We learned a lot about life when we were small—playing with building blocks.
If we think about it, during our whole lifetime, we’re building with blocks. “Blocks” of memory—it’s how we learn. One memory stacks on another—connects with another. Each fact, event, recollection. They create layers of reality, pulling the past into the present, to build a skill, a proficiency, a knowledge, a relationship … a life.
But then, for some people, a rightly-named dis-order (as in my husband’s case, FTD or frontotemporal degeneration) suddenly seems to change the strict rules of nature. The “blocks” of memory abruptly refuse to stack. Accumulated chunks of information tumble about in the brain. Nothing sticks and nothing stacks. It’s like playing with jigsaw puzzle pieces that suddenly have lost their tabs and blanks. Like juggling balls, but the balls ignore the immutable laws of gravity and unexpectedly develop a mind of their own, flying off in every direction.
(I have written a bit about this before. Forgive me for telling too much of our personal story—for wearing my heart on my sleeve. But, as I write, I cannot help wondering if there isn’t someone else out there, on a similarly painful journey. Someone who, like me, is watching the one they love disappear before their eyes? Someone, suffering in secret, that needs to know they are not alone?)
The treasure of MEMORY—you don’t value it until it’s gone. We say that our lives are made up of linked memories, but what do we have when suddenly nothing connects? When all the memories that give that life meaning and value … disconnect or disappear altogether? Physical LIFE goes ON—the heart beats, the blood flows, the muscles work, and the brain—the command center—is still a whirring blur of activity. The gears continue to spin, but no longer connect, and hence, all that energy produces nothing.
This is my view. All my husband’s lifetime of developed knowledge, know-how, wit, and wisdom … are like piles of blocks that no longer stack. Now I am discovering that not only was it HE that depended on those blocks to fit together, but I DID, too. I needed his skills—I depended on his expertise. I loved to hear his insight, his sermons, his stories. I loved to hear him sing. I needed his brain to work properly so that my life—our connected lives—made sense. Now it’s like attempting to ride a bicycle with only one wheel turning. Nothing works the same as it once did.
I should feel panic, and YET, I don’t. It’s so impossibly dark, and YET, I have light. This tragic, cruel disease should be dragging us both down the swirling vortex of negativity and despair, but SOMEHOW, it’s not.
How is that? I read the testimonies of other spouses who are dealing with the effects of FTD. It’s indeed a unimaginably cruel, dehumanizing disease. Sometimes, it sort of feels like God has set us on a track that leads smack into a tunnel full of thick darkness—nightmares that come true right before our open eyes.
It makes me recall the story in C.S. Lewis’ “Voyage of the Dawn Treader.” Lucy and Edmond approached the Dark Island where “dreams come true,” and they realized to their horror that it wasn’t dreams coming true, but nightmares. By then, though, they were trapped and unable to turn the boat around.
That’s right where I am. But, yet—somehow—though I don’t see it yet, I KNOW there’s a gleam of LIGHT ahead! There WILL be! But, it’s so dark … how can I be SURE I’ll find it?
Because THIS I KNOW: the course that God has placed us on will lead us TO the LIGHT. I KNOW it. If HE brought us TO the fog, He’ll lead us THROUGH it. Trust draws us, through the surrounding darkness, to Him who IS the LIGHT. It’s all there … in His WORD. I hear it in the ear of my heart—like Someone standing behind me whispering, “Yes. This is the way.” Or like the albatross in the story of the Dawn Treader that suddenly appears out of the darkness, circling Lucy’s head and whispering “Courage, dear heart.”
“He brought them out of darkness and the shadow of death, And broke their chains in pieces.” (Psalm 107:14 NKJV)
In the story, once the Dawn Treader broke free from the Dark Island’s hold on them, Lucy discovered her fears were unfounded—that there was nothing to be afraid of and never had been.
Well, THAT’s where Lucy and I differ—in MY story, my fear is real. This disease is real. The nightmare comes true a bit more every day, and its effects are horrifically REAL. But YET, God’s WORD remains TRUE! I hear Job say, “Though He slay me, (though the life I knew is no more) yet will I trust in Him! … I KNOW that my Redeemer lives!”
The door that leads to everlasting LIGHT is always dark on our side. Just because I am sightless in the dark, that does not mean that GOD is. He made the darkness. (Isaiah 45:7) He can see in the dark just as comfortably as in the light. “Yea, the darkness hideth not from thee; but the night shineth as the day: the darkness and the light are both alike to thee.” (Psalm 139:12 KJV)
“The Lord himself goes before you and will be with you; he will never leave you nor forsake you. Do not be afraid; do not be discouraged.” (Deuteronomy 31:8)
The LORD says, “I am with you and will watch over you wherever you go, and I will bring you back to this land. I will not leave you until I have done what I have promised you.” (Genesis 28:15)
Again, THIS I KNOW: though the future is shrouded in mystery, I CAN go forward because I KNOW Jesus—He’s ahead of me. I may not see the way ahead, “but he knoweth the way that I take: when he hath tried me, I shall come forth as gold.” (Job 23:10 KJV) He is the Light—He knows my way—He knows where I am.
For the record, I do believe in healing, that God is a healer. The ONLY healer. I have prayed earnestly and asked God to reverse the damage this disease has done. I KNOW that He can.
BUT, IF HE DOESN’T, I’m determined to trust God anyway. THAT, to me, is living by FAITH. I trust HIM to steer our ship however He wills. In fact, I’m learning to LIVE in trust, even when I don’t know what to expect—to trust God more and panic less. The diagnosis doesn’t drain my devotion—the tragedy of the disease doesn’t tarnish my trust. I have HOPE, because I KNOW His WORD—and in it, between the lines, I hear His Voice saying, “COURAGE, dear heart.”
May my response to His Voice always be as Deborah sang: “March on, my soul; be strong!” (Judges 5:21 NIV)
(If you are reading this and going through a similar situation—watching a spouse battle neurological disease—please reach out to me. Again, you are NOT alone. We, who are grieving the loss of a loved one while they’re still alive, can support one another in this difficult, painful, lonely journey. You can write to me via IM or email: barbarajhilderbrand@gmail.com.)
