What do you wear to witness the signing of a state bill by the Governor? As I picked over my closet I thought about how I arrived at this day. I thought about my long fight over the last ten plus years. I thought about it all; the sleepless nights, the progressive symptoms that waxed and wained, the pain, the tears, the heart failure, the surgeries, my poor boys. I thought about the positive impact Washington State Lyme Disease Bill 5448 could have; where this will hopefully all lead in the future: awareness, studies, physician education, treatment for all, insurance coverage, and ultimately a cure. After much deliberation…(types of appropriate vs inappropriate dress), grandmothers brooch…
I settled on a light khaki pencil skirt, blush-colored button-up collared silk shirt with small black polkadots, layered under a black three-button blazer, and over-the-knee black suede flat boots. Hair pulled back. A seal of approval from my husband. My thoughts continued as I applied my make up over the skin of a much older woman than when this all began. Each stroke and application noticing the subtle signs of inevitable aging set in. I was only 25-years-old when my symptoms became undeniably apparent.
I had become accustomed to the ritual of hiding my illness behind a cloak of smoke and mirrors. Today was no different, as I was feeling the exhaustion, weakness, and pain all too familiar, while preparing for the long journey south to Olympia to witness the historic event of Governor Jay Inslee signing “Our” Lyme Bill into law.
Grit adorned in sheep’s clothing, we made the trek south thru Friday afternoon’s rush hour traffic. Clutching my grandmother’s brooch, rubbing my thumb over the patina filigreed metal. Nervous anticipation pulsing evermore so with each mile traveled.
The capital building was buzzing with excitement. Walking the marble-‐lined halls, I followed the echoing roars of lawmakers and advocates to the holding area just outside the Governor’s office. Scanning the crowd for familiar faces. A Page was posting the updated docket of bills to be signed for the afternoon session. Lyme Bill 5448, page four. Overwhelmed by the unfamiliar surroundings and procedures of the day, I was more than elated to be met by my fellow lyme warriors. We gathered together making small talk to distract ourselves from it all. We captured the moment in a group photograph.
Thankful once again to have my adoring supportive husband by my side, he offered reassuring glances of comfort, as we waited for our bill number to be called. Energized participants made their way in one bill at a time, returning upon exit with smiles of relief and accomplishment.
“Bill 5448!” It was our turn! We filed in the double doors of the staging area of the Governor’s office. My husband offered up his arms to discard our rain-swept spring-day jackets, noticing we were wearing on our last energy stores. The zeal of ratification in our midst, carried us thru, a primal survival of hope our lives depended on.
Before we knew it, we were ushered in beyond the next solid core wood door into a grand conference-type board room filled with a myriad of political types, photographers, and staffers, including Governor Jay Inslee, whom sat at the head of a long table in a large ethereal Regal chair, like a tall slender Santa Clause at the last supper.
The well-‐oiled machine, strategically placed us three-‐fold to the left and right of the Governor’s throne. He sat upright pen in hand and noted special attention to the youngest in our group to his left, ten-‐year-‐old Sol, a Lyme fighter, son of our Seattle Support Group Leader, Faith. As Governor Inslee read the specifics of Lyme Bill 5448, I listened intently to each word and the candor of his voice. I couldn’t help but think this was the first time he had read it.
The quiet presence of our young soldier made the rest of the room fade away as Governor Inslee invited him to assist in the signing. Pressing his small finger on the corner of the document to hold it steady. Standing to his immediate right, I peered over the Governor’s shoulder and watched him pen his mark into legislation thru the eyes of a child burdened far beyond his years.
Making our way back out as we had witnessed those before us, minutes before, with smiles of accomplishment, yet left with the meandering questions of, “what now?”… “Where will this lead?”… Only time will tell. There is plenty more work to be done but clearly we were off to a great start in advocating the lifesaving change so many are waiting for.
Walking back to the car amidst the rain to find my grandmother’s brooch in the cup holder, I clasped it in my hand with gratitude.
Written by Hannah Elise Miller Kato for Invisibly Lyme Montana’s Guest Series from Washington’s Chronic Lyme Bill Supporters