“We just don’t know.” That’s not the words you want to hear coming from your care team (who operates under the direction of one of the world’s most respected neurologists). The words hit hard. When my husband and I make our regular trip to his doctors at UT Southwestern, we always go hoping for answers, looking for a solution, praying for an encouraging prognosis.
We shared with them how LeRoy’s early symptoms of this disease have started returning, how the same sickness and rashes are showing up again. We asked if they could tell us if the disease is ramping up again, if he’s having a recurrence of Neurosarcoidosis.
But, the response to our questions kept playing the same refrain, “We just don’t know.” That’s what they tell us. As we sit quietly in a high-rise office in downtown Dallas, surrounded by a sprawling medical campus, filled with the highest tech medical resources, the most keen minds in their fields, the most extensive research and respected expertise. But they just don’t know.
They tell us, this is what they do know:
My husband’s neurological disease is extremely rare. “Impressive” and extensive are the words they used to describe his spinal cord lesions two years ago. They shook their heads in surprise that his paralysis was not further reaching than it was.
Currently, there is no FDA approved treatment for his condition, it’s all experimental. So that leaves us with trying immune suppressing drugs that are prescribed for organ transplant patients. It requires that we do a lot of research on our own, and causes us to struggle with the question of whether to use any drugs at all as we read the risks of taking these drugs.
They tell us that LeRoy will always endure a high level of pain due to the extensive nerve damage to his spinal cord. He battles the pain by trying to work at physical therapy—although that’s extremely difficult, he keeps plugging away at it. He could opt to stay doped up with the many pain killers they’ve prescribed over these past two years, but he chooses not to go that route.
They tell us that the disease could attack his spinal cord again or move to his vital organs. This is the daily unknown that we live with. They told us that “We don’t know if something could be happening right now at the microscopic level, that we’ve not yet detected by MRI, we just don’t know.”
These are the unpleasant facts they shared with us on our last trip to Dallas, two weeks ago, but there was some really good news in the middle of all the “We just don’t know” answers.
There are no new spinal cord lesions. For that, we are praising God. We were preparing to hear that they had returned or increased, but for now, the lesions have diminished—and no new ones have appeared. And we are so grateful. Truly, truly grateful for that merciful news.
They just don’t know, they just can’t provide the answers or provide insight into what we can expect. But, that shouldn’t surprise us. Even with all their knowledge and medical expertise—who can say what tomorrow holds? Who can tell what is happening within our bodies at the teeniest microscopic level?
Only One knows those answers.
He could never say “I just don’t know.” In fact, that would be impossible for Him to say.
He knows. He sees. And He cares. And He will provide the grace needed for each step of the journey. I trust Him. How can we not? He’s proven His love at the cross, and He proves it thousands of times over—daily—through His abundant grace.
For now, the plan is to return there in October, when they will continue doing more testing. In the meantime, we wait. We seek to know what God would have us do this day, how we can glorify Him by waiting well. And we trust that this is what He deems best for this day.
Because we know that He knows.
O Lord, you have searched me and known me! You know when I sit down and when I rise up;
you discern my thoughts from afar.
You search out my path and my lying down and are acquainted with all my ways. Even before a word is on my tongue, behold, O Lord, you know it altogether.
You hem me in, behind and before, and lay your hand upon me. Such knowledge is too wonderful for me; it is high; I cannot attain it.
For you formed my inward parts; you knitted me together in my mother’s womb. I praise you, for I am fearfully and wonderfully made.
Wonderful are your works; my soul
knows it very well. My frame was not hidden from
when I was being made in secret, intricately woven in the depths of the earth.
Your eyes saw my unformed substance; in your book were written, every one of them, the days that were formed for me, when as yet there was none of them (Psalm 139:1–6, 13–16).