continuing to hope
My first post on this blog is a slight variation of this post. It’s titled, the beginning of hope. It’s where I began to chronicle my journey right after being diagnosed with multiple sclerosis. I’m adding to and updating it today, March 24, 2018. I don’t want to add too much to it based on my thoughts now because it’s real and raw about what God was beginning in me, but I want to come back to this sweet reminder, solid foundation, and trail-head. However, I have re-read, updated, and added some details as I’ve walked this out over the last year and a half. So, here it is:
Back-tracking to my MS story: when I was pregnant with Maggie, our 4th little blessing, I had these crazy dystonic episodes that would uncontrollably throw me to the ground in pain multiple times a day without much warning (think seizure looking). I saw a neurologist eventually and got medication to help and then the episodes subsided after Maggie was born, so we just moved on, thinking that it was spiritual warfare because they started the week we launched New City Church. About 18 months later, I went blind in one eye. Like, really blind. An eye specialist said it was optic neuritis, and that “tumors can cause this, you need to get at MRI right now”, so off we went for what ended up being a 3 day hospital stay to treat my failed optic nerve and get tests done. It never fails to amaze me now that I can truly say “I was blind but now I see!” After all that, the abnormal MRI, and other numbness, weakness, and tingling issues I had (that apparently aren’t normal even for having 4 consecutive pregnancies!), we knew that an MS diagnosis was all but official.
Then, several days later, when the lumbar puncture results came back, the answer was complete. Although we knew unofficially I had multiple sclerosis, reading words like: abnormal, high, at least 25 lesions on the brain, enhancement/active demyelination, can really do a number on your heart. I was stuck. Unable to move forward.
As I waited for the puncture results, I thought knowing an answer would give some satisfaction, but it didn’t. Instead, I was putting my hope in something unable to meet my expectation. I felt trapped. Trapped by fear, uncertainty, the inability to “fix it”. Most of all though, trapped by the answer. Maybe it was the finality of it that sucked out the breath of hope I didn’t know I was holding in. I’m amazed at how often we do this though – put our hope in an answer.
Nevertheless, the Lord, in His mercy, rescued me from the darkness I was sitting in and brought me into the light of HIM. He reminded me that His mercies are truly new every morning. I journaled my way through fear and questions and clung to the truth of what I DO know and what I can ALWAYS be sure of, and that is this: getting God is more satisfying than any answer, or any gift for that matter.
If he allowed the answer, the prognosis, or the gift, to be more satisfying, then I wouldn’t seek him. It’s his grace that allows the answer, while potentially helpful, to produce little peace or confidence because then I would not seek, depend on, and trust him as the better and more satisfying answer.
WHO I get – Jesus – is far more satisfying that WHAT I get. An answer (or gift, or person, or circumstance) can neither produce, nor steal, anything from me.
ALL things are under HIS feet. The wind and the waves KNOW HIS name. The enemy may steal and seek to kill and destroy, but MY KING authors, and lavishes, and frees. And He is completely trustworthy, faithful, kind, loving, and beyond satisfying.
As I update these words today, about a year and a half into my multiple sclerosis journey, I’ve had 6 MRI’s, a few rounds of high powered steroids (I mean 1,000mg a day for a few days), new lesions on my brain and spine, started and stopped a two drugs that didn’t work, and started a new infusion drug that IS working wonderfully. I’ve lost my ability to run because the pounding on my feet sends shock waves through my body and eventually causes my left foot to drop and stop working. My vision is blurry when it’s hot and I can’t think clearly. My legs are spastic and stiff every morning. My body feels stress in a way thats strange and painful. And yet, I’m ignited to do new and hard things I’ve never done before, like climbing walls and hiking up mountains and learning to sew; reading more books, homeschooling my kids; and taking more risks. AND, I haven’t had any new lesions in over 6 months!!!
I can say with gut-wrenching honesty: MS can never take from me more than it can give me. The incredible Joni Earekson Tada wisely says,
“God permits what he hates to achieve what He loves.”
I cannot describe the tasting and see that God is good I have experienced and the ways the Lord has met me. I can say with the Psalmist, often through tears, “the lines have fallen for me in pleasant places; indeed I have a beautiful inheritance” (psalm 16).
So bring on the mystery, the questions, the unpredictability. Bring on the good days and bring on the bad days. Because if I could map it out myself, I would never in a million years do it this way. In my flesh I would never do it the way God does it. And I would never lead myself to the Lord. Thankfully, He is too good to let me do that.
I’ll close with two passages that have become my anthem,
Hebrews 2:8-9 “Now in putting everything in subjection to Him, he left nothing outside his control. At present, we do not yet see everything in subjection to him. BUT we SEE HIM … Jesus!”
Jeremiah 17:5-8 Thus says the Lord:
“Cursed is the man who trusts in man
and makes flesh his strength,[a]
whose heart turns away from the Lord.
He is like a shrub in the desert,
and shall not see any good come.
He shall dwell in the parched places of the wilderness,
in an uninhabited salt land.
“Blessed is the man who trusts in the Lord,
whose trust is the Lord.
He is like a tree planted by water,
that sends out its roots by the stream,
and does not fear when heat comes,
for its leaves remain green,
and is not anxious in the year of drought,
for it does not cease to bear fruit.”
May you be like a tree and not a shrub too. May you taste and see that He is good. May you trust in HIM more than any gift, circumstance, person, or answer.