I wrote this poem in July and posted it on my personal blog I’ve had for several years, but I just realized I hadn’t posted it here yet so I wanted to share. In case you readers haven’t realized, I love poetry. I love reading it, writing it, and finding new ways to string together words and sentences and turn them into a poem.

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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 that 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 an award–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–
All of these things get under my skin
Because that’s where it is–under my skin.
Sure, outwardly I may look fine but you see the outside, not in.
The war rages deep, 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 I let 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 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 comprehend.

But rest assured, I am a fighter, my friends.
And fight on I will, till God writes ‘The End’
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And we all will win this war, guys. I firmly believe that.

God bless,

<3
Becca

BLESSINGS!

They’re the first things that come to mind when you struggle with a debilitating chronic illness, right? Oh, they’re not? Well, even more reason to write (and read) about them because sisters (and brothers!) blessings abound even when you feel tee-totally unblessed, and they often come in packages we aren’t expecting. Kind of like when you wait for weeks for a package to come via UPS and it never shows up….and actually it was delivered to your neighbor 3 houses down, who has been working 3 jobs and running a five-star restaurant for dogs out of his basement in his spare time, which you haven’t visited because your dog doesn’t play well with others….so you spend time resenting the owners with cordial dogs….and one day, as you stare out your front window and brood over this bleak first-world reality, you look down and on your porch you see it–a package! And not just a package, but the package you’ve been waiting for….so you open the door, pick it up, and see a handwritten note from dog-restaurant-chef-neighbor that cheerfully says, “Sorry, neighbor, I must’ve overlooked this misdelivery–hope you still need it! By the way, I left a bag of house specialties for your pup in the mailbox–I know you mentioned she has allergies so these should be safe for her!” So you open your mailbox and find 6 bags of allergy-friendly gourmet dog food that will taste infinitely better than the overpriced store food you have to feed her every morning.

How could you help but say, “WOW! What a blessing!”?

But I digress. Which I’ve learned is a favorite pastime of mine. But let’s not do it again. Yet. To the point!

My birthday is on Friday. I’ll be 25. If I do say so myself, my birthdate of 11/22/88 is aesthetically pleasing to see written. Just saying. But the thing is, this past weekend was actually quite an hellacious one for me. It you’re in the camp that thinks the full moon doesn’t screw with illness in every possible way, I’m flat-out telling you you’re wrong. The reality for me is that, without fail, the 4 or 5 days surrounding every full moon put every single symptom I feel to a degree daily on absolute hyperdrive, and consequently I am in the bed, 100% out of commission, for the duration. Yes, Lyme & Co keeps me bedridden a large portion of the time anyway, but during these full moon periods I’m fairly sure my bed just accepts its destiny to have a Becca-sized imprint on my side of the bed.

So naturally, after having such an awful group of days, I was even less enthused about my upcoming birthday. Plus, 25 is an ugly number because it’s odd. In fact, I’ve told my family I don’t want a party–Rog and I are going to attempt to see Catching Fire with two of our good friends Friday night, but other than that I didn’t want a party/celebration/gathering where I’d probably feel compelled to put on my happy/normal mask for a couple hours and then spend the ensuing days in bed. And like HECK do I plan on being bedridden and unconscious for The Day Of The Doctor on Saturday. This sounds melodramatic, but this is life with Lyme & Co, folks. And I’m not hiding it.

I did, however, find a delicious-looking gluten-free, dairy-free, egg-free, sugar-free, non-GMO pumpkin pie recipe and requested my mom make it for me since the Lyme diet makes it impossible to buy/eat a classic pumpkin pie like I do every year on my birthday. So mom decided to make it for Sunday and just bring it over then since we were attempting the movie Friday and Who Day was Saturday. Perfect plan.

I know I’ve written quite a bit already, but if you stick with me you’ll learn the intent behind the digression regarding blessings above.

I recently put on Facebook that the worst part of this illness wasn’t the pain, fatigue, uncertainty, neurological/cognitive dysfunction, bouts of extreme unpredictable and unprecedented rage, or even not being able to skate, but the worst part is that I’ve had to miss several Sundays at church and SS and I’ve missed over half of our fall life group meetings at church on Wednesday nights. And I mean that with my entire being–when I’m not able to get to God’s house and fellowship with my brothers and sisters in Christ, my life has a void unable to be filled in any other way. So I was determined to make it to our final life group meeting tonight (well, Wednesday).

Throughout the day, I felt as if my attendance became less and less a possibility. I awoke feeling like the soles of my feet were simultaneously on fire and being stabbed by ten knives. I couldn’t get up to even brush my teeth because even with soft house shoes the pain made standing and walking impossible. So Rog, being the more wonderful than words husband that he is, drove home quickly on his lunch break (missing the Thanksgiving dinner lunch!) to set my foot bath up on the bed for me to soak my feet in Epsom salt water hopefully to get some relief. As soon as it was plugged in and going, he jetted back to work, (just in time to get a plate of the thanksgiving dinner lunch!) before tackling the rest of the day.

Once Rog got home from work, I finally was brave enough to tackle a shower, even though my feet were still aching a little (but the foot soak did help some). And of course, the warm water and the fact that even in a shower chair the blood rushes to your feet in a shower, meant my on-fire feet were back in full force, and at that point my stored energy was completely depleted. Again, I felt my efforts to make it to life group were going to fall short.

Thankfully Rog helped me get myself together and then we both napped from ~4:30-6ish, and at that point I just decided to heck with it–I’ll deal with the pain walking from our house to the car because once we’re at church we can use my wheelchair and I’ll manage. Was NOT missing this meeting! Satan was NOT winning this battle. And boy am I glad I didn’t let him!

Once at church, we went down the ramp to get to our room, and as Rog wheeled me in the door I hear several people say “Haply birthday!” and am honestly kind of confused at first because with Lyme brain it takes a while for anything to process. So Rog wheeled me to the table where our snacks usually are and I’m still oblivious until I see a pumpkin pie–a GF, DF, EF, SF, non-GMO pumpkin pie–with a pink card on top of it, on which Becca is written in my momma’s perfect handwriting. And then it hits me–I look around and the pie is there, and there’s also a cake there with candles that say 2 – 5 and an assortment of other snacks, and there’s a banner that says HAPPY BIRTHDAY as well as some colorful corkscrew decorations (which Rog has deemed spirochetes–the Lyme bacteria form–because he thinks he’s funny….and he is).

I was so overwhelmed by this sheer unexpected surprise gesture of celebration, and I was even more overwhelmed when I realized my mom had been stealth about operation: Becca’s pie (meaning she had to call on another Lyme-sufferer friend to find unsweetened coconut at 10pm last night, because who else besides us Lymies keeps a stash of unsweetened, non-GMO coconut on hand? And meaning she stayed up till 3am last night making it so I could enjoy it at life group). And I was even more overwhelmed when my life group sang happy birthday to me, gave me a card that (of course) made me cry, and inside of which was a gift card for Whole Foods because they all know I have to go there to get any decent selection of Lyme-friendly foods.

And to top it all off, unbeknownst to me, earlier in the day Rog had sneaked a present from him into the bag on the back of my wheelchair and I got to open a super cool pair of TARDIS knee-high socks.

And of course the biggest blessing of them all was getting to spend time with this wonderful group of people, each and every one of whom I love dearly and thank God for regularly. And the fact that all these blessings warmed my heart immensely meant that any thoughts I had about not wanting my birthday mentioned were gone because these wonderful people wanted to do something to make me smile–and that in an of itself is a huge blessing–and one in an unexpected package because, like I mentioned earlier, until the life group celebration, celebrating my birthday seemed like the opposite of a blessing. Once again God proves me wrong. :-)

And you know what? Even though in the picture below you can see how worn out I am at the end of the day just from this short period of living, it was worth it, a million percent.

Look for those blessings!

Love and God bless,

Becca

First and foremost, happy Veterans Day!  A special shout-out to my dad, Greg Jackson, for the years he devoted to attending West Point and then serving our country.  I’m truly blessed to have grown up in a GO ARMY! household with a dad who was (and is!) a living example of the values of Duty, Honor, Country.  I love you, daddy!

Can you believe it’s November 11th already?  I can’t.  It seems like November has absolutely flown by, and my birthday is in 11 days, followed shortly by Thanksgiving, and then before you know it it’s gonna be Christmas!

Since it’s November, the month of Thanksgiving, I’ve noticed this year, like most years as of late, probably a good 60% of the people on my facebook friends list are doing the “30 days of thankfulness” facebook “challenge” (I put challenge in quotation marks because truly we all have at least 30 things to be thankful for, even if it takes a while to unearth them).  I personally don’t participate in this activity–not because I don’t have an abundance of thankfulness, but because I can’t commit myself to logging on the computer every day with my neurological issues from Lyme and Co.  I do post things for which I’m thankful when I feel a strong pull to do so.  But if I’m being completely honest with you (always my goal), anytime I log on facebook lately, thankfulness tends to be far from my mind.

This warrants an explanation, I know, so please stick with me.

Having a chronic illness–especially a chronic illness that is debilitating and takes away your ability to do very basic life functions–isn’t exactly a tea party (read: fun, read: exciting, read: activity you enjoy because you do it with others AND because you learn to love new tea…and who doesn’t love discovering new tea?).  And yes, I’m aware that statement sounds fairly whiny/complain-y, but I don’t mean it to be–it’s just a fact.  Life with a debilitating chronic illness is hard.

It’s particularly difficult when you previously lived a life full of excitement, activity, social outings, and fun, and no time of year highlights this more than the holiday season which encapsulates roughly the last two months of every year.  And social media makes this sudden life-upheaval even harder due to the influx of pictures posted by people we know who are doing things we used to enjoy, going places we used to go, living the life we feel we should be living.

For instance, anyone who has known me for any length of time knows I am a huge figure skating fanatic.  Specifically, I am self-professed to be Michelle Kwan’s biggest fan (I celebrate her birthday every year…just saying) and going skating myself is by far my favorite activity.  Obviously, since I currently can’t even walk without assistance of a cane/walker, and since we have to use my wheelchair 99% of the time I try to venture out of the house, I can’t skate right now.  And as first-worldly as this problem seems, it absolutely kills my spirit.  This is the time of year outdoor rinks open!  Going skating is the activity I look forward the most on my birthdays!  Being on the ice is the one place where my mind is completely free of anything that is stressful and I’m able to just be.  Yet I can’t currently skate and have no idea when I’ll be able to again (but I will skate again someday because I can’t accept not ever skating as a possibility).  The reality of all this is very painful, and is compounded each and every time I see someone on facebook posting a picture of themselves/friends at an ice rink, smiling, skating, having such a great time…and living the life I should be living.

Let me be clear, I do not wish ill on anyone, nor am I complaining that people post pictures of themselves and others having a good time at an ice rink–I am tickled pink that so many people find my favorite activity so enjoyable!  I really am!  And I’m happy that even though the ice rink in our local park is small, rough, and not easily maintained, it still opens every year and lets people have that taste of freedom as they glide across the ice (or the taste of ice chips as they fall–which is almost always accompanied by the laughter of the fallen skater and friends).  That is awesome!  But at the same time, each picture I see is a painful reminder that I’m not able to live the life I lived for years.

It’s very easy to get down in spirits when you’re at home all day, every day, (often alone because family members have to work to keep up with those things called bills, which are vital to life), and often can’t even call a friend to talk or read a book or surf the internet, due to whatever symptoms may be flaring on any given day.  (And it’s very easy to get down in spirits when a disease like Lyme and Co has done so much damage to your depth perception that you manage to slice your finger while cutting through a loaf of pre-sliced bread and have to go to the ER to get 7 stitches and a tetanus shot….which was my day this past Friday!)  And all of this makes it much harder, at times, to acknowledge the things for which we should thank God daily.  BUT doesn’t that make it all that more important for us to do it?

The answer is yes, just in case you didn’t know.  When we feel least thankful, that’s when it’s most important for us to make note of our blessings.  Notice I didn’t say easiest–because often, when we don’t feel particularly thankful–coming up with a list of blessings is hard!  But trust me on this, once you sit down (or lie down, or stand up, or do a handstand…okay, that last one’s not likely but you get the point) and just make yourself list 2 or 3 things you’re thankful for, I’m willing to bet those 2 or 3 will lead to 4 or 5, and then to 10, and before you know it you’ll have created a thankful list that far exceeds 30 without really trying.  Because it’s that easy.

If you don’t believe me, I urge you to prove me wrong.  Get out paper and pen (or pencil, or quill, or computer, or typewriter, or stamps…) and write down 3 things for which you are thankful, and then see if more don’t come to you easily after that.  I’m not saying you’ll come up with all 30 in one sitting (even though that’s possible!), but I guarantee you if you write down just a few, even if you’re in the middle of the worst day you’ve had, others will pop into your mind throughout the day without you even consciously trying to list them.

Here, I’ll help you start:

1.) I’m thankful I’m able to write/read today.
2.) I’m thankful for the day outside, even if it’s dreary, because it means God has seen fit to bless me with another day of life.
3.) I’m thankful we’re able to celebrate holidays like Veterans Day, Thanksgiving, Christmas, or any of the other holidays we celebrate.

Your turn….now….go!

Be thankful in all circumstances, for this is God’s will for you who belong to Christ Jesus.
1 Thessalonians 5:18

God bless,

Becca