A Tuesday in New York City, 2013:
It's 7pm. I'm stuck at the office. I'm an attorney, stuck-at-the-office comes standard. I mount my escape and duck out to the elevators, cell phone in hand texting my bartender to set up the girl I'm meeting with a glass of champagne when she gets there ahead of me - I'm running easily-a-drink late. This is no ordinary girl. This is my middle school crush who I haven't seen in 15 years. A serendipitous conversation brought her name to the forefront, and on the heels of a LinkedIn connection we're meeting up to catch up. In middle school she towered over me (her at 5'4" no less - and I wonder how short could I have been?). Soon enough I would be towering over her at the bar, drinks in hand, having a great old New York night out.. And this single night has changed my life completely, from that glass of champagne to the very second I sit here typing this.
Legs for days this one. I fly into the bar, and instantly the introduction hug evidences her current height is the same as her former: 5'4" and in nude pumps, all legs beneath a little black dress, model good looks, sharp as a tack, and bubbling more than the champagne and just as cool. We hit it off. Literally an explosion, chemical, nuclear - I don't know what we talked about and neither does she but non-stop back-and-forth, tons of laughs, tons of drinks, dinner, dancing, walking the streets of NYC until the night climaxed with a hotel finish, sheets, shoes, and clothes everywhere- easily the best night of our lives. It was a Tuesday.
Two days later we're headed to the beach house on Cape Cod for the weekend. With about 5 hours of chemistry-interrupted sleep each night and beach & adventure packed days we rode the high of our connection, one that felt like it had been in place for years already. These days were numbered and short-lived. We had about 3 months of the greatest time of both our lives. We even moved to California and drove across the country together. Shortly after we put our feet down in Silicon Valley, the bugs came back. And with a vengeance. It was subtle at first, then hit like a hammer. Our life changed, our every single day changed. Lyme altered our life with such severity and impunity that we have been living in an almost soldier-like, wounded war state against it ever since, with every ounce of our effort, energy, and resources. Our connection to one another has been the backbone of our resilience, and probably the greatest test we have or will ever know.
A Tuesday in New York City, 2016:
It's "shots day." Shots days suck. This isn't Fireball we're talking about, it's Bicillin Injections, two, in both hips, injected via syringe into the musco-skeletal structure to diffuse into Laura's body gradually beneath the skin. The Bicillin is mixed first with Litocaine to mitigate the burning of the antibiotic as it's forced under the skin where foreign substances shouldn't be. This is done at the Lyme Specialist's office, by a nurse with Lyme, who requires Modafinil (the military special forces pill that keeps soldiers awake for days on end and the replacement for methamphetaimines they used to use - speed). The office is always full of long faces, thin bodies, slow walkers.. Lyme patients. The chronic nature of the illness is it's most nasty feature. The years it takes to cure or merely manage. The time. The cost. This office has a 9 month waiting list for new patients. The doctor is a renegade genius of the medical profession who answers to the patients first and then the medical establishment. He is a doctor who cares. Finally.
The walk to the office from the apartment is only about a mile. But at Lyme pace, on crowded & fast streets and sidewalks, ducking the business people, eyes-upward tourists, and crazies, the journey is straight out of the Odyssey with peril at every intersection. I go with her. It's a must. She needs a body guard and often a tow for most of the walk. The walk back after the shots is obviously worse. Because it's midtown a cab would only kill more time. Because it's midtown this Doc is not cheap.
Immediately after shots, Laura has to use a heating pad, laying on the couch, to help diffuse the Bicillin through her tissues under her skin.. the next day she has to ice the same areas. Lumps form. And they hurt. These injections are part of a pulsing antibiotic protocol and she has to take 3 oral antibiotics in conjunction with the weekly injections. She's taken Rifampin, Mepron, Zithromax, and the nobel-prize winning anti-malarial Coartem, among others. Shots days suck. And there's no glass of wine at the end of it. She hasn't had a drink since October. Not one. I can't say the same myself, but I've certainly cut back as I'm in the trenches with her every night and no longer out on the town. Fighting this illness requires a ton of support, 24 hours a day, 7 days a week.
We are Food Network experts - we have more couch time than we ever wanted or imagined. Especially for two athletic and adventurous people. Our friends have mostly moved on since we haven't been "around" for what is now a period of years. It is a quiet fight, long term and without glamour. There are so few answers. There is some much misunderstanding, mystery, and mis-diagnosis. There is a perpetual feeling of being lost. But we are starting to see light at the end of the tunnel. It has been a rough journey, but we have each other. We are a team. And amidst the anger, pain, illness, we have our laughs, our love, our best-possible time. This is not a sob story. This is a love story. And as we battle on we hope it's of some use to anyone else out there in our shoes, in this fight.
Yours in the fight against Lyme,
Matt