Posted by Emily Block | 2 comments

My Brother Gives a Speech

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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Posted by Emily Block | 2 comments

TED Talk: Looking past limits

I really enjoyed this Ted Talk by Caroline Casey and thought people may find it interesting and relevant.  I don't want to give you any spoilers, but I will say the talk involves an elephant in India.


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Posted by Emily Block | 0 comments

I'm back!

   As you have seen in my recent previous posts, I had lost access to my blog due to...I'm not really sure.  I'm also not really sure how I fixed it, but the good news is I have access back!

  So what have I been doing in the almost three months since I last had a proper entry?  Just moving across the country to go to grad school in Boston.  No big deal.  

  But first I packed in as much quality time as possible with friends and family from home...
The only beautiful thing at Venice Beach, LA.  That place is super seedy!
I'm so metal.

Out to lunch with Grandma

My cousin graduated from high school!

Dad and I doing some backyard astronomy for the eclipse and the transit of venus.

If you look really closely you can see said transit of venus on the right of the right circle.

Crafts with Mum

And I discovered hipster glasses, hair accessories from elementary school, and makeup from middle school while cleaning my room.

Snickers does not appear to know what to do with such a wonderful gift.

   I had another CCSVI surgery because, as I suspected my silly veins collapsed again.  Aside from the memory of this highly unflattering picture, I have been doing great ever since.

Sexy and I know it.
 I also did the whole graduating college thing.  Again, nbd right?

Oh, the comments I got on my socks...

#Peoplewhomadethispossible  Jennifer, my disability resource center contact, mentor, and friend

#Peoplewhomadethispossible Professor O'Bryant my professor and oh so flexible kinesiology department advisor

#Peoplewhomadethispossible Professor Blank my physiology professor who was totally cool with me passing out under lab tables and coming from the hospital to class.

#Peoplewhomadethispossible  My AMAZING grandparents who funded my education and were always my cheerleaders

#Peoplewhomadethispossible My Mum and Dad who were my cheerleaders X1000 and would drive down to SLO zillions of times to rescue me when I was sickly

Obligatory narcissistic graduation pictures.

Almost overdoing it on the obligatory narcissistic graduation photo shoot

Hmmm I wonder why I put the world on my cap...

My favorite building on campus...the biology building.  If you think it looks like a Cold War bunker that's because it totally is.  Not even kidding.

Playing in the sand like a five-year-old after graduation.

And then, of course, there is the whole moving across the country to start grad school in BOSTON!  (Ok, I'm actually in Medford, but close enough.)

My mascot is Jumbo the elephant.  I'm pretty ok with this.

Things are pretty here on campus.

This be my dorm.  Kind of looks more like a city hall.

The ramp to the OT building

Definitely never thought I would be here.  Glad I am.

And the surrounding area isn't too bad either...

there are covered bridges...

And most importantly, DAIRY FARMS!

I flipping love cows!
   Right now I'm two weeks into classes and I LOVE it!  I'm not too fond of 8:00AM classes, but I'll get used to it.  Any time I think I can't do something, I think of SAS and realize that I can do pretty much anything.  Classes are really fun and interesting.  Thanks to a great undergrad education at Cal Poly, I got to skip one class and can be more creative with my schedule due to already taking the prerequisite courses for so many.  This quarter I am taking anatomy, kinesiology, health conditions, clinical reasoning, and occupation and adaptation.  About twenty times a day I have this awesome moment where I realize how lucky I am to be in Boston being trained for an awesome career!
   I thought I would be overwhelmed, but have actually been doing fine.  Again thanks to my undergrad education and my mom grooming me for this since I was born.  Come midterms, I'm sure I'll want to retract that statement, but for now, things are good.  Time to wrap this up an get ready for the OT departments weekend social thing.  :0)  Life is good.


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