Photo from Hannah Elise Miller Kato

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