When Everyday Life is the Biggest Puzzle

Imagine your life as a jigsaw puzzle…

The information on the puzzle box is incredibly limited. It does not tell you how many pieces are inside. The photo on the outside of the box is just blue sky, scattered with soft focused clouds. As you look at the photo on the box, you mutter, “This is going to be so difficult to put together.” Every puzzle piece looks identical in color. The theory, in any time you put together a puzzle, is that the puzzle will look EXACTLY like the photo on the outside of the box. Your hands steadily open the box of the puzzle-of-life and remove the lid to see the contents. Much to your surprise, there are pieces of strange colors and of strange images, not all blue sky as you assumed.

My strategy, in putting together a puzzle, is to search out and place all the straight edges and corners to build the framework first. The beautiful blue frame stares back at you with the promise of many days yet to come. Your logical brain knows that life isn’t always going to be blue skies, it is a certainty that there may be clouds, maybe even a storm or two. As you fill in the pieces, you uncover a piece with an image of children. That’s pretty cool, not sure where they fit in, but it makes you smile. As you stir through the pieces, you discover an image of a lovely garden, again not sure where it fits, but pleasing nonetheless.

As you stir through yet more pieces, turning them right side up, you find a heart. Not just any heart, this one is broken. Oh! if only you knew where it fit, you could possibly prevent it from breaking. The next piece turned over, a hospital bed. You can assume that it must fit before the kids, after all, children are born in hospitals. But this piece is not even shaped like any of the other pieces. It is so random. You keep it within eye-line, always in sight, wondering when and where it fits.

You realize that you have excruciating back pain, you pass it off as having been sorting and searching for so long. Some hot packs and Advil with surely take care of it. There is a much bigger task at hand, making sense of this chaos. Hours and days blend together, as you piece together the story of your life. A little piece with a pill comes to sight, and another, and yet another. It seems as though the medications have multiplied and don’t resemble each other. You group them together and push them to the side.

You’re surveying the pieces before you. Some are brightly colored and some have dark murky images. A gloomy image of two people sitting across from each other in what looks like an office setting. These people do not look happy. One person with their head in the hands, the other holds a clipboard and pen. Unsure of what this means, you begin a new section of puzzle pieces.

Another shadowy piece is a bottle of poison, or so you think. When you look closer at the label, it appears to have some biohazard looking image on it. Is it a warning of something dangerous? Off to the side with the other dark pieces…

If only we were able to see all of the pieces of our life laid out in front of us. To see the timing and plan, the purpose of it all. Our sense of control would be so overwhelming, we would manage and manipulate the puzzle to fit our plan. Our way. Had I known that the piece with the broken heart would surface more times than I can count, I would have maybe withdrawn. Not allowed myself to love so ferociously. That would have been the worst, not the broken heart, the lack of passion in my life.

There is no way to compartmentalize life. There is no way to neatly organize our darkness or create nice, neat edges. The dark image of the people facing off in an office could represent many facets of my life. I’m not exactly sure which piece is which, perhaps it’s the conversation with a lawyer during my divorce. Perhaps it’s the conversation with a doctor that is just not listening to me or hearing the cry of my body. Perhaps it’s the conversation with a trusted friend that doesn’t understand or believe the abuse of my past. In any scenario, I’m was left feeling defeated and dark.

The dimness of a hospital bed, in this puzzle, served my parents, so many days and nights sitting around a hospital bed praying for better days. Cancer and disease are beasts that we try to tame. Days into months of lingering illness and pain. Some never know the victory over the beast. Little did I know, that in their death, I would learn about strength.

The ‘pill pieces’ have been present most of my adult life. I’ve battled depression and anxiety to epic proportions. I’ve had seasons of quiet and seasons of mayhem. Those manic seasons come and go, but never completely disappear. It’s in those season that I’ve craved peace. Sought it out and chased it. Peace is elusive. What you are certain will bring you peace, may be the core of chaos. While it is imperative to seek peace, seek discernment and wisdom equally.

In your busy-ness of life, you learn to pass off the little moments of discomfort as nothing more than nuisance. The back pain that stops you in your tracks can be attributed to a zillion things. Your weight, poor posture, an occupation on your feet all day. Never would you assume that your back pain may be the root of a deeper more invasive disease. Too busy to give it light, you pass it off as that, passing. When putting together the pieces of a puzzle within a puzzle, you discover you have an autoimmune disease, Ankylosing Spondylitis.  It’s when you understand your ‘biohazzard puzzle piece’ is not a warning of danger ahead, it is the treatment for the disease that you [and multiple doctors] failed to see. It’s the victory and defeat. You now have a name for the disease, but the treatment is another chapter in illness that you wouldn’t wish upon an enemy.

But in this tabletop view of life, you can see that these dark puzzle pieces are but small segments of a much bigger picture. Yes, they are visible, but they are surrounded by light. Not always sunshine, but light that gives purpose and life. Your life is that, purposeful. Breathe in the moment of right now. Un-burden yourself of the chaos and quest for having all of your pieces organized just right. Let go the pain of a season of dark days. Look for the lessons learned in those moments. Yes, even the darkness has a lesson to be learned. Sometimes it’s as simple as learning to not do that again, or it’s as complex as finding the voice within to stand up for yourself or a loved one in their dark season.

No, sunshine and blue skies would be too boring, for this girl. I will lean in and learn about love through the pain. Healing in the brokenness. Learn to slow down when my body tells me to. Life is to be lived, discovered anew. Throw the box away! Throw away the picture in your mind of how it should be. And, if life ever gets too blue sky, take a Sharpie and write cuss words across the pieces. Live life – out loud!!

 

 

From Where I Sit…

It’s weird the things you think about while you’re sitting on the floor of your bathroom. Yes, I also understand that it is strange for me to be sitting on the floor of my bathroom. More about that in a moment, I need to back this story up a bit…

Many months ago, I hadn’t been feeling well. I had this bizarre-o rash on my face, fatigue that would not be tamed and a general ‘not well’ feeling. I landed in the heart hospital with horrific chest pain; three days hooked up to all kinds of beeping things. The diagnosis? Acid Reflux. I knew it was malarkey, but I went to my follow-up appointment with a plan to argue the diagnosis. My fatigue was brushed off as part of my depression. Um, no. Well yes, I battle depression, and no, this wasn’t it. But what was it?

I begged for more lab work, anything for more answers. I was a pest with a purpose; I’d wear them down until they directed me to someone else. Which they did. One visit with a rheumatologist, and we set sail for an answer. I prayed for an ANY answer! I ultimately got an answer, Ankylosing Spondylitis. Yeah, I hadn’t heard of it either. As I researched the autoimmune disease, the more it seemed to fit. As often happens in autoimmune disease patients, if you have one, you have multiple. I was also diagnosed with Fibromyalgia. It all seems to make the other issues, of my medical past, connect. Vitamin B12 & D deficiency, Chronic Kidney Disease. Sheesh, quite the laundry list.

Meanwhile, back on my bathroom floor… As I sit here, I’ve been on 3 different medications over as many months. Insurance got to make the decisions as to what I must ‘try’ before the current medication, Methotrexate. It is categorized as a low-dose chemotherapy/immunosuppressant. Short story, the stuff that destroys your immune system so it quits trying to attack itself. So, here I sit, the day after my Methotrexate. Nausea, fatigue, the battle between wanting to wretch or take a nap. Typically, I’d be stressing about the dust bunnies behind the potty, thinking about how the walls need to be wiped down or how I really never liked this shower curtain. But today, as I sit here, I feel defective, coupled with the guilt of feeling this way. I’m not battling a life-ending disease, today. I’m fighting against being disabled. But that’s exactly how I feel. Dis.Abled.

PERSONAL PHOTO

As I first mentioned, it’s weird the things you think about while you’re sitting on the floor of your bathroom. I’m thinking about my lack of ability vs disability. In this moment, for now, I’m not really able to drive to the pharmacy to get the recommended vaccine [before starting the next phase of my treatment]. It’s only a temporary setback. It’s not as if I am in a wheelchair or anything. That’s being disabled, right?

Imagine driving around your supermarket/pharmacy and see a vehicle pull into the handicapped spot. You expect to see someone get out with a walker or the ramp lowering for their wheelchair. That’s being handicapped, right? Well yeah, it is right. But it isn’t the only right; disability comes in many shapes and sizes. Sure, we’ve all judged the overweight person on a ‘scooter’. “If they weren’t overweight they wouldn’t need that thing”, right? Fess up! We’ve all thought it. When we see someone step out of a vehicle on their own volition, we also think, “They don’t look handicapped.” I’m as guilty as the next guy. And as I sit on my bathroom floor, it’s as if I’ve been literally been dropped on my butt for my way of thinking.

We are so quick to be the judge and jury of someone else’s conditions. We minimize the needs of other’s to maximize our own. While I am the first to acknowledge that there are others who are struggling far worse than me. Yes, I am fortunate, I know that. However, by minimizing our weakness, we also minimize the level of understanding for those around us. I have to be truthful with what I’m struggling so that other’s understand.

My (our) truth is necessary so that we may recognize the truth in others. My truth, there are going to be days that I have to pull-in, lay down and honor my body. It is also my truth to share with others, so you know –the truth – Yes, I’d love to attend your special event! The truth of the matter, I may not have the energy that day. I may be struggling with excruciating pain. I may be concerned about the fact I will have no immune system to fight against a simple bug. Please understand.

The next time you circle the parking lot at Target, and spot someone pulling into a disabled parking spot, remember those of us with invisible illnesses. Those of us that ‘look fine’, even though we are not. The next time you see someone cruising the grocery store aisles in their ‘scooters’, ask if there is something you can reach for them. Reach out, reach up. Reach down, you may just have to help a gal off the bathroom floor!

Today

Today I know I have Ankylosing Spondylitis

Today I will grieve the life I had planned
I will be sad,
For me
I will cry
And cry out
Why me?
But just for today
Today,
My body is broken
And waging war upon itself
Today,
I will be miserable and shout obscenities
I will be angry at no one in particular
Just because, today

Today my precious granddaughter turns three
Today,
Her smile will warm me
For a moment
Today,
I will cry
For her
She won’t know the fun loving
Sit on the floor
Putting puzzles together, Grandma
For very long
But today,
She has me
The grandma no different
From yesterday

Tomorrow,
Is not promised
In life or
In death
In joy or
In pain
Tomorrow is,
Unseen and unpredictable
The plans we make,
Can change in a heartbeat
We cannot escape tomorrow,
Wishing for yesterday

Yesterday,
Is gone
It wasn’t
Bad or
Great.
But yesterday,
I didn’t have AS
Yes,
Logical brain,
I did.
But I didn’t know,
Yesterday

Yesterday,
Sometimes,
Looks better in the rear view mirror
“Objects may not be as
shitty as you remember”
Yes,
Yesterday might have
really sucked, too
Everyone has a yesterday,
Not everyone,
Has a tomorrow
So today…

Today,
I will grieve
If I feel like eating
It will be
Ridiculously unhealthy
I just might,
Wash it down
With some wine
Today,
I will roll around
In self pity
For me
For everyone around me
But just for
Today

Only today…