A Caregiver's Hope for Lyme

December 10 years ago, 1 am:  I woke up and Dave was not in bed.  I was used to Dave’s strange hours, but the house seemed eerily quiet.

1:30:  I went to the bathroom, the house was dark.  I looked out the window, no car.  Dave was gone.  I woke every hour after that, still no Dave.

8:00:  Got up with the kids, still no sign of him.  “Where’s Daddy?”  my almost five-year-old son Zach wanted to know.  “He’s out, he’ll be back later.”  What else could I say?

Noon came and went with still no sign of him.  Why hadn’t I continued hiding his keys?  Where could he be?  Do I call someone for help?

2:00 pm:  Dave called, he was in the next city about an hour away, and would be home when he could, but wasn’t feeling good.  He had gone to Menards, sat in the parking lot until the store opened at 7, then went to Border’s Books to read, although he could never read more than a paragraph.  The words would jumble and he read the same paragraph over and over.  Suddenly he couldn’t remember where he was, what he was doing there, why he had come—or how to get home.  He sat in our car until he remembered, and then called me.  He stopped on the way home to sleep a bit, and then made the rest of the drive.

4:30 pm, Dave came home, oblivious of the chaos in my mind, and went to bed.

Thankfully we haven't had an experience like this since the early days of Dave's illness.  Dave had to go on medical leave from his position as the children’s pastor at our church in June of 2000, but was undiagnosed at that point.  In October of that year we learned he had late stage Lyme disease.

We traced his symptoms back 15 years to his college days when he began having trouble thinking of words and writing.  He had two extended flu-like illnesses, characteristic of early Lyme disease, but no one suspected what was wrong.

Over the years he had joint pain, dizziness, headaches, eye twitching, and problems stuttering.  Eventually he developed chemical sensitivities and food allergies, then sensitivity to light, sound, motion, and smells.  For four months our church brought us meals because the smell of cooking made him pass out.  Then we learned he had Lyme, and began long-term antibiotic treatment.

Dave did 16 weeks of IV Rocephin, but discontinued because his insurance wouldn’t pay for it.  Then he started a variety of oral antibiotics along with supplements to build his immune system back up.

He wasn’t able to go to church, or to engage in a meaningful conversation, and he slept about 16 hours a day.  Our kids were 1.5 and 3.5 when he went on leave, and I felt like a single mom—and a widow with a husband.  I couldn’t talk to him, couldn’t discuss decisions with him, and yet there he was real, but not all there.  Where was he?  What was happening in his mind?  God, will he ever get better?

I remember praying, God, heal him, or take him home to you—but don’t let him continue on like this, living but not able to live.  I prayed that way for months until I finally demanded, God, what are your intentions towards Dave?

And God replied, Merry, what are your intentions towards Dave?  What will you do if nothing changes?

I knew my intention was to love him, to stand by him, to care for him.  How could I make it through this ordeal?  I went back to the basics of my faith—God is sovereign, God is good, God is loving. These truths didn’t seem to make sense in our circumstances, and I had to choose—who will I believe?  Will I believe what the world and my circumstances reveal to me, or will I believe God?  I chose God, and struggled to hang on to my convictions.

The first Christmas came and went, and then the second, with little improvement.  I was able to cook in the house again, but that was small consolation for me.  Then in September of the second year I saw a window into Dave’s soul.  For one glorious week he was able to read, to talk, to discuss things again.  I had seen brief windows before, windows of an hour or so where he would ask what was happening to him, how long had he been sick—did he still have a job?  Then he would slip back again, occasionally grabbing his briefcase and asking, “Do I have a meeting tonight?”  No, my dear, no.

I let my hopes grow because a week was so long—but slowly he slipped back into Lyme-land again, and again was unable to communicate.  The pain he felt seemed horrendous, and I felt helpless to know how to comfort him.  He used to be comforted by my touches, but since his medical leave they seemed to increase his pain.

I prayed, “Lord, protect our marriage.  Don’t let my heart wander from him.  Let him still love me if he comes out of this.” Amazingly I began to love Dave more.  Truly, and deeply, love not dependent on what he did for me, but because God considered him worthy of my love.

In January of the third year we again switched antibiotics, deciding the last down-turn was due to antibiotic failure.  His painful “herx” reaction lasted a month this time, but for once had a definite ending.  Always before I could never tell the difference from one herx to the next—they all seemed to run together with no discernable pattern.  But this time it ended, and the Dave I’d had for that week in September was back again.

We seemed to be moving into a new phase and getting to know each other again.  He could read for about 20 minutes at a time, and when I saw his passion for reading God’s word again, such a precious gift that had been taken away—my heart rejoiced.

For several months, these improvements continued.  We believed we were heading towards a remission.  He still had a lot of pain, required about twelve hours sleep each night, and continued to be very sound and motion sensitive.  But he was able to come to church again, and taught Adult Sunday School for about nine months.  He sometimes couldn't make it through both Sunday School and church as it was too exhausting, but to be teaching again, which is his passion, gave him a new excitement about life.

Slowly that Fall, though, the improvements melted away again, and by April of the fourth year, the improvements were all but gone again.  Over the next 2 years I slipped into a deep depression.  To have Dave and lose him again was surprisingly more painful than the first time I lost him and it wasn't until the spring and summer of the seventh year, that I came out of that again, found my ability once again to hope in God rather than in cures, to trust God again, to again remember that circumstances don't define God's love for us.

I don’t know what the future holds for us, but I do know that God can be glorified even in something as tragic and life-changing as Lyme disease.  There have been other windows, other glimpses...but the roller coaster continues.  Somewhere in the middle of all of this I quit demanding that God do what I wanted (although I continue to pray for Dave’s healing), and I began to submit myself to God and ask, “Lord, change me.  Make me willing—and able—to bear up under this strain, and to walk with you.  Be glorified in my life and in our family—and in Dave.”  God has faithfully answered that prayer and drawn me nearer to him.  He has softened my heart and made me willing to follow Him, no matter what happens in our lives.

I felt I could thank God for the blessing of knowing him more deeply through Lyme—but not for the Lyme itself because that hurt Dave so.  But one day Dave told me that he thanks God for the Lyme—not because of what was lost or the pain it’s involved—but because he is changing too.  If there was no God, Lyme would just be an awful tragedy.  But God can work for our good even in the midst of a tragedy, bringing something meaningful out of an otherwise meaningless and destructive illness.  We can look at the almost twelve years and maybe more lost to Lyme—or we can put our hope in a God who can bring good out of nothing as He created the world out of nothing.

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For more information about Lyme Disease, check out the links on my Lyme-Illness-Disability Resource page, or email me (see the bottom of the About Us page).

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