and Congress

[Guest guest]

,

GREAT account of how you spent YOUR summer vacation informing congress

about what the needs of deaf and HOH people are. You did good. Give

yourself a raise. Maybe this will let them know how important it is to

get the funding there to help us hear again.

Happy Anniversary. Riding the choo choo train, shopping at the Union

Station (cute but expensive stuff) and then telling it like it is for

Congress. You'll be part of the Congressional Record from now on, I

think.

I'm impressed. Get an agent.

The Original

From: " Portis " <RUPraying@...>

Subject: Congressional Hearing Health Caucus

I just wanted to give you an update about my " day at Congress " -

smile!

Hubby and I rode the train into town (he does this every day as the

commute by car is SLOW). We got off at Union Station and had some

time to kill so we walked around window shopping and ate a late

breakfast at a little cafe. I was pretty nervous, so only ate a

little bit.

We then walked down thru the park area towards the Capitol

Building. There are big green barriers all around it now because of

security. As DC is still at " code orange " due to the London

bombings, there were military and DC police and SWAT everywhere!

You should have seen some of the guns they had too! One lady SWAT

team member had a gun that was as big as she was. She was petite,

but had the muscles to heft that thing around. She certainly looked

like she knew how to use it. I wave and say " hey " to everyone I

see, but I didn't get any answering " hellos " . Oh well, their job is

a serious one, and I can't blame them for their diligence to the

task. When we got up to the gate, security told us that we would

have to enter on the other side of the Capitol building. (You can't

just walk across the front of it anymore) They said, " Follow the

wooden fence and keep right. You'll end up on the south side and

can enter from there " . Not a problem, and we were still early so I

walked 4 more blocks with hubby, although he had to shed his tie and

suitcoat at this point. I was glad I wore sensible shoes!

By the time we got to the other side, we were anxious to get into

someplace air conditioned, needless to say! Another guard stopped

us and asked, " What is your business on the Capitol today? "

We explained why we were there, he checked his list and pointed to a

door. We walked in the door and were taken to a sign in desk by

another security person. Again a list was checked for our names,

and my pocketbook and Terry's briefcase were searched. We then

walked through metal detectors, were asked if anyone asked us to

bring anything in, etc. We were given a badge that " we were not to

remove while on the premises " . It had the Congressional room number

we would be in. HC-7.

The Capitol Building is so beautiful and various types of marble

made the floor and staircases really a site to behold! The

cathedral ceilings were painted with various murals depicting scenes

of early government, and one hallway had early history scenes from

each state. I could have spent all day looking around!

When we got to HC-7 I was introduced to several Congressional

staffers and the CART reporter. We were expecting about 30 people,

and they set out chairs for about that many. We were told that " one

never knew " about whether or not the cameras showed up - so not to

be thrown if they did.

Before I go any further, I might should explain what the CHHC is.

(Congressional Hear Health Caucus) It is a bipartisan, no-dues

caucus of members from the House and Senate committed to supporting

the needs of those who are deaf or hard of hearing. Founded in

2001, CHHC highlights the issues of critical importance to those

with hearing loss through periodic briefings and correspondence with

all Members of Congress.

The Co-Chairs:

Rep. Lois Capps (D-CA)

Rep. Carolyn McCarthy (D-NY)

Rep. Jim Ryun (R-KS)

Rep. Jim Walsh (R-NY)

Sen. Norm (R-MN)

Sen. Tom Harkin (D-IA)

Then members:

Rep. L. Berman (D-CA)

Rep. Bilirakis (R-FL)

Sen. Hillary Clinton (D-NY)

Rep. DeLauro (D-CT)

Rep. Vernon Ehlers (R-MI)

Rep. Bob Goodlatte (R-VA)

Rep. Maurice Hinchey (D-NY)

Sen. Inouye (D-HI)

Rep. (R-IL)

Sen. ph Lieberman (D-CT)

Rep. Betty McCollum (D-MN)

Rep. Neal (D-MA)

Rep. Pallone (D-NJ)

Rep. Payne (D-NJ)

Rep. Jim Ramstad (R-MN)

Rep. Ileana Ros-Lehtinen (R-FL)

Rep. Adam Schiff (D-CA)

Rep. Adam (D-WA)

Rep. Henry Waxman (D-CA)

Rep. Wexler (D-FL)

Rep. C.W. Bill Young (R-FL)

Over 50 people came, so many had to stand. The meeting was called

to order, and I was introduced as the first speaker, and I gave a 7

1/2 minute speech about my hearing loss, my surgery, and activation

of the CI on 5/13/05. We then watched a 2 1/2 minute clip of my

activation video. It was all very business like, so I was pretty

surprised to see several in tears when I was done! That alone made

my own knees wobble a little!

Next up was Dr. R. Nielsen, Executive Vice President of the

American Academy of Otolaryngology. He commented that watching my

video made him want to go back into practice, that he missed working

with patients and to be instrumental in helping them hear again. He

did a great job of outlining cochlear implant technology

in " laymen's terms " (remember the general public, nor members of

Congress know much about CI's) and also explained expected outcomes

in implant recipients.

Then Donna Sorkin, Vice president of Consumer Affairs of Cochlear

Americas (with some imput from Tom Walsh of Advanced Bionics)

explained insurance practices and it's impact on people - problems

with reimbursement, etc.

The speakers were then asked questions for about 10 minutes. I had

several - some being " Did I learn sign language? " " Since my hloss

was bilateral, why didn't I have 2 implants? " , etc.

When we adjourned, numerous people came up to me with other

questions, and several wanted to see my implant. I ended up taking

it off so they could " hold it " , but as I was " deaf " then, Dr.

Nielsen began answering their questions about how it worked. He

finally had them hand it back to me, and with a smile waited until I

was " on " again.

By 1:20, most of the room began rushing off for 1:30 meetings. My

phone vibrated. My dad - from Florida! I couldn't hear him very

well, so hubby took over the phone call. He relayed to my dad that

I was in a Congressional room directly under the dome, and " no,

sorry no t.v. cameras showed up " , etc.

When the phone call ended, we were practically the only ones left,

so we shook a few more hands and left. As soon as we exited the

building, our name badges turned to a dark color. My mouth - which

often hangs open when I'm astonished - attracted the attention of a

few people who explained to us that this was just another security

measure so people wouldn't re-enter the building.

Another long, but more leisurely walk to Union Station and lunch out

with hubby! It was our anniversary too (19 years) and I was finally

able to eat!

I received several emails this morning from people who heard my

speech yesterday, thanking me for coming in as a " consumer " and

putting a face to cochlear implants. It was a really great

experience, and I appreciate all the 'good thoughts' and prayers on

my behalf. I really felt at peace and wasn't at all nervous. Hubby

said he was really surprised how " collected " I was (cuz we both know

I'm a rather emotional person).

Anyway, that is my day in a nutshell!

P

Frederick, MD

Left CI implant: 4/6/05

Activation date: 5/13/05