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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"

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EMP_Wil

Social psychology shows that if you say thanks you're happier. Recently, Georgetown asked me to write a piece on my mentor-mentee relationship during grad school. You might know that I was an Innovation Fellow at the Office of the National Coordinator in 2010. While I was there, Special Assistant Wil Yu became my "Health IT and Innovation 101" guide. I definitely owe my health IT know-how to Wil and am certain that working with him changed the trajectory of my career (for the good!!!). Here's what I submitted to GU, it's a puff piece, but I think the gratitude comes through (their slightly modified post can be found here) (more…)