Let’s Keep Running the Race!

I’ve needed constant reminders lately of what faith is, what faith needs to look like in my life, and the promises that will follow when I abide in that faith. That walking in faith means not needing to see the road ahead…because of the assurance that the finish line is there…and at it is the biggest cheering squad we’ve ever seen, giving us water that will quell our endless thirst, towels to permanently wipe away the sweat and tears, and our Coach waiting with open nail-pierced arms, shouting that we’re almost there…we can do it…don’t give up…finish strong…in a voice that we suddenly recognize! Recognize as the sound of our shoes against the pavement on those lonely stretches of road; as the wind rustling the leaves in those misty, barren valleys; as the chirping of birds in those sun-kissed patches; in the cheers and encouragement and prayers of our loved ones from the sidelines. We suddenly realize that those sounds that were always there, sometimes so distant almost imperceptible…formed a symphony…the symphony of our life…that was only in-tune when we locked eyes with the Conductor. And in His embrace…suddenly that symphony melded into one note…the most pure and beautiful tone…saying, “well done my love! You did it! I knew you would!”

It’s been 10 months since my body called it quits…my symptoms became so severe that I came to stay with my parents in Massachusetts. It took me 4 months to get any answers for a complex set of conditions that I knew were debilitating me, but are only acknowledged by a handful of surgeons around the US. In November I had surgery for a tethered spinal cord; I’m recovering well but it will take 1-2 years for the nerves to start functioning 100%. My real issue (and I’ve got lots!) is instability in my neck where my skull meets my spine, called craniocervical instability (CCI). In January my neurosurgeon in DC diagnosed me with significant instability at my craniocervical junction and it’s compressing my brainstem and causing my pain, headaches, brain fog, pre-syncope, dizziness, nausea and too many more symptoms to list…and that part of the brainstem controls breathing and heart rate. It became so inflamed last May from constantly looking down while I was cooking…that it’s why I became so debilitated. Additionally, I found out that the lower part of my brain, the cerebellum, has herniated down into my spinal cord. I also have herniations in my lower neck that are causing an abnormal curvature of my spine, and she saw compression of my internal jugular veins, which I saw a specialist in Long Island for just this week, and I don’t need stents put in, yay! My neurosurgeon is proposing 2 separate cervical fusions…the first would involve removing the lowest part of my occipital bone and then fusing that through C2. Next would be fusing C5-C7.

This is a huge decision I have before me. Fusion at those levels will leave me with significant loss of function and mobility. It would open me up to other complications and most likely speed up the need for more fusions. But my quality of life has been so severely diminished at this point…I’m ready to go there if I need to.

I left that appointment almost in tears…both because of what these surgeries would mean for me…but also out of gratitude to have been seen, to have been validated, and to have such confirmation for what I knew has been going on for so long! Right away my biggest fear was in making the wrong decision…but as soon as I realized that fear, I knew instantly that God would give me peace, as long as I keep seeking Him, like he has done every single time. He is so faithful! Seek His spirit, His word, and His divine Providence. Tune my ear to Him, and wait for Him to lead and move.

I am not jumping into the fusions yet…I’ve tried to avoid that for several years now and have not given up hope that our God is bigger than any of these diagnoses!! I am still working with my doctor in California to treat my spine, and even though I’ve had over 200 injections at this point, I am confident that in light of the tethered cord release and those nerves finally working again, I will see breakthrough where I haven’t before! I also don’t want to limit God. Going into my tethered cord surgery, I knew he could use it to completely heal me…and that healing just may take more time.

And so…on Monday, I am finally going home!!! And I don’t know what that will look like for me. I’m easing back into work, but I don’t know where my threshold is for inflaming my brainstem to the point of being debilitated again. So this time, I’m going to listen to my body, and when that “check engine light” comes on…I’m going to stop and tend to it! And I have amazing clients who are willing to be flexible as I make this transition. And then I’m going to keep working with my doctors who haven’t given up on me and who have that same hope for my healing. And I’m going to take it one day at a time, keeping my ears in tuned to the leading of my Coach, to the cheering of my tribe, to the rustling of those leaves and chirping of those birds.

Flying out of DC after my neurosurgeon appointment, there was a stunning sunset…one where the sun was above the clouds that were blocking the city below. I knew it was down there even though I couldn’t see it…but my gaze was on the sun…the Son! And I wrote these words… “Heading home…with hope on the horizon! I was validated, seen & heard, and finally diagnosed with what I’ve been certain is what’s left me so debilitated, unable to do the things I love.” And that’s how I feel right now as I head home to Florida… I am filled with hope. Hope that I can once again have a full life…because I believe Gods plans are to prosper me, not to harm, to give me hope and a future! And that promise from Jeremiah was my verse of the day the morning after my neurosurgeon appointment in DC!! Thank you all for your endless prayers, encouragement, love, care and support. For cheering for me from the sidelines, keeping my focus on that voice at the finish line saying…you can do it my love!

“Faithful from Beginning
Look how Far You’ve Brought me
Where Would I have Been
Without Your Love
Faithful to the Ending
You have Never Left me
I will not Forget
What You have Done

The Best is yet to Come
You know Just what I Need
You know me by my Name
You never Miss a Thing
My Future’s gonna be Alright
I don’t Need to know
Where it Leads
If I only know One Thing
I know You go with Me
The Best is Yet to Come


Your Hand will
Always Guide Me
Your Love will Always Find Me
There’s Joy in Being
Right where I Belong
And if my Feet should Stumble
If my Heart should Wander
You will be the Light
That Leads me Home”

@Mack Brick, The Best is Yet to Come

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One comment

  1. Ashley, we are praising and thanking God with you for all He has done and all He will do. Your faith is a light to others and we thank God for that too. You are in His ministry, and He is using your long-term suffering for His purposes and Glory. Thank you for inspiring faith in others through the work of His Spirit. With my love, prayer, and blessings, Toni

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