© 2007 Dave and Merry Marinello, all rights reserved.
Welcome! Thanks for visiting our little "harbor" amid life's storms. We hope you
will find rest and encouragement in your struggles, big or small. Here you can:
will find rest and encouragement in your struggles, big or small. Here you can:
A Caregiver's Hope for Lyme
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Hope is My Anchor
Strength for your soul amid life's storms
Strength for your soul amid life's storms
A Caregiver's Hope for Lyme
By Merry Marinello © 2003
December 2001, 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 big 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.
Although that was the longest time Dave was missing, it was not the only time he got
lost or confused while he was out. 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 & 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 2002 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 2003 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 2004,
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 I am only now, in the spring and summer of 2007, coming out
of that again, finding 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. 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 just the other 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 seven 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.
For more information about Lyme Disease, check out the links on my Resource page,
or email me. Also read some of Dave's comments in Dave's Perspective
About the Author
By Merry Marinello © 2003
December 2001, 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 big 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.
Although that was the longest time Dave was missing, it was not the only time he got
lost or confused while he was out. 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 & 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 2002 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 2003 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 2004,
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 I am only now, in the spring and summer of 2007, coming out
of that again, finding 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. 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 just the other 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 seven 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.
For more information about Lyme Disease, check out the links on my Resource page,
or email me. Also read some of Dave's comments in Dave's Perspective
About the Author