Your Personal Story Makes a Difference

[Guest guest]

I thought you would like to read Sharon's inspirational story of Lyme

activism. She sent this to me in mid-May and it's been lost in my

voluminous inbox since then!

Phyllis Mervine

CALDA

www.lymedisease.org

Empowering Patients since 1989 Through Advocacy, Education & Research

Hello! I had quite a remarkable thing happen to me two weeks ago.

On Friday, May 1, I called my representative's office. I've been an

activist on a variety of issues for twenty years, but I've never had

this happen before.

I called Congressman Olver's office in Western Mass. (where I live

-- in a rural town of 900), AND his DC office and emailed his DC office.

I insisted on telling my Lyme story (as I did with Kennedy and Kerry) to

his legislative healthcare aide or that aide's voicemail. I called to

tell him why HR 1179, the Lyme & Associated Diseases Bill, was so

important to me.

It was very difficult to make the calls because my speech is severely

neurologically affected by Lyme/babesia; sometimes I can't vocalize at

all, sometimes it sounds very labored and distorted. However, I wanted

them to HEAR what Lyme/TBDs have done to me, and that I put the trouble

into calling and talking (or leaving voicemails). I actually was on the

verge of tears at the end of my voicemail, just from telling my story,

which has never happened when I've called a legislator before. I thought

they might think I was a loon.

The following week, Olver's aide called to say that he is happy to

support the bill and will be cosponsoring it! I was so happy! I was

especially pleased because Olver is on the Appropriations Committee for

the House, which will be useful when the bill makes it out of subcommittee.

I'd asked my friends, family, and disability community activists to call

Olver, too, so I didn't know what had swayed him. I checked back a few

days later to make sure he really was enrolling as a cosponsor. I

couldn't speak at all, so I had to use TTY relay. After the operator

finished explaining how to use relay, his aide said, " I'm glad you

called. I wanted to thank you for calling. It was because of your call

that the Congressman decided to cosponsor the bill. "

Then I burst into tears, which she couldn't hear because I was on relay. :-D

This is how most of the Congressmen and Congresswomen who have signed on

have gotten involved -- because they were moved by a constituent's story.

In fact, a Lyme friend I met online, Trish McCleary called another Mass.

Congressman, Rep. McGovern, and after listening to her story, he also

agreed to cosponsor.

I was so pumped by that that a few days later I called some legislators

on the subcommittee that will have the Lyme Bill in front of them later

on. (I found the list and contact info on Lymenet.)

I spoke to the office of a congresswoman in Colorado. Her aide said that

she wasn't familiar with the bill, but that she would look into it and

tell her about it. She said, " The Congresswoman is not a cosponsor yet,

but she is VERY STRONG on HEALTHCARE. " She also added, " Even though you

are not a constituent, I have taken your story to heart. "

Usually, if you're not a constituent, they don't really waste time

listening, so I knew she meant it.

So, I think that if people call and tell THEIR LYME STORY, and let their

legislators know that yes, Lyme is in their district, and that HR 1179

is something you need, they will cosponsor.

If you haven't yet called your own Representative (whoever that is) and

your two Senators, I hope you will, because what happened to me could

happen to you, too. Really and truly. I'm just a regular person who got

bitten by a tick two years ago and then lost her voice, her ability to

stand or sometimes move at all, who has been in bed, immobilized by

pain, for a year and a half.

Your story isn't my story, or Trish's story, but your story is

compelling. They all are. Plus, your story will be more compelling to

YOUR rep than mine was to other reps, because you are their constituent.

It's great to feel like something you do makes a difference!

You can get your Rep's name, phone number, fax number, and email form at

http://cwork.com/

(If you're not sure which district you're in, go to house.gov and type

your zip code into the box in the corner at the top, and it will take

you to their page.)

It ONLY TAKES TWO MINUTES to make these calls!

When you call, just say, " Hi, my name is _____. I'm a constituent. I'm

asking Representative _____ to support HR 1179 - The Lyme & Associated

Diseases Bill. I have Lyme, and . . . . " And then tell your Lyme story.

If you have already called your Rep and Senators, thank you!

Would you be able to ask your friends, family, coworkers, neighbors,

congregation, etc., to call and tell your story (or their story, if they

are affected by Lyme, themselves)? If they're not sure what to say,

that's fine. They can just say they want them to support HR 1179 - The

Lyme & Associated Diseases Bill, and ask them to co-sponsor it.

OR, they can use these sample blurbs or sample letters at the same website:

http://cwork.com/index.php?option=com_content & view=article & id=48 & Itemid=118

Peace,

Sharon Wachsler

P.S. If you've already called your Representative, but not your senator,

please do. We want the senatorial pump primed for when Sen. Dodd

introduces the Senate version of the bill. [Phyllis note: Dodd

introduced the companion bill S 1352 at the end of June, so please call

your senators, too.]

[Guest guest]

Thank you so much for this. I am going to definitely write to all of my

representatives!

Sending many spoons!

Lissa

>

> I thought you would like to read Sharon's inspirational story of Lyme

> activism. She sent this to me in mid-May and it's been lost in my

> voluminous inbox since then!

> Phyllis Mervine

> CALDA

> www.lymedisease.org

> Empowering Patients since 1989 Through Advocacy, Education & Research

>

>

> Hello! I had quite a remarkable thing happen to me two weeks ago.

>

> On Friday, May 1, I called my representative's office. I've been an

> activist on a variety of issues for twenty years, but I've never had

> this happen before.

>

> I called Congressman Olver's office in Western Mass. (where I live

> -- in a rural town of 900), AND his DC office and emailed his DC office.

> I insisted on telling my Lyme story (as I did with Kennedy and Kerry) to

> his legislative healthcare aide or that aide's voicemail. I called to

> tell him why HR 1179, the Lyme & Associated Diseases Bill, was so

> important to me.

>

> It was very difficult to make the calls because my speech is severely

> neurologically affected by Lyme/babesia; sometimes I can't vocalize at

> all, sometimes it sounds very labored and distorted. However, I wanted

> them to HEAR what Lyme/TBDs have done to me, and that I put the trouble

> into calling and talking (or leaving voicemails). I actually was on the

> verge of tears at the end of my voicemail, just from telling my story,

> which has never happened when I've called a legislator before. I thought

> they might think I was a loon.

>

> The following week, Olver's aide called to say that he is happy to

> support the bill and will be cosponsoring it! I was so happy! I was

> especially pleased because Olver is on the Appropriations Committee for

> the House, which will be useful when the bill makes it out of subcommittee.

>

> I'd asked my friends, family, and disability community activists to call

> Olver, too, so I didn't know what had swayed him. I checked back a few

> days later to make sure he really was enrolling as a cosponsor. I

> couldn't speak at all, so I had to use TTY relay. After the operator

> finished explaining how to use relay, his aide said, " I'm glad you

> called. I wanted to thank you for calling. It was because of your call

> that the Congressman decided to cosponsor the bill. "

>

> Then I burst into tears, which she couldn't hear because I was on relay. :-D

>

> This is how most of the Congressmen and Congresswomen who have signed on

> have gotten involved -- because they were moved by a constituent's story.

>

> In fact, a Lyme friend I met online, Trish McCleary called another Mass.

> Congressman, Rep. McGovern, and after listening to her story, he also

> agreed to cosponsor.

>

> I was so pumped by that that a few days later I called some legislators

> on the subcommittee that will have the Lyme Bill in front of them later

> on. (I found the list and contact info on Lymenet.)

>

> I spoke to the office of a congresswoman in Colorado. Her aide said that

> she wasn't familiar with the bill, but that she would look into it and

> tell her about it. She said, " The Congresswoman is not a cosponsor yet,

> but she is VERY STRONG on HEALTHCARE. " She also added, " Even though you

> are not a constituent, I have taken your story to heart. "

>

> Usually, if you're not a constituent, they don't really waste time

> listening, so I knew she meant it.

>

> So, I think that if people call and tell THEIR LYME STORY, and let their

> legislators know that yes, Lyme is in their district, and that HR 1179

> is something you need, they will cosponsor.

>

> If you haven't yet called your own Representative (whoever that is) and

> your two Senators, I hope you will, because what happened to me could

> happen to you, too. Really and truly. I'm just a regular person who got

> bitten by a tick two years ago and then lost her voice, her ability to

> stand or sometimes move at all, who has been in bed, immobilized by

> pain, for a year and a half.

>

> Your story isn't my story, or Trish's story, but your story is

> compelling. They all are. Plus, your story will be more compelling to

> YOUR rep than mine was to other reps, because you are their constituent.

>

> It's great to feel like something you do makes a difference!

>

> You can get your Rep's name, phone number, fax number, and email form at

>

> http://cwork.com/

>

> (If you're not sure which district you're in, go to house.gov and type

> your zip code into the box in the corner at the top, and it will take

> you to their page.)

>

> It ONLY TAKES TWO MINUTES to make these calls!

>

> When you call, just say, " Hi, my name is _____. I'm a constituent. I'm

> asking Representative _____ to support HR 1179 - The Lyme & Associated

> Diseases Bill. I have Lyme, and . . . . " And then tell your Lyme story.

>

> If you have already called your Rep and Senators, thank you!

>

> Would you be able to ask your friends, family, coworkers, neighbors,

> congregation, etc., to call and tell your story (or their story, if they

> are affected by Lyme, themselves)? If they're not sure what to say,

> that's fine. They can just say they want them to support HR 1179 - The

> Lyme & Associated Diseases Bill, and ask them to co-sponsor it.

>

> OR, they can use these sample blurbs or sample letters at the same website:

>

> http://cwork.com/index.php?option=com_content & view=article & id=48 & Itemid=118

>

> Peace,

> Sharon Wachsler

>

> P.S. If you've already called your Representative, but not your senator,

> please do. We want the senatorial pump primed for when Sen. Dodd

> introduces the Senate version of the bill. [Phyllis note: Dodd

> introduced the companion bill S 1352 at the end of June, so please call

> your senators, too.]

>

>

>