Out Of Control, And That’s OK

There’s been a lot going on recently that has been anxiety-producing…an unusual amount of mass murder, a trainwreck of a political circus, and, of course, personal stuff.  There are so many things that I would change if I could. The inherent unfairness of life weighs on my spirit.  I desperately want to help make the world a better place — or at least a kinder one… but I am one Rachael. I can only do so much.

I cannot:

  • Stop complete strangers from shooting, stabbing, or running over people.
  • End systemic racism.
  • Fix end-stage capitalism or neo-feudalism.
  • Make the geopolitical landscape either make sense or work the way that I want it to.
  • Force anybody’s political ideals or morals to match my own.
  • Make any decisions about American domestic or foreign policy.
  • Disarm all the nuclear bombs in the world.
  • Make teething less painful for my son.
  • Force the higher-ups at anyone’s place of employment to make wise decisions for the health and morale of their workers.
  • Make it any easier or more fun for anyone to look for a job.
  • Know whether or not the estriol treatment is having a positive effect on my MS.
  • Know whether or not it would be more beneficial for me to get back on Copaxone or if I should try to convince my neurologist to let me try Lemtrada or Ocrevus… or if I should just keep doing Vitamin D and estriol.
  • Know when the optimal time actually is to have a second child. (I have been thinking about this particular question way too much recently.)
  • Make Humana stop messing up my medical billing from over a year ago.
  • Make the muscles in my arms and legs stop randomly, painfully spasming (though cannabis does a good job of quieting it down for a few hours at a time)
  • Cure MS or seizure disorder… or any other medical condition, for that matter.
  • Blow thousands of dollars and hire a full staff.  All I want is a maid, a gardener, a contractor to renovate our home, a nanny, a full-time driver, and an on-call masseuse, so that I can get all the things done that I feel need to be done. Totally reasonable, right?

Panic and despair don’t help anything, and no one else can “fix” life either.

relax

I recognize that I’m not helpless to be at the effect of these worries and situations.

I can:

  • Meditate and let the fear pass.
  • Exercise.
  • Take all my prescribed medicines as scheduled.
  • Talk with my therapist when I need to.
  • Hold my baby tight, love him with all my heart, and teach him to be compassionate to himself and others.
  • Do as much housework as possible to help relieve some stress for my husband while also showing myself in a clear way that I make a visible difference in the world around me.
  • Make healthy food choices for my family.
  • Comfort friends who are sad.
  • Find a way to compliment or show appreciation to every person I talk to.
  • Make music and art.
  • Share my experiences so that others who face similar challenges don’t feel so alone.
  • Be an ally, an advocate, and involve myself in the community
  • Do my best to both give myself credit for what I already do and still be ambitious.
  • Choose optimism.
  • Focus on gratitude.
  • Consciously look for the good in life.
  • Remember that I don’t have to read my FB newsfeed like it’s my part-time job. I don’t need to internalize anyone else’s stress.

My mantra for the last few weeks has been this, and it’s serving me very well:

doit

 

 

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Stardust

So, David Bowie died yesterday… and today we all found out about it. It sucks.  He sparkled — sometimes literally.  Hell, the work he left us to enjoy for the rest of time still sparkles.

It was 4 p.m. before I checked Facebook today, and the first thing that I learned was that David Bowie not only had passed away at the age of 69 (which, let’s be fair, is the age that I think he would have wanted by his name for all time – based entirely on how cheeky it is), but he had managed to release an album saying goodbye to his fans that he put together while battling terminal cancer. He even made one specific music video as a “finale.” Check it out.

If that doesn’t say, “Keep creating art, no matter what,” nothing does.

That’s why I’m writing right now, even though I know I’m not at my best.  These words, and whatever I manage to scratch down on paper or record to video or sound, will one day be all that is left of me for everyone else. All that will be left for Henry.

You don’t have to be terribly creative to leave important parts of yourself behind for others. My Poppy put together several scrapbooks, for example. They’re filled with comics and poetry and articles that meant something to him. I’m lucky enough to have 3. And when I miss him, the contents of those scrapbooks feel like a conversation that I get to have with him through space and time. They, in many ways, remind me of Facebook, and that similarity makes me hope that when I’m gone, Henry will be able to look through the thousands of posts on my timeline when he is missing me and feel like I’m still here for him.

They also make me wish that my other grandparents had kept journals or scrapbooks. And they make me hope that my parents might have the foresight and the time to do so as well.

Today, I had so many time-travel seizures that I honestly don’t remember the day, aside from Adam letting me know that I’d found out about Bowie’s death at least 9 times. Personally, that’s 9 times too many. But, hey, if I’ve got to be shocked and saddened at someone’s demise, at least it’s an artist whose work I have enjoyed since I was a small child.

He didn’t let cancer stop him from being the artist that he was — from giving all of us fans more music and poetry to enjoy for the rest of our lives… so, I’m not going to let MS and seizure disorder stop me from creating either — even if what I’m creating seems completely mundane to me at the time. I have to remember: it’s not mental masturbation; it’s not just for me; and no one else has my point of view. It’s exactly as true for you.

sparkle2

because

stardust

 

 

Apples & Oranges

Week 15!

week15-2I’m currently very amused by the fact that some websites say our baby is the size of an apple and others say s/he is the size of an orange. There’s something poetic and hilarious about it because it means that you really can compare apples an oranges, at least as far as size is concerned. 🙂

week15 For all interested parties, I am now showing!  Most of my clothes, though, are loose, so unless you felt my belly, you still wouldn’t know.  One of the perks of losing ~20 pounds before conception has been that most of my clothes still fit very comfortably, jeans aside.  I basically am living in my pajama pants and t-shirts. That hasn’t stopped me from falling in love with maternity clothing, however.  I honestly believe that belly panels and shirred sides on shirts are some things that plus-sized women’s fashion has been desperately needing for a long time.

And can I just say how totally bizarre it feels to have all of your organs shifted around and up, and for your lower abdomen to start feeling kind of like an inflated ball?  Because it’s straight-up weird. And it’s occasionally acutely painful.  The best way I can describe it for guys or ladies who haven’t experienced it yet is that sometimes you get cramps that feel sort of like the cramps you get when you are super constipated and really have to make a bowel movement, but slightly higher in your abdomen… and no amount of pooping is going to make anything better, so eating a big handful of prunes, while great for its fiber and nutrients, is ultimately folly.

This week has been much better in the realm of tummy issues, though. Only 1 day where I got sick – otherwise, things are alright!

One thing that has been a bit disturbing to me is that I’ve had a few seizures.  Not like, a ton or anything – heck, it’s nowhere close to what I dealt with prior to pregnancy, but it still freaks me out when it happens.  I got so used to not seizing! I got some tinglies in my feet and back yesterday too, so I’m willing to bet money that I’m fighting off some kind of ickyness. It’s nothing to be worried about, just so you know. My epileptologist told me that as long as I continue breathing through the seizures and am not falling, it’s not likely to harm the baby. Her biggest concern is making sure that me and Hush Puppy have sufficient oxygen at all times.

Pre-Birth (or “Soul”) Contracts

contract-ariel

So, one thing that Facebook is really great for is introducing me to concepts that are second-nature to friends of friends but are totally unusual and bizarre to me.  One of these things is the concept of the Pre-Birth Contract.

A quick summary: Before you were born, you and a bunch of spirit guides got together, reviewed your last lives for what was good and bad, and decided a path or “destiny” for yourself to move towards enlightenment — to better understand what life is all about — to better understand how you are a part of God.  This solidifies the idea that there are no coincidences or accidents — this was all part of God’s (and your) plan. The curve ball?  You forget all about the contract you made upon incarnation and have to experience it without the knowledge that you’ve chosen your path for your higher self’s greater good. That’s the only way for you to experience free will and the ability to creatively problem solve.

At first blush, this notion made me angry (It seemed like the cruelest form of victim blaming I’d ever seen.) and then it amused me greatly. My response to my friend’s friend was, “If I planned the life I’ve gone through for my greatest good, I am a serious pain in my own ass.”

I mentioned it to Adam, who is an even bigger fan of table-top roleplaying games than I am, and his immediate response was, “What a neat idea! It’s like cosmic character creation.” He made a joke about how there’s got to be real estate in Heaven, and that we’re all just trying to get to the de-luxe apartment in the sky — that folks with harder lives get better quarters.  Imagining that I’d get better digs because of MS and seizure disorder gave me the giggles.  When I said, “I’m doin’ it all for us,” he was quick to remind me that we’re only married until death, so he’d have his own place.  I asked him a moment later if my eyes were actually shooting laser beams into his face or if I was just imagining it. 🙂

I wondered if Hush Puppy was currently in negotiations, or if that happened before conception.  Then I wondered, with all the things I’ve endured (and continue to endure), what enlightenment my soul was after.

Why NOT me?

whynotmeYesterday, my friend Erika wrote a great blog entry about how she deals with self-pity in regard to having MS. Her tactic is not to say, “Why me?” but rather “Why not me?”  She reminded us all that everybody’s got their burdens to bear, and that it’s better to do so without unnecessary sadness over the hand you’ve been dealt — but then she said something that I’ve seen many, many folks with MS say.  She said, “I want my ‘old’ life back.”

For whatever reason, when I read that, it made me think about those Pre-Birth Contracts. It made me wonder, “What am I trying to learn?” I can’t count the number of times over the last 7 years that I’ve wished that I never developed MS… the number of times I thought about how much better life would be if I were still able to drive… to be a full-time attorney and to still perform musically without fear of experiencing seizures on stage… the number of times I have shamed myself for not being an equal financial contributor to our household… the number of times that I worried about being a burden to the people I love, or worried about frightening children with my seizures… the number of times I’ve had to fight suicidal ideation.

It got me thinking: what good has come out of dealing with MS and seizures?  And the answer was, “Quite a lot.”

The Upside of Down

findthegoodHaving MS and seizures has caused me to learn many lessons that I would not have otherwise have learned.

  • It’s absolutely forced me to learn the importance of regular meditation and/or prayer for physical and mental health.
  • It has highlighted the need for self-compassion and made me learn how to practice it.
  • It’s made me question the way that I think about everything – and to constantly examine those thoughts for truth and rationality.
  • It’s made me wildly change my expectations of myself and others.
  • It’s made me face some of my biggest fears (like spending huge amounts of time alone or being locked up in a mental hospital against my will) and to learn how, not only to cope, but to thrive in situations that prior to seizures, I would have avoided at any cost.
  • It’s required me to face demons of past abuse and to do the hard work to move as far past those memories as possible by both growing as a person and learning to forgive the people who caused me harm to begin with.
  • It’s made me take a long, hard look at what I thought was important and to reassess my priorities.
  • It’s made me redefine what love means, and to see how vital it is to not only feel gratitude, but to express it loudly and regularly.
  • It’s made me a more kind, empathetic, compassionate person to others.
  • It’s made me much, much more patient. (Which isn’t saying much, since, emotionally, I’m still wildly impatient – especially with myself. Still, 2014 Rae is way more patient than 2006 Rae.)
  • It’s made me redefine what it means to be a good friend, and to more fully appreciate the people who are willing to be on this ride with me.
  • It’s made me painfully aware of mortality, of the importance of never taking any aspect of your body or health for granted, and of the fact that doctors are just people who are doing their best to help people with the knowledge that they currently possess.
  • It’s helped me to recognize what’s really important versus what society and advertisers suggest are the things we should be focused on.

If it weren’t for my disability, I wouldn’t have the privilege of staying at home with my future children. I wouldn’t know, deep down, that the most important work I will do in my life will be to raise kind, emotionally intelligent, community-minded, curious kids. I would be trapped in the Quest for More Stuff and More Power.

I wouldn’t know the joy of the double-nap day or the freedom that comes with being able to say, “The dishes and laundry will be there tomorrow.”  I wouldn’t be able to laugh about people who are genuinely fretting over fashion or other “first world problems.”

Does that mean that I’m grateful for my challenges?  OF COURSE NOT. That would be silly. Challenges suck! Nobody’s genuinely grateful for disability.  But I am genuinely grateful that there’s gold to mine from the rubble. I am genuinely grateful for growth that wouldn’t have otherwise occurred.

When I think about my “old” life and my current existence, it really feels like looking at two very different people… sort of like comparing apples and oranges. 🙂

But either way, the fruit is sweet. Life is good.

Everyday Earbug

And just because life is amusing in its serendipity, while I was writing this, I found out that one of my favorite bands (Marina and the Diamonds) has released a new single.  The name? “Froot.”  I couldn’t make this up if I wanted to. 🙂 Hope you enjoy.

Happy Friday!

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.

The Tao of Rae – for Free! And – Rachael Ray’s Garlic Roast Chicken with Rosemary and Lemon – Paleo!

Tao Square

Tao Square (Photo credit: Rosa Say)

The Tao of Rae

As many long-time readers know, I developed the Tao of Rae on this website.  I have finally compiled it and put it together in PDF format.  This morning I also published it for nook on Barnes & Noble‘s website and for Kindle on Amazon.com.

But here, it’s free.  Download The Tao of Rae in PDF format for free here and check it out.

I put a lot of work into it, and I hope that whoever downloads it enjoys it.

Speaking of things that I hope people enjoy — I’ve got another paleo friendly recipe from Food Network!

Rachael Ray’s Garlic Roast Chicken with Rosemary and Lemon

Ingredients

  • 2 1/2 pounds boneless, skinless chicken breasts, cut into large chunks
  • 6 cloves garlic, crushed
  • 3 tablespoons fresh rosemary leaves stripped from stems
  • 3 tablespoons extra-virgin olive oil, eyeball it
  • 1 lemon, zested and juiced
  • 1 tablespoon grill seasoning blend (recommended: Montreal Seasoning) or, coarse salt and black pepper
  • 1/2 cup dry white wine or chicken broth

Preparation

  1. Preheat oven to 450 degrees F.
  2. Arrange chicken in a baking dish, 9 by 13-inch.
  3. Add garlic, rosemary, extra-virgin olive oil, lemon zest and grill seasoning or salt and pepper to the dish.
  4. Toss and coat the chicken with all ingredients, then place in oven.
  5. Roast 20 minutes.
  6. Add wine and lemon juice to the dish and combine with pan juices.
  7. Return to oven and turn oven off. Let stand 5 minutes longer, then remove chicken from the oven.
  8. Place baking dish on trivet and serve, spooning pan juices over the chicken pieces.
  9. Enjoy! 🙂

To Everything Turn, Turn, Turn.

Kung Fu Panda

Kung Fu Panda (Photo credit: Wikipedia)

Finding Old Treasure

Well, for some reason, somebody thought it would be a good idea to read one of my better blog posts today.

It was the one about the lessons taught by Master Oogway in Kung Fu Panda (the original) and how they related to me one Rosh Hashanah when I was preparing to take the California Bar Exam.

They were powerful lessons: the importance of knowing that you cannot make a peach tree bear other fruit (no matter how badly you wanted to), and that it would not bear fruit before its time.

Treasuring Today

My, how life has changed since then…  Nowadays, I prepare meals for myself and my husband rather than preparing for tests.  I am not an attorney. I do not plan to take the Illinois Bar Exam or have any designs on trying to be a lawyer.

I wrote then about how music was coming back into my life “whether I wanted it to or not.”  And that’s just a funny idea – music having a spirit of its own or a will to infiltrate your existence. Music has always been a spiritual salve for me, showing up when I need it most to express the ineffable when I could not otherwise find a way to express that which my soul was aching or screaming to say — and it remains such to this day.

I have simplified my life as much as possible to decrease stress and to improve my health. I still have seizures nearly daily. My MS still causes pain and fatigue, but I keep going – trying to live the best life that I possibly can.  I meditate daily. I exercise. I focus on living life healthfully.  I take responsibility for the things I choose to do — like blogging instead of cleaning or eating lunch.  And I wonder how and why someone came along to read one of my more spiritual pieces of writing like that.

Mining For Gold

I will tell you: I don’t understand blogging, though I’ve been doing it a very long time.  I don’t understand what brings eyeballs to pages, or how to separate the wheat from the chaff.  I don’t know what makes someone a good blogger versus a bad one, other than that good bloggers keep writing, and that they open their hearts to their audience.  But I know that it matters that I put my real self into it, and that I’m genuine.  I think that matters a lot in life too.

Today’s Chopra Center meditation centering thought is, “I place my intention into the vast ocean of all possibilities and allow the universe to work through me.”

It is always my intention to bring more love and understanding into the world, and so I hope that I do that through this blog.

Don’t worry: there’s still a recipe coming today.

Namaste.

Chapter 81: Conspicuous Substance

True words are not pleasant,
thus beautiful words should be distrusted.

Good folks don’t debate;
debaters are bad!
(Hey, what about attorneys, Lao Tzu?
Don’t throw the baby out with the bathwater!)

Those who are aware don’t gamble;
those who gamble aren’t wise.

Saints don’t accumulate (stuff),
they believe that the more they help others
the more they help themselves.

Because he gives to others,
he will have much.

Heaven’s Way benefits without needing to do harm.
Saint’s Way acts without needing to struggle.