from you, are they? Same haircuts. Full of hormones, just like you. Invincible, just like you feel. The world is their oyster. They believe they’re destined for great things, just like many of you, their eyes are full of hope, just like you. Did they wait until it was too late to make from their lives even one iota of what they were capable? Because, you see gentlemen, these boys are now fertilizing daffodils. But if you listen real close, you can hear them whisper their legacy to you. Go on, lean in. Listen, you hear it? – – Carpe – – hear it? – – Carpe, carpe diem, seize the day boys, make your lives extraordinary.”

The fact that I posted a “Carpe Diem” graphic yesterday felt like a kick in the gut. It deserves repeating.

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The Cruelest Prison Is The Mind

For a long time, I mourned the fact that I could no longer drive. I used to love driving. Losing that ability was, for a long time, my reason for not going out and doing things. But now, I’ve gotten comfortable with public transportation, and I still don’t go anywhere when I’ve had seizures the day before. I don’t know if I’m chickenshit or wise… or maybe a little bit of both.

Probably the most depressing thing in my life is acknowledging that I can sit on a couch all day long, looking out at beautiful weather, and still feel like I need some sort of excuse to go outside. Like I need an excuse to move. I have a dog. He likes going for walks. I can take him outside whenever I feel like it. And still, I sit here, alone, and not only don’t go outside, but also get very little done inside because it feels like nothing matters.

Oh, Jesus. That sounds frighteningly like depression sneaking back in. Time to keep myself busy.

I’m officially tired of feeling sorry for myself. I’m going to get dressed and take Brisco for a walk, and then do some chores to loud dance music.

Upping my game.

Only In Dreams

The other night, I had a crazy dream. Because of MS, I peed my pants in public, so I just took off my jeans, socks, and shoes and kept walking — rocking teal sequin-covered pee-stained panties with bare feet and an internet-meme t-shirt… which somehow lead to meeting Lady Gaga, who said she loved my style.

In this dream, she, apparently, was good friends with my friend Mike, who had vouched for my awesomeness via quick video cell phone chat. We got into a deep, philosophical discussion over dinner, and she said to me, “If you don’t do something fun, just to please yourself, everyday, you’re doing life wrong. I don’t stay friends with people who can’t have a good time.”

I woke up the next morning feeling very inspired, and I decided that it’s time to change my current way of being and live the sort of life that I would hope for my future children to live. My goal is to become a good example of how to be a happy adult to kids who don’t even exist yet, in the hopes that when they do manifest, I’ll already be a good role model for them.

This means less time spent on FB, more time spent reading quality books, writing both in this blog and for my novel, and creating art – whether it’s making jewelry, cooking, or creating clothes. It means the return of the daily “to-do” list and yoga. It means exploring Chicago in my free time instead of staying in my apartment all the time. It means conquering my fear of using the sewing machine when I’m alone, and cutting the excuses for not practicing guitar.

It means getting back to coding and learning the newest language updates to what I already know. HTML is now HTML5, CSS is now an all-the-time thing. I don’t even know if javascript is used anymore. I need to finish learning PHP, MYSQL, and I want to find out what it takes to create apps for Andriod and iPhones.

Basically, I want to be the independent, web-slinging, hard rocking, well-read woman I used to be… and I want to have fun doing it.

Easier Said Than Done

Of course, as soon as I had this revelation, my body decided that it was time to fuck with me. Maybe it was to see if the revelation wasn’t just passing fancy. Who knows. I had one good day, and then the next one was so bad that I couldn’t even get out of bed. I literally slept all day long (20 hours total!) and only ate dinner that night because Adam ordered pho for me. I was even having a hard time drinking.

I’ve had 3 weird episodes where my body gets super hot, and I start sweating profusely – like through clothes and bed sheets, it’s that much. I’m going through one right now. It’s 70 degrees in my apartment (that’s 21 for all you fans of celcius), and I want to rip off my skin, I’m so hot.

It feels, physically, just like having a panic attack, but I’ve got absolutely nothing to be stressing about. I’m not pregnant yet. We still haven’t found the house that’s right for us – so we’re not in the moving process. I’m just struggling to be a version of myself that I am happy with and get out of this rut of being a Facebook addict with no ambition, career, or hobbies.

I don’t know whether the sweating and heat is hormonal or caused by MS, so I made an appointment with my gynecologist next Tuesday to figure things out.

In the meantime, I’m just trying to wrap my head around the whole situation and be reasonable. I can’t expect myself to go out and explore Chicago when I’ve been having seizures for 2 days straight. I can’t learn code when I’m falling asleep. The only things I think I can do is to put time limits on FB, focus on being an effective housewife, and instead of yoga, do pilates, because it’s almost all floor-based work. Obviously, I’m also doing more writing.

All I Need Is Just A Little Patience

I know that change doesn’t happen all at once. I know that I need to be patient with myself while I transition into a better way of being. But anyone who knows me well knows that patience is, without a doubt, my worst quality.

Even though I’ve become far more patient over the last 7 years thanks to MS, I still want everything, all at once, changed to fit my ideal when I make up my mind about something. But that’s magical thinking and not how human behavior or thought patterns work. It takes steps and tons of conscious decisions to get out of a rut this deep.

It also takes a commitment to treating yourself compassionately. And, as usual, I’m down on the job there. I’m already salty with myself for not having eaten breakfast this morning or having attempted morning yoga. I keep bullying myself, as though hearing “GET WITH THE PROGRAM” is going to actually motivate me, make anything better, or make the change happen any more quickly.

What’s worse is that now that I’ve decided how I want to live my life, looking at how I have been living my life for the last 4 years or so causes me sadness and shame. To put it bluntly, in many ways, I gave up on life. I let the seizures win and became a shut-in. I didn’t even allow myself to imagine that I could do more. I mean, I still went to the gym 3-4 times a week in the hopes of improving my physical condition, but I haven’t had any lasting positive change to show for it other than now having a positive emotional response to the idea of going to the gym. At least that’s something.

The truth of the matter is that growth is difficult and painful even when it’s positive and totally desired. So, I’ll struggle in the muck today. Hopefully I’ll have an easier time struggling in the muck tomorrow, and eventually I won’t be in the muck at all.

Thoughts…

About being an inspiration…

It’s been a weird and difficult few days. I’ve just been acting normally, but for some unknown reason, I’ve been told by 4 separate friends in separate conversations in the last 2 days that I’m “an inspiration” to them. They usually follow that up by saying that most people are so fake on Facebook, and that it’s refreshing that I’m so real, showing people what it’s really like to deal with MS…

On the one hand, if reading about my struggles makes them feel empowered to do more with their lives and to be appreciative of their health, I think that’s a good thing.

On the other hand, when you’ve been having an MS relapse complete with complex seizures that you’re handling alone while your husband is working 13-14 hour days, the words, “You’re an inspiration,” sound a lot like “I feel so intensely sorry for you that I can’t contain it, but I don’t want to make you feel worse.”

I remember, as a kid, actively wanting to be an inspiration to others. I always thought that it would occur because I’d done something noteworthy or genuinely helpful to humanity. I made sure to do all my homework. I practiced my instruments. I spent hours of my life writing up business plans for enterprises that never saw the light of day.

I never considered the possibility that simply maintaining a constructive attitude while continuing to exist with a disease that is often painful, lonely, and depressing would be how I made a positive difference in the world.

When I think about people thinking about me with that level of pity, it hurts… and yet, I remember the “hero” paper that I wrote about my grandma Gilda when I was in 12th grade. I didn’t pity her. I thought she was incredibly strong.

Grandma died the summer before my senior year. It was probably 3 months before I wrote that paper for AP English, but I thought about her every day. She had leukemia for 12 years, despite the fact that when she was diagnosed, they gave her 6 months. To put it in a way that will help you understand my point of view of her life, Grandma had been living with leukemia since I was 4. For all intents and purposes, I didn’t know her without it.

I didn’t find out about her illness until I was 8 or 9, and I found out accidentally. My mom was talking with her on the phone, and I overheard. She was not happy that I knew. Grandma didn’t tell anyone about her disease because she didn’t want anyone to treat her any differently. But anyone who has lived with an autoimmune disease can tell you — you need people to treat you differently for your own good. They don’t need to be coming over while they’re sick to visit you. They need to have more patience with you. They need to understand that sometimes hugs can hurt, and that it doesn’t mean you love them any less.

There are times when I wonder what Grandma would think about my blog or my raw, honest Facebook updates. I think she would be glad that I was reaching out for the support that I need, but I don’t think she’d want me to feel like I was only an inspiration because I am doing my best in spite of bad health.

The only thing I know for sure is that she always wanted me to feel safe and loved and happy. That’s what I wrote about in my paper… how even though she struggled with autoimmune disease, she still tried to do everything as if she were fine. She danced with Grandpa in the kitchen. She made good food. She was constantly making craft projects. She played with me, my brother, and our cousins, even after chemo. She didn’t let leukemia make her any less of a person. And I worry that I’ve let the seizure disorder rob me of some of my dignity and some of my self.

About being boring.

One of the things that’s very difficult for me to cope with is feeling boring. I can’t drive anywhere, so if I’m going somewhere, I have to take public transportation… but that costs money, and if I’ve had seizures within a week of the time I’m thinking about going somewhere, I get afraid that I’m going to get lost. The combination of my frugality and fear means that I usually don’t go anywhere if I don’t already have a purpose in mind.

To put things in context for you, since I was diagnosed with seizure disorder in 2008, I’ve left the house by myself and taken a bus somewhere exactly 3 times. Once, when we were living in Romeoville, I took a special shuttle to the mall for 3 of the longest, loneliest hours of my life. Since moving to Chicago proper, I’ve gone to an ophthalmologist appointment that Adam couldn’t get off work to take me to, and to the mall that’s 20 minutes from my apartment. I enjoyed the time at the coffee shop that came with that trip.

When I was younger, I did so much different stuff that my parents actually sat me down and made me drop several extra-curricular activities because they were worried I was going to have a nervous breakdown. Band, choir, BBYO, teaching Sunday school, Memphis Youth Symphony, confirmation classes, and that’s just what I can remember off the top of my head. I also was almost constantly online… but back then it was before the WWW. I would chat online with teenagers in my town for hours at a time. I didn’t care that it blocked the phone line.

In college, I started and ran a chapter of Phi Beta Fraternity. When I was in law school, I was part of the student bar association. I did community service projects. I spent endless hours reading case law and writing papers. And in my spare time, I went hiking with amazing people and tried my hand with performance art.

But since I’ve become disabled, I don’t feel like I do much at all. I foster kittens. I try to keep up with all of my FB friends and be supportive. I grocery shop and cook. I do laundry. But I’m not satisfied.

I know there’s more to life than this. I just feel like it’s just outside of my grasp.

Practicing guitar, piano, percussion, or voice seems agonizingly pointless, since there’s no one to play with… but I consistently want to do it until my inner monologue talks me out of it. I’m giving myself points for wanting to want to practice. It means I care enough to be uncomfortable with my lack of motion.

The thing that’s tough about it is that music has always been something that was both challenging and joyful. It meant sharing the experience with other people. It mattered that I practice because my individual performance affected the group’s performance as a whole. Now, it just feels like a way to remind myself about how isolated I am and how much my chops have slipped. I’ve done the Craigslist thing and have abandoned the idea of being the singer of a band. I mean, who wants to watch an overweight unknown 30-something woman trying to belt out rock n roll? I wouldn’t go to that show. I missed my opportunity there.

The only thing I can think that’s positive is in regard to learning guitar, because I’m hoping that eventually, I’ll songwrite for my kids. Having already mastered technique necessary to self-accompany will bring joy to my kids, in theory.

But what makes people interesting? It’s the things they do. And I’m not doing much besides housework, FB, and pinning things to the Paleo Compendium.

I think I need to find a good volunteer opportunity other than just fostering kittens. I need to get out of the house. I need to meet kind people. I want to help, and I know that one of the best ways to show gratitude for the good things in your life is to help folks who are in need. I guess I’ll hit up Volunteer Match.

About being realistic.

Of course, I wouldn’t be me if I didn’t try to take a step back and figure out why I’m such an emotional monster today.

First, I still have steroids in my bloodstream. A medrol dose pack stays active in your system for about a week after you’re done with it. Corticosteroids make you crazy. They just do. Add to that the chemical changes that come from stopping Gilenya and cutting my nortriptyline in half, and you’ve got my current craziness.

Don’t worry, I wasn’t having a bad reaction to Gilenya. I actually stopped this month so that Adam and I can start a family. Gilenya takes 2 months to completely wash out of your system, so there’s no thoughts of even trying until May at least. Adam wants me to keep everything regarding the impending pregnancy hush-hush until we’re actually 12 weeks pregnant. I think that’s totally reasonable. We don’t need an audience to our family planning. I just also think it’s important that I acknowledge that I’m not on any disease modifying drugs right now.

I think that I can reasonably say that I’m handling things mostly well. Rather than crawl into bed and mope, I’ve been cleaning, writing, and actively not self-harming. I thought about day drinking for a half a second today and decided that it would be the equivalent of feeding the beast. Instead, I dyed my hair and am slowly tackling the ginormous mountain of clean clothes that need folding.

Oh, and taking care of the dog, who needs to be taken out right now. I’ll never need to question whether I make a positive difference in Brisco’s life. 🙂 He’s a good dog.