Much of this writing is born between the hours of 2 and 6 am, in a fit of insomnia, tears, panic, or whatever the herx-du-jour brings in its overnight bag. The ideas come throughout the day, but the need to pour them out tends to come in the darkness, when I’m alone, scared, and desperately reaching for whatever kindling I can find to make a little light shine.
The husband is downstairs on the couch, for most of the year, because he lost an argument. The Big One. The Lyme War. He said, “I do,” and Lyme said, “You’re going to wish you hadn’t.” If he stays in the bedroom, there’s an 80% chance I’m going to wake him up with my tossing and turning, labored breathing, muscle spasms, reaching for water, or digging at a neuropathic itch. There’s a 5% chance that I will finally sleep well, but his own insomnia will send him away. The other 15% of the time we spend being so afraid of waking the other up that neither one of us is able to relax into sleep. And so the futon gets unfolded every night, and his empty half of the bed is occupied by a laptop for times like this when my brain and heart won’t stop electrocuting me and I need some distraction.
My husband and my illness came up recently in a conversation between family and some acquaintances.
They asked, sincerely, if he’d divorced me yet… and why not?
I asked myself the same question. Lyme produces all of the top reasons people get divorced. It’s an expensive disease. It changes your personality. It makes you argumentative. It creates inequality in income, employment, and household roles. It destroys intimacy. It wrecks your plans and goals. It creates unmet needs in both partners. It’s absolutely nothing either of you imagined having to hold for worse, in sickness, or for poorer.
It’s times like this when you learn what true love is, and much to your dismay, it’s the ugly stepsister to the fairytale you were expecting. When your butterflies turn out to be heart palpitations and panic attacks. When going out on a date means laughing at magazines in the doctor’s waiting room. When the most intimacy you get all spring is the full-body tick check after mowing the lawn.
And it hurts. The love is bittersweet, with the most agonizing bitter and the richest of golden sweet.
Lyme spouses need as much support as the patient. It takes superhuman strength to carry this burden. They are the only source of income. The only source of health insurance. The transportation. The advocate. Their goals, plans, and savings crumble at the feet of medical bills. Their hopes and dreams vanish into a void of uncertainty. Their life partner is taking and taking and taking beyond what they have to give. There are no dates. There is no sleep. And all their friends can do is ask "Why can't you come out with us?" or “When are you getting divorced?”
Lymies sorely need support too, but often overlook this issue for more pressing symptoms and treatment. It’s a stressor that hinders healing, but dealing with it means another doctor, another bill, another sob session as we recount the story for the 100th time. Counseling is often encouraged for both spouses, but with what money? With what time?
The guilt is overwhelming sometimes.
Even in being the taker, the love hurts me too. It’s true that when you love something you let it go. My husband is a talented man. If I were to disappear from the picture, he’d be above and beyond any five-year plan he ever could have imagined. Instead, he’s burning out, covering the student loan I racked up and never got well enough to pay off. Paying for out-of-network doctors, alternative practitioners, supplements out the wazoo, local organic health food, new clothes for my wasting body, special insoles for my pained feet, a graveyard of remedies that didn’t work. And what does he get in return? No social life. A sink perpetually full of dishes. A pile of dirty laundry. A mouse infestation. Gray hair. He deserves better than that.
The early days were bad. We were both new to the Lyme Universe and had no idea what to expect or how to deal with it. My brain was hijacked by inflammation and I was prone to spontaneous sobbing, screaming, and blaming him for marriage not looking anything like Joshua Harris said it would. He was confused and frustrated and told me I bore no resemblance to the woman he married. He was not wrong. I begged him to leave me. I hated myself. No use dragging him down with me.
Thankfully, treatment worked fast enough on my brain and coincided with a providentially timed offering of Matt Chandler’s marriage course. And the mercies are new every morning.
1 Corinthians 13 was read at our wedding: “Love is patient and kind; love does not envy or boast; it is not arrogant or rude. It does not insist on its own way; it is not irritable or resentful…” Love was not me. This was not my relationship. I did not deserve to receive that which I had no capacity to give.
Ah, but: “Love bears all things, believes all things, hopes all things, endures all things. Love never ends.”
Love bears this disease, with all its hurt and ugliness and frustration. Love believes that the greatest marriage is built on rocks and hard places, rather than on clouds. Love hopes for the day we can enjoy all that we dreamed of with new appreciation, and sucks every drop of sweetness from the bitter. Love endures the setbacks, the shortcomings, the failures, the crises, the pain, the tears.
Romanians toast a marriage by wishing you a "Casă de piatră" - a house of stone. That can only happen when the puffy little wedding tent blows away and you have to rebuild your marriage on a tough but rock-solid foundation.
Marriage is a metaphor for God’s love for us. Weak is the Christian who skips happily to church to sing and dance, with a hedge around him, sheltering from all but blessing. Stronger and faithful is the one refined with fire. Blessed am I for a love that will have and hold through my sin, my ugliness, my little faith, my humanity, and I don't have to wait to get to Heaven to experience it.
For I am convinced that neither spirochete nor parasite, nor encephalitis nor herx, neither death nor life, nor height nor depth, nor anything else in all creation, will be able to separate me from the love of God, and by His grace, the love of and for my husband.