Breaking News: I Went for a Walk. It Was Glorious!

On my way home from the pharmacy this afternoon, I caught a glimpse of the soft clouds making circles around Sutro Tower, the red-and-white beacon that marks Mt. Sutro, my happy hiking place of so many foggy mornings before my body gave way to Lyme. Without thinking, I retraced my old route and eventually found myself parking in the same old spot on the wide, brick-paved lane that leads to the trailhead. And in my espadrilles, I followed the siren call of the forest.

Habit propelled me into the woods with an energetic stride and the determination to conquer the mountain, but not ten paces in, I had to stop and catch my breath. Ok, so I can’t climb the mountain yet, but somehow, today, my legs and my will carried me nearly a mile around the ivy-tufted basin and back. My little jute flats were really no match for the patches of mud and the undulating rocky path, but I kept breathlessly stepping on, pausing often with wonderment as if I were experiencing this place for the first time. The cool air on my skin, the mushroomy scent of the forest floor and the herbaceousness of eucalyptus; the twittering of the birds, a rustling in the underbrush, the quiet creaking of the too-tall trees stretching in the breeze. And then something strange happened. I felt joy. A lightness of heart that I’ve not felt in many months. Freedom. I’m alive.

My legs advised me turn back sooner than I did but I kept pressing on, and finally, as the dirt trail once again became that brick-paved lane I turned for a wistful last look. I scolded myself—you’ll be back.

I’m back home on my sofa now and my legs feel as stiff as those old eucalyptus trunks, and I know there will be no forest for me tomorrow. But I’m grateful for this day, and I know that, whatever it takes, I will tackle that mountain soon.

A Special Fundraiser for Rori

A few months back, I wrote to you all here about my new and dear friend Rori Albert. I met Rori at the West Clinic, and I was so moved and inspired by her strength and smile in the face of a battle against Lyme that is beyond what I can imagine. In the space of just a couple of years, Rori, a young women with a gorgeous young family, has lost her voice and the use of her legs, and, in her rather expensive quest for health, she’s lost her home as well. I posted a link to Rori’s GoFundMe page, and I was moved to tears by the number of you—my friends and family, new readers, and your friends and family—who made generous donations to further Rori’s care.

This past month, Rori received some wonderful news from Dr. Jason West: The West Clinic has gifted her nearly six weeks of additional treatment, no extra charge. Amazing, right?! Well yes, except that Rori’s resources are so depleted she doesn’t have the funds necessary for travel and yet another extended stay in Idaho.

But we can help.

That Which Doesn’t Kill Us Is Liable to Make Us Nuts

This is my brain on Lyme.

Mindfulness is the key to happiness no matter how sick (or broke, or isolated, or victimized) we are. At least, that’s how the story goes in the many books on Buddhism, neuroscience, and meditation Husband and I are reading/listening to pretty much around the clock these days in our absurdly self-conscious quest for peace of mind no matter that we’re waist deep in shit. But you know something? The mind can be a real bitch when it’s mindful that it’s waist deep in shit, especially when it’s mindful of its own mindlessness.

Are you still with me?

It may be because I’m still a poser of a meditator—after a full two months of practicing, I still have to rely on Headspace’s British Andy to talk me through my 15 minutes (clearly I am not enlightened)—but I can’t escape the irony of seeking contentment through being mindful of my hurting body, my jagged breathing, my yo-yo-ing emotions, and my sometimes disturbing thoughts.

Finding Headspace Amid the Mind-Trip That Is La Vie en Lyme

A typical Friday lunch. Can somebody give me a hand?

It’s been two months since I’ve written here, and, the truth is, I’ve been avoiding you. No, that’s not true. I’ve been avoiding me.

The thing is, when we returned from our two-week treatment at West Clinic, I felt desperate to return to normal life. I wanted not to think too much about Lyme disease; not to focus on the pain that, with few exceptions, hadn’t really abated much; not to obsess every minute of every day about the many bizarre twists in this new life with chronic illness. I just wanted to be. And so, I tried to set it aside. Go back to work. Think positive. Wait and see.

“You look so healthy!” our friends, clearly stunned, kept saying to Husband in the weeks following our return. And it was true: Suddenly my hubs had the look of a collegiate footballer post-practice—flushed, glowing, and totally amped. Treatment had agreed with him. Then, as the eyes turned toward me, the smiles faded and the expressions shifted from happy relief to guarded denial: “You don’t look that bad!”

This Is My New Friend Rori. Help a Lyme Sistah Out?

When you hang around an IV lounge long enough, you’re bound make new friends. Sick friends. I made friends with Rori Albert.

This is Rori.

I spotted Rori on our first day at the West Clinic in Pocatello, Idaho. Husband and I were cutting up about the sludge that was emerging from our pores and sticking between our toes in our first ion detox foot bath; she was in the hallway, looking exhausted in a profound way, waiting for someone from the office staff to help her to her next treatment.

Right away I pegged Rori as a Lyme patient—a copy of Ally Hilfiger’s Lyme memoir, Bite Me, which I had finished just a few days earlier, rested on the little seat of her walker. Yes, Rori gets around with a walker. And Rori can barely speak, her voice like an old car with a stalling motor. The muscles in her neck, her mouth, her tongue visibly labor to force out words that fight against her; when words finally do emerge, they come out in a bit of a garble. The process is painful to watch, and the result difficult to understand—a little like trying to translate the language of my three-year-old nephew, minus the charming effect.

The Not-So-Final Analysis: The Proof Is in the Blood at the End of Week Two

I don’t really know what I expected to hear as Husband and I sat down for our final live blood analysis and exit interview with Dr. West. I’ve done enough research to know that two weeks of treatment, however intensive, is rarely enough to obliterate Lyme disease.

And yet, after two weeks of what I can only call torture (no, I don’t care if this is being dramatic), one does hope for some kind of special send-off—a grade on my blood work, maybe…Much Improved! And maybe one of those Dum Dum suckers like I used to get post-vaccination at the pediatrician’s. Ok fine, I will settle for one out of two.

True Blood: Hyperbaric Ozone Therapy + Healthy Cell Injections

A few months back, the publicist of a luxury med-spa in San Francisco pitched me the hard sell on a “vampire facial.” It is no problem, she goaded me in a syrupy Eastern European accent. We just take zee blood, extract zee platelet-rich plasma, and inject it back into zee face. I imagined a Soviet Bond-flick villainess dressed in white vinyl knee boots pumping me full of poison. Nope. In hindsight, this would have been excellent practice for my treatment of Lyme disease—and my skin might’ve been primed for the many no-makeup days to come.

Day 9: Laser Love & Electro-Magnetic Magic

“Goddamn, you’re high maintenance,” said Husband to me, last night, in bed, as he pressed his QiPulse red laser pen into the sympathetic nerve plexuses of my pelvis. For going on 45 minutes, Jake had poked me with his pen while poring over a book filled with photographs of fully naked women, their most private parts covered with turquoise and neon pink sticky notes courtesy of Dr. West’s mother (hi from the Mormon Corridor!).

Day 6: The Scene in Which She Shakes Her Fist at the World and Then Hides Under the Covers

Today may have been my sixth of ten days of treatment at the West Clinic in Pocatello, Idaho, but it only took about three days for the staff at West to figure out that I’m a special case.

And I don’t mean that I have a special case of Lyme disease. Nope, I have a moderate case of Lyme (4 out of 10, Dr. J says) and, next to Jake, I am, as far as I can see, the second healthiest person to sit tethered to an IV here in the last six days. Rick, an elderly father who’s being treated for seizures induced by his many stroke medications, is in far more dire shape. And Rori, a woman about my age who’s lost her voice to Lyme and gets around with a walker, has it way worse than I do, and she’s even here alone. And yet, I’m the special case: the mental spaz who can’t seem to turn off the waterworks in the IV lounge until they finally move me to a private room, more for the sake of the other patients than for me, I presume; me, the nutcase who had a panic attack after neural therapy so now the hypnotherapist has to make special late-night and early-morning cell phone calls in a desperate attempt to get this particularly difficult patient through the necessary treatment.

See, I had imagined that days of IVs, cell therapy shots in my butt, and Procaine and B12 shots in my skull would eventually wear down my phobias of needles, of doctors, of cruel and unusual punishment strange medical therapies; I had imagined that I’d walk into week two with the nonchalance of an old pro—You’re busy, Misty, I’d say, I can do my own IV today. But nooo.

Week 1 Wrap-Up: Hypnotherapy + UVLrx (A Light Saber for Lyme Disease)

I’m lying down in the small room they call Jedi as Tasia, the phlebotomist, begins to set up my IV in the dark. She works methodically by the light of a single banker’s desk lamp with a green glass shade as I close my eyes and the hypnotic voice comes through my earphones:

“…As you allow your mind to wander…you imagine a path that takes you to that bee-you-tiful beach. And when you finally get to that won-der-ful sand, you slip off your shoes, feeling the warmth, and you walk over to that beach chair, one of those low-slung beach chairs, and there’s no one there. You sit down in that chair, and you lean back in that chair, and as your hands dangle in the soft warm sand, something peculiar, as you bury them in that sand and the warmth starts to fill you, the sound of the gulls, the smell of the sea, as the sun touches you gently, and you drift away…”

I don’t know how long it was before Tasia finished her work and quietly slipped out of Jedi, or how long I lay there in my cotton ikat sundress swirling my fingers in the Indian summer sand of Stinson Beach as “Dr. H” lulled me into a trance over the phone from his office three hours away in Boise.

“…when you’re finished, you can bring with you all that ease and comfort, as you stand up out of that chair, and wistfully look at the sea and walk back across that beach …and then you can rouse up with a drifting upward now, upward to the surface and slowly allowing the eyes to open as wakeful awareness returns to you with a comfortable continuation of that protective feeling, that secure relaxation, and ability to quiet a hand, an arm, any place at all, anywhere at all, anything at all…while you drift in your mind to enjoy that comfortable drifting upward, where the eyes begin to open and awareness returns quite completely…. Now.”

I rubbed my eyes, stretched my neck to one side and then the other, and then my legs, pointing my toes to feel the rousing in my feet and calves as I woke up from my nap on the beach. I could feel the sun on me, especially warm on the skin of my right arm, and as my eyes came into focus, I saw that it was glowing. I stared at the point of red light in the crook of my elbow—my antecubital fossa as my future-doctor husband calls it (“you are so un-medical,” he said to me later)—and I traced my eyes down the long needle and up a tube to a machine with a digital monitor labeled UVLrx. (UVLrx is a Santa Barbara–based company bringing intravenous light therapy to the forefront for a range of illnesses, including HIV, autoimmune disorders, Epstein-Barr, and Lyme. Any woman who gets regular facials knows the benefits of UV light for killing bacteria and calming inflammation.)

“What do you notice?” Dr. H asks.

“There is a glowing needle in my arm,” I say.

“And?”

“And I guess that’s okay.”

“Isn’t that wonderful.”