“Spoonie,” “Lymie.” I hear these words often in the new world of chronic illness that I've been ushered into without my consent. For some reason they have never sat well with me and words that I often hear but have never weaved into my own vocabulary. I've never sat long enough to really ponder the why and how of it all until recently when I let these words marinate in my mind for a good while and pondered the implications and the thought process behind them.
I think when I pause to sit down and ponder these words I must confess that it stirs something up deep within that causes me to chafe against the very things that have left such deep scars in my life...something so horrendous and so life altering that will forever change the course of my life altogether. In a sense I don't want to give a name to something that has stolen so much from me... I'm done surrendering huge parts of my life and my time. I'm done fighting relentlessly. I'm just altogether done and often undone. It's as if giving it these nicknames somehow gives it power and an identity over my life...and that, my friends, is not an identity I want for myself.
Like so many of you reading this, I had a life before I became ill. I had an over packed schedule full of fun play dates for my children, outings with my girlfriends, church activities to attend, and vacations to plan. I had a bustling existence full of hopes, dreams, and the ability to accomplish them all with copious amounts of energy to keep up with the demands that were stacked up against me. Life was for the most part a breeze and I was relishing every moment of it all the while skating through worrying about what outfit to wear and what friend to invite to my next outing (and what nail polish would go with said outfit).
Fast forward to my present existence and my life looks considerably different. Days are filled with renewing prescriptions, forgetting and wondering if I took said prescriptions, sitting in saunas, binding with supplements, attempting to ease pain, wondering if my newest symptom is a good sign or a bad sign (do others experience this too?), long days at home alone, friends that are long gone and who stopped calling, and often pondering how we're going to pay our bills. In a nutshell it couldn't possibly look any different and it's a far cry from my old life. It's not a life any person would desire but it's my current reality and I don't have a magic wand to twirl around and make it all go away.
I think that's why I have such a hard time with these chronic illness phrases...they encompass everything I don't want my life to encompass but it does. Like so many of you who were dreaming up your life plans this wasn't on my wish list next to my white picket fence in front of the home that I own and a family to grow old within it. I didn't envision the constant loneliness, the excruciating pain, and the frustration of dealing with a medical system that turned its back on us long ago. This experience has only confirmed what I've already known....we don't necessarily have ultimate control over our lives, do we?! What has happened to us isn't something that we sought out and pursued, or the result of bad choices in life but rather a series of unfortunate events that led to our present situation. You can call it what you want...providence, bad luck, misfortune, or unfavorable circumstances…but it is what it is.
It's my choice to choose to believe that God in all His sovereignty and goodness (yes, I just said goodness!), for reasons unbeknownst to me (and perhaps too high for me to understand) providentially brought this season into my life. I can writhe, pound my fits, and scream like a toddler against the sad circumstances and kick against the goads but ultimately it won't change a thing (except make me a little more bitter). There's one phrase that I've held onto throughout this whole frightening journey that's anchored me when the rains have poured down and the heavy cloud of despair have billowed above....
"Sometimes God allows that which He hates to accomplish that which He loves."
~Joni Eareckson Tada
Think about that...really let that soak in for a moment or two and perhaps reread it if you need to. What if all the relentless pain, immeasurable heartache, substantial loss, and deep depression were all a catalyst to help shape and form you into something altogether different. I think Gregg Kirk put it so beautifully when he said, "Instead of reacting negatively, you can accept it gracefully and realize what a gift of experience you have been given. This experience can be like a forest fire that burns away all unnecessary elements in your life, while creating space for new growth. Yes, it burns things you deem valuable, but after those things are gone, you realize they weren’t as important as you thought."
I think if we're all really honest with ourselves and take a step back to examine our lives (either in the thick of it or on the other side of it) we can uncomfortably identify - like an unpleasant jail lineup - the unnecessary elements that have been burned away as we've traversed the paths of battling Lyme. For some this process looks like a painfully slow burn while for others it’s a rather swift occurrence (similar to a band-aid being ripped off a little too quickly!). But in either circumstance there's been a substantial amount of loss. All the while we simultaneously recognize that while much has vanished and is long gone there are other things (and people) that remain. I like to think that those beautiful elements that have withstood the heat of the flames are one’s worthy of our love, affection, appreciation and definitely worthy of keeping.
Perhaps we should view this fire as a refining fire...placed in our life as a means to transform us (similar to a caterpillar that beautifully transforms into a butterfly). May it show us the strength we didn't know we possessed, perseverance we may have lacked, and compassion for others that may not have been present. And if the aforementioned qualities were already possessed then maybe they were only strengthened all the more while traversing the bumpy road of hardship. Perhaps then our identity, that so often gets clouded over like a thick blanket of fog in the midst of adversity, can be the person we deliberately and relentlessly fought tooth and nail to become. The fog will eventually begin to lift giving us the clarity to view ourselves with greater compassion, deeper respect, and ample appreciation for the individual staring back at us in the mirror that didn't give up. We recognize that we didn't give up when physicians, friends, and family turned their backs on us, when few understood what we have gone through, when we kept the faith during dire circumstances, and when we persevered by putting one foot in front of the next no matter the setbacks or lack of progress. We.kept.fighting!!
So the next time you reflect on your identity and wonder what your life has become in the midst of this life changing experience I want you to remember this....you are more than your current circumstance and more than your illness. You are more than a burden and you are more than an outlier. What are you then you might ask? You my friend are a child of God, you are made in His image, and you reflect His handiwork. You are fiercely loved, never forgotten, and always provided for. You are a fighter, a survivor, and a warrior who has waded deep and scary waters. You will go on to accomplish remarkable achievements as a result of this refining fire you have trudged through. Look forward with expectant hope standing on a platform anchored by the love, compassion and the God who carried you through it all. There are good days ahead full of laughter, joy, and peace.