Little Infinities

Emma Halliday1

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Table Of Contents Dedication ... 05

Foreword ... 06

Introduction ... 09

Chapter One: The Day You Went to Get NY Bagels and Got Mauled by A Bear ... 11

Chapter Two: If You Give A Stranger A Cookie ... 19

Conclusion ... 26

How to Volunteer ... 28

Works Cited ... 29

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Dedication

F o r T h e r e W i t h C a r e :

T h a n k y o u f o r b e i n g S u p e r m a n w h e n

e v e r y o n e e l s e w a s a f r a i d t o b e .

a n d a l s o

F o r m y F a m i l y :

I l o v e y o u , f o r e v e r a n d a d a y .

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Foreword

Time is ultimately a concept that man created. No other living creatures on Earth care about how many tomorrows there will be; they simply “live in the moment” and try to sur-vive for as long as possible. Time, however, to humanity, is a constant. We invented time, and now it dictates our every move. We constantly are reminded that ‘time is of the essence’ and ‘live for today, for tomorrow may never come’. It seems that once someone has mastered the concept of time, they have thusly learned the meaning of life and will, consequently, live forev-er. What happens, however, when the relatively small amount of breaths of each individual is suddenly cut short? Not just by a few years when they’re 98, but when they’re just start-ing their life. One’s childhood should be spent simply learning how to tie shoes and looking forward to the next Kindergarten class. How are people supposed to conquer time if they don’t have time to do so?

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The novelist John Green wrote a book depicting the story of two teenag-ers who fall in love, but thry both have terminal cancer. And let the waterworks begin. Hazel and Augustus are constant-ly battling time as they fight for their lives as well. Yet, somehow, these two charac-ters create forever in a limited amount of time. They cared for each other beyond the span of life and death, and even when one or the other wasn’t present. She would always be his, and he would al-ways be hers: their personal, tiny infinity. My new favorite book didn’t in-troduce me to There With Care, but it inadvertently helped me prepare for this whirlwind experience that, as with many events in life, always turn left when I ex-pected it to turn right. However, not ev-erything with TWC is tears, hardship and loss. More than two soul mates separat-ed by the failure of their own bodies to keep healthy, they discovered friendship, hope, and adventure.

What I’ve come to realize is that There With Care isn’t a place where the needy go to have someone walk their dog or mow their lawn. It’s where the strongest go when they’ve been strong for too long. When they’ve realized that forever has been taken away from them, There With Care reminds them that for-ever does not mean infinite. Forever does not mean surpassing life, death, and time. Forever is in the moments: where your daughter lifts her head off her pillow and dreamily calls out, “I love you Daddy”, or when your teenage son drives off to his school’s prom. In life, nothing is constant. Time is always fleeting away, too fast for anyone to catch up. The seasons change, and so do the years and the people control-ling those dates. However, what There With Care and John Green have taught me is that we only need a few constants in our lives to live them to the fullest. We need those limited forevers, the little infi-nites that so often a simple act of care can produce.

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Boys Play with the toy trains at TWC8

Introduction1830 proved to be a glorious year for the grandchildren of the men who raised their shoddy bayonets to fight the British for their independence. The glorious year of 1830 was the year that the steam powered railroad was successfully built and operated in the United States! In the years to follow, the railroad business single-handedly changed the United States as we knew it before the mid-19th century. By the 1860’s, the railroads not only altered social aspects of everyday American life, but also greatly changed the economic status for individuals and the country as a whole: introducing the first monopolies and large investment standards. These railroads revolutionized America, but they weren’t just the silly props that Buster Keaton ran around on trying to save the damsel in distress. Mass corruption, easy dismantlement and discrimi-nation plagued the railroad corporations. Sounds revolutionary, right? Flash forward to the turn of the cen-tury, where people had much faith in the new health care system. As our country ’s needs have changed, the system has stayed the same: just like a railroad track.

Currently, the health care system (health in-surance companies, hospitals, and sometimes even the physicians) is so problematic that families with critically ill children, most of whom are under the poverty level, are drowning within the system. This struggle takes away time and energy from the families who now have to worry about stacks of paperwork and bills along with helping their child get better. This is where programs like There With Care (TWC) step in. There With Care is a program, based in Boulder, Colorado, with a one-year-old chapter in the Bay Area. It provides a range of meaningful and funda-mental services to families with members who have a critical illness. Because America’s cur-rent health care system does not provide adequate personal and psychological care for the patients and families, organizations like There With Care must provide the meaning-ful, personal touch in the fast-paced business world of health care services. However, would a program as caring and compassionate as this be necessary had the government fo-cused a little less on the monopolies it was funding, and more on the citizens riding the trains? 9

M i s s i o n S t a t e m e n t

There With Care of the Bay Area’s mission is to provide a wide range of meaningful and fundamental ser-vices to children and families during the critical phase of a medical crisis. We serve families reffered by medi-cal agencies, by building a network of services and people who ease the burden of life’s day-to-day obligations with compassion and care.

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Chapter I:The day you went to get ny bagels and were mauled by a

bearT h e s o c i o e c o n o m i c r o l l a r c o a s t e r o f a c r i t i c a l i l l n e s s .

Ok, time for a little test. Let ’s see if you can translate this:-Tú sabes cómo es esto: si miro la luna de cristal, la rama roja del lento otoño en mi ventana, si toco junto al fuego la impalpable ceniza, o el arrugado cuerpo de la leña, todo me lleva a ti.

If you could understand that, it seems that your life has been touched by multiple cultures and languages. Which, in America, is quite impressive seeing as only 20% of Americans speak another language at home (Erard) and 1/4 of Americans are knowledgeable enough to have a serious conversation in a foreign tongue (McComb). Test number two:-Aut viam inveniam aut faciam.

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In situations where language bar-riers exist, an already emotional situation can become even more complicated. With the cultural di-versity within the Bay Area, it’s hard to imagine that community facilities, especially ones as widely visited as hospitals, regularly find it hard to provide enough staff that are able to communicate with their patients that do not speak English fluently. Dr. Blair Halliday, an Anesthesiologist in Santa Rosa, California notes that, “We come across [language barri-ers] almost on a daily basis… It can make delivering health care much harder... getting informed consent is

harder. They may not completely understand what the risks and complication are. So very often we have to provide a translator … which again adds to the cost of the health care.” According to the 2010 Bay Area census, 23.5% of Bay Area families are of Hispanic or Latino origin. After Caucasian, this is the second biggest demographic group. This disruption in doctor/patient com-munication is something that is being forgotten by the hospitals and organizations. This increases stress and time for both the families and physicians. It is no one’s fault, but it has to be fixed. For if both the patient and the physician can’t communicate to understand their current health situa-tion, how are they ever going to get better?

D r . B l a i r H a l l i d a y - - A n e s t h e s i o l o g i s t

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Robert Fulghum wrote a book of short essays called: “All I Really Need to Know I Learned in Kindergarten”. Fulghum notes that, simply, the, “most basic aspects of life bear its most important opportunities.” In today’s society, we are all so caught up in winning the game, coming out on top, doing the most and beating everyone else. The Beatles wrote in their song, “The End”, “And in the end, the love you take is equal to the love you make”; the American society is so caught up in short term results, that they forget completely about the long run. In the current health system pre-dicament, they seem to have, too, fallen under the spell of short term ideals. The health care system has lost sight of the care in their name. When asked how health care could be im-proved within the American system, Dr. Halliday hopes that with the up and coming reforms, a more “integrated” system can be put into place. The corporations would then be able to, “make health care delivery more efficient so that people are getting better health care for fewer dollars and having less money and time wasted.”

The healthcare system has become an impersonal institution. No longer is it about the people, but instead about how to have the big-gest insurance company. (Fill in the blanks: Fifteen minutes can save you ______. ) However, instead of stressing good bedside manners in medical school, the white collar insurance-men stress the importance of not getting sued at any cost. This includes not insuring those patients with preexist-ing medical conditions, taking away their voice instead of teaching the physicians that they have one. Ultimately, the new, unfriendly face of health care is increasing the stress and hard-ships for the patients and their families to a point where programs like There With Care are neces-sary, because so much of the caring aspect has all but disappeared from the department.

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A yummy cupcake from the TWC one year birthday party14

How do the customers get insurance? Let’s say that, Person A, a Bay Area resident, is not living in much luxury, but he still lives in a good area with highly regarded schools. However, Person A must hold two jobs, because his family needs to pay the monthly bills; something they are only sometimes able to do. Suddenly, on a dark and stormy night, Person A is caught in a terrifying, horrific thunder and lightning storm. Person A is outside and all alone, and is presented with three options. Option one: pull out an umbrella. Option two: run inside the nearest hotel. Option three: hide under the nearest tree. Unfortunately, for poor Person A, he realised that, one: his umbrella is broken, two: the only hotel in the area is the Ritz Carlton, and three: trees highly attract lightning. He can now, one: stand in the rain under the broken umbrella and wait for the sun to come out, two: use money he doesn’t have to rent a room for the night, or three: stand under the tallest tree in a lightning storm.

TWC Family Enjoys time together at the birthday party Lindsey, a TWC volunteer helps out with face painting15

Now transition back into health care. Option one: standing in the rain under a broken

umbrella, is in today’s world, the MediCaid (MediCal for California residents) a, “Rather sim-

plified insurance plan, but most of the basic things would be covered by MetaCal. And the

premiums are fairly low for that so that low income [families] can afford it” (Halliday). However,

not all physicians take MediCal, so ultimately, while you are covered, there are many holes.

The second option, the Ritz Carlton, is as if Person A had gone to the Emergency Room with-

out insurance, because his health problem had gotten so bad. While he will get the care he

needs, Emergency Room health care is the most expensive kind of health care and can, for

some medical issues, be avoided by taking care of the health problem beforehand. Finally, if

Person A decides to stay under the tree, or not get professional health care at all, then he

takes the greatest risk for his personal and familial health by not having himself treated or

examined at all, simply because he does not have the insurance coverage.

Who is to blame for the limited choices of often-forgotten voices living in this country

labeled land of the free? Is it the insurance companies, with their ability to deny patients for

pre-existing problems, or the Government to blame for not providing adequate health insur-

ance for those who can’t afford it, or allowing people to become this impoverished in the

first place? Or is it in the hands of society, for creating such an addiction to health care

coverage? One that causes the beholder, if they go a day without insurance, to become

so scared and paranoid to even leave the house in fear of getting mauled by a bear in

the middle of New York City? Dr. Halliday notes that, “Often the health care is available and

very high quality health care is available, but the means available might not be available.”

Ultimately, the health care system has become immersed into the world of stocks and business

suits. They have lost all sense of empathy towards their patients. That is where organizations

like TWC come in to save the day.

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Meet the Bogoyo FamilyLeft: Carlotta (Mother)

Below: Carlotta and Ba iley (Daughter,F ive-years-old)

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Chapter II: If you give A stranger a

Cookie...H o w T h e r e w i t h c a r e i s t h e m o d e r n D a y s u p e r m a n .

Keith and Brooke Desserich, the parents of two young girls note in their journals depicting their journey through their six-year-old daughter’s fight with brain cancer, write “We call them ‘rusty eyes’. It’s the moment in the morning that you wish you had gone to bed earlier … It’s more than just a lack of sleep; it’s a weariness and exhaus-tion that have become our lives … The ‘rusty eyes’ continue, night and day. This is our God” (Desserich, 110-111). This experience is not a unique situation for the Desserich family.

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24 hours, just another day for us to get to, another day until Friday. 8 hours spent sleeping, 2 hours of driving, 7 hours of work, 2 hours of cooking, the rest of the hours slip away in our busy daily routines. While we are reminded constantly by old proverbs to “make every day count, because your days are limited”, the hours seem to pass on their own, and it’s finally Friday-- not soon enough. Days, weeks and months become a routine to the privileged. Rarely do we recognize the complexities of every day, hour and minute of our lives. However, when our life suddenly disappears, when the life of your child is put in the hands of time, suddenly every silent complexity begins to scream. The terminal illness disrupts this routine silence for everyone in the family. Suddenly, “your life changes on a dime, things that normally don’t take a second thought”, notes Michelle Chang, the founder of the Bay Area unit of There With Care, from first hand experience, “how to get a sibling to their baseball practice, how to get another sibling to school, or to a Girl Scout meeting. Those things that usually are easy to manage suddenly become really stressful and really difficult to handle, especially when you’re worried about a child who’s critically ill in the hospital.” That is exactly where There With Care swoops in to as-sist the family, even if it’s just a few errands. So often, all eyes are focused on the patient in the hospital. In the hustle and bustle of the hos-pital, even the primary care team with the most amazing bedside manner, on average, “would spend 21.7 hours per day to provide all recommended acute, chronic, and preventive care for a panel of 2,500 patients“ (Altschuler, MD, et al). They, too, have a routine where timing is key, and while each family is unique, there simply isn’t enough time to fill the needs of not only the patient but also their surrounding family, who dropped everything to focus on their child. TWC noticed this and stepped in to be the shoulder to lean on. While Michelle was at the hos-pital with her six-week-old daughter Christine, who was diagnosed with retina blastoma, she remem-bers, “we saw so many families in the hospital that just had no help whatsoever.” She brought this into TWC by, within 24 hours of getting the a referral, making sure to call the family, “just listen, [ask] how can we help, what is stressful, what is heavy on your plate, how can we help lift that burden a little bit.” This is what TWC is about. They provide the meaningful, family oriented touch that is too often lost in the paperwork and procedures.

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By simply being there with a fresh face, a helping hand, and someone who honestly cares about the patient and their entire family, is a relief in itself. The families are on such an emotional roller-coaster that anything stable can change their day. They know that they are not alone, and they will never have to go through this process without a constant friend. Whether it is paperwork or a medical emergency, TWC is there to help them through those minutes and hours and days that they no longer have control over. John Green writes in his novel “The Fault in our Stars”, “I missed the future... I felt robbed. I would probably never again see the ocean from thirty thousand feet above... I could imagine it. I could remember it. But I couldn’t see it again” (305). Along with providing much needed emotional support, TWC provides many other fundamental services for their families. Carlotta Bogoyo notes that, “One thing is the gas... With the travelling, the gas itself is so expensive now that really helps … I usually go grocery [sic] every day, just to ... pre-pare something for dinner, but now I don’t have the time to do that... we have to do groceries every week or every two weeks.” As gas, grocery, and hospital prices are increasing, families not only don’t have time to work, but they also don’t have time to take care of their own basic needs. TWC volun-teers deliver groceries, babysit, walk dogs, transport families to and from appointments, anything the family needs. For instance, once TWC donated a car to a deserving family, allowing the son to be able to get from their home to the hospital. Today, there are programs that exist, such as Ronald McDonald House, that are changing lives everyday. However, all of these programs are specialized and focused on one aspect of familial life. The unique part of TWC is how willing they are to try their best to provide any support they can for the families going through difficult. The care, compassion and empathy that every single worker or volunteer invests within the organization is simply astounding, and truly inspiring. Michelle states proudly that, “the best thing about There With Care, and I tell all my friends and my husband this as well because he comes home from his job in Silicon Valley and complains about it, and I say, you know at There With Care every single day I see complete strangers helping other complete strangers”. Very rarely, in the complex, busy schedule of health insurance, does one see such an amazing sight.

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You know, life is good and life is bad. It’s how you look atit that makes you who you are.

- Justin, A TWC Recipient

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Carlotta Bogoyo TWC Staff and A TWC Family Michelle Chang Meghan A TWC volunteer and Jesus

Lindsey and joanne: Mother and Daughter Voluteers

Face painting at the Party

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Bailey Bogoyo24

For me, the hero’s journey is not the voyage from weakness to strength. The true hero’s journey is the voyage from strength to weakness.

- John Green

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While talking about his novel “The Fault in our Stars”, author John Green

stated that, “the real hero’s journey is not really, as I had always believed, the jour-

ney from weakness to strength … the real hero’s journey is the journey from strength

to weakness”. For these families whose lives are changed with one trip to the doc-

tor’s office, suddenly their lives, and their child’s life is altered, their ability to live

a routine life is taken away from their control. That does not mean with those few

words the family has lost everything. For even though the journey from strength

to weakness is truly heroic, it does not determine that the weak cannot become

strong once again. We cannot lose faith in the weak, push them aside, move on to

the next minute, hour and day. There With Care reminds the weak that they are the

heroes, and then guides them until they, too, can regain their strength.

Conclusion

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How to Volunteer

Would you like to volunteer with There with care?

head on over to www.bayarea.therewithcare.org and sign up for a volunteer training session!

you could: -Organize donations

-donate-deliver groceries and donations to families

-babysit-and so much more28

Works CitedAltschuler, Justin, MD, David Margolius, MD, Thomas Bodenheimer, MD, and Kevin Grum

bach, MD. “The Annals of Family Medicine.” Estimating a Reasonable Patient Panel Size

for Primary Care Physicians With Team-Based Task Delegation. N.p., 25 Jan. 2012.

Web. 20 Mar. 2013.

“Bay Area Census -- Bay Area Data.” Bay Area Census -- Bay Area Data. N.p., n.d. Web. 12 Feb.

2013.

Bogoyo, Carlotta. Personal Interview. March 22, 2013.

Chang, Michelle. Personal Interview. February 27, 2013.

Desserich, Keith, Desserich, Brook. Notes Left Behind. New York: Harper, 2009. Print.

Halliday, Blair. Personal Interview. March 3, 2013.

Erard, Michael. “Are We Really Monolingual?” The New York Times. The New York Times, 15 Jan.

2012. Web. 20 Mar. 2013.

An Evening of Awesome at Carnegie Hall. Perf. John Green, Hank Green. Puffin, 15 Jan. 2013.

Web. 20 Jan. 2013.

Fulghum, Robert. All I Really Need to Know I Learned in Kindergarten: Uncommon Thoughts on

Common Things. New York: Villard, 1988. Print.

Gladwell, Malcom. Blink. New York: Little, Brown and Company, 2005. Print.

Green, John. The Fault in Our Stars. New York: Dutton, 2012. Print.

Mack Faragher, John, Mari Jo Buhle, Daniel Czitrom, and Susan H. Armitage. Out of Many: A His

tory of the American People. 5 AP ed. Upper Saddle River, NJ: Prentice Hall, 2000. Print.

McComb, Chris. “About One in Four Americans Can Hold a Conversation in a Second Lan

guage.” About One in Four Americans Can Hold a Conversation in a Second

Language. N.p., n.d. Web. 20 Mar. 2013.

“There With Care | Bay Area.” There With Care. N.p., n.d. Web. 30 Jan. 2013. 29

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