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Revisiting My Brother's Speech in Support of the ACA


     I am heartbroken to have to revisit the time in my life before the ACA.  I thought this was behind me.  I thought a lot of things that are being challenged lately.  I think it's time to dust off this old blog and get posting about all the many things that need to be talked about. 

     I'll start this off by revisiting a fantastic speech my brother gave in support of the ACA when it was in it's infancy.   Now that this lifesaving legislation is under threat, it's more important than ever to share my family's story.  Read this and know that there are millions of others in a similar situation.  Please, support the ACA and stand up against those who would have it dismantled.  



The following is copied from a previous post.  Original Post Here

Dan and I Hiking the Alps in 2005


  Today, I feel like the luckiest sister in the world.  As I sat in class, squirming in anticipation from a text from my brother, he was giving a speech to Congressman Waxman, and many other important people.  The speech was about how the Affordable Care Act has benefited our family in life-changing ways.  Finally, a text from him, "Wonderful," in response to my, "how did it go?"  A few minutes later I got to read his speech for myself and the idea that I had a truly extraordinary sibling was confirmed.  
    Here is his speech...


"When I was 16 I watched my 19-year-old sister, Emily, have a stroke right in front of me. This was only the second of three she eventually survived. In a matter of seconds I watched as a genetic condition manifested bringing her from the competitive soccer player I knew to someone barely able to get out of bed. Over the next five years I watched as my family too changed from a comfortable middle class family to one solely focused on the health of my sister.

My father continued to work as an engineer and my mother still worked at her physical therapy clinic so we could pay the bills, but all our free time went into figuring out what was happening to Emily. At the time she started getting sick the healthcare system, a system that was in place just a few years ago, seemed to be working against us.

As that first year pounded ahead in a constant rush of hospitals, doctors, and false hopes she started to rapidly approach the age limit at which my parents health insurance would kick her off. Eventually Emily had to withdraw as an honors student from Cal Poly San Luis Obispo in the hopes that becoming a full time patient may help us find a cure before she was deemed unfit for insurance.

Another year passed and she made great progress, we confirmed a diagnosis of Ehlers-Danlos Syndrome, but still I saw as her enthusiasm for life started to waver. This diagnosis would mean she would need to frequent hospitals the rest of her life to receive IVs. As it stood she could not do anything physically demanding, she could not get a job, and she needed constant medical attention. Even if she went back to college, received a degree, and got a job, no one would insure her. She could never receive the healthcare she needed to live a real life.

This was the state of the healthcare system before the Affordable Care Act. This was how patients, with undeserved conditions, were treated. My sister is an economic pitfall because she is sick with no known cure. She does not make economic sense to treat. Before the Affordable Care Act this would be the end of the story for my family. Too bad. Better luck next time. Some lose, some win. These were the only words of comfort we ever received.

And then a bold congress, pushed forward by some great women and men, decided that we were better than this as a country. My family sat glued to the TV as we watched the role call vote for the greatest piece of social legislation since the Great Society. And together we watch as it passed. And in that moment it passed I saw my sister receive her life back. With the passage of that bill, we witnessed healthcare becoming about health again.

From now on my sister could not be denied coverage just because she needed help. This meant for the rest of her life there was a path in front of her and a government beside her to help her walk it. She went back to college, graduating with a degree in kinesiology and with honors to boot.

I called her two days ago to wish her a happy 24th birthday, something that would have been tragic a few short years ago. We couldn’t talk long because she was rushing to her grad class at Tufts University in Boston. She is now going for an advanced degree in Occupational Therapy with strong hopes of finding both a job and insurance. Insurance she thought she never could get. And insurance that will allow her an IV once a week that can keep her standing upright and working.

When I told her I was speaking about the Affordable Care Act she had one request for me. She wanted me to thank everyone who made the legislation possible, not because it helped insure her, but because it let her be a part of the country she lived in. It let her get a degree, and eventually get a job, pay taxes…and even volunteer. More than anything the Affordable Care Act let her be a citizen and contribute to the land that stepped up and took care of their own. Thank you Congressman for all you have done for my family. Thank you for giving my best friend, my sister, the most caring, and ambitious person I know, her life back and, as she said it, her citizenship back. The American Dream is attainable for millions more like my sister because of the work you did to pass this bill. Thank you. Thank You.Thank You."


Read more from Daniel Block at his Small Well Lit Blog.  




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Happy Halloween!

I know I haven't updated this in forever, but I will do it someday!

In the meantime, happy belated Halloween!  My wheelchair is dressed as a Sir...




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April Showers

  It has been quite a crazy time since spring break!  (Even though I only posted about recently, that was way back in March for me.)  I have been very much enjoying my improved strength and coordination and the extra freedom it gives me!  Until a bit of a POTSie spell the past week, I hadn't used my wheelchair at all!  I've been doing a lot of fun stuff with friends, but of course not as much as I would like.  There's this crazy thing called grad school that tends to get in the way!

 Neuroanatomy has been and still is driving me slightly crazy.  Though I am interested in the subject enough that I'm thinking about specializing in that area, it is very, VERY hard.  I have a solid background in science so I thought I knew roughly what I was in for.  Nope.  It was even harder than that.  I haven't stressed about a class this much or felt more over my head since gen. chem. my first quarter of undergrad.  Basically my feelings on neuro summed up:

I have no idea, but I better figure it out by next Thursday's final!

  And then...well I really don't want to go into this much, but I figure I should address the fact that my city was bombed.  Basically, it's been horribel and sad and stressful.  There is no way I can write about it eloquently, and I don't want to add to the piles of garbage that dilute the thoughtful, meaningful, and important pieces other's have written or filmed or photographed.  It's one of those life changing things that I may never fully understand.  I just want to say that I am extremely thankful for social media connecting me with my friends and news as things were happening, the police and everyone who kept us safe afterwards, and my friends and pretty much Boston in general for sticking together since then.  A bunch of us here have pledged to do 31 acts of kindness during the month of May.  For me, as well as for a lot of the people who are participating, I think it's some small way we can use the terrible thing that happened as fuel to do something positive.  Feel free to check it out and join in!
 

   May is looking pretty difficult as well, with surgery coming up (10 days Ahhhh!) and finals and all that.  But a girl can still manage to have some fun.  :0)  There was a softball tournament for all the grad programs and despite my doctor forbidding me from playing sports and despite the fact that I couldn't hit, throw, or run, I decided that this was something that I must do.  My friend Melanie organized our team so we made up for our lack of skill with some pretty fly uniforms!  The night before a few people came over and we decorated these completely blinding neon shirts with our team name (Team Awesome) on the front and OT related nicknames on the back.  I picked "Non-Compliant" because I feel it summed me up pretty well.



We were squashed very thoroughly in the game (we played against a team of all guys and some of them had, like actual baseball pants and their own gloves and stuff), but it was a blast!  I mostly played (adapted) catch on the sidelines, but I did get to (adaptively) hit a ball during the last inning.

Just like Buster!





My dad asked if I got on base from my hit that night when he called and that was the first time it occurred to me that I should have done anything except celebrate the fact that I hit the ball and then walk off the field.  Oh well!  :0)  I'm going to post the video I made of the game but first, I want to warn you that it contains some swears (sorry Grandma and Grandpa!).  So, you know, only watch it if you are ok with that.

Blogger is being a dillhole, so you have to click here for the video.


Oh, and side note, the blog is still under construction   I'm fairly confident that none of the pull down menues at the top of the page work...yet.  And I'm going to put new pictures in the slideshow...someday. 
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