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.

carpediem

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.

Disability & Your Relationships With Your Self And Others

Judgment. It’s not just for other people to place on you. Every one of us has certain standards and ideals that we hold ourselves to. I can’t tell you the number of times that I have read a statement that goes like this: “I’m not the [wife/sister/mother/friend] that I want to be.”  This is almost always placed in the context of disability, suggesting that MS, Lupus, Fibromyalgia, a cancer of some kind, or even seizures are to blame for the reason that the writer does not feel good about themselves.

It’s Not About What You Do. It’s About Who You Are.

If there’s anything truly helpful that I’ve learned over the last 7 years of battling MS and the last 5 battling seizure disorder, it’s this: You are not your disease(s). To everyone else in the world, you are the victim of your disease(s), and anyone who loves you wants to fight the disease itself because they see how it negatively affects you.

I had a particularly hard time differentiating my self from my ailments for a very long time. I thought that because I had these afflictions that they were a part of me – and that maybe they even existed as proof that I wasn’t good enough as a person. (Otherwise, why would God let me end up this way?) I considered myself a burden on my family and my husband. I hated myself for having MS, a seizure disorder, PTSD, and depression. I consistently put myself down for not having a job, for not doing the cleaning around the house, and for not being “my best self,” thinking inaccurately that “my best self” existed free from the challenges of disease. I became suicidal because I thought that the only way to end not only my suffering, but the suffering of anyone who had to care for me or bear witness to my pain, was to end my life.

When I was in the mental health hospital, on a 5150 (involuntary psychiatric hold), my husband said something very important to me, that I hold in my heart to this day.  He said, “MS or no MS, seizures or no seizures, you are my wife and I will always be here for you – because I want to be. Nobody held a gun to my head and said I had to marry you.  If you kill yourself, that’s leaving me, and I don’t want to spend the rest of my life without you.”

Prior to that, I hadn’t, even for a moment, considered that he wanted to care for me. I hadn’t let myself believe that I was desirable as a companion, regardless of ailments.  The delusional thinking that I was engaged in had me convinced that my disability made me bad for him, worthless as a person, and that by killing myself, I would be doing him (and the world) a favor. It never dawned on me that I was more than the sum of my problems. I was also me.

Finding Your Worth With Disabling Conditions

It has only been a few months since I started working with a therapist (Let’s call her “K”) to find out who it was that I had become and to get myself on a path towards who I want to be.

When we first met, K asked me the question “Who are you?”, the answer I gave was, “I’m a housewife who is on disability because of MS and seizure disorder. I failed the bar exam twice, so I am not a lawyer.” I defined myself strictly by my career and my disease. I ignored the fact that I am a woman first, a daughter, a wife, a person with a unique viewpoint on the universe. I forgot that there were other important aspects to my personality, like loving to sing and to cook and to help friends. I defined my worth by my ability to make a paycheck.

And that way of thinking had held true for a long time before I started working to change my way of being – for years, defining myself by what I could not do caused cyclical suicidal thinking.  I was, for a few years, a very miserable person.

It is only recently that I have come to realize that my worth as a person is not determined by how much money I can make, what things I can do, or what other people’s opinions of me might be.

She had me create a chart that said on one side “Worth =” and then I had to fill in the other side.  Together, we examined each statement that my “fill in the blank” chart created to see if the thought was rational or an ANT (Automatic Negative Thought) that we could challenge.

Sometimes, the statements were just plain silly – not even a believable negative thought, but just thinking that didn’t make sense.  Things like “Worth = Not Needing Help.”  I actually had let myself believe that I was only a worthy person if I never needed help. I had to ask myself, when confronted with that statement, “Who, in life, doesn’t need help from time to time? Does needing assistance actually negate a person’s innate worth?”  The clear answer was, “No.”

Then, there were other statements that were very true, like “Worth = Irreplaceable/Precious.”  “Precious” means that something is of great value and is not to be wasted or treated carelessly. It’s true that there is only one of you in the universe for all time. This makes your life immeasurably valuable. Because of that, you should not waste your life or treat yourself carelessly.

doctor

I was forced to admit to myself and to allow myself to really believe the truth: that being unique in all of time and space means that regardless of how I feel about myself, I am valuable and deserving of care. It’s objective truth.

What You Do Is Not Who You Are.

No matter what actions I take in life, it’s not going to change a few very basic things.  I will always be a human being (as opposed to “a piece of shit” – regardless of what my inner bully might want to shout at me). I will always be a daughter. Because I my parents chose to have another child, I will always be a sister. Because I have been lucky enough in this life to meet a man who loves me as deeply as I love him, I will always be a wife.  Nothing that I do or fail to do will change these designations.

So, I had to ask myself the really tough questions… “What does it mean to be a good human being? What does it mean to be a good daughter or good sister? What does it mean to be a good wife? What is goodness?

After reading through the dictionary and thesaurus and taking some time to really think about it, I’ve determined that a “good” person is one who is virtuous, genuine, and commendable; kind and benevolent.

Regardless of physical status, anyone can still be “good” and “worthy.”  Being “good” is a question of character, not whether or not you meet the arbitrary goals you set for yourself. It’s about being loving, sharing of yourself, and making the effort to connect with others, emotionally, on a genuine level.

So, stop confusing your worth or your goodness with your ability to do certain things.  A genuine connection with a precious person is all anyone could want out of a relationship.

A Post About Living With Seizures

I wrote this on Patients Like Me to the Epilepsy forum.  I thought that it may help others with seizures, so I’m posting it here too.

I remember when my seizures were so bad that I felt like a burden to my husband (then fiance) and my family. I remember being suicidal because I felt like I didn’t control anything in my life. Fortunately for me, I took those concerns with me to therapy, and it helped me realize some very, very important things.  I want to share those truths with you now.

1.) You have innate worth as a person. Each of us is a completely unique being within this universe. There has never been a “you” before and there will never be a “you” again. This means you are precious – of great (actually unfathomable) value; not to be wasted or treated carelessly. Having seizures does not decrease your worth as a person.  In fact, it means that you have a point of view that exists to increase overall empathy of others in this life.

2.) You are not a burden to bear. You are a blessing! If your family chooses to take care of you so that you don’t have to work or do certain chores, they are doing so out of love. The only place where the law says that you have to support someone is when you are married or you are someone’s child — and you cannot force someone to marry you or give birth to you. Those decisions are ones that are made by someone other than you – and you are never responsible for the acts of others. You can only control yourself.

Choosing to view yourself as a burden because you cannot be entirely self-sufficient or do the things you once could do, does nothing but create resentment for yourself and frustration for the people who are making the active choice (out of love) to care for you.  Resenting yourself is so self-destructive! If you want to resent something, put the onus where it belongs: on the seizures themselves. I resent the hell out of my epilepsy. It fucks with me when I don’t want it to — but I do not resent myself for not having a job, because that would be an exhibit of poor compassion for myself.  I know that I am as deserving of compassion as any other person, and that the way I treat myself shows others how to treat me. It is important to treat yourself as well as you would a friend. Doing otherwise is making an active choice to feel poorly.

4.) Seizures are something that happen to you — they are not who you are! While we all struggle with the fearsome lack of control that seizures cause for us, we are always in control of our actions when we are not going through the moments of seizing.  It is of the utmost importance for your well-being that you do not allow the emotional turmoil of going through seizures stop you from doing the things you love to do, taking care of yourself on basic levels, or connecting emotionally with the people who care for you.

5.) Seizures do not ruin a marriage or a relationship — poor communication, lack of trust, fear, and resentment do. I see many folks on this forum doing something I did for a short amount of time, and it’s terribly destructive: Letting your physical condition define who you are to yourself and others, and thus using seizures to separate you from those you love. Phrases like, “You have no idea what it’s like to be me” and “I scare people” are empathy blockers. The truth is that people who witness you seizing will be frightened — but they are not frightened of you, but of what is happening to you because it makes them consider their own fragility.

Last, but not least:

6.) You deserve to feel happiness. Everyone does. And the only way that you’re going to be happy, when you have a seizure disorder, is to accept that the disorder is going to do whatever it is going to do, and instead concern yourself with what you can do when you are not seizing. Do what you can do. Memorize the serenity prayer if you have to. I know it helped me.

God grant me the serenity
to accept the things I cannot change;
courage to change the things I can;
and wisdom to know the difference.

Living one day at a time;
Enjoying one moment at a time;
Accepting hardships as the pathway to peace;
Taking, as He did, this sinful world
as it is, not as I would have it;
Trusting that He will make all things right
if I surrender to His Will;
That I may be reasonably happy in this life
and supremely happy with Him
Forever in the next.
Amen.

–Reinhold Niebuhr

Even if you are athiest, the prayer makes some damn good points. Life, with or without seizures, is something we have to accept as it is, not as we would have it.  So learn to make lemonade out of your lemons as best you can. Try to see the bright side in things.

Life with seizures is still life, afterall.