February can be such an anticlimactic month. All the glitter and goodwill of the holidays packed up in boxes with the ornaments and stored away, collecting dust for the next 11 months. Resolutions starting to lose their appeal.
I have often said that the world would be a better place if we lived in a perpetual December, but here I sit on February 2, 2018 in a rut already.
I always try to be honest. So, for transparencies sake here is my truth: I have not washed my hair in three days. No, this is not about to turn in to a sales pitch for the next great dry shampoo or hair care system. My hair is disgusting. Pretty inspirational, right? Stay with me, we will get there. I think I jumped just a little too far ahead. Let’s back up and try again…
Truth: I have not washed my hair in three days. I am exhausted. I am worn. I am in constant and considerable pain. I feel pretty worthless and frankly quite ugly by the standards of this world.
Truth: As much as I try not to, I still struggle with measuring myself by an unobtainable standard of beauty. A standard created by a broken and sinful world. It makes sense considering that I am so very broken myself.
Truth: I have been in the hospital or at least I have been to the hospital almost every other day for the last three weeks. Boy, can I think of about a million things I would have rather done or at least that I would have rather spent that money doing.
Truth: If you have made it this far, pat yourself on the back. I have one more “truth” before we get to the glitter and goodwill, the “you’ve got this" pep talk, the “your fist into the air like you are John Bender at the end of The Breakfast Club” kind of feeling. That truth is that I am sick.
Not sick as in “I have the flu that has become an epidemic in our area” kind of sick. Not sick as in the “oh, we see this all the time and we know exactly how to heal you” kind of sick.
No, I am sick as in “that is really rare. I have never seen a case in real life” or “tell me again what it is called and what that means because I have never heard of that and do not have any idea where to even begin treating you” kind of sick.
Sounds like an adventure, right?
Well, let me give you a 10,000 foot view. I have a genetic disorder called Ehlers Danlos Syndrome. It has caused me to also develop several other life altering conditions like Superior Mesenteric Artery Syndrome, Renal Nutcracker Syndrome, Adrenal Insufficiency, and Disautonomia to hit the high points.
I could fill pages trying to explain what all that means (or save readers a lot of medical mumbo jumbo, just click on the links if you want to dig in deeper). Instead, what I can tell you is that my EDS is the root cause of so many changes in my life- the way that I eat or drink, the way that I sleep, and my ability to work. It seriously has changed every facet of my life- clear down to the way that I walk (more on that in a moment).
I had no clue that this disorder ran in my family or that I might be carrying it until I was in my 30s, had 4 kids, a husband, a couple of degrees, and a job that I adored. Up until the birth of my youngest son and my first obvious brush with my own mortality, my life seemed pretty charmed.
Once I fell ill, it took me several years of doctors, hospitals, tests, and many tears of frustration before someone identified what was causing my joints to dislocate with nothing more strenuous than walking or even clapping. It took even longer for my medical team to determine why my stomach had stopped working. I have had surgeries, spinal fusions, feeding tubes, been unable to get out of bed, and turned into a human pin cushion to maintain some semblance of living a normal life. Imagine having to focus all your time and energy on doing the types of things that most people get up out of bed each day and do without a thought. It can be a lot. At first, it was.
Like any sane person would, I went through the “WHY ME” stage of illness.
I tried so hard to think about what I had done so wrong to deserve this. When you are bed ridden, it gives you a lot of time to think. Too much time to be exact. You think about the things you should be doing, the things you would like to be doing, the things you used to do, and even the things you expect that you will never do again. It is a dark and deep rabbit hole to travel down and it is one that spirals easily out of your control.
My advice- avoid it if at all possible.
It did not take me long to make myself absolutely miserable. I felt like a burden to everyone around me. I could not work the job I had worked so hard to get. I could not help support the family I had helped create- financially, emotionally or even spiritually at that point. I was lost.
Everything that I had used to define myself had been stripped away. At other stages in my life I had been tested spiritually, but never to this depth. I felt it to my very core. I felt worthless. I felt unnecessary and like an extraneous weight-- burden was the word that I kept hearing whispered in my head.
What good was I to my family? How could I help anyone else when I did not even have the strength to get up out of my bed? I cried so many tears and so many times, “Why me God?” I begged for healing. I begged for answers. At one point I begged for release, because I was just not strong enough.
I felt like I was nothing.
It was then and there that I felt what had been there with me all along. Only when I had been stripped of all the things that I had been hiding behind, only when I admitted that I wasn’t strong enough, only then did I allow enough room in my life for God to lead me.
Now, just to be clear, I am not saying God made me sick. No, but He can make good out of ANY situation. He is a filler, not a forcer and I had left Him no space to fill. I said that my EDS had changed the way that I walked and that is so true- not just physically, but also spiritually.
The entire time that I was healthy of body, my spirit was dying.
I was a pile of dry bones hurtling toward this shattering and stripping of my worldly self. When that happened, God picked up those pieces and lovingly pieced my life back together. His light shines through the many cracks left by my pride and stubbornness. He fills in all my gaps.
That does not mean that He has healed me. No, that time is coming. Right now, I believe that the way that I suffer is my greatest testimony. That sounds sort of martyr-esque, but the opposite is true.
My focus is in being positive and enduring in spite of the inconvenience. I want to persevere. I want to use the energy I have to shine His light.
If I cannot travel to third world countries as a missionary, I will tend to my mission field right here at home. I like to call it Armchair Warrioring. I will pray about anything and everything, at any time. That is my mission field and I tell you what, I am rocking it!
Am I still hurting? Unfortunately. Do I have days where I still wonder why me? You bet. Am I going to sit here and pretend that I never get overwhelmed? No, I am not that girl.
I fail, like a lot- probably a thousand times a day, but in those moments I cling to Proverbs 17:22 ESV,
"A joyful heart is good medicine, but a crushed spirit dries up the bones.”
When doctors are befuddled and nothing seems to be working, a positive attitude is sometimes the only defense I have. So,
And I push on…
So, I am back to where I started- I have not washed my hair in three days because it takes courage that I just do not have right now. It will take all of my energy and will increase my pain exponentially. That is just not where I want to expend my energy.
The beauty I am seeking is so much more than skin deep. The journey my illness has taken me on has blessed me with an intimate understanding of life’s fragility and the definition of true beauty from a young(ish) age. I do not take that for granted and I hope that you never have to suffer a shattering, so appreciate the blessings in your life. Step out in faith today and do something that helps you find your shine, Warrior. Selah.
Hi. I'm Jen-
a small town, Oklahoma girl married to a superhero. Together, we are raising a family on second chances, shiplap, and a shoestring.
I am a firm believer in grace, organization, and efficiency. I find great satisfaction in taking broken items and giving them new life, likely because that is exactly what God did for me.
I over use the word shine, exclamation points, and emojis. I cheer too loud in the stands of my kids’ activities and hug more than is socially acceptable. A natural born encourager and armchair warrior, I am learning to redefine my mission field and make the most of each day I am given.
I am chronically ill and chronically positive- not necessarily in that order. I am learning to practice perseverance over perfection and long for the day I get to see my grandparents and Jesus’ face.
Until then, I am just looking for Grace in the Grind.
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