Under My Skin

At 3:00am (a short while ago) I was inspired to write the following poem. For both those of you who are new readers if my blog and those of you who are long time readers, know that while this blog is typically an eating disorder pro-recovery blog, it has morphed into a self-exploration/contemplation blog and this poem is actually something I have written about my newest struggle: the diagnosis of late stage Chronic Lyme Disease.  The poem is entitled 'Under My Skin'.  Read if you feel so inclined.

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Under my skin

There are lots of things that get under my skin.

When people curse the name of God or the country they're living in--

When children are hurt and have no choice but to walk around on eggshells and pins--

When justice is served from an outside party instead of within--

Politicians whose rabble seems to have no end.

And talk show doctors who sell out to fit in.

And professionals testing extensively and expensively despite not knowing where to begin.

And celebrities who jump on the bandwagon for fame--for us, defeat, for them, a win.

Assertions that we'll never live fully again.

Ignoring the reality of our minds' din.

The clinging and clanging of pencils and pens,

And paper and lamplights and city trash bins.

All enough to make our minds whirl and heads spin.

And they wonder why such commonplace things get under my skin.

Perhaps it's worthwhile to consider again--

That all of these things get under my skin

because that's where it is--under my skin.

Sure, I may look fine but you see the outside, not in.

The war rages deep, my nerve system weeps, under my skin.

The aching and pain and confusion and rain all live together under my skin.

Because that's where it is--under my skin.

It attacks and desires for me to give in,

But I refuse to obey what's under my skin.

Yes, there are days I only stay in.

And yes, there are times I feel I can't win.

But my God is stronger--the Beginning and End.

So how can this monster under my skin

Make me doubt enough to give up or give in?

Since my God is the Beginning and the End,

I have hope that He'll carry me through, yet again.

He's proved it immeasurably through thick and thin--

How naive would I be to think He won't still win?

My struggles may seem insurmountable and I don't know when,

But I WILL get back to my full life again.

I will one day again skate for hours on end.

I will walk my dog several times 'round the bend.

I will drive my car around town, with windows down, and enjoy the wind.

I don't have a mind that is satisfied with 'mend'--

I operate on principles of 'healing completely'--with God on my team, worldly answers I'll transcend.

Because I do not accept this diminished functionality as my story's end.

God's writing my book as I travel the bends,

And the twists and the turns and the bumps and amends.

My story's not over--there's still more to go--more than I can even begin to comprehend.

But rest assured, I am a fighter, my friends.

And fight on I will, till God writes 'The End'

God is awesome (and a little bit ridiculous)

I just had to share a post I composed last night after a particularly good day yesterday.  Just copy/pasting the post here because I don't currently have the energy to type it again and fix all the timestamps, etc., that indicate last nigh.  So from 11:16pm on Tuesday, May 28, 2012 we have the following post:

May 28, 2013 11:16 PM

Okay, folks. It's like this. We don't have a diagnosis from Cleveland yet, we're still waiting on more tests and follow-ups and results and we are also looking into getting other opinions from various professionals just to gather all the perspective and idea we possibly can. HOWEVER, even though we are delving yet further into the non-diagnosis chronicles I have to share something awesome that happened this morning.

Memorial Day weekend in WV was mostly good. The weekend and events themselves were all good, I only specify "mostly" because there were periods when I didn't necessarily feel well but was able to take a step back, rest, and still manage to enjoy the days we spent at the farm (which went by way too quickly!). So while the weekend was not without bad moments, health-wise, the good times we had outweighed the not-so-good health moments so I'm counting the weekend as a W. :-)

But today. Something truly awesome happened this morning. And I can't really describe it adequately on here, typing from my phone, at 10:55pm, but just know this--it was truly awesome.

My entire life I have been a fan of singing in the shower. There have definitely been periods where the songs I've chosen for any particular shower time jam session held no real significance or importance. There have also been more times than I want to admit (or rather, more times than I could actually sit down and count) that I've given my very best (and very loud) renditions of "Part of Your World" (from The Little Mermaid) as well as POYW reprises 1&2. However the past few years, I've almost consistently only sung hymns, contemporary Christian songs, etc., and I have to think this is because those songs are impossible for me to sing without feeling uplifted.

Which I only mention to illustrate how much of a sense of defeat I have felt on all but 3 or 4 days since January when I've taken a deep breath, prepared to sing [hymn/praise song X], only to realize I either an too lightheaded or just don't have enough strength to even form the words with my mouth, much less say them aloud, much less sing them emphatically, much less sing them emphatically AND in tune, and I think this goes without saying but much, much less when you try to combine any of the above actions with remembering lyrics.

So this morning when pandora came on and Nichole Nordeman stated singing an old favorite of mine from her Woven & Spun CD, and when I was able to sing along with that, with a second song (I Stand Amazed In The Presence [of Jesus the Nazarene]), and end singing How Deep The Father's Love For Us in the most moving (and tearful/prayerful way possible), I was, indeed, amazed in the presence of The Lord. And yes, that's a huge understatement!

And just to add to his awesomeness, the text I saw on my phone was from Brenda Ross, the daily bible verse text that brightens each morning for me, and I kid you not today's verse was Psalm 59:16. And it reads:

"But I will sing of your strength, in the morning I will sing of Your love; for You are my fortress, my refuge in times of trouble."

I literally laughed and told God that I heard Him loud and clear and that it's ridiculous that something so seemingly simple was such a profoundly positive sign to me, but also that I know He kind of operates in the ridiculous on the regular. (Think: Job, Noah, Abraham, and well, Jesus)

The tiers of can't

"I'm watchin' sis go pitterpat.  Said 'I can do that'"

Wait, can I do that?

I really hate the word can't.  And YES, throughout my life I have said that word more times than I can count or would be willing to admit even if they were countable.  I think that's why I've come to hate it.

I've ALWAYS had a yearning to prove others wrong when they say I can't do something.  And I prove them wrong by doing aforementioned something.  But I have a chronic history of accepting "can't" when I say it to myself.  And I'm telling you this--IT STOPS NOW.

I had a revelation last night right before going to bed.  I'm not talking about an "this is going to create world peace in a day and solve worldwide epidemics and answer every domestic and foreign issue" revelation.  Nor am I talking about a book of Revelation (or for that matter, book of Daniel) type revelation.  But I AM talking about a revelation that screams to me, "Type me in your phone and set a reminder to blog about this tomorrow or else you will forget!!"

Below, I'll discuss what I'm coining "The Tiers of Can't"

"I can't" versus "I can't YET" versus "I can't UNTIL" versus "I CAN"

So tier 1: "I can't"

• This one is pretty self-explanatory.  It also sets you up for immediate failure.  Let's call this "pre-trying failure."  Meaning that before you even try to attempt [action X], you have decided that you are not going to succeed, no sir, not gonna happen, no way.  The ultimate outcome for this defeatist thinking is, in my experience, you go through this mental conversation so thoroughly that you either a.) convince yourself to not even try because "what's the point?" or b.) you say you're going to try, you may even think you try, but really you don't fully try because since you think you can't do it you almost make yourself fail.

Tier 2: "I can't YET"

• While "can't" has become one of my most hated words, "yet" has become one of my most favorite.  Particularly in my current medical mystery situation and uncertainty about the future.  When you tack on the word "yet" to the phrase "I can't" and form "I can't yet," you are automatically giving yourself 100% more hope and optimism for [action X] than you had in Tier 1.  That three-letter word gives you the window of opportunity to claim, "No, I can't do this YET....but I am not ruling out the possibility of success in this area in the future."  And that glimmer of hope that says "I'm not quite there and I'm not exactly sure how to get there but I know the possibility is there" can make all the difference in the way you approach any and every situation in your life.

Tier 3: "I can't UNTIL"

• Does this one scare you a little bit? Well, it should.  And it shouldn't.  And yes, those are two apparent diametrically opposed sentence fragments but the are both true within this third tier.  The reason this should scare you a little is that this is the tier where you've gone through the "I can't"and the "I can't yet" and have accepted that the possibility for succeeding at [action X] exists.  Those essentially are the easy steps.  What makes this one a little on the scary/harder side is that word "until."    When you say "until," you are marking a specific time in the future when [action X] can be performed successfully.  The scary part of it is that this means you have to actively work on discovering your until.  Discovering your until makes the situation suddenly take on a new level of reality, which as noted several times above is scary simply because you are getting closer to [action X] and you even have a plan of how you can achieve it, and even then you probably still have a little doubt in your mind.  But once you find your until, you also have a reason for great excitement! Look at you!  You know exactly what you need to do to get closer to [action X] and make it happen.  You have a game plan, and even if you're not quite ready to attack it you suddenly find you have more power than you have ever previously felt and you see that [action X] is in sight!

Tier 4:  "I CAN"

• Okay.  I just want you to take a moment to read the title of this tier aloud.  If you didn't do it when I just said to, then do it now.  Seriously, just say to yourself (but out loud), "I can."  Did you feel that power?  When you said it aloud did you have a certain [X] of your own in mind?  Did saying "I can" feel true?  Did it feel like a lie?  Did it give you chills/make you angry/scare you/make you doubt why you've read this far?  If the answer to any of those questions is "yes" then I'm glad.  This post has done what I intended.  The thing is, once you have your until established in tier three, if you're anything like me, it's almost impossible to see that something is within reach yet not jump at the opportunity eager to succeed.  Some of you may find that your until is not quite as motivating, but that's okay, too.  Because once you have your until, I promise you that there will be a time that you find you are saying "I can!" (other than the time I just asked you to do so).  And once you realize that you have eliminated the 't from the word and are now living with your new roommate, "can" instead of your old roommate you never paid his/her rent, "can't" you will find it's easier to say, "I not only can, but I will"

And then, once you say that W word....once you add your will to the equation, you will find yourself one day, possibly doing something like driving to school or working at your desk or watching a TV show or reading a book and then the coolest thought in the world will occur to you.

I did.

Violets

Every time I step outside and see violets I cry.
My tears aren't always visible, but they're there.
They're there because I remember too many spring and summer days to count;
days where we would spend 4-year-old hours on hours
which I'm sure were only minutes to an adult,
but to a 4-year-old they were the world,
picking violets on the hill beside that house.

And that leads me to think about orange tic-tacs and Muppet Babies puzzles and how much I would give to go back and live just one day and hear you talk about that letter you wrote to the president and how maybe he might take the time to respond to you because you had written down the easy solution to whichever national problem was on the forefront.

Peace amidst chaos

I haven't kept a detailed chronicle of the medical mystery I've been going through for over three months, but as we approach our next trip to the Cleveland Clinic (the trip is next week! I never thought it would get here because it's been scheduled since February but it is now within my line of sight!) God has been working on me in ways that I have never, up until recently, felt so powerfully.

I've told everyone I've talked to the past few weeks that God has blessed me with that peace that passes understanding in regards to the still-uncertain medical situation.  And the reason I use that particular phrase (peace that passes understanding) is because it literally transcends not only explanation but also understanding.  I realize that anyone from the outside looking in would have justifiable cause to say, "How on earth can you say you are at peace right now? You've gone through [this] and [this] and [this] and still have no definitive answers! Why are you not completely stressing out?!"

And to tell you the truth, even in the past few weeks (the weeks in which I've felt this transcendent peace), there HAVE been moments I've wanted to just scream or cry or throw something against the wall or smash something to little bits....you get the picture.  However, I'm continually being made aware that there is another blessing in the blessing of the peace itself.

I spend a lot of time home alone during the day because Rog is at work and I can't drive right now, and even if I could drive there's not much I can do, if anything, without getting ridiculously flummoxed.  So I have had an abundance of time to just sit here at home "alone" with God.  So what have I spent a lot of time doing? PRAYING.

I pray the occasional prayer for myself, but almost all of my prayers are being said for people who have either come to me with specific requests, people that God "randomly" lays on my heart during a prayer session, people that I've heard have needs even if they haven't specifically asked for payer, and people I know (as well as people I don't know) who are lost and need prayer for their salvation.

If you've never gotten down on your face and had a full-blown prayer and praise session where it's just you and God, I urge you to try it, if physically possible.  I have felt the power of Jesus working through me so much and I will tell you this--that feeling is unparalleled.  I find myself just wanting to praise Him more and more every day, and I find myself yearning for those moments when I am able to lift not only my needs, but the needs of countless others up to God.

Because God (the G-man, as I like to call Him sometimes) is truly capable of giving us that peace I mentioned that transcends any rationale that forms in our human minds.  And brothers and sisters, I'm pretty confident that if you feel that peace at any point, God is not only blessing you with it because you need it (even though there are times we ALL need it!), but He's giving you that blessing as an opportunity to free your mind from the fixation on your trials and focus your mind on lifting others up who are also going through rough times.

God bless,

Becca

Slave (A poem I apparently wrote but had forgotten and just now discovered)

So the title explains this post fairly well.  This poem is something that I wrote, according to the MSWord timestamp, on October 9, 2012.  I don't remember what was going on in my life on October 9, 2012*, but this apparently was something that just hit my mind with that quiet voice that says, "Write me....write me....write me...." so I wrote it.

Slave 

They tell me I cannot begin to fathom what it would be like

To be a slave, to be controlled by someone else,

Do this, do that, do my bidding.

What they don’t realize is that even though the color of myskin

And the era in which I live dictates I am not a slave toanother man

I am still a slave, a slave in my own mind.

I am a slave to the thoughts that plague me,

Constant streams of lies, no, rivers of lies, longer thanthe Nile.

“You can eat this, but don’t even think about that.”

“You can watch this movie, but make sure you compensatedowntime by exercising.”

Unless you’ve been there, you have no idea.

My shackles are not visible, yet they are just as heavy asmetal chains

Dragging me down with feelings of guilt and fear and shame,

Never ceasing to burden my mind with thoughts of things Idid wrong,

Things I could’ve done better, and how skipping a meal willhelp me achieve

Perfection.

In every area of life.

*Author's edit*
During a therapy session several hours after posting the above poem, as I was explaining the poem, I realized what exactly was going on in my life on October 9, 2012.  That was 5 days after my granddad died.  They had been the 5 days of my life, up to that point, where I had felt the most heartwrenchingly sad.  That entire time is a blur, and I had blocked most of the negative parts due to necessity of living my life as well as a result of other severe heartache we have dealt with as a family since then (which was, for me personally, on the same level of heartwrenching sadness

The Sadness Monster

[I wrote this poem on March 2 of this year--exactly 2 weeks after my Aunt Neni went home to Jesus.  Know that while I reference "a couple of weeks" in the beginning of the poem, everything in it still holds true, now almost 2 months after we lost her.]

The Sadness-Monster

I lost a loved one today.
Or maybe it was a couple of weeks ago
but it feels like today.
I can still picture myself with her,
sitting, talking, laughing...
Laughing was the best of all.
I still go to my phone to call--
and then am reminded no one will answer.
The number I've known since I was pre-memory--gone.
I'm sure someday I may dial that number and find a stranger on the line.
A stranger who has no idea how much meaning in engrained in those seven digits,
and in my memory.
A stranger who will not know how fun that number sequence is for a little kid to dial,
and how much that fun escalated when the line was answered--
and how sad it got when the line fave its NAAA NAAA NAAA NAAA--
and how it was a game for a kid to see how many times she could make the call before the line was free and answered with the "hello" that transcended all negative emotions.
"Hey Neni!!" was always the child's greeting; always my greeting; always ours.

Since I lost a loved one, I oft still sit on the recliner int he middle of a UK game,
screaming in either ecstasy or anger, and mentally note to call that number and talk about the play and how good the Cats are--wait--
You can't call, Becca, she's gone.
That is when the sadness comes.

Or in the middle of watching a program-that-is-not-Dr.- Oz on TV
and for whatever reason have the urge to dial those digits that don't even merit concentration anymore.
I actually never saved them into my phone--because who needs it saved when you've had a lifetime of dialing-fun?
Again, the sadness comes.
Again, I remind myself it can't happen.
Becca, she's gone.  She's not there waiting for you to call.

SHUT UP!
I say to my inner critic--the tormentor who is hell-bent on forcing me to fully acknowledge, and deal with, the reality.
A reality better off left alone, I think.
A reality I refuse to feel.
A non-reality.

The sadness-monster comes and goes and comes.
She is good at leaving me for a day-long vacation which sometimes, if I'm lucky, extends to a weekend.
But when she makes her rounds and knocks on my sternum, the door to my heart, if I even peek through the cracks, she intrudes and invades,
saying only, cry, regrets, ache, longing, gone.
Many times she ends with one word--you.

It's the "you" that get me most.
I masticate the you until its full meaning is ready for digestion.
But when I swallow the you my mouth is cotton and sandpaper and I choke and spit out the you,
only now the you has evolved into an "I" and it is in my lap and I understand, now I understand. I.

I purposely didn't answer that last call because I was not up to talking.
I justified it by naming my "not up to it", "sick", and let the call go through to voicemail.
The voicemail.
The last voicemail.
The last voicemail to exist on my phone with the
"It's just me" greeting--
a greeting that tells me more than using a name.
A greeting I've known uniquely for her for 24 years.
A greeting I now only have saved in my phone archives along with guilt for not calling back--
and in there also is the guilt and failure I have saved and pent up
when I brushed off her question in the hospital--
when I went to the mall or the cafe or just drove around for no reason at all,
instead of visiting her.

Visiting her on the street two blocks away from OUR cemetery with pretty fall leaves and bike rides,
and two blocks away from the house where I grew up with her in the mornings and my mom and dad in the afternoons and evenings.
Those visits I had, there will be no more.
The visits I didn't make, there is no way to rewind time and ensure I make them.
All I have left are regrets for the time I chose other things above the visits and memories of the visits I did make.
Memories are nicer.
They don't make your heart bleed as much.

I lost a loved one today.
I lost a loved one a couple of weeks ago and I still lost her today.
I lose her all over again, sometimes several times a day,
but at least once.

I lost a loved one today.
A loved one with whom I cannot count the number of times we stood in her kitchen,
always the kitchen,
and I voiced my fear, "I just get sad and worried that I'll be in heaven when I die and I want you to be there but I have to know that you're saved because I can't be there without you."
And she tried to assure me, "Oh honey, don't you worry about me, I'll be in heaven,"
and I always wondered--even when I was as young as seven or eight--how she knew that
when the topic of salvation was typically changed quickly to a conversation about the dangers of Mountain Dew or how she was going to write a letter to the President that he himself would probably read or how Dr. Oz never talks about the heart.

Assurance never really came until the days surrounding the un-returned call, before and after.
Conversations were had between mom and great-aunt-grandmother
during which the latter mentioned God and His healing power more than ever before.
A devotional with a green ribbon bookmark on February eighth--
the day of the un-returned call--
An acknowledgement of a special Christmas gift--a personal bible--
"I've never had one like my daddy's since I was a little girl."

These are the things I choose to remember right now because God sends signs to those who need comfort when they need it the most.

She always worried about me--
tearful conversations on my way out of her house,
a beyond-sad expression in her eyes as she pleaded with me to "eat more, you have to, I can't stand you going away again."
I always felt like a cold, emotionless person when I'd assure her, "I will, I promise,"
even though sometimes I knew I didn't intend to.
Strangely enough, one of the most comforting things since I lost a loved one
is knowing, finally, that even though I lost her, God gained her--
and more than that, she no longer has to worry about me--
no longer has to worry about anything at all.

And then, for a moment, the sadness-monster leaves me.

And I smile.