Sometimes life feels a lot like you’re the receiving end of a powerful blow that you can’t seem to avoid, no matter the effort to evade it.
Escaping reality, even if it’s just something that you attempt to do mentally… it’s something that eventually, and inevitably comes back, and with force. Often a devastating blow. An explosion that shakes you, rattling your emotions. A dense and heavy cloud of humbling smoke, knocking you back to your truth. And finally, the whirlwind of leveling concussion. Your ears ringing with reality, and your mind scrambling thoughts and fears all while you make every pursuit to regain your stance.
While I may be likening worldly battles with the parallel of cannons and everything that encompasses the volley.. it’s truly one of the most exhilarating and amazing things to experience. As many of you know, ever since I was a little girl I did 18th century reenacting with my dad. It was our hobby until my young twenties, until Neurofibromatosis prevented it. In my later years of reenacting, I was awarded the privelege of fighting alongside my father and the other men. Outfitted in all the garb, with a musket of my own, fully enveloped in the slinging of sweat and black powder – amongst the volleys of multiple cannons.
Well, a couple months ago, a reenacting friend of ours invited my father and I to his house to help with some empty charge rounds. I had never fired a cannon until this day. It had been five years since I had even heard a cannon.. and for an hour, at least momentarily, I got to feel alive again. This day, I stood beside the cannon as a fighter. But this time, as a warrior of Neurofibromatosis.
It wasn’t a weekend away. But it was a short escape in a friend’s field – and I can’t explain the joy, and reminiscent sentiment it brought me.
LET’S ALIGN THIS EUPHORIA OF TEMPORARY ESCAPE, WITH THE REAL BOOM OF WHY i BROUGHT YOU HERE.
THE WORLDLY BOOM
This is one of those instances where it’s easier to try and pretend that your reality is different than what’s actually happening. And for me, the reality is, I have a permanent condition that’s progressive. And no one can stop it. There’s no doctor, no drug, treatment, or surgical procedure that can change or even remotely relieve me from the war my body is waging. Not only am I medical oddity by means of what I’m carrying… but also from the standpoint of the fact that I belong to a lesser percentile of patients. Most throw their entire weight and confidence behind medical minds and methods. I feel like I’m the only one who isn’t expecting the doctors to do anything. Because they can’t. This isn’t a hateful statement, and is most certainly not an intentional pessimistic point of view. The fact is – there’s no magical wand they can wave, nor is there any unheard-of phenomenon that they could apply to my case. And, frankly, it’s my gut belief that many simply just don’t want to chance anything else experimental – medical licenses and reputations on the line and all.
It’s one thing to know what your medical situation/condition is, but it’s another to digest the reality of it when you see the MRI images.
I was hit with that gut punch again this year, June 15th. Below are just three images I pulled from the MRI scan done. The first two images showcase my pelvic area (left glute facing you.) The last image is also of my pelvic area, but this is a “saddle” view.
Every. Single. White. Blob. Is. A. Nerve. Tumor.
So, where would you even start?
There’s still too many to count, much less remove. Which cluster is causing the most damage? If you were to surgically go in and attempt to scrape each tumor off with a scalpel, you run the risk of permanent irreversible nerve damage. Unable to walk. Incontinence. We’re talking total sensory loss and an extremely good chance of inducing total loss of function of the lower half of my body. So when people ask: “What will the doctors do?” …………
Ask yourself this….
If you were a woman with an extremely compromised pelvic area, what would you allow the doctors to try?
Talk about a cannon blast of reality, huh? This is my daily battle field. I don’t have a strategy. I don’t have a war plan, and neither do doctors. Even if they had the gumption to attempt something, it’d be the equivalent to entering a war in a foreign country we’ve gained no intel on, with not enough men, not the right equipment, in the pitch black, and in a storm. There’s no visibility, and zero promise of a win.
So, when I view images of a tumor-ridden body that’s mine, I’m reminded. Blown back with force. Humbled by my frailty. But I also find myself honored to fight this battle. I feel blessed to bear something so life changing, something so faith-inducing. Because, I’ll tell ya…. I lacked faith before this. I lacked a relationship with the King. I was a stagnant Christian… direction-less.
It’s sometimes hard to look back at pictures of me living a life that is 100% different than the life I’m living now. Years ago I biked, hiked, kayaked, was able to work full time. Now? Now every day, and every hour of that day is a humbled evaluation of my current level of mobility, or immobility.
Despite every day being a struggle of pain, lack of mobility, and sometimes downright fear of progression.. I know that there is nothing I feel, that Jesus hasn’t already felt. I do not walk alone, and because of that, I do not war alone either.
My enemy may also scamper and saunter about, but…
THE KING STANDS BESIDE, IN FRONT, AND BEHIND ME.
As far as battles and wars go, and as far as I’m convinced – I have the ultimate Commanding Officer. He, Who DOES know what lies in foreign territories, and in the dark, in the storm of my life. Every day I make the choice to trust Him, because I’ve been landed on the battlefield of a lifetime. I had “carpe diem” tattooed on me fourteen years ago. But I had no idea how to truly seize the day, until God showed me what living in the moment was all about.
And so, this is why I live every day in the pockets of time that I can. With each pain spike, limp, and muscle fatigue I feel, I’m reminded of my frailty, yes – but I’m also reminded that with every ounce of weakness I experience, is just more opportunity to be filled with His strength.