This week marks one year without any black outs.
It's a pretty silent marker, actually, but carries a weight that's hard to describe. Like a kilometre marker in the middle of a race, it's not something that stands out all that noticeably on its own, but still represents something pretty significant in its own right. Practically, it's progress that means a notable reduction in medication and treatment and a benchmark that removes all limitations on the intensity and duration of activity. It signals stability, which is a word and reality I'm honestly still not quite sure what to do with.
Chronic sickness is hard to live with, much to talk about.
How do you explain years of appointments, tests, and treatments, mostly with a lack of answers and the roller-coaster of improvements and challenges that unfold in a consistent back-and-forth battle? How do you articulate the fear you have to fight against almost daily and the days when it feels like sick is your new constant - the new normal you've been forced to live with, even though you'd do or try pretty much anything to see progress? How do you carry the weight of something that isn't easily seen, but that changes your reality entirely?
How do you quantify the hope that sprouts too - the days you hold tight to the promise that this won't be forever and the pain will eventually subside? Or the disappointment that comes when you don't see that improvement and the journey feels almost impossibly long?
How do you even begin to accurately convey the ways that Jesus makes Himself known to us in our pain, the paradoxical closeness with Him that takes root in the darkest places, or the depth of comfort that takes root in when you come to know - really really know - that in our weakness He really is unfathomably strong? How do you hold the tension of something so absolutely difficult right next to the sheer depth of the grace that comes from learning to lean more fully on this God who is absolute worthy of all our trust?
I have no idea. Nor do I have any idea why healing comes slow and often like a roller-coaster or sometimes, not at all. I don't know why sickness is so pervasive or why our bodies fall apart and fail us or hold us back.
But, I do know this: Our God heals. Our God draws near. Our God turns weeping in to dancing and lament into songs of joy. Our God never abandons us to the darkness. And our God has the most incredible track record of making something shockingly beautiful out of mess and brokenness. And, I've learned - even thought the darkness is darker and heavier than we can imagine - that the light still shines with a stronger and more hopeful resiliency in all places, at all times, and against all odds.
I've seen it - I'm seeing it - with my own eyes. And I can't really get past that. Or, past Him.
My health is as stable right now as it's been in years. It's not perfect certainly and this journey isn't (even remotely) over, but the sheer weight of those words and this reality isn't lost on me.
It's grace that feels deep and weighty: sickness doesn't feel like home anymore.
I trekked to Everest Base Camp this past spring without any complications - the fulfillment of a life-long dream and one of the sweetest examples of redemption made tangible that I now know (and a picture that is now posted to the "success board" of my neurologists' office!). I'm running again consistently - not fast yet, but getting there and dreaming big dreams in that area of my life again. I've been back at work full-time for over a year and seeing Jesus sustain both my body and my mind in the day-in-and-day out pressure of a high-intensity career. I've seen healing come in the tiniest glimpses and huge bounds and even on the days when things flare up or where progress feels slow, I'm just utterly blown away by His faithfulness here.
Being sick has changed me. I think it's still changing me. I didn't know what paradigms needed to be rewritten and re-structured until I had to face limitation. I didn't know the places where I didn't know, believe, or extend grace, until those gaps and areas of weakness were so evidently in front of my face. I didn't know how bad I was at living in the moment, until I had to divide my days into hours and celebrate the little victories of having a good morning or even a few good hours. I didn't know how deeply, toxically, and pervasively my own unfair and unrealistic expectations of myself had affected my relationship with God and with the people around me until Jesus gracious began the journey of uprooting those things in me and redefining grace and flourishing and success and beauty. He's still doing that. We're still on that journey, He and I - redefining truth according to His standard, beauty according to His definition, and success in such a way that aligns with His Kingdom and heartbeat.
But His grace? Oh, it's weighty. And His mercy that helps us live into each hour and day by His strength and in His joy? Words can't describe it.
When I walked away from the hospital after my appointment, I thought about how different this feels from countless appointments where I'd drive home and curl up in my bed and cry. I still so clearly remember the days I would walk away feeling entirely defeated and fighting with desperation to hold on to any amount of hope. I remember feeling utterly exhausted - by being sick and by the process of trying not to be sick. I remember so many days and nights begging God for even the tiniest breakthrough.
And now here I am. Here we are. I'm still trying to wrap my head around it.
I thought about how being sick used to feel absolutely normal and now it's again the exception and how that sometimes still catches me off guard. I thought about the days I ached for the chance to consistently do the things I love again and that now I have official (and full!) permission to do so. About the team of medical professionals who've worked with me over the past few years, especially the ones who looked beyond the medical charts and became cheerleaders. About my roommates and our home and about love that carries us when we can't carry ourselves. About my bike tour crew and how they taught me so much about finding joy in the midst of disappointment and changes in plans. About the countless friends and family who believed for healing with me (and for me when I couldn't see that far). The community that extended endless grace for cancelled plans and lacklustre energy and a thousand food restrictions and who believed for a renewal over all that was broken. I thought about the phone calls and text messages and the persistent prayers and the way Jesus has an incredible way of using people to speak truth and peace to my tired heart when I couldn't find my footing. I thought about all of the people who have shared tears and anger on my behalf and the army of people who've been with me and for me in all of this and how there's no way I'd be where I am or who I am without that deep and sacrificial love.
I thought too about the community of those who struggle with chronic sickness or pain - a tribe of incredibly brave, resilient, and hopeful (even against huge odds) fighters. I thought about how much they've taught me and still teach me. About the ones so many of us don't even know are struggling and even those who we know are, yet can't do anything to make things better. About the brave ones who make pain look effortless, even though it's the farthest thing from it. About the ones whose courage and resiliency speaks with the most profound weight, even when that bravery simply looks like showing up or giving themselves the grace to acknowledge their own limitations. I thought about and prayed desperately for breakthrough in the lives of so many who are in the midst of their own storms and about how much my heart aches for them. About how much I hate that my own progress isn't happening side-by-side with theirs.
And, I thought about the ways that Jesus has reshaped and rewired and graciously moulded me in this. About the ways He's made Himself known to me, the ways He was with me and carried me through every single moment and emotion. I thought about He taught me to pray here and to rest and even how to delight in my weakness. How all of this - every moment of comfort or peace, every step forward, and every ounce of healing - is all to His credit and a humbling and overwhelming and good gift.
I still don't really know what to do with this week except crying a lot of happy tears and going for as long of a run as my legs could handle and scribbling a thousand babbling words into a notebook telling Jesus how thankful I am for who He is and what He's done and is doing. My neurologist and so many of my friends tell me this is worth celebrating and I know it is.
But I also know that this progress - as significant as it is - doesn't make Jesus any more powerful or beautiful or majestic than He was on the days when I was curled up in a dark room, when fear held tight with an unforgiving grip, or when my body felt like it was falling apart. He hasn't changed one bit in any moment of this. And He's never been any less worthy or powerful or beautiful.
He was beyond worthy of all my affection, praise, and attention in the midst of being sick, in the depths of the hardest parts of grief, and in the scariest parts of burnout. He's beyond worthy of all my affection, praise, and attention in these big steps forward into a new normal that's lined with new life and new stability and new hope. And He'll remain worthy of all my affection, praise, and attention for the rest of time until all breath and language fades and harmonizes into a song that speaks of His majesty and His love for all of eternity.
But this progress does give me a reason to celebrate the reality of His power and beauty and majesty made a bit more tangible and palpable: right here and right now. It gives me a(nother) story of answered prayers and a testimony of the mercy of Saviour Jesus.
That's definitely worth celebrating. That's always worth celebrating.