Tag Archives: Lyme

Episode XXX: Sitting in the Stillness

Episode XXX:

Sitting in the Stillness

 Today’s Words of Wisdom:

“Life with chronic illness is like a refrigerator. We take for granted the quiet hum until the power goes out and find that silence is louder than any sound.”

~ The Female Yoda

 The Foda’s Take: You like that quote? Huh? Huh? Aww, shucks! Thanks, guys!

 Peace. We all want it, we all look for ways to get it. It’s a billion dollar market, flooded with thousands of gurus claiming to have found the answer of how to obtain it, like a carton of milk you can purchase at the store. Yoga. Meditation. Mantras. Reflection. WWJD. Pick one, they all lead to the same place. But personally, I don’t think it’s that easy. (Finding peace, that is… not buying milk. Strong bones, kids!)

So today at around 4 o’clock, I stopped. Stopped writing, stopped creating, stopped cleansing my mental and physical space. Why? Because I was as fried as a popper from Long John Silver’s, that’s why. And when I stopped, I wondered why I had felt the need to continue on, why I hadn’t stopped when the glassy eyed lady first began to feel like her brain was full of melons instead of a medulla oblongata. Within five seconds of sitting still, I had my answer.

It’s because sometimes sitting still is the hardest thing to do. Why? Because there’s nowhere to hide.

You see, I’ve always been a person for whom purpose holds a huge role in my daily life. If I don’t feel like I have a clear purpose for my life, my day, my being somewhere, it’s very hard for me to feel at peace. But the irony is that this need for purpose, for knowing without a shadow of a doubt that my existence matters is the very thing that sometimes pushes me past my Lyme limitations (Lyme-i-tations??!!) until my brain’s as fried as a chinese noodle. (Can you tell I’m hungry as I write this? Sigh. Totally miss gluten.)

Anyway. I was there, sitting with brow furrowed, watching the beautiful sunshine drench the slowly budding trees outside my living room window, feeling… uneasy. The stillness was just too still. But I forced myself to sit in it. (Well, at least for five minutes. Then I got inspired to write this post. But, hey, I mean, five minutes totally counts.) Because I knew that sometimes we need to let go of the crutch, the escape, the easiness of throwing our minds into other things when our lives get tough. Don’t get me wrong, this is a very healthy thing to do- it helps us to stay positive and not wallow in despair. But it, like all things, has its limits before it tips the balance and becomes more stressful than beneficial. And I have always been an extremist. So guess what I tend to do? You are so SMART!! Gold star. Riiiiiippp! <Pat, pat> 

So today, I will sit, letting the uncomfortable stillness seep into my pores, reminding me of all the things I’ve lost, and all the things I’ve accomplished, and all the things I dream yet to do. It’s not always easy to let this in. Peace can be quite elusive. But in today’s technologically savvy society, I ask you- when was the last time you sat, just sat, with no TV, no phone, no computer, no nothing, and just… listened?

Maybe you’ll hear a truth you’ve been trying to avoid. Maybe you’ll feel happy getting to just let go for a minute. Maybe you’ll hear my stomach growling. But whatever it is, it’s valuable. Even when it’s hard to do. (My stomach growls very tunefully, just in case you were wondering… you know, why that would be valuable… to you…)

Try it. Be Still.

Shhhhh. No talking.

<Grumble, grumble>

Quiet, you!

Sigh. Just make sure you don’t try this on an empty stomach, folks.

Sincerely yours,

The Foda

<Grumble, grumble>

Episode XXVIII: Walloping Your Inner Wampa

Episode XXVIII

Walloping Your Inner Wampa

 Today’s Words of Wisdom:

“I must not fear. Fear is the mind-killer.”

-Frank Herbert

 The Foda’s Take: I remember reading these words for the first time in Frank Herbert’s “Dune” chronicles, and it’s as profound for me now as it was then.

 Fear. It’s what makes us human. A lot of us probably question why we’re hardwired to even have this emotion, since it has a tendency to run rampant and wreak havoc on our lives if given free reign. However, fear is historically there for a reason: to tell us to RUN! Run awayyyy!!!!! when a rancor is about to chew our heads off. Only in today’s world, there are no rancors. (That we know of. Wink.) And for most of us, it’s not very likely we’re going to have a face-to-face encounter with a bengal tiger any time soon. Which is why people get so mad at fear. Why do we need it? Or, the question I’ve been quandering: How do we tame it?

You see, for me, I view fear like a Wampa Snow Beast. (Click link for picture.) All huge and primal and bloody teethed from chowing down on an afternoon snack of Tauntaun-on-ice. Remember that part in “Empire Strikes Back” after Luke cuts off its arm? He’s all WAHRRRAAAAHHHHHRAHHHH!!!! flailing around and making all that racket?

To me, that’s what my inner fear looks like. A big white snow beast making all that fuss over a threat that’s halfway across Hoth by now. And I’m sad to say, that snow beast with the pea-sized intellect made a lot of my choices for me for a while. (Pause for moment of silence while I sheepishly duck my head into the neck hole of my sweater. 3… 2… 1… ) And we’re back!

So, yeah, it’s true, at first I was afraid, I was petrified…

……Kept thinkin’ I could never live without you by my side….oh, Wampa Snow Beast….. But then I spent so many nights thinking how you did me wrong and I grew STRONG…..

Whoa. What do you MEAN that sounds awfully familiar? PLAGIARISM? Psssh. Plagiarism, my Bantha. (Calm down Aretha Franklin fans, I’m totally kidding.)

But I digress. The point is, I lived a lot of my life being afraid. Afraid to tell people I was sick, afraid to put myself out there, afraid to go after the things I really wanted, even when my body was healthy enough to get them. But the amazing unexpected part of this whole chronic illness? Is that years of trial and isolation have forced me to face my inner snow beast and tell him to SHUT THE HOTH UP!

It’s the best outcome of this whole struggle. I’m not afraid anymore. (Except for spiders. And snakes. And bears. And pretty much anything creepy or that could legitimately kill me.) But so far as life goes, yeah. My actions are no longer dictated by fear. Hence, the publication of this blog a mere two months ago. (Which was a big deal, seeing as for the three previous years, I couldn’t even say the name of my illness out loud.)

And you wanna know something incredible? Since I stopped letting fear hold me back from putting myself out there, all of a sudden, these… THINGS…. are happening.

All of a sudden, when I’m having the most horrible of days, praying for some little nugget of hope or love to help boost me up, things are happening. A get well card from a former student showing up in the mail. A bouquet of flowers from co-workers who haven’t seen me since I got too sick to work. An e-mail from an old friend sharing a personal story with me containing her silent struggle. Little things. But as we’ve discussed in The Small Things miniseries, the small things sometimes mean the most.

I always wondered why, for all those years when I cried out for help to the universe, I wasn’t getting anything in return. But now I believe that the reason why is because my rampant Wampa went all willy-nilly on my brain, blocking me from putting myself out there “AS IS.” (No substitutions, exchanges, or refunds!)

So today, I want to share with all of you who are battling your own Wampa Snow Beast: once you realize the voice in your head that’s holding you back is a primitive fictional character unable to even use the gift of legible language? It makes it a LOT easier to shut it up and put yourself and your dreams out into the world.

Because just like a boomerang, you have to throw it out there to ever get it back. 

And if you’re still all, I don’t know, Foda, this sounds kinda iffy… Just picture your fear like a lumbering white nincompoop getting hit in the head with a boomerang. And if you do that right, you really should be laughing right now, which is a WHOLE other type of totally fear-canceling emotion…

(Ha! Take that, Freud! Or some other psychologist who didn’t maintain the problems of mankind always stem from a woman’s desire to be anatomically male… PEJORATIVE PIG.) 

Now Go Wallop that Wampa!

WAHRRRAAAAHHHHHRAHHHH!!!!

The Foda

Episode XXVII: The Division of Self

Episode XXVII

The Division of Self

 Today’s Words of Wisdom:

“Have patience with everything that remains unsolved in your heart. Try to love the questions themselves, like locked rooms and like books written in a foreign language. Do not now look for the answers. They cannot now be given to you because you could not live them. It is a question of experiencing everything. At present you need to live the question.”

~Rainer Maria Rilke, Letters to a Young Poet

 The Foda’s Take: Can I really expand on this? As my father, Dobiwan would say: BEAUTIOUS.

 Hey there, neighbor! (Admit it- how many of you are now humming the Mr. Roger’s themesong? Would you be mine… would you be mine?!) It’s so good to see you again! So, how’ve you been? Mmm-hmmm? I know, the weather’s been, just, like CRAZY lately, all that flux and such. But Spring is FINALLY here! (At least, so the calendar says.) And this actually brings me to my topic for the day: The Division of Self. AKA what happens when something appears to be one way on the outside and totally different on the inside. Like, say, having freezing temperatures in late March. It’s SUPPOSED to be spring… but if you didn’t have a calendar, would you really know that? (Granted, it is supposed to be getting warmer, but not consistently. Or so Mandalf the amateur meteorologist tells me.)

Sidebar- is it wrong that I expect all men to be able to predict the weather just by looking at the same sky I’m seeing? Yeah, that’s what I thought, too! Totally reasonable. 

Anyway, this whole seeming one way on the outside when the reality is actually quite different is one of the most difficult calling cards of living with a chronic illness. You LOOK fine, and you’ve been dealing with it for so long now you’re likely an AMAZING actor, so you truly do SEEM fine. So what do people see when they look at you? One Fine Fellow Earthling! But what do you see when you look in the mirror?

Probably someone totally different.

I once took a class on Expressive Arts in Leadership arenas, and in that class, we had to do a LOT of self expression through any kind of creative media. I wound up drawing a picture of a healthy, smiling girl looking in the mirror. Yet staring back at her from the glass was a drooping, wrinkled old woman. Stark, I know, but that’s how I felt inside. And this is what people with invisible illnesses face EVERY DAY. Very Dr. Jekyll and Mr. Hyde of us, I know.

So what can you do? Surprisingly, if you’re a caretaker or a friend, sometimes the WORST thing you can do is offer advice. It often comes off condescending instead of caring. (Which, of course, is your real intention. You big doll, you!) Why? Because members of the Invisibility Cloak Club have already thought of whatever you’re advising, I promise you! What we really want? Is someone to validate the EMOTIONAL side of our condition. Now isn’t that easier? I mean, you may not have our illness, but you DO have emotions, yes? You TOTALLY have experience with fear, frustration, doubt, isolation, etc, right?

Well, guess what. That’s how we heal the division of self: Is validating BOTH parts of us. The body that houses us, and the fighting emotional soul inside. Because both are a part of you. Don’t make the same mistake I made for the first three years by thinking of my body as a traitorous womp rat, with my mind/spirit/soul being the “real” me. This only made me hate MYSELF… because I live, after all, in both places. (I know, I know, seems obvious, but I humbly admit it was a part of my subconscious for a long time.)

So today, dear reader, whether you’re sick or strong, happy or sad, Princess Leia or just plain Laid up, I hope you get that validation we all need and know that you are making the right choices. Every time.

Well.

Unless they’re wrong.

But probably, they’re totally right.

(You do get that I’m giving inconclusive validation on purpose, right? Okay, good. Kiss, kiss! Oh, no, not you, sir… you get a handshake. ANIMAL.)

Much Love,

(But only the appropriate amount)

The Foda

Episode XXII: Fight or Flight

Episode XXII

Fight or Flight

 Today’s Words of Wisdom:

 “You never know how strong you are until being strong is the only choice you have.”

-Unknown

 The Foda’s Take: TRUTH.

 Hi there, friends! How’ve you been? I’ve been rummaging along myself, thanks.

Okay. I lied. I’ve actually been in a bit of a rut. A really ridiculously reprehensible rut. (Tee-hee. I totally have a thing for alliterations.) But before you cluck your tongue and start feeling all sorry for me, here’s some things you really ought to know.

First of all, to quote Han Solo: “I trusted them to fix it! It’s not my fault!” Granted, here he’s talking about a broken hyperdrive, and I’m talking about my health…. but same general idea, no? Yeah, I’ve done it all. Changed my diet, seen the expert, paid the crazy amount of money for the herbs and tinctures and pills, had the PICC, followed all the advice down to the letter. I even drank activated clay and charcoal for God’s sake! (So. Gross. Or to quote Princess Leia: “I’d rather kiss a Wookie.”) And yet.. I’m still in a rut. Hence: “It’s not my fault!”

So I’ve been doing a little.. okay, okay, a lot of moping the past few days. After all, it’s very frustrating to devote every waking moment of my life to getting well and not see more results. I’m sure you can understand, sweet doll-face reader that you are. (You too, boys. Unless being called a doll-face offends your sensibilities. In that case, please accept stone-cold fox as an adequate substitution.)

Anyway, I’ve decided there’s only one way to view this rut that will make it even remotely palatable to my SciFi saturated brain. Picture this:

I have just come out of hyperspace. My hyperdrive is broken, and I can’t fix it. And to add insult to serious injury, I am now firmly stuck in the Death Star’s tractor beam. (Just go with me here, this is going to be a massive mouthful of a metaphor. <— Oops, I did it again!) Sigh. Totally singing Britney Spears now. Focus, Foda, focus!

Okay. Now it is very clear to me that I have two choices here. I am stuck in a tractor beam that is too strong, and my ship is too small. My first option is to hit a whole bunch of lever-y thing-ys and try and bust my way free, likely frying my ship in the process and getting sucked in anyway. Or, I can let the tractor beam take me in, steal whatever armor I can find, and fight my way out from the inside. Scientists call this decision Fight or Flight.

Now, brilliant readers that you are, you know I’m not really talking about a ship and a tractor beam and all that. But the metaphor stands. I’m in a rut- and until I’m well, it’s likely going to always feel like the Death Star is sucking me in while I struggle to get out. So instead of wearing myself out and blowing my precious little energy trying to get away… I think I’ll stay and fight. Even if that means I spend some time laying low, all sneaky-like, elbow-crawling my way through the belly of the Death Star….. (I’m taking this analogy a bit too far, aren’t I?)

The point is: when you choose to fight over flight, it may not always look like what you expect it to. Allowing the tractor beam to suck you in may seem like giving up. But sometimes, you have to know which battles are better to lose so you have enough fight in you left to be able to win the war.

I’m not going to win every battle. Lately I’ve been losing the battle with wrangling those good ‘ol happy feelings to where I’d like them to be. But that’s okay.. because that’s real life.  And this week, I’m just plain old tired of trying to get out of my rut. So I’m trying something super crazy.

I AM EMBRACING MY RUT.

I’m done spending so much mental and emotional energy trying to deny where I am right now. I’m done dancing the foxtrot with the tractor beam. I’m letting it take me in. But what it doesn’t know.. what it can’t know… is that once I’m in, I will lay low. I will get stronger. And one day, when the time is right, I will SMASH my way out of that Death Star.

Or at least close the door behind me REALLY tight.

Yours Truly,

The Foda

P.S. Wasn’t this just the most sensationally sinful soliloquy of cinematic similes you’ve ever seen? Ha! Nailed it.

Episode XXI: Questions of Grandeur

Episode XXI

Questions of Grandeur 

 Today’s Words of Wisdom:

 “If you’re not enough without it, you’ll never be enough with it.”

-Cool Runnings

 The Foda’s take: This was my senior yearbook quote. I love it because it reminds me that humankind often makes the mistake of looking for things outside of ourselves to help make us happy. In my case, that means collecting shoes and all things Star Wars. In Mandalf’s case, it’s bicycles and yogurt. The point is, we all do it, hoping our acquisitions will help us find our bliss, especially when the going gets rough. But that bliss will always be temporary if we don’t make peace with what’s inside first.

 Welcome back, friends of Foda! I hope you enjoyed the little musical parody last week. The inspiration just hit me, and I had to go with it. (Plus, Mandalf runs a podcast, so it was really fun to try out his new microphone!) Anyway, I watched Cool Runnings the other day in celebration of the Olympic spirit, and that quote jumped out at me again, just as strongly as it did when I was a teenager. This caused me to have several moments of deep reflection.

What is the thing I’m without that I want the most?

Do I want to be able to walk out my front door again without worrying how many minutes I’ll make it? Yes. Do I want to know that there’s a turnaround point soon in my future? Umm… yuh-huh! Do I want to have peace, living in the moment until then? Seriously. You have to ask?

A part of me- the tired part who’s been fighting so long- wants to scoff at this quote and say that it doesn’t apply to people who are looking to obtain their general HEALTH back. I mean, that should be, like, our birthright. But the other part- the part who’s learning how to find hope and meaning in all of this- tells me that it DOES apply to me.

It’s really easy to sit back and try and find distractions that will make you feel, even if just for a moment, like you’re in the famous Family Guy skit: “Ooh, piece of candy!” And the more “candy” you find, the more you want to make that fleeting feeling of happiness last. But that’s just the point. IT WON’T. (Just watch what happens in the link above!) Why won’t it work? Because it’s a band-aid over a Sarlacc-sized hole.

And okay, I can hear you cynics out there. Alright, hot shot, what do I do to find my “inner peace”, huh? (Is it weird I just pictured Harrison Ford saying that from the cockpit of the Millenium Falcon?)

Well, here’s how I see it. Our “coming-of-age” story can happen at any time in our lives. Who says it’s just for doe eyed teens learning to make their way in the world? That’s like saying life isn’t hard after 25. WRONG! So if my “piece of candy” is my health, then what I really want, as I do everything possible to get it back, is…

To relax. To have peace. To BELIEVE that everything’s going to work out okay. And, what I’m learning is most important: to KNOW that I can contribute grace and beauty to the world even without the use of my legs. These are the things I can take with me no matter what happens.

So while this does NOT mean I’m going to stop fighting for my “normal” life back, I guess I’m realizing it won’t mean as much when I get it if I don’t learn how to reckon with my inner Foda first.

If you’re reading this, you may be going through a rough time, like me. Or maybe you went through something in the past, and read this blog because you can relate. Whatever your reason, I hope you take a minute and really think about what your deepest desire is. I thought mine was to have a healthy body- and that’s true- but the real underlying desire is to have peace, and freedom from worry. And pursing that is a choice I’m going to have to make over, and over, and over again.

But hey- Luke didn’t use the Force right on his first time either… (Especially if you believe this hilarious video spoof.)

Namaste,

The Foda

Pssst…. over here! I promised in my bio: The Birth of The Foda that I would never talk medical stuff with you, but many people have asked what it’s like to have Lyme Disease. Here is a WONDERFUL, informative, non-scary article written by a woman named Shannon Donegan called “Ten Things To Know When Someone In Your Life Has Lyme.” Please read and share. I know many Lymies who have agreed that this is EXACTLY what it’s like. Thanks to Shannon for letting me post it!