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.  

Read more about the event 

Brother and Me - slideshow with music

Reflections

Before I get too far removed from my time in Ghana, I wanted to write a post about all of the random things that didn't fit in with my other posts.  Most of these are excerpts from my written journal and I'm not going to even try to fit everything together nicely.  Also, I just stopped by the photo lab and Brain Scannell, the ships photographer, gave me a bunch of pictures that he took from the home stay trip!  (All photo cred. to him for this post.)

Driving

One thing I didn't really talk about yet is the exhilarating experience of driving in Ghana.  Here's from my journal:

"I am a very easy going passenger, but even I was white-knuckling it at some points on our drive yesterday.  Most of the trip was on the highway which was a bumpy two lane road (with no divider of course).  There was constantly cars swerving into us coming head-on to dodge a slow, overweighted truck or a broken down car (there were many of those) or even person.  THe skilled bus driver navigated what to me seemed like a very difficult level of Mario CArt with the help of his horn.  I'm becoming quite interested in how people in different countries se their horn.  In Dominica, the drivers used the horn to greet drivers that they knew or to warn oncoming traffic of our presence on a blind curve.  In Brazil, the horn was mostly used as a rebuke for bad driving (though used more liberally than in the STates.)  In Ghana, the use of a horn seemed to be its own language and served many purposes.  The main use of several quick honks seemed to say, "coming through and I am bigger than you so MOVE!"  Our driver used this liberally when passing slow cars, as Tros-Tros (bus taxis) started to pull out in front of us. or when people were walking in the street.  We had one close call where I swore we were going to hit someone., but he leaped out of the way at the last second.  Then there was the "thank you" honk, the "hurry up" honk, and the "you almost killed us, you crazy dillhole!" honk.  Did I mention there were no seat-belts?  The driving was quite an adventure in itself, but there was still more to experience in Ghana."  Good times!

Cocoa

I may or not have had the experience of eating raw cocoa fruit.  Anyone in the know feel free to correct me if I am wrongly referring to this fruit as cocoa.  There was some confusion in translation, but I'm pretty sure what I ate was from a cocoa plant.  Anyway, as I was sitting watching the evening meal being made at the home stay, Sara brought me a strange looking fruit that she had picked from a tree by the river.  The fruit was slightly football shaped with ridges around the outside.  It fit nicely in an open palm to give an idea of the size and was yellow with a tint of green at each end.  The treat came from the inside of the fruit.  Sara expertly broke it in half and showed me the inside.  It was filled with neatly organized rows of coin sized seeds.  The seeds were coated in a slimy off-white substance.  I was surprised when Sara said it was cocoa and I should eat some of the seeds.  She showed me how to suck the slimy white stuff off of the seed and then spit the seed out.  The texture was frightening for sure, but I tried it and it was actually ok.  Not something I would seek out to eat, but I didn't gag or anything.  I was expecting it to taste like chocolate, but it tasted just like fruit.  Sweet and organic tasting.  On my second seed, I remembered that chocolate had caffeine in it and I couldn't remember if the cocoa plant would have high amounts of caffeine or not.  Not wanting to risk it, I only had a couple more seeds.  It was a short experience in terms of time, but pretty cool to (maybe) have tried the fruit that chocolate comes from.  

Warmth

  I managed to finally stay up late enough for a post-port reflection after Ghana!  A post-port reflection is basically a time where anyone can go to the union (the place where all the seating is for large gatherings and classes) and discuss what they did and how they felt about the previous port.  Much to my horror, we had to go around the room and say one word to describe our experience in Ghana.  I tend to dislike forced exercises like this where I always feel like I'm saying the wrong thing.  This time, I feel like I actually came up with one word that covered my experience fairly well.  The word was "warmth."  The easiest component of the warmth was the weather.  It was warm, or to take away any glossing over, it was way flipping hot.  So there's the easy part.  The more complex reason for me choosing that word came from my interaction with many different people while in the port.  In general, my fellow travelers are extremely warm people.  We look out for each other and have fun together.  We see, discuss, process, and experience so many new things with each other and help make each other's experiences a better one.

   The culture I experienced in Ghana was also one of warmth.  I could see the warmth in the family bonds at my home stay or in the support neighbors showed for each other.  One guide said that the political problems in Africa, particularly Ghana come from different places than those in the West.  He said that people in the West seek power for themselves.  They take from others so that they can have more.  In Ghana, if an individual were to find themselves in power or affluence, they would take money in the same way as a corrupt senator would, but they would be doing it to give to their family.  Families are so tight here that a successful person wants to not only give things to his or her immediate family, but to his or her grandparents, aunts, uncles, nieces, nephews, cousins, second cousins, and third cousins.  This guide said that it was done out of love, not selfishness.  We didn't really get into how this impacted the nature of power struggle and wealth divide in our two countries.  It was just a statement sent out to the world.  I cannot attest to whether or not this is true, I can only pass on what I guide told me and think about what it means.  

   The warmth I witnessed was not only shared between Ghanaians.  I saw it in how the guides, my home stay family, the students and professors at the University in Winneba, the sellers at the market all showed certain aspects of warmth.  Never before have I been to a place where such an emphasis was put on sharing a part of yourself.  Bargaining was in terms of ceti AND in terms of a token from a distant country, a handshake, a hug, a story.  I was taking something home from "The Ghanaian", and I made a point that they would be able to take something home from "The American."  When I went to the university excited to hear some of the faculty give talks, I was surprised and excited that the question asking went both ways.  It was the same in meeting the market queen or in talking with the fishermen.  It wasn't all a show, it was all an exchange.  Both sides left those experiences with a head full of new things to think about and the satisfaction of sharing a part of yourself with another person.  I think that is so often the goal of travel, and so rarely something people actually experience.  To me, this is warmth.  

Picture time!

  

About to receive my Ghanaian name and welcome gifts.

Dancing after the naming ceremony.

More dancing!

Group photo with the village elders and my little friend I snuck in for the pic.  (We are upper right.)

My two beautiful tour guides discovering my camera.

Out on the town!  

More dancing!  My home stay mom made sure I was dressed well for the occasion.  (Pants were a no-no so she let me borrow some cloth to fashion a skirt with.)

In the bat cave!  (I'm lower right.  And the sitting is actually a pose for the photo and definitely not because i just climbed up a ginourmous hill and am recuperating.  Totally just a pose.)

P.S.  Check out the SAS blog post featuring two of my friends!  http://blog.isevoyages.org/2012/02/15/deaf-student-shares-sas-experience/