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In putting together my story to become a member of The Walking Gallery, I started thinking about all the people who have helped me out since I got sick. Maybe they helped me out physically, maybe emotionally. All I know is that all of these people were there for me. Most of them were there for me multiple times. Some stayed up with me all night. Some pushed me to get help. Some listened to me complain, cry, and laugh. And I know that without this cast, I wouldn't be who I am today.

So, everyone, thanks -- you prove that the heart of life is good.

 

 

The Home Fries

 

The people who understand where I come from. It’d been years, yet when I got sick, they called, sent flowers, and visited. They don’t pick me up off the ground, but they’re always only a phone call away.

My Girls1. The Sister, 2. The Mother

My Boys3. The Father 4. The Brother 5. Becky, 6. Bissie, 7. Jessie, 8. Ryan

 

The Cal Kids

suzie

9. Suzie

From the beginning of college through the present, no matter what the issue is, they listen to me, laugh with me, and pick me up when I fall.

viv matt

10. Stephanie, 11. Vivian, 12. Matt

Or they send their parents, or their boyfriend, or their boyfriend’s friend. Basically they’re hyphy rockstars who stood by me before I got sick, stood by me when I got sick, and stand by me to this day.

Sonja Nayeli13. Sonja (14. Tal), 15. Nayeli

Amanda

16. Amanda

havah steph

17. Havah (18. Jason), 19. Stephanie,

AGO ADX20. Stephanie, 21. Carrie, 22. Laura, 23. Arri, 24. Susan, 25. Laurelei, 26. Erin, 27. Carissa, 28. Amanda, 29, Carla, 30. Sarah, 31. Andrea, 32. Emma, 33. Peter, 34. Dave, 35. Jared, 36. Mark, 37. Bryson

At Cal, it’s hard to have real relationships with your professors, your GSIs, your classmates. You’re one in 500 students. But when you fall over, these barriers somehow disappear. My bioethics professor offered to be my medical advocate and call my parents. My social psych professor took me to the student health center in a police car. My GSIs took me home and didn’t freak out too much when I got pulled out of their classes by EMTs. My classmates told me their personal stories, walked me home, and ran the interference required to keep me out of the hospital. Then I worked at a homeless resource center, and, of course, I had my own contingent of the tribe.

gorcey

38. Max, 39. Lev, 40. Ryan, 41. Ben, 42. Joe, 43. Andi, 44. Neil, 45. Steven, 46. Eric, 47. Emilie, 48. Chad, 49. David, 50. David, 51. Diva, 52. Robb, 53. Dylan, 54. Olivia, 55. Kevin, 56. Kristen

 

The Georgetown Crew

I know I owe my masters degree to my cohort at GU - they ensured that I graduated with some cognitive surplus intact. They stole a wheelchair (we returned it... eventually...), drove me home, tucked me into bed, picked me up in weird places, took me to the hospital and waited for hours, staged an intervention, rescued me from water, were my chauffeurs, and caught me when I fell.

Dantana

57. Karen, 58. Veronica, 59. Erin, 60. Dantana, 61. Zach, 62. Veronica, 63. Ashley, 64. Matt, 65. Chris, 66. Matt, 67. Anthony, 68. Betelle, 69. Elliott, 70. Hooman, 71. Jennifer, 72. Kyle, 73. Laura, 74. Maria, 75. Sarah, 76. Stephanie, 77. Charlotte, 78. Haymi, 79. Heather, 80. James, 81. Alice, 82. Alex, 83. Dr. C, 84. Dr. H, 85. Amy, 86. Miriam, 87. Michelle

Phil

88. Phil

ekat
89. Ekat

 

The Feds

For a crew that wears suits all the time, they’re surprisingly protective. From the ONC to HRSA to the FDA, these people were amazing.

90. Wil, 91. Farzad, 92. Lanre, 93. Sachin, 94. Andrea, 95. Sameer, 96. Yael, 97. Marty, 98. Miryam, 99. Robyn, 100. Ian, 101. Mike, 102. Rose, 103. Mary Beth, 104. Georgie, 105. Lori, 106. Jim, 107. Jill, 108. James, 109. Adam, 110. Damon, 111. Aman, 112. Alina, 113. Alon, 114. Mary, 115. Doris, 116. Amy, 117. Gary, 118. Sasha

hhs

High Fives

High Fives

119. Alicia

randi120. Randi

The Law Kids

I was scared that when Amanda left and I wasn’t with the GU kids everyday I’d be alone. That I wouldn't have a person anymore. Nothing could be further from the truth. These people adopted me into their family and are there for me as if I had always been a member of the crowd. Even though I’m not an attorney.

121. Brad, 122. Marie, 123. Gabe, 124. Shaun, 125. Michelle, 126. Sam, 127. Natalie, 128. Laura, 129. Navin, 130. Kathleen

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The Walking Gallery (and Twitterati)

ted regina131. Regina, 132. Ted,
These people gave me a voice to speak out about being a patient. They helped me discover telling your story is one of the most empowering things you can do.

Whitney133. Whitney (and 134. Jake)

Rebecca135. Rebecca
gallery 136. Nikolai, 137. Wen, 138. Tiffany 139. Lisa, 140. Matthew, 141. Fred, 142. Alan, 143. Gregg, 144. Leonard, 145. Alan, 146. Amy, 147. Brian, 148. Diana, 149. Kait, 150. Greg, 151. Christine

 

The Entrepreneurs

And we have all the technophiles.Some are health, some are not. All want to make the world a better place.

152. Katie, 153. Dhruva, 154. Dave, 155. Marco, 156. Kyle,157. Adam, 158. Henry, 159. Jamie, 160. Michael, 161. Andre, 162. Polina, 163. Anish, 164. Adam, 165. Lygeia, 166. Raph,

Marvin167. Stephanie, 168. Marvin

 

The Alturists

And last, but certainly not least, we have all the people who took me in and really had no idea what they were getting into. I can never thank you enough for all the love and care you all have shown me.

Donna and Dennis

 

169. Donna, 170. Dennis

 Konstantin171. Konstantin

 Leonard172. Leonard
Kelli171. Kelli

“Are your eyes closed?”
“No”
“Yes they are. Jess, why do you lie? It scares me when you lie.”
…“Wait, what?”
“You’re going to fall.”

And, like clockwork, I fall, semiconscious to the sidewalk on the corner of Pennsylvania and Constitution.

Somewhere above me someone is concerned. “Is she ok?” “Yes” “No, really, is she ok?” “Yes, she has a heart problem.” “Really? Is she ok?” “Yes, I’ve got this.” “You’re sure?” “I’m sure.” Yes, lady, he has this. He always has it. No matter how embarrassed he is. No matter how inconvenienced he is. He has this.

So, what’s wrong with me? Postural Orthostatic Tachycardia Syndrome. POTS. What’s that mean? It means that sometimes when I stand, my heart rate doubles, my blood pressure drops, and I pass out.

Apparently most people grow out of this. But I’m not most people. I’m 25. I’ve had POTS since, if I’m honest, I was about 9. When I finally got it diagnosed at 21, my condition became legitimate. I’ve seen the statistics; the odds that this goes away after fifteen years are almost nonexistent. I won’t die, but sometimes I’ll want to. As my cardiologist put it, “I’m [his] problem.” I’m the one he can’t fix. But that makes sense. I have an idiopathic condition. It lies somewhere between the heart, autonomic nervous system, and mind. It’s a veritable no-mans land of drugs and specialists where there’s no cure and very little understanding.

During my last “bad” episode, my friend called to check up on me: “Jess, if they make you go to the hospital I’m not going to fight them. Plus, isn’t that what you do?” No, that isn’t what I do. Yes, I have a degree in Health Systems Administration. Yes, I’m an “expert” on Health Information Technology. But that doesn’t change the fact that I’m a horrible patient. That I carry my medical records around with me in a hot pink binder. That I hate hospitals.

And I always have. If I had my way, I’d keep everyone out of them. It’s why I “do” health IT. See, I’ve been in lots of hospitals - from community hospitals to major academic medical centers. They're filled with well intentioned, highly trained, people. Unfortunately the mechanisms these care facilities have put in place don't actually connect the people within, let alone between, instances of care.

I used to think I’d trade anything for perfect health. Now, I don’t know if I would. See, I’m happy. I have people. I have a future. And I know that my life has been influenced by my sickness. Without it, I wouldn’t understand. I wouldn’t understand powerlessness. I wouldn’t understand frustration. I wouldn’t understand that the system is broken.

How broken?  During one stay, despite my credentials, I ended up semiconscious at the bottom of a flight of stairs, in tears, begging to go home. See, in the moments I’m a patient, I can’t manage my life. And, despite their credentials (on this visit: a MD/MBA, a MPH, and three MHSAs), my friends can’t manage it for me. Can you imagine someone without this support system navigating the bureaucracy that is healthcare? I don't know how they do it.

Luckily this is only one side of my coin— I’m healthy enough to have a day job advising the people that chart the course of American health policy. The philosopher Herodotus got it right: “the greater the man, the greater the misfortune,” or, as our friend Peter Parker put it “with great power comes great responsibility.” I know that the weaker I get, the stronger I become. The weaker I get, the more I understand that my care continuum isn't the only one with flaws. The weaker I get, the more I understand that together, we can change our health system. That the whole is greater than the sum of its parts.

Back under the glow of the US Capitol, I hear my friend:

“Jess, you’re broken. But I’m broken too. We’re all broken.”
“You think that together we make a whole person?”
“Yeah, Jess, together we’re a whole person.”

And with that, he picks me up. And carries me home.

http://i2.wp.com/mw2.google.com/mw-panoramio/photos/medium/56925708.jpg?w=630

This is the story behind my Walking Gallery Jacket: "Is She Alright"

8197658371_d50573660a

OskiCalCard

[[ No, it won't always go the way it should, but I know the heart of life is good -- JM ]]

Some amazing things have been happening. No, I didn’t get into grad school (one can hope….), but I did get a huge opportunity to create a public health reporting system for TLH. I get figure out what holes are missing in the statistical correlations between HIV/AIDS and STD's and create supplemental questionnaires about behaviors which might effect the results. I’m so excited.

[[ Thank you for making me struggle, Tell me the world ain't mine -- I'm a miracle baby -- I refuse to lose -- Tell me what do you see when you look at me -- On a mission to be what I'm destined to be – M/TI ]]

Secondly, I became a site administrator for sfhomeless.net, a totally awesome wiki targeted at players in the homeless community

[[ Give me your eyes for just one second -- Give me your eyes so I can see -- Everything that I keep missing -- Give me your love for humanity -- Give me your arms for the broken hearted -- Ones that are far beyond my reach -- Give me your heart for the ones forgotten -- Give me your eyes so I can see -- BH ]]

Ok and finally… I Ran. On the verge of becoming trite, "I can’t believe it." I ran an 11.5 minute mile today. I haven’t run a mile since, well, yesterday (15 mins), but before that I haven’t run in probably a year. I couldn’t believe I didn’t pass out! I finally feel like I’m getting control of my life. This week I grew up. No, really. For the first time in my life, I knew, on my own, when I couldn’t handle that whole fainting thing and I actually asked for help from a qualified medical professionals (ie the emergency room). Not only that, when they brushed me off, I went back and got hyphy with them. And it got results. It was completely unprecedented by my previous actions and for that I am amazed with myself. I wasn’t independent and at the same time I was my own advocate. Seriously people, be amazed.

[[ No more stress, now I'm straight -- Now I get it now I take -- Time to think, Before I make mistakes -- That part of me left yesterday -- The heart of me is strong today -- No regrets I'm blessed to say -- The old me dead and gone away -- TI/JT ]]

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I feel the need to address some simple matters of safety. So it's not so much that you're doing it wrong, as, well, you're doing it wrong.

Now don't get me wrong, I appreciate all you guys do for me, it's above and beyond what most friends ever have to do and I'm really blessed to have you all.

But while I love you, I'd also love it if we could streamline this passing out business. (more…)

calstanford

As always, I never cease to freak doctors out. When I was at Stanfurd this past week, I had the misfortune of passing out as I left cardiology. After passing out I, of course, tried to escape and consequently hit my head on a tree. Then THIRTY doctors RAN at me. With a crash cart. In the rain. It was ridiculous—I think all the interns wanted me to die. You should have seen how crestfallen they were when I didn’t have to be shocked. (more…)

leather_latex_and_bdsm_pride_light_flag_drapeau_bandiera_bandeira_flagga-1969px

Here's an op-ed I wrote for my public policy class-- enjoy!

Apposite Bondage, Adverse Laws

It's a benign flag—white, black, and blue stripes, topped with a seemingly-happy heart. Though practitioners say otherwise, all I see are the literal colors—black and blue bruises, blood, and bandages. BDSM—Bondage, Domination, and Sado-Masochism. Here in San Francisco, the flag is flown high as thousands of BDSM practitioners in full (or lack thereof) regalia flock into Dore Alley to share their passions each year.

I was there this year. Only I was fully clothed, an outfit completed by my security headset and orange vest, and, for once, not a member of the majority population. My duties required standing on the corner of Folsom and 10th, keeping the police out and those with ass-less chaps in; I watched as leather-clad folk enjoyed themselves, in, umhum, public ways.

Getting over the obvious breeches in normative behavior, I was struck by the ease the BDSM community shed their secrecy (with their clothes) and uniformly practiced bondage in both homo- and hetero-erotic ways. In a 2000 survey of self-professed BDSM practitioners, 68% expressed that they were heterosexual. This figure is surprising, as BDSM in its public form originated as a gay subculture. While the images of leather-daddies leading young men in nipple clamps are still salient, this shift from homo to hetero is intriguing.

Here in San Francisco, you can see this depolarization of the homo-underground. But then again, this is the unofficial gay Mecca and there are plenty of men to spare. But this makes me wonder—why is it that San Francisco is the unofficial Mecca of homosexuality? There’s the usual reasons including dishonorably discharged sailors, the AIDS crisis, or Harvey Milk’s election and subsequent martyrdom in 1978- But why does it continue to be the epicenter for the flamboyant, the irreverent, and the just plain odd? How did it get to the point where underground factions would exist and separate within the community—BDSM, Circuit Boys, Club Kids, Druggies, Drag Queens, etc?

San Francisco attracts outsiders people because like attracts like, and in this case, like also attracts acceptance. But what of the people who are not so out of the mainstream? What if San Francisco’s stand is debunked by Proposition 8 this November? While I know the veiled Sisters of Perpetual Indulgence will be ok because they’ve been built against prejudice (and being nuns, they don’t need sex), but what will happen to the homosexual population that simply wants to create a (modified)-nuclear family? What about those who do not want an underground life but who want to stand proudly and feel normal amongst their peers? There are many.

Many people have seen the popular photograph of Del Martin and Phyllis Lyon, a lesbian couple of fifty-five years before they were married by Mayor “Gay”-vin Newsom on June 16, 2008. Had their 2004 marriage not been annulled, Martin and Lyon would have had four more years of wedded bliss before suffering the tragic death of Del Martin last month.

The public and mostly heterosexual BDSM community certainly defies more conventional archetypes than this couple, does it not? Even my Christian side says yes. Not to say that we have all changed our views or proudly accept Bondage and Discipline, Dominance and Submission, Sadism and Masochism, but if heterosexual people can beat each other publically in the streets I can’t help but feel that we can change our strict laws on something as convivial as marriage. Proposition 8 threatens to defeat fairness in San Francisco and all over California.

And even though I may not practice BDSM and I may not be a lesbian, that doesn’t mean I shouldn’t put my agenda aside for a few hours to help protect those ascribing to an alternate lifestyle. In the city with the golden gate bridge, I would hope we can uphold the golden rule. It’s time for marriage to go homo—uniformly given to all people. Until my peers remember that, I’ll be here warming up for next month’s Folsom Street fair, the largest leather fest in the world. Oh Daddy….

samhat

I’ve finally killed Pop-Teal, Concrete Diver.

The sign reads "Call, Don't Fall"

Correction:

I’ve finally lost the “concrete diver” part of the moniker.

Having to take a defibrulator everywhere with you is kinda stressful...
As most of you know, last Friday’s visit to the Emergency led to a full week in the Cardiac ICU. It was grand fun. While I was there I got chased down by nurses, went through four roommates, heard eight code blues, got kissed by a Berkeley emeriti, and picked up an orderly. Good times.
Note the boxes. They hellof abused me!
Frank was a pretty cool friend 🙂
I was tested to the EXTREME—we had constant monitors, echos, ekgs, CTs, blood, a few hot doctors and a few ugly ones, and finally the tilt-test. The tilt test is what kept me there for EVER, and all I know is it was a success- my HR jumped so high they decided that shocking my ass back to life was a bad idea, skipped the end, and went straight to diagnosis.
That's my heart-- how awesome is that?!?!
Apparently I have Postural Orthostatic Tachycardia Syndrome-- I’m a POT. Basically, my heart rate jumps from a nice, normal 60 BPM, to something like, oh, 190+ when I stand up. This is where all that insane energy comes from, if I’m not using energy, I’m dead. My life suddenly makes sense.
I tell you, abused!
So no, I am not Amy Winehouse, though the quote concerning her from WWTDD is still appropriate: “When you’re 2{1}-years-old, and you’re in the hospital this often, and you’re not a cage fighter or black market mercenary, something is up. You should get arrested just for that.” We're gonna hope that the drugs will make this a little less accurate...
My room with a view-- you could see the sunset over the bay from it!
A special thanks to my loves for coming to visit me and bring me food and basically making a week in the hospital possible. Really, I couldn’t have done it without you.

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Update -- April 29th 2012 -- I wrote this list of my "adventures" just before I got POTS diagnosed for the first time. At this point I didn't know what I had or why I was falling over. I wanted to laugh it off, ignore it and just be alive. It ended up not working out like that - about a week later I finally faced what was wrong with me. But I think this list explains why I earned the moniker suffix "Concrete Diver." As to Pop Teal, well, all you need to know is Vegas was involved.

So last night I passed out in some BART stations. While most people thought I was methed up, I was just experiencing some good old fashioned syncope. Matty was comparing this adventure to the Harry Potter adventure and wondering what was worse. In that spirit I’ve made a list of the top most embarrassing (and/or exciting) adventures in my world...

1. The Harry Potter Screening. July 2007. People hated me so much for passing out in 110 degree heat that I ended up with internet hate mail. The hate forum (which seemed more malicious in my imagination) can be found here: http://forum.myspace.com/index.cfm?fuseaction=messageboard.viewThread&groupID=0&page=8&EntryID=436876&CategoryID=0&get=1&adTopicId=0&type=friendForum&friendID=107888674&lastpagesent=9&Mytoken=37BED4CB-629C-4674-ACD1EC2C2C9B9ABA2930717

2. The time a professor ended up in my bedroom. May 2008. As it was the second time I had passed out in his presence (though this time I wasn’t even in his class, I was just walking around outside. I think he was stalking me) we skipped the Ambulance and Fire Trucks (after all last time I yelled at them and ended up in a police car) and went straight for feeding me a whole bag of Peanut Butter cups and Gooey Powerbar gel, and, oh yeah, taking me home.

3. The time I punched an EMT. January 2006. As they were trying to force me to go to the hospital, I didn’t want to go. I think I also tried to get out of the ambulance and was restrained. I know, ridiculous- but dude, that ambulance ride is expensive!

4. The MCB midterm. November 2006. Some GSI got medical equipment from a lab before the EMS people got there to take my BP and the prof wanted to have people look at me as an example of real medical emergency. I wanted to die of embarrassment; I opted for the ambulance ride just to get out of there quicker!

5. The Cop who wanted to drunk tank me. May 2008. So alcohol can make Jessica sick. Even a little bit. So being being way under the legal limit doesn’t mean much when your body freaks out, or when some guy has spilled a whole beer on you and you reek of homlessness...

6. The time a professor wanted to be my medical advocate. April 2008. It obviously required three GSI’s, a professor, a guy I knew, and two I didn’t to make sure I was ok after being "special". Then the professor wanted to give me legal advice because he’s a lawyer and call my parents to make my life “easier.” Also, he convinced me that I had totally and completely forgotten about office hours that I hadn’t signed up for. I thought I was having blackouts. That undue stress alone should have got me better grade in that class!

Honorable Mention (date is beyond legal limit): My introduction to high school. August 2000. Hi, I'm Jessica. I'm going to start school here. I'm an insecure adolescent who wants to make friends with the cool kids and be a cheerleader. ****, I just passed out. What an impression! No wonder I became a nerd and went to Cal.

I’m sure there’s other gems. Like that one time I ended up in a kids dorm room while he told me to act less drunk so he didn’t get in trouble for rufieing some girl, but really, those stand out as the top five (err six) adventures of “pop teal, the concrete diver.”

Also, thanks to all my friends, you know how it is to get a call and me go "can you bring me some french fries? I need a salt lick. Like a deer...

 

Broken Femur

As previously stated, holidays with me are never dull. New Years was no exception. It started off quietly enough- a lil church, a lil skiing, but all hell broke loose eleven hours and twenty three minutes into the new year. I was skiing along nicely when suddenly a snowboarder hit me. I tried to carve to the right but to no avail- I ran smack dab into the middle of a HUGE tree.


The Tree.

 


The Kid. His name is Sam, how ironic.

 

If I hadn’t been wearing my helmet I’d be dead, as my eye attests to, and as it turns out I comminuted my femur- that means it's broken in so many places they stop counting.

After the ski-patrol guy determined that I wasn’t faking the pain and couldn’t ski to the bottom of the hill they put me in a ‘scoop’ backboard which means that they assembled it around me in a snow bank since they couldn’t move my leg from its bent position. They had to pick me up three times, and let me tell you I screamed bloody murder each time. I finally got to the bottom of the hill where they cut off my five-day-old-686-snowboarding pants, gave me some morphine and straightened out my bent leg. Let me tell you, it is exactly like the movies-bone popping, screaming, and really hot ski patrollers 😉


My eye. Before it turned black.

 


Inside the snow-mo.

After enduring a hour ride to the nearest hospital, ten hours in ER, two catheters, ruination of my supergirl stuff, breakage of my camera, and really unresponsive nurses- they finally operated. 4 am and I had a brand-new-titanium-filled-femur.

Broken Femur

A lil break...


Rod and screws


My Butt. Well Thigh. But really close to my butt.


My Knee.

But my story isn’t over yet. According to my doctor breaking your femur is the most painful thing you can possibly do. Additionally, as each femur is responsible for 20% of the hemoglobin in your blood, I was in trouble. At least all those donations paid off. What didn’t pay off was the nursing staff in a small Podunk town- the nurse who gave me my transfusion had a MPH but didn’t wash his hands after touching blood and checked my pulse with his thumb. I thought he was going to kill me- which his counterparts had almost done by not reading my allergy bracelet making me swell up to Pumpkin Size


Looks like cool-aid!


A-. Thank you very much.

Thankfully he didn't kill me, and I finally got my fever down under 100 on Friday and got to go home. The only thing left is to finish up the anti-blood-clotting shots I have to give myself

A shot.


Ouch!

Oh, and if you ever end up in the hospital don’t eat the food- it’ll kill you.

The Food, Sam, Me, and a Black-Eye

I might not get to come back in the spring- how sad would that be? But at least I'll have company my sister's boyfriend just broke his femur today- six days after I broke mine- what are the odds? I really appreciate all the phone calls, comments, and cards- they make me feel super!