A night post
I think this is my first night post. I just happen to find myself in a quiet, settled house, so before I get lost in a book, why not write? First, it looks like I have a couple of new followers–thank you and welcome! As I mentioned last week, I’ve been working on a piece regarding my daughter’s experience with Lyme, and I finished it up. With my daughter’s go ahead, I’m submitting it to More than Lyme. But really it’s not about getting it posted somewhere else, it’s about giving you all a glimpse of what’s going on at home. Have a good week
“When my daughter was born, she didn’t cry. She gazed into my eyes with ancient knowingness, and claimed me as her own. Nineteen years later, with illness weighing heavily on her back, she still gazes at her world with wisdom beyond her years.
Lyme Disease is an ugly, pernicious condition. Storm-like and at random, it attacks her joints, muscles, brain, bones, nerves, and organs. Sleep is difficult. Sometimes my daughter struggles to see, words on a page fuzz and recede, and those she manages to decode she is unable to comprehend. She is sensitive to light and sound, so her home base is her dark, cool room. We can’t congregate there as a family; we are simply too much.
Some days are good. She goes outside to receive the sun and its parasitic killing ability, or she bakes bread or makes incredible, green, power smoothies. She finishes a paper for school; she is working hard to complete the classes she left behind when things got too bad.
When diagnosis comes late, treatment takes longer. Our hope is that in six months, she will be well again to resume the life of adventure she is carefully planning out for herself. Until then, a strong team of health providers–an osteopath, a naturopath, and an acupuncturist–form a tight circle around her, treating not only the disease but also the symptoms.
An unfunny thing about Lyme is that once the parasites die, they stay around in the bloodstream, because a weakened immune system is unable to dispose of them. So the same symptoms the parasites generate when they are alive, they generate when they’re dead. There’s even a name for it. Herx Reaction. Something we never wanted to know about.
What is treatment? Support for her immune system, continual detoxification to get the bugs out, tons of rest, and antibiotics. What is our treatment? We read funny books to her when she can stand the sound of our voices. We eat family meals in the dark. I make day charts of her medication so she can remember what to take and when. We get her treats, like her new t-shirt that reads More than Lyme. (More than Lyme is one of her favorite blogs.) And we tell her over and over that she will get better, that some day she’ll look back at this time as a small, hazy bubble of discomfort. We believe for her, and carry her hope unceasingly and unflaggingly.
Most of the time my daughter’s attitude is amazing. She reflects on her situation, and looks for the good that is surfacing from all of her misery. She now has a better idea of what she wants to study in school, and has a list of ways and possibilities she can be of service while traveling the world.
Meanwhile, she has small adventures at home, the short walk to watch and film the rise of a blue moon, using her art skills to draft the perfect mandala. Tangible ways to announce that she is very much alive and her core is strong. When I kiss the top of her head and give her a soft, “you will get better!” we draw strength from each other. I give her comfort, and her ancient warrior heart gives me the courage to be the best advocate I can.
We are all tired—there’s no hiding that. But we’ve got a strong support system in family and friends, and a sweet little dog who knows just when to curl up beside us and rest his head on our laps. Scout spends the day with my daughter while we are at work or school, always there when she needs a cuddle. He is the ultimate Lyme support. Well actually, hope is the ultimate Lyme support. Like jam, we spread it thickly at our house. As my daughter balances the wait time of recovery with the groove of living, she knows one thing. We have her back.”