LETTER TO THE GOVERNOR OF NEW YORK

Letter to the Governor of New York

I never thought that part of my journey in recovering from Lyme would include writing a letter to the Governor of New York.  I typically leave protesting injustices to the other Berkeley Law alums. 

But, day after day, I found myself complaining about the same things... How painful the process was to get diagnosed, how impossible it was to find a doctor, how expensive the treatments are, and how clueless the world is to the severity of Lyme Disease. 

I was growing increasingly angry and helpless.  Then one day I ran across a news article about a piece of New York legislation on Lyme.   It mentioned that this legislation had passed both houses and was currently in front of Governor Cuomo. 

Ultimately, Governor Cuomo would decide whether or not this legislation would become law.  Just one signature could change the legal landscape of Lyme, or at least be a step in the right direction.  But, politics never interested me.  I never had much faith in the process. 

I was scared to put in the time or energy, just to find out that I never even had a chance to influence the outcome in the first place.  I decided to reach out to one of my best friends from law school.  He had made a career in politics before turning to law and I knew he would tell me honestly if writing a letter was futile.  I prepared myself for disappointment, I readied myself to hear that my letter would likely be tossed into the nearest trash. 

Instead, my friend explained that few people actually take the time to write to government officials, so one letter is often considered the voice of many more--he encouraged me to write the letter.  In fact, he was so insistent that I write it that when I would drag my feet in drafting it, he would email and text me to get on my case to just finish it. 

Then one day he called my office (which he never does) to tell me that he realized he knew a colleague who worked at the Governor's office.  He urged me to hurry up and finish my letter so that he could pass it along--he had been told that the Governor would be making a decision that month. 

His colleague didn't promise anything, just that he would read my letter.  But, that was all I needed to hear: I had an opportunity.  A small window of opportunity to matter.

I knew it was now or never--I had to write this letter, if only to know that I wasn't one to just complain without taking action.  I did my best to try and encompass the myriad of issues surrounding Lyme into a succinct, one page letter (which involved adjusting the margins and font size quite a bit!).  I also included a list of all of my symptoms, medications and supplements, hoping that the Governor's office would be able to "see" what it was like to have Lyme. 

Even still, I didn't hold my breath that my letter would actually get read, much less that the bill would get signed.   Weeks passed and I didn't hear anything else about the legislation or my letter.  I had almost forgotten about it when I received an email that the Governor had made his decision. 

To my utter surprise, Cuomo signed the Lyme legislation!  I instantly sent my friend a text message relaying the good news, but he already knew.  In fact, he told me that he had spoken to his colleague at the Governor's office about it. 

His colleague mentioned that my letter and the lists I sent helped humanize the issue--something that doesn't always happen.  I have no idea if that is actually true or not, but it made me feel as though my voice had mattered for once.  That someone had listened. 

In fact, it made me cry.  I cried because I am blessed to have the type of friends who do these things for me, who help me get my letters read.  I cried because the Governor signed the bill.  I cried because maybe my letter had mattered, even if only in some small way.  I cried because I hate Lyme disease for all the things it takes away from you.  What often seems like everything... 

But remember, Lyme disease can't take away everything: Lyme Disease cannot take away your hope or your will to keep fighting.   Only YOU can do that.  Only you can decide to give up, to be hopeless, to throw your hands up in defeat because it seems too hard.  Too unfair. 

When it comes to Lyme, you have two choices: drown in the injustice of it all or find some deeper meaning that helps you stay afloat.  To not just find the light amidst all the darkness, but BE the light.

If you are feeling sick or discouraged or fed up, do something small.  You'll feel less helpless. Less alone. Less frustrated. 

Maybe you'll get lucky and someone will listen... 

 

A special thank you to a little birdie in DC.  Thanks for being the best mock trial husband a girl could ask for and for being such a wonderful friend. 

I would also like to thank Governor Cuomo's office for taking the time to hear the story and plight of this New Yorker with Lyme.  Even if the outcome had not been favorable, feeling as though I had a legitimate voice in the process is more than I could have asked for. 

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