My husband Dave and I moved here 11 years ago. Dave was the children’s pastor at our church for 2 years before he had to go on medical leave. At the time he left, he had a myriad of symptoms but no diagnosis. A few months later we finally learned that Dave has Chronic Lyme Disease, and that he probably went undiagnosed for 15 years. That is how far back we can trace his symptoms.
Lyme Disease, when it is treated right away, is usually curable. But when left untreated or when it’s undertreated, it can wreak havoc on any, and sometimes nearly every organ and system in the body. Dave has had incredible pain in every joint in his body, and horrendous headaches. The neurological problems are the most disabling.
Near the end of his time at church, he would have conversations with people but couldn’t remember what they talked about. He would keep lists of what to do and lose his lists. After he left and the illness progressed, he would get lost in familiar places—one time he got lost between our house and the Subway restaurant which is 3 blocks away.
He will sometimes feel good enough to go get a paper or go to a store, and will see someone there. They look familiar but he can’t always remember a name and sometimes doesn’t remember if he’s supposed to know them. To him this is so discouraging. His job was to love people, his passion was to love people, and Lyme has stripped away his ability to do that.
Sometimes he will try to walk and his leg won’t move, or he’ll have tremors in his arms and legs. Other days he can walk in a store and even pick up groceries. Some days he can read, and other days the words dance around on the page and don’t make sense. There are times when he’ll forget he’s on medical leave and ask me if he has a meeting to go to. He lives forever with the feeling that he’s forgetting to do something, because the Lyme affects how the neurons in the brain communicate with each other. Some days he will think and speak fairly clearly, and others he will stutter and his speech will be slow. He’s very sensitive to sound, smell, motion, and light. We keep the shades drawn most of the time and use no overhead lights.
I remember one day Dave was sleeping and our daughter Anna, who was 2.5 at the time, looked at me as she reached for the light switch, and I told her she could turn the light on. It struck me then that we live much of our lives in semi-darkness.
The kids and I typically have to change clothes and bathe after church and other outings because the smell of perfume makes Dave pass out.
You never know what to expect with Lyme. I think that is one of the hardest parts of dealing with the illness; every day is different and you can’t plan on anything. I’ve seen Dave improve and slip back so many times that I know judging his symptoms does not give us solid ground to rely on. Sometimes he’ll ask, “Why is my body doing this?” and the answer of Lyme seems empty and hollow.
I cannot even begin to explain what it has been like to lose my soul mate. The intimacy we once had is gone as he is not able to sustain the same level of conversation, the memories, or the depth we once enjoyed with one another. We get glimpses—and oh, I love the glimpses! We share when we can, but then the moment melts away. A simple conversation is exhausting to him and often will end with him needing to lie down.
He has made some improvements since beginning treatment. He has been able to go to our small group, and last fall he was able to teach for a time. This winter he was struggling to read again. So we take the good with the bad on this roller-coaster of life we live!
Our children are 10 and 12 now. They recognize his symptoms, and encourage him to rest or take his medicine. One minute he is the father, taking care of them—the next they are trying to take care of him.
I remember the first year Dave was diagnosed, and we felt so hopeless. Years of searching led to answers that weren’t really answers at all. And I often prayed, “God, heal him, bring him back to me—or take him home to be with You, but don’t leave him this way.” I prayed that for months, until I felt like I was banging my head on the brick wall of God’s silence.
Exasperated, I remember going to God and saying, “You have to do something!” But there was no answer. And then, when I realized that God wasn’t taking either of the alternatives I had offered Him (go ahead, laugh!), I asked, “God, what are your intentions towards Dave?”
And I heard God’s answer, clearly, almost audibly, “Merry, what are your intentions? What will you do if nothing changes?”
My intention was then, and remains today, to be faithful to my husband and my God. The grace of God brought me into this place of faith.
What are your intentions?
Next time, Part 3: Can I still be your God?
Grace in Our Time of Need, other posts:
~Part 1: God's Joy
~Part 2: God's Silence
~Part 3: Can I Still Be Your God?
~Part 4: Lies and Truth
~Part 5: God's Protection
~Part 6: God Hears
See also Stories of Hope