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.

Getting Back to Myself

Last night, my husband said that I haven’t been myself in years, and that I’m only recently starting to get back to myself.

The idea that I somehow stopped being me is flabbergasting to me.  The truth of what’s gone on is that I was diagnosed with multiple sclerosis and then had a seizure disorder descend upon me, and I have been struggling, for the past 5 years, to eke out any sort of solid ground so that I could regain confidence in my ability to do the things I want to do in life.  I’ve only recently been able to do this because I’ve had 3 months without seizures.

I don’t think that anyone who hasn’t gone through the literally world-shaking event that is “having seizures” can understand how they knock confidence out of you… how the absolute lack of control in the situation, and the never-knowing-when-they’re-coming can make you afraid to try things that you normally wouldn’t take issue with. Things like taking showers or cooking.  I’ve only recently (as in within the last month or two) regained the ability to shower whenever I want to and cook whenever I feel like it, without a strangling fear that I was going to end up badly hurting myself.

But I find myself currently afraid to study law and get back on track with my life where it was when things got all cocked up.  I’m afraid that if I manage to work temp jobs and save up the $4000 I need to take a Barbri class and to sign up for the IL bar exam, that I will be putting myself back in the same stressful situation that existed when my seizures began.  I’m actually quite seriously afraid of causing myself to have seizures again by increasing my stress levels.

And then there’s the bigger question that keeps looming in my mind… “Will being a lawyer even make me happy?”  And to tell the truth, I don’t know that it will. Part of me feels like being dealt the hand of “MS + Seizure Disorder” was some kind of cosmic “Get Out Of Jail Free” card that might have saved me from a life of pedantic stress-filled misery.

The thing that Adam keeps emphasizing to me is that he just wants me to be happy. It’s the same thing my parents want for me too, and honestly, it’s what I would like for myself as well, but I can’t, for the life of me, figure out how.  I’ve been depressed over my physical condition, working through emotional bullshit from past abuse, and frustrated by the limitations of my condition for so long now, that I don’t even remember what makes me genuinely happy.

That’s not to say that there aren’t good/happy moments in my life right now.  I know I derive a lot of pleasure from listening to and singing to music and cooking and eating good food.  I am enjoying exercise/physical activity, even though I’m not a fan of the sore muscles that come with it. Heck, I post “3 great things about yesterday” almost every day on FB as an exercise in remembering the good… but it doesn’t put me more in touch with the answer to the question, “What do you want to do?” and I think that answering that question is really important.

This weekend, we went to a party for friends, and I must have been asked 5 times, “So what do you do?”  And answering, “Well, I’m a housewife, but I sometimes do freelance web and graphic design, and I have my JD and I’m looking for jobs” made me deeply sullen. It made me want to avoid social situations altogether because I felt like I had the worst answer to that question ever. It felt like basically, my answer was, “I’m a loser.”  And the truth is, I feel that way right now, even though I know that I’ve handled my life in the best way anyone in my situation could.

When I try to answer the question of, “Well, what would you like your answer to that question to be?” I draw a blank. Well, that’s not entirely true. There are a few answers, but they all feel stupid or impossible — and I know that’s likely just negative thinking.  The truth of the matter is that I don’t actually know how possible it would be to work for a record label or radio station in Chicago, or why the phrase “I’m a stay-at-home-mom” has any more merit than “I’m a housewife.” but it feels like it’s a world apart. It’s as though including “raising a child” as a part of your daily routine somehow makes that daily routine more valid as opposed to simply more stressful.

Last night, Adam suggested that I use the word “housewife” with the same vitriol that some people use the word “nigger.” I think he’s right. Even though I do a lot of work around here, I have a hard time giving myself any kudos for it. I just feel like it’s all the stuff that’s expected of a wife, or like it’s all stuff I should do as an adult anyway… but then I think about Automatic Negative Thoughts (ANTs),  and am reminded of three types of them:

  • Mental Filter – Only paying attention to certain types of evidence: blocking out the good and noticing failures but not seeing your own successes
  • Disqualifying the Positive -Discounting the good things that have happened or that you have done for whatever reason
  • Using “Should” and “Must” statements – Critical words like “should”, “must”, or “ought” can make us feel guilty or like we have already failed.

I can’t help but be honest with myself and recognize that these 3 things are in full effect here.

If I were being at all fair to myself, I would be awfully proud of the change that has occurred in myself in the last 2 months. When Adam comes home from work, the place is clean and pleasant to be in, every day.  I’m no longer taking 2-3 hour naps that he has to come wake me up from when he gets home because I cannot face life. I am no longer constantly wrestling with the urge to kill myself or harm myself. I don’t cry to him on the phone when he calls me from work every day. I don’t have days where I ask him to stay home from work because I can’t handle another day alone anymore. I don’t try to convince him to divorce me because I’m sure that I’m no good. Instead, I show him, every day, how much he means to me by doing good things and by telling him how much I appreciate him.

And truthfully, that’s big time progress.

I guess I’m just impatient to be “all better,” if that’s even possible.  It’s no longer enough  for me to just be okay, now that I am okay. I want to be awesome because I remember that I actually am pretty awesome sometimes… and being any less than that feels like failure.

I want to be proud of myself.  Adam already tells me that he’s proud to call me his wife. I want to feel like I deserve it. I wonder what I have got to do to earn my own respect. Maybe my therapist can help me answer that question tomorrow.

 

 

Living A Meaningful Life

One of the existential traps that I constantly work to keep myself out of is that of questioning the meaning in my life.

It is a constant battle, because somewhere along the line, I picked up the mistaken idea that everything you do in life is a part of a path towards something bigger… so when I would get down about where I was in life, or would start questioning what I was doing (or not doing) I would get super down, thinking that my life was meaningless, because I could not, at that moment, extrapolate a “lesson” or divine some greater “meaning” from the events that had previously unfolded.  Nevermind the fact that in a book, you must finish the work before you understand the thrust of the story, I very frequently had gotten it in my head that I needed to have life figured out, and have it under control — right then. Admittedly, this came from impatience with myself and with the situation that I was in at the time.

Because I did not (or could not at some points) have a job, and I did not know what I wanted to do (or worse what I judgmentally thought I ought to be doing), I decided that I, myself, was worthless, and therefore my life was meaningless as well. This sort of thinking is, of course, deeply unhealthy: a combination of overgeneralization, catastrophizing, and emotional reasoning, 3 ANTs (automatic negative thoughts) that go together so frequently you could almost consider them a sort of mirepoix of misery.

Oftentimes, this sort of thinking can continue to eat away at your self esteem and to spiral until you become suicidal, because the thought of ending your life carries with it the only sliver of control that you think you have left. It has a sort of comforting side to it, carrying on death’s shoulders the burden of all of the awfulness you’ve created through the ANTs and saying, “You can make it all stop/go away,” despite the fact that the delusion would end in death and not in an improvement in your life, which is what you actually want. This is how suicidal thinking can become addictive. It lets you abdicate responsibility for your way of thinking and imagine that there’s a way out of your situation without having to work hard for it.

But the truth of existence is something entirely different. Nothing good and lasting ever comes (or stays) without effort. What I have found is that life is something that cannot be experienced passively if you hope to attain and prolong happiness.  It must be constantly infused with meaning, the same way that plants must be watered and fed — each day must be lived purposefully, driven with intent to create or to drive you towards one or more of the goals you have set for yourself.  Anything less than recognizing your duty to yourself and choosing to be empowered will cause sadness and decline.

Of course, with this empowerment comes the responsibility of taking action, and for many people, it is a difficult pill to swallow. It is not pleasant to recognize that happiness and a good life are the responsibility of each and every person individually for themselves — and that no one can do the work for them, no matter how much they may want to. It is especially difficult to believe that you can rise to the occasion when you are in the depths of depression.  We can only tell folks what we know — there isn’t anyone else who can tell them exactly how to achieve it for themselves: not even life coaches, because everyone’s life is special, different, and unique. But what we do know is that everyone inherently has the power to make things better for themselves.

So, for those of you who feel like you’re towards the bottom today, I’m going to ask some questions that I think might help you find your way toward light:

1.) What does happiness mean to me? How does it feel? What people/activities/places make me feel that way?  Can I contact those people or find my way to those things?

2.) If I were happy, what would I be doing right now that I’m currently not doing? Can I do that anyway and see how it makes me feel?

3.) What does gratitude feel like? What am I grateful for today? What can I do to show thanks?

4.) What’s one thing I can do today that will bring me or my family pride?

5.) Am I showing myself love by giving myself good care? What can I do today to care for and love my body?

I hope these questions help get you going down the path towards making choices that make you feel good about yourself and better about life in general.

Today, for me, writing this blog entry was something that made me feel like I was making a difference in my own life and in the lives of others. I hope it was helpful for you!

 

 

 

What Can I Do To Make Things Better?

One good thing about keeping up a blog is that, unless you’re just not looking, you start to see patterns in your life.

When I initially began writing today, I realized that I was, in truth, creating a bad day for myself. I was repeating sad-sack behavior, sitting in the dark, having not eaten breakfast, with no music on, preparing to write about what was on my mind — and those thoughts were all ANTs (Automatic Negative Thoughts).

It was when I saw myself typing the situation out that I realized: I have the power to change my situation, immediately.  I got up, turned on the lights, turned on Spotify (and chose a playlist of happy music), and poured myself a bowl of cereal.

Now, I’m feeling more in control of my day, more in control of myself, and more in control of my thoughts – and all of that is good.

There Are Problems In The World That I Just Can’t Change, No Matter How Badly I Want To.

Yesterday, I made a rookie error in thinking. I watched a viral video about Wealth Inequality in America and asked some of the smartest people I know how I could help fix things… because, you know, little ole me wants to do whatever she can to make things better, no matter how small that part may be.

That’s right. You read that correctly: I wanted to see what I could do to help fix the self-defeating problem inherent in capitalism.  1 Rae vs. a ginormous economic system.

I was stuck in this sort of rule-utilitarian mindset that said, “If you can figure out what the average person can do to help regulate things, without involving Congress, and you start doing it, you can help others to start doing it, and then things will be better!”  But that’s not how real life works.

In case anyone’s curious what the very smart folks answers were as to what the average person can do, they were:

1.) Increase political discussion about Land Value Taxation

2.) Create “stuff” to increase overall wealth (This includes rock music.) and then my favorite

3.) Make first contact with aliens and have them abduct all the rich people and their heirs.

Also, important to the discussion was the concept of caring for yourself first, then caring for society, as one follows the other.

I think the hardest thing to deal with was recognizing that I have to accept that I cannot fix everything for everybody. I also cannot cure AIDS, cancer, or MS. I have moments where I really dislike the fact that I am not Godlike in those ways. I just want to be magic so nobody has to hurt anymore, and I fault myself for not being that way. And I know that’s nothing but destructive.

But I Can Make My Life Better, And I Am Working On It.

So I have a few goals: Being fit, having a job, having a band, and liking myself – which includes accepting that I am not ever going to be able to fix everything.

One thing that has been difficult for me over the last week is that I have taken the leap and started applying for jobs.  There’s a certain kind of melancholy that comes with applying to positions and hearing absolutely nothing back – not even a confirmation of receipt. You start doubting if you really have been sending out your applications and cover letters, or if you’ve just been imagining the hours of job searching.

It’s a weird position to be in, having a juris doctor degree and no law license. I’m overqualified for most administrative jobs and underqualified for most legal jobs.  (A J.D. does not substitute for a paralegal certificate either, I’m finding.) Add to it 5 years of being disabled with seizures, and it makes sense that I’m not hearing back from anyone. At this point, I’m beginning to think that my best bet is to sign up with a temp agency and see if I can get any work based solely on my skills.

As for having a band: tomorrow, I have a final audition with a local band, which makes practicing the order of the day today.

Well, practicing, doing dishes, doing laundry, and cleaning. But what is life without a little housework? Gotta stay humble, right?

The Triumphant Return Of Mistress Renee.

For a very short period in my life, I allowed myself to try something wild, unusual, and very far outside of my comfort zone.  I was in my first year of law school, had recently divorced, and was living alone in Los Angeles.  I was meek, lonely for friends, searching for myself, and decided that regardless of how crazy it was, I was willing to put in the time, effort, and emotion to train to be a Dominatrix. It turned out to be one of the best experiences of my life, and, surprisingly, one of the best things I ever could have done for my mental health.

I Can’t Believe You Are Sharing This – Have You No Shame?

You know, this is something I thought a lot about. And at the end of the day, I don’t think I have anything to be ashamed of here.  I trained so that I could put on shows at clubs. It’s performance art. I wasn’t a prostitute or anything. I never did any sort of house-calls or had a stable of submissives who did whatever I wanted them to because I gave them the kind of pain they wanted to feel. I didn’t touch anyone sexually or inappropriately, nor was I ever naked or partially naked in any situation that the training or performing involved.

In all honesty, I put on one show, on one night, and decided, “It’s not for me.” and quit.  But I didn’t quit before I learned some important things about myself and about how to tackle life.

Crafting Who You Want To Be

I didn’t realize it at the time, but my Master was teaching me how to like myself — how to actually be the person I most wanted to be in life — by allowing me to create an alter-ego. I first had to come up with a stage name, which felt ridiculous: but what appeal is there to “Rachael”? Does it really inspire any “oohs” or “ahhs”?  This alter-ego allowed me to play make-believe and act differently than I usually did – because it wasn’t me… it was her doing those things. It allowed me to demand respect. It allowed – no, required -me to stand taller. It allowed me to spend money on myself, when I never normally would. It allowed me to spend time reading books on psychology and sexuality and not just spend all of my time on law.

It made me a better version of myself on almost every level, because “Mistress Renee” was not afraid of anything or anyone, where “Rachael” was afraid of her own shadow.  I learned the importance of having the courage of my convictions, the importance of follow-through on threats, the delicacy of negotiation, and the necessity of attention to an infinite number of details for safety’s sake. I learned how to not appear intimidated even when I was almost ready to throw up right where I stood. I learned how to crack an 8 foot signal whip, and the importance of not doing it inside. 🙂 And I learned that I look good in corsets, and I love them.

Hanging Up My Boots & Crop

Fun times with the “Mistress” moniker didn’t last long at all.  One of the first things I learned about myself was that, regardless of the desires of the submissive I was working with, I don’t like physically hurting anyone. It’s just not part of who I am.  It also didn’t help that I had just met a man named Adam who made me smile all the time… and he didn’t particularly enjoy the idea of his new girlfriend publicly performing like that.  Those two things made the decision to quit very clear.

Power & Control

Being a Top is all about power and control. And you have to have it over yourself before you can have it over anyone else.  You have a responsibility to whoever you’re working with to know exactly how the show is going to go.  You have a responsibility to yourself to know that you’re clear-headed, and that you’re acting in line with the agreement you’ve made. You are always on the hook. It is up to you to make sure things go right – not just for yourself, but for your partner, and for the crowd that is watching.

Power & Control are also two things that I feel that I have lost in my life over the years to MS and seizure disorder… and that I am taking back, along with my self-esteem.  I have, for some time now, felt like I am at the effect of my body and my circumstances, and been woefully depressed, convinced of my own impotence to make life better.

The Triumphant Return of My Second Self

Last night, when I told my therapist about having gone through training, she lit up. She said, “You already have all the skills you need to be okay, then. You just need to dust them off.”  And it was in that moment that I could feel my psyche lacing up a pair of high-heeled patent leather boots, and saying to me, “You know how I am to be treated.” and I knew that I would be better than just ok.

It was in that moment that I realized that I have to start thinking of myself as the person that I want to be, and not as the person I judge myself to be.

There are going to be some serious changes in how I take care of myself.  I’ve forgotten that inside of me, there’s a person who doesn’t take any shit, who deserves to be treated like a goddess, and who actually thinks rather highly of herself.  I think I deserve to fully integrate her… and maybe, if he’s agreeable, to go out clubbing with my husband.