Rae vs. the Relapse: Round 1! FIGHT!

21 May

Wow, I can’t believe it’s been so long since my last post.  Life has been happening… in that sort of busy everything-comes-at-once sort of way.

Relapse-a-rama

Right now, and for the last week or so, I’ve been dealing with an exacerbation (or “relapse”) of multiple sclerosis.  My back on the left side has been shifting between numb, tingly, and burning – and for the first part of the relapse, the same was true of the left side of my chest.  (Nothing is as strange feeling to me as a completely numb boob that I can feel with my hand but not feel on my chest.) Add to the mix a few seizures (which were totally unexpected since I’ve been mostly seizure free this year) and some crushing fatigue and you’ve got a recipe for “Me on a Medrol dose pack.”

One thing that is different about having a relapse here in Chicago from when I had them in Los Angeles, is that my current MS neurologist (Dr. J) has never ordered Solumedrol-IV drips. (I’m using the term “MS Neurologist” to differentiate him from the neurologist that I see for my seizures, who works at the same hospital.) In LA, I was getting Solumedrol drips fairly regularly – probably once every 6 months or so.  In fact, this is only the second relapse that I’ve had since moving to the Windy City 2 years ago, and both times, they were handled with oral meds.  This is not a complaint. I’m not a huge fan of the 3-5 days of drips, but they do get the job done thoroughly.

Dance of the Meds

When I spoke with Dr. J on Friday, he let me in on some news about the progression of my MS that I really didn’t like.  He was comparing the MRIs from beginning of March last year to ones taken at the end of July of last year… only a 5 month window for change… but he said that there were significant changes.  Apparently, many of my lesions were/are growing in size and number, suggesting that the Copaxone that I inject nightly either isn’t doing its job to slow progression, or isn’t doing it well enough for him to want me to stay on it. He suggested that we talk about my getting on Tecfidera (BG-12) at our next appointment (which is June 3.).

So why is that problematic?  Because you can’t get pregnant on Tecfidera. Copaxone is the only disease modifying drug for MS that is tested safe for becoming pregnant… and I have been working to get off all drugs that would negatively affect a pregnancy for over a year now.  I am, for the first time in 6 years, not on anything that could badly affect a baby.  No Cymbalta, no Abilify, no Topamax.  The only drug that I take now that could have any affect on the pregnancy is Nortriptyline (which I take both to deal with MS pain and depression), and it’s been considered one of the safer antidepressants to use during pregnancy for years.  I am, however, considering dropping it too if we make the choice to go ahead and start our family.

It’s All About Timing

I am strongly considering getting on Tecfidera right now anyway, and just stopping taking it when we’re ready to conceive. Adam and I have so many mutual goals right now that are at odds with having a baby right now: (1) achieving optimal body weight, (We’ve been hitting the gym 4-5 times a week for months now.) (2) buying a house, and (3) finally going on a vacation somewhere together.

I know that it would be better for the pregnancy if I were not overweight. Right now, I’m 70 pounds heavier than I want to be, but I’m on course to be my optimal weight in about a year.  A year is also about how much time we need to save up the downpayment for a house. Right now, we live in a 2 bedroom apartment. Could we make room for a baby? Sure… but it’s not ideal. And then there’s the very real fact that kids are like money vacuums. The likelihood of Adam and I ever getting to go to a resort together when we have an infant is ridiculously low.

So, it seems, from my perspective at least, like the smart move would be to switch to Tecfidera for at least a year, and put off becoming a mother until our situation is more ideal. At least I’m not baby-crazy like I was this time last year.

I’m also hoping that The Assistance Fund will work with me to pay for Tecfidera if I switch from Copaxone. Both drugs cost more than $50,000 a year, so the change shouldn’t affect how much they’re paying, if they’re willing to continue to help me out.

Right Now

As for how I am today: I can feel my chest, my back is sort of “buzzing” or fuzzy feeling, and I’m not crazy fatigued. I haven’t had a seizure in the last 3 days. This is good for not being done with the dose pack yet. I’m on my second to last day.

If I’m lucky, I’ll get most of the laundry and dishes done today before therapy.  Hope you’re all doing well.

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Disability & Your Relationships With Your Self And Others

7 May

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.

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A Post About Living With Seizures

25 Apr

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.

<3

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MS and Supplements

25 Apr

For the last few months, I’ve been extremely lucky.  My MS symptoms were minimal. There were many days where I felt completely normal. But then there was yesterday, when I had 2 seizures, fatigue, and pain… and now there’s today.

MS is kicking my ass right now.

I went to sleep at 10:30 last night, so you would think that waking up at 9:30, I’d be refreshed and ready to take on the day.  Unfortunately, there are many times where MS doesn’t give you that luxury.  I am fatigued, hardcore. I’ve only been awake an hour and I keep thinking about going back to bed. I’m aching all over (and it’s not the good ache from working out) and am doing my absolute best to maintain a positive outlook.

I’m very glad that I learned about identifying ANTs (automatic negative thoughts), because I can clearly see the irrational thinking (and feeling) caused by my physical condition. I have to remind myself of the objective truth: that I will not always feel like this, and I am not fighting a losing battle. Or, to put it in positive terms (which is very important when you’re fighting ANTs), “There will be many days when I feel better than today, and being compassionate to my body and my self when I feel bad is part of fighting well against the awfulness that is MS.”

All of that aside, one good thing has already come from all of this: gratitude for the position that I am in. I am extremely grateful to be on disability right now.  I had been feeling well for so long that I was spending upwards of 3 hours a day applying for jobs. I even had a phone interview and submitted a professional writing sample for a job just last week. Today, however, I can’t imagine being at work. Typing is strenuous. It’s like I can actually feel the individual muscles in my hands as they move. Thinking is slow. I very much feel like I am stuck in the mud. Doing laundry and washing dishes feels impossible, but I’m going to try to do it anyway because I’m stubborn like that.

Would supplements help?

I honestly wonder if supplements would actually help on days when I feel like this, or if MS just steamrollers over everything.

Over the last several days, I have been checking out Examine.com and reading up on supplements. They have over 17,000 studies on supplements that they’ve collated and organized so that you can see what science says each supplement does well and what detriments they cause.

I’ve determined that the following supplements are ideal for folks who have MS: Vitamin D, L-Carnitine, Fish Oil, Creatine, Magnesium, Curcumin w/ Black Pepper, Kava, and Rhodiola Rosea.

These supplements have been found to have the following relevant effects:

Vitamin D: reduction of risk of falls, of risk of MS in folks who aren’t already affected by it, of MS symptoms (when taken in higher concentrations), and improvement in muscular and neural functionality in the elderly and ill.

L-Carnitine: reduction of fatigue, muscle soreness, perceived exertion, inflammation, and symptoms of MS, and improvement in cognition and attention.

Fish Oil: reduction of inflammation, depression, muscle soreness, anxiety, and cognitive decline, and improvement in memory, subjective well-being, processing accuracy, reaction time, and cerebral blood flow

Creatine: reduction of depression and improvement in strength (power output), subjective well-being, fatigue resistance, cognition (for vegetarians),  alertness, and blood flow.

Magnesium: reduction of migraines and depression, and improvement in sleep quality, muscle oxygenation, and aerobic exercise.

Curcumin w/ Black Pepper: reduction of inflammation, pain, fatigue, and cognitive decline, and improvement in blood flow, intestinal motility, and vascular function.

Kava: reduction of anxiety, depression, and stress, and improvement in subjective well-being, cognition, and sleep quality.

Rhodiola Rosea: reduction of fatigue, depression, stress, perceived exertion, and muscle damage, and improvement in subjective well-being. cognition, and processing accuracy.

I would also list Vitamin B-12 here, but they don’t have a page for it on Examine.com and I am too tired/lazy to read a bunch of scientific studies on it.

Check out info on Vitamin B-12 here.

Great, so where do I get these supplements?

You can purchase any or all of these supplements on Amazon.com.

Vitamin D
L-Carnitine
Fish Oil
Creatine
Magnesium
Curcumin w/ Black Pepper
Kava
Rhodiola Rosea
Vitamin B-12 Liquid

If you’re only going to get a couple,  L-Carnitine & Vitamin D are the only ones with scientific studies that specifically say that they reduce MS symptoms. I can tell you from personal experience that Fish Oil makes a big difference too. I personally like Coromega for its bioavailability and good taste.

5-hour Energy to the rescue!

Okay, it’s taken me 3 hours to write this blog entry. That’s how slow I am today… so I’m going to take 8,333% of my daily recommended dose of B-12 by way of 5-hour Energy and get to doing my chores now. I hope you all are having a good day.

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There’s No Better Time To Foster

18 Apr

It’s kitten season! Finally, the weather is warming up, and love is in the air… but not just for us humans! Cats around the world are feeling that spring fever that creates so many new babies too. Every year, from late spring to early fall, animal shelters have a massive influx of homeless kittens, and in an effort to save the lives of these sweet babies, they look to the community to find people who are willing to foster an animal (or three) and raise them into good pets.

What It Means To Be A Foster Parent

Baby cats need a lot of attention, whether or not they have the advantage of being around their mother. Kittens can’t properly see until they are 5 weeks old, so they need help with the very basics of life: eating, going to the litterbox, and keeping clean and warm. They also need to be socialized so that they know it’s okay to trust humans and other animals.

In some instances, the kittens are separated from their mother so early that they need to be bottle-fed. The experience of bottle-feeding a tiny kitten creates the strongest bond possible between a cat and a human. They actually come to think of you as their mother. But don’t think that it’s all cuteness and fun — bottle-feeding requires that you mix formula (KMR – kitten milk replacement) and clean bottles every 2-4 hours. In many ways, it’s like feeding a human baby.  It’s important when bottle-feeding that you hold the kitten properly so that there is a smaller chance of the kitten contracting pneumonia by inhaling the milk instead of drinking it.

Working with kittens that have reached 4 weeks of age is significantly easier, because you just have to help them learn how to eat solid food. It is always best to start with wet food and then move to dry food once they have stronger and larger teeth.

Regardless of the age of the kitten, a foster parent will always need to bathe the animal, sometimes more than once a day.  Kittens are messy, and they can’t clean themselves with their tongues yet!  It is the responsibility of a foster parent to help keep the kitten healthy.  This also means cleaning the litter box every day.

The most important thing that a foster parent does, however, is provide a loving home where the kitten can live and grow. They also provide fresh food and water and give medications to the animals when necessary.

Foster parents also are responsible for following shelter guidelines and taking the kittens to the veterinarian to be spayed or neutered when they are of a proper age. By making sure that the fostered kittens have been altered prior to adoption, foster parents help disrupt the cycle of breeding that leads to there being so many homeless kittens.

The Benefits of Fostering Kittens

My husband and I have been fostering kittens since 2007. We have raised over 50 kittens, and in that time, we learned a lot about ourselves as people and a lot about kittens themselves.

These animals are, in many ways, like us.  They have distinct personalities, basic needs that must be fulfilled, and they can show appreciation and affection.  They want attention, and they want to play.

For a couple who has not had children, it can help provide insight into how you might act towards each other when you have children. There are many chores that need to be done, and division of labor is an important thing to establish. Fostering kittens also gives you the opportunity to nurture and love a creature that is in real need of protecting and care, while at the same time knowing that eventually that animal will find its “forever” home because of you.

For many people who are disabled, fostering kittens provides an opportunity to care for an animal who needs more help than they do. It is empowering to be able to see a kitten grow and become playful and happy because of the things that you are doing to help it along.  Also, there are many therapeutic benefits to simply taking the time to love on a kitten.  It’s been scientifically proven that petting an animal lowers your blood pressure and stress levels.

For folks who are single, the animals provide companionship and hours of entertainment.  Adam and I have countless videos of kittens playing. Those videos never cease to make me smile.

But there’s a hidden gem of a reason to foster kittens — and that is that volunteering for an animal shelter makes you a better employee and leader.

Volunteers Are Better Leaders and Employees

According to Forbes, “one of the greatest challenges in motivating employees to sustain strong business performance is to make them feel like there’s a larger purpose to their lives than just meeting financial goals… .” (http://www.forbes.com/sites/karlmoore/2011/12/21/volunteering-a-great-way-to-learn-real-executive-leadership/) When you are fostering an animal, there is no question that your life has meaning. All you need to do is look into the eyes of the animal that you have saved from extermination to know that you are doing good in this world.

Forbes goes on to say, “By volunteering for projects in nonprofit organizations, experienced executives can hone their supervisory and leadership skills, and aspiring executives can gain the experience and networking opportunities that could lead to plum positions in the company.” If your company sponsors a particular animal shelter, working with kittens could help your job prospects!

Whether you’re networking for business purposes or not, a foster parent can’t help but make friends with other foster parents in their organization. You see each other on a regular basis at regular animal shelter meetings and adoption fairs.

Fostering takes you outside of your comfort zone, and gives you an opportunity to work with new challenges, people, politics and interpersonal dynamics. In this way, working with kittens offers new perspective on priorities.

Fostering also helps you practice the skills of patience and compassion, and when your kitten gets adopted, there’s a feeling of pride. Many times, people who adopt kittens that were fostered decide to stay in touch with the foster parents. That’s a second opportunity for networking and friendship building.

Thousands of Kittens Need Homes

There’s no better time than now to begin working (and playing) with kittens.  Every year, thousands are put down due to inadequate room at local shelters.  You could be a hero to an animal and play an important role in its life.  Pets change the lives of their owners in many positive ways.  Giving your time to help a baby cat become a good pet is immeasurably rewarding.

If you’re ready to sign on and become a foster parent, check your local animal shelter’s website.  Oftentimes, there are forms to fill out for prospective foster parents. They will also have more information about their program there.  You can find your closest local shelter and tips about fostering by visiting http://www.petfinder.com/animal-shelters-and-rescues/ .

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Things Are Happening!

17 Apr

It’s nearly the end of April, which means that it’s been 4 months, virtually seizure free. I’ve been applying for jobs, well, like it’s my job.

Today, I had a good telephone interview for a position as an administrative/marketing assistant. They want me to write a blog post for them, with the topic left up to me. They just want me to write about something that interests me.  I wonder if they realize that asking a creative person to do “whatever they want” can pretty much stymie their ability to create anything because they think about too many things.

I had a good friend offer me $100 to write about farm animal porn. I love my friends. I love farms. I do not, however, love animal porn.

Regardless of all that, I find it incredibly amusing that I have no problem writing this blog post, but when thinking about writing this “fake” blog post, I find myself filled with the same disdain that I used to have for writing 5 paragraph essays in 8th grade.  It’s like I care too much about the formatting and am worried about how the content will portray me.

I am actually concerned that if I write about kitten fostering (which is one of my interests on my resume) that I’ll seem like a crazy cat lady, and if I write about music or cooking that I’ll seem like I’m not being serious. Believe it or not, I actually started this entry in the hopes that it would turn into the entry that I needed to write.  Either way, I’m fairly certain that my first sentence should not read as it currently does. “I love kittens.” is not the start to a decent professional essay.  It does, however, start a decent essay about farm animal porn… *lol*

 

 

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I’m In Good Company

5 Apr

I’m starting to be more forgiving of myself for failing the CA bar exam twice. It was especially helpful when I read an article about the exam from the Wall Street Journal, written in 2005 (the year I started law school) – here’s the pertinent part:

Kathleen Sullivan is a noted constitutional scholar who has argued cases before the Supreme Court. Until recently, she was dean of Stanford Law School. In legal circles, she has been talked about as a potential Democratic nominee for the Supreme Court. But Ms. Sullivan recently became the latest prominent victim of California’s notoriously difficult bar exam. Last month, the state sent out the results of its July test to 8,343 aspiring and already-practicing lawyers. More than half failed — including Ms. Sullivan. Although she is licensed to practice law in New York and Massachusetts, Ms. Sullivan was taking the California exam for the first time after joining a Los Angeles-based firm as an appellate specialist. The California bar exam has created misery for thousands of aspiring and practicing lawyers. Former California Gov. Jerry Brown passed on his second try, while former Gov. Pete Wilson needed four attempts. The recently elected mayor of Los Angeles, Antonio R. Villaraigosa, never did pass the bar after failing four times.

After reading this, I thought to myself, “Wow, even amazing attorneys and people in strong positions of power fail this exam multiple times — and more than that, you don’t even have to pass to get a job where you make a real difference to society, just look at Mayor Villaraigosa.” It took a lot of the sting out of the shame that I carry with me.  If someone who is described as a legal “rock star” can fail, without having seizures, it only makes sense that I would fail with them.

Actually, that was the second thing I thought. The first one was, “Wow, it must have been really difficult for Kathleen Sullivan to deal with the public embarrassment of failing this exam. I wonder how she handled it.”  And the answer is surprisingly simple: She just took the test again and passed. From everything I see about her on the internet, she just acted like the failure was just a temporary setback.  She’s still a partner at a prestigious firm. She’s still influencing law. She didn’t let failing 1 exam have any power in defining who she is.

Add to this an article ranking the difficulty of the states and their exams. California is #1 as hardest.  IL is #32, and I scored 5 points higher than the average LSAT for the state… so I’m starting to think that if I do want to cling to the hope of becoming an attorney and take this exam, I probably won’t fail.

I think I’m done thinking of myself as a failure because I didn’t achieve the status of attorney in CA. I think it’s time, instead, to focus on what kind of life I actually want to build for myself and to start action in that direction.

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Failure = Not This.

3 Apr

Last night, I had therapy, and we focused on how I could regain my self-respect.

There was the question of how I lost it in the first place. It came down to the fact that I failed the CA bar exam twice.  It didn’t matter that I was very close to passing each time.  It didn’t matter that I took the test both times with seizures that were so severe that I actually fell out of the chair during one of the exams.  I deeply, irrationally, believe(d) that regardless of any of that, I *should* have passed because of how hard I worked, and that by missing the mark, I have legitimate, definitive proof that I am a loser and am not worthy of anyone’s respect. (And yes, as I see that written out, I do see how fucked that thinking is.)

We spent the majority of the session exploring what failure means to me, and attacking each statement individually.  There was a lot of irrational bullshit in there… plenty of ANTs. Some of the ways that I felt were genuinely silly when I saw it written out on a whiteboard. One that really sticks out, even the next day, is this one: “Failing the bar exam means you suck at life.”

My therapist said then, “So in order for a person to be good at living, they must be a good test taker, have gone to college and law school, graduated both, and passed this test? Well, I fail. I didn’t choose law. In fact, most of the people living on this planet would fail immediately.”

Apparently, my inner bully suggests that I will not respect myself until and unless I finish what I started — meaning that I think it’s okay to hate on myself until I’m a licensed attorney, or at the very least am on the path to becoming one.

When it comes right down to it, I worked my ass off for 3 years for my J.D. and prepared for the exam 3 times. I’ve invested thousands of dollars and immeasurable emotion in pursuit of this license.  In my mind, you’re only really a failure when you stop trying... and I had, until last night, given up on the prospect of being the entertainment attorney that I’ve wanted to be for the better part of my adult life because, frankly, taking the test is expensive, and after the second try, we didn’t have the money for me to try a third time.

But my situation has changed: I am not currently having seizures (which were a big part of why I failed in the first place – both the seizures themselves and the medications that I took to help control them) and I’m not taking Topamax or using weed for seizure control anymore, and I now have the opportunity to earn the money that it would cost to take the IL bar exam and try again.

So here are the questions I have to answer:

  1. Am I willing to cowgirl up and try again, accepting that it’s going to take a year to save up for it and 8 weeks of intense study, knowing that I am in a different state where it will be more difficult to be an entertainment attorney?  
  2. Do I dare to hope to simply re-take my life where I left it off before physical and emotional shit hit the fan, acting like it was just a hiccup in the story of my life? Or am I just fantasizing about wiping my slate clean by proving my worth through gaining a state “seal of approval”? Something about that concept rings true — and if that’s the case, it’s not a good reason for taking a licensing exam.
  3. Am I just trying to force myself into this because of how hard I worked in my past, or do I genuinely want to be an attorney?
  4. And if I choose not to try to become an attorney, can I even make that decision with my head held high? Do I actually have the option to not take the test? Is it “law licence” or “no self-respect” for me? Frankly, that doesn’t seem healthy or right…and because of that, I’m almost inclined to say “No” to taking the exam because I’d be doing it for vanity — just to prove something to myself. And that’s bullshit.

 

Why my inner bully chooses to fixate on this exam and not on being a successful professional musician is beyond me. I put way more time into music, but for whatever reason, am at peace with the idea that I’m not the rock star I thought I was destined to be when I was younger.

I keep asking myself, “What do you want out of life? How will being an attorney enrich your day-to-day? What will ‘being an attorney’ bring to your life that you don’t have now?” And the truth is, for whatever reason, I still feel like I should be able to support myself and my family.  And yes, that’s a “should” you see. Irrational thinking — an ANT. But it was one of the big reasons I chose to go to law school. I wanted to be financially independent, so I would never need to depend on anyone else for my livelihood.

Right now, Adam is the breadwinner, and that’s not a bad thing… but I don’t respect myself because I currently couldn’t live without his support. I am not independent.

The thing is, it only matters that I be financially independent if I believe there’s a possibility of being on my own again. So, those thoughts come straight from protective barriers I put up for myself after my first husband left.  Currently, I am living happily in a secure and loving marriage… so those protective barriers and ideals of what I “ought” to be don’t really apply. It’s old garbage from a bad time (and more “ought/should” thoughts which are not helpful!).

…and there should be more to wanting to be an attorney than just wanting to be financially sound.  Being an advocate is all about helping others, and I would have hoped that would have been my focus, but it’s not. I can get a job that makes good money, without a license to practice law, and be financially solid.

I dunno.  Last night, my therapist was helping me figure a timetable for this goal: a year to get a job and save up enough money to take the test, then taking the test in July of 2014.  But right now, as I write this and re-read it, I’m smelling the scent of my own bologna.

I think it might ultimately be more beneficial to me to learn how to accept and respect myself  just as I am than it would be to cave to the demands of an inner bully that is motivated by vanity and greed.

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Getting Back to Myself

1 Apr

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.

 

 

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Back to “Normal”

25 Mar

So, last week was different. Adam had union arbitration hearing training for work all week, and they held the classes at a hotel that is located near his parents’ house. That meant that we changed things up a little bit.  I traveled down south with him at dawn, and spent the day at the Majka house.

We arrived at his parents’ house at around 7 a.m. every day. I made him eggs for breakfast, and then he went to training and I went back to sleep for a little while.  Ann (Adam’s aunt) and Gerry (Adam’s dad) are disabled also, so I got to spend time with both of them.  Each day, Ann would take me to the grocery store to get ingredients for dinner, and each day, I made dinner for a family of 6. (Adam’s parents, aunt, brother Jeremy, and the two of us)

I really liked how the days flowed.  Waking up at 5:30, getting showered, fixing my baby breakfast, and then focusing on preparing a good meal for the whole family for the rest of the day made me feel like I was really making a positive difference in the lives of everyone around me.  I didn’t even have much time at all for Facebook.

But today, things are back to normal. I told Adam that I was going to wake up with him and make him breakfast this morning, since that had become a thing we did, and I liked it — but I barely remember him kissing me goodbye this morning. I must have slept through the alarms, and he didn’t want to wake me.  I’m going to try harder tomorrow morning.

It seems almost sad, sitting here in my pajamas at 10:30 a.m., having no idea what I’m going to cook for a supper for two, knowing that I just have to take care of us.  I guess it’s a good thing. I mean, it’s been a week since I’ve done the dishes here, and there’s definitely laundry to do as well.  There’s no food in the fridge to make dinner, so I’m going to have to walk to the grocery store as well. It’s not like I don’t have anything to do today.

I suppose the thing for me to do is to focus on the same things that I would have focused on if I were at the parents’ house: making it as nice for Adam to come home as possible — instead of focusing on the things that have come to mind this morning: the fact that I’m alone all day and kind of lack direction.

At least it will be easier to get back to meditating. I didn’t have time to do that at all last week, which made the latest 21 day Chopra Center challenge kind of a wash.

If spending time at the parents’ house showed me anything, it’s this: I enjoy family… and truly want kids. I want more people in my life to care for. And I’m deeply tired of spending so much time alone.

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