I had ample opportunities to enjoy life regardless of the circumstantial inconveniences. Even before my condition reared its ugly head. There were years I slept through, and I don’t mean laying down and snoozing. I’m talking about the fact that I coasted through opportunities, second and third chances to make something right, tons of time, plentiful energy and feasibility to chase goal after goal. I didn’t do as much as I could or should have. I didn’t always focus on the blessings and windows of laughing, and loving like I should have. You know, actually reveling in the moments I was given. I now realize that I didn’t live in the pockets of time that I was supposed to. I literally let days and days of pain free possibilities pass me by entirely.
FAST FORWARD A FEW YEARS
As many of you know, 2018 is when things got real for me. But 2019 is when I figured out that my mutation had escalated to this…. untamable beast, of sorts.
When my tumors took another turn of destructiveness back in 2019, I was still very much working. My work-week became shorter, in essence. What looked and felt like a full time schedule to me, realistically was considered “part time.” I was doing all that my body allowed – and it was still rough. I remember the feelings of, “This is imminently bad, and getting worse.” My nights went from just a few hours of sleeplessness, and pain levels that could somewhat be muted to get me through the day – to a place in time where the hourglass paradigm of life as I knew it, was ending, and quickly. The Gabapentin dosage quite literally doubled, and I felt myself needing insane amounts of espresso just to function. The naive burial of what was occurring within me was a last ditch effort to maintain some amount of normalcy while I made every effort just to tread the waters of the nerve tumor nightmare. And the pricy espresso was just a tool I used – something that barely sustained my broken body and spirit to keep the decrepit Energizer bunny spirit somewhat alive. But, as 2019 came to a close, I knew I couldn’t do it anymore. I actually started to look half dead.
It didn’t matter if I wanted to keep working – the way my pain had progressed, I was a liability for unreliability. Flare days increased, and as a result realistic productivity was limited, and in many cases – halted. My hope was that stepping down from a career that I was unfortunately now seasoned in, would allocate for the bodily rest I was starved of, and maybe even slow down the growth of the tumors if I wasn’t pushing my body and mind through a gauntlet every day.
I wasn’t a career woman anymore. I was a patient.
Being untethered to the career force, has aspects of “suck.” I won’t lie to you. I’m aware that a large portion of our nation thrives in unemployment (I guess?) but I’m not one of them. I don’t find joy, or fulfillment being purposeless. I pray all the time that God shows me my next passion and purpose. I would still, no doubt be facing each day – one hour at a time. And some days, it’ll be one minute at a time. But even despite all my inabilities, I know the Lord gave me an equal amount of abilities too. All the believers, you guys know that God uses everything to propel us towards our ultimate destiny. And we know that all things work together for good to them that love God, to them who are the called according to His purpose. Romans 8:28
Waiting on my calling! (And mind you, I’m almost 32 and essentially starting over.)
“It’s a helpless feeling”
I can assure you this truth – what I battled while still entertaining my dwindling career, was a cake walk to what I battle now.
This isn’t something you “get better” from. Ever. Neurofibromatosis actually progresses. It literally gets worse as life goes on. It’s incurable.
I have days where the tumors cause my nerves to scream less loudly, and other days…. it’s unexplainable what my 24 hour day looks like. Only a few of family have really seen me through flares. Naturally Dell is with me through all of them, and he’s always strong for the both of us. Seeing the flares through takes a toll on not just me… it takes a toll on those around me who love me.
They see it, want to stop it, and they can’t.
“It’s a helpless feeling.. to not be able to do anything about it. It’s difficult to watch.”
My sweet husband’s words. The man who leaps from bed when the screams start – he’s filling the tub with hot water. The man who drops to his knees beside me – and prays, ceaselessly, for any relief. The man who won’t sleep until I do. The man who provides for me, takes care of me, is my protector, my emotional support, my rock, my dose of humor, my best friend, and the one I’m blessed to do life with.
When God made this man, He broke the mold.
And when He brought Dell into my life, I’m convinced that I became the most blessed girl of the entire planet.
moment by moment
That’s how I view each day now.. is moment by moment. Time is so precious, and we waste so much of it by living in the past, and looking too far forward to a day that may never come.
Funny story. When I was young twenties and hot to trot, still very much early in my career, I foolishly planned how my life would go. I had the vision of where I might end up, the money I’d be making, hobbies I would entertain, all the trips I would take, yada yada. Basically the pre-adult fairy tale we all tell ourselves. I wasn’t a flake though, mind you. I put foot to rear and saved a lot. I wanted to retire early, invest, and start an empire. I was diligent and regimented. I barely lived for the sake of working, and obsessively planning.
It was an exhausting cycle that I engaged in until I was entering my late twenties, which was about 27. Which was about the time God decided to humble me and use NF to mold me as a person. That’s not an angry statement, it’s a direct statement of truth. As crappy as it is, this mutation is probably the best thing that could have happened to me. I didn’t start “living it better,” until I got sick.
MAKING EVERY EFFORT TO LIVE IT BETTER
When I reflect back, it’s easy to see all the times where I took health, and no pain for granted. I remember when I took even the minimal pain for granted. Those days back in 2018 and 2019 where I had literal days of what I thought was excruciating pain, I wish I’d lived it better. I don’t wish to transport back to the years past, I just wished I’d been more acknowledging of “good days.” Reflecting back, and living in the past are two different things. We have past history to teach us better ways of moving forward, so we don’t make the same mistakes twice. The mistake I make daily efforts of not repeating, is the effort to acknowledge every good moment that I get the privilege of experiencing.
For right now, my condition is worse than it was when it started. The tumors might go dormant for awhile, or they could hit a growth spurt later today. I don’t know, but either way, it’s not my job to worry about it. It’s God’s design that I am 100% present for the moment He’s presently given me… and it’s up to me to make those moments count.
We need to make moments truly memorable!
Laugh more. Hug more. Read more. Go for a walk. Pray more. Say what you mean, and mean what you say. Stand up for what’s right. BE IN THE MOMENT YOU’RE IN.
I don’t think it’s healthy for us to actively seek for a situation to grow worse, even if we suspect it might. We’re anxious for the what ifs, which is what humans do by default, I think. The only thing that I can do on my journey is stay the course, and stay strong. And the same goes for each of you. We are all set on the path that God has authentically chosen for us to travel. It’s unique to the set of feet, the body, the brain, and to the spirit. Whatever is being used to tailor us, isn’t meant to break down our spirit, it’s meant to train it.
I think the key to hanging in the balance, and finding harmony amongst the uncertainty is just to embrace it in it’s rawness.
I’ve spent almost all my days not seizing the day….
But I’m working on changing that.