ImproveCareNow Jennie_david


Drum Roll Please...

In only a couple of days, there will be a flurry of texting between Sami and I, sending pictures of packing and potential Learning Session outfits back and forth. Yesterday I sent Sami a few pictures of a sample outfit, to which she instantly texted back, “I like it!! It looks professional and cute!” (Note: said outfit was, indeed, packed immediately)

 

Last night I was pouring over an email with the Learning Session agenda, clicking on the various hyperlinks for teasers about the plethora of exciting things to come. One link sent me to pictures posted on the ICN Exchange of various ImproveCareNow teams; I chuckled at the Boston Children’s Hospital team’s faces photo-shopped onto duck statues (a la Make Way for Ducklings), the Children’s Healthcare of Atlanta team’s matching t-shirts, the MassGeneral Hospital for Children team’s “We love ICN” sign (complete with a full GI tract doodle), and – finally – the ICN Exchange “Team Oscar Selfie” (a gutsier version of Ellen’s now infamous Oscar celebrity selfie).

 

Nothing like previewing pictures of the big-hearted, gutsy-humored, determined-with-all-their-might-to-change-chronic-illness-care care center teams to get me excited about the Spring Learning Session!

 

Spring 2014 ImproveCareNow Learning Session

 

Sami and I have tried (and, notably, failed) at accurately articulating the pure excitement, joy, motivation, and positive energy that’s simply contagious at the Learning Session. Here in text, it sounds cheesy and like ImproveCareNow is prodding us to write down such ooey-gooey sentiments. But, let me reassure you on behalf of Sami and myself, our ooey-gooey praise is exceedingly well-deserved and comes directly from our hearts (read: guts).

 

In addition to the undeniable culture of optimism and innovative thinking, there are always particular sessions we just cannot wait for. Following are the things we look forward to most at the Spring Learning Session:





    • PAC Reunion: The Learning Session is the one time when the PAC Leadership is able to brainstorm in-person (and also eat lots, and lots of candy!). We look forward to seeing each other face to face, and are always astonished by the amount of important work we get done in a couple of days. This Learning Session will be the first where our full PAC Leadership will be in attendance (PAC co-chairs - Jennie & Sami, and Patient Scholars - Katherine & Tyler) – we just can’t wait!!

 


    • QI Fundamentals: Sami and I stumbled upon this last year as we both arrived early, and were quickly enthralled with the phenomenal centers who are our newest family members in the network. This is a wonderful opportunity if you’re in need of some inspiration (note: by the end of the weekend, you’ll be bursting with inspiration!) or a Quality Improvement refresher, and is a fantastic way to meet upcoming superstars in the network.

 


    • Opening Reception: Here, there, and everywhere – the reception is filled with amazing people and is an awesome chance to network, socialize, and get the 411 on the network’s progress and innovations with the variety of poster presentations. Also, keep an eye out for some Patient Advisory Council members who will be reprising their roles interviewing reception attendees!

 


    • The Learning Health System Today and Tomorrow: The opening never fails to deliver in motivating every cell of every attendee, and – who are we kidding – we always love seeing Dr. Margolis and Dr. Colletti (and, if we’re lucky, they’ll coordinate their outfits!).

 


    • Lunch: Food, food, more food, and lots of networking! We always fill up with some nourishment and get the chance to meet new centers, parents, and the clinicians at various centers that we are humbled to call friends.

 


    • The Learning Health System, The Months Ahead: The closing is reliably the time when you will need a stash of tissues compliments of the remarkable speeches from parents and patients. After the excitement of the weekend and the endless research ideas and connections you’ve developed, the closing is a perfect opportunity to digest (yes, pun intended) the entire experience and head home with genuine motivation that you won’t soon forget.



We can’t wait for the collaboration, the innovation, the passion, the insight, and to continue to watch children and their families living with IBD receive better, and better holistic healthcare.

 

So pack your bags (or join us on Twitter and follow the Learning Session hashtag #ICNLS) and get excited – the Spring Learning Session is just around the corner!

 

Jennie + Sami


Transitioning at Children's Mercy Hospital

When I was little, I had a lilac-purple colored bicycle. There were shiny streamers at the ends of the white handlebars, which would often catch the wind as I rode through a field near our house, my parents cheering and running behind me holding tight to the lip of the seat. Having gotten used to the stable comfort of riding my tricycle around our quiet suburban cul-de-sac, I remember feeling both terrified and thrilled at the expanse of the field and my ‘big girl’ two-wheeler. Learning to ride my bike – like most things in life – was a skill that required a lot of technical and emotional support from others, and a belief that I could do it.

 

A few months before I graduated high school at 17, I went to the hospital with my Mom for the so-called “transition appointment.” We had been sheltered and insulated in the pediatric world, full of pastel-colored murals, teddy bears, and bandages that were cut into heart shapes. The adult medical world was cryptic and distant – a new building, new doctors, new nurses, new everything. While everyone was perfectly polite, the transition appointment consisted of being told which adult doctor I was going to see and when/where I had to show up; there were no choices, no decisions, no questions. And there was no road-map for how to get from point A (pediatric care) to point B (adult care).

 

There are two important concepts that often get conflated: transition is the careful, premeditated, and inclusive process of educating and empowering an individual to be responsible for one’s health, while transfer is the physical change of moving to a new medical facility (e.g., pediatric to adult hospital). Transition is the meaningful process of gaining and growing skills like medical literacy, advocacy, adherence strategies, and so on. It requires a team of people (patient, parent, pediatric and adult doctors, nurses, etc.) working together to empower the patient. It’s the difference between learning to ride that little purple bike in a big field with lots of support versus just being given the bike with no guidance about how to use it.

 

According to Dr. Michele Maddux, a clinical psychologist at Children’s Mercy Hospital, who helped develop their transition program, Mercy’s efforts had previously involved transferring medical records and, “finding an adult provider, with significantly less focus on equipping adolescent patients with the tools and skills needed to successfully manage their health care needs.” Seeing this gap, Dr. Maddux and a dedicated transition task-force set out to create a holistic transition program that managed the clinical issues while taking lifestyle matters and family perspectives into account. They started by interviewing each of the pediatric gastroenterologists (GIs) on service to ensure physician engagement in the project and to capture their unique perspectives. They also created a GI roundtable and invited pediatric and adult GIs to have transparent conversations about transition. This resulted in a provider database and helped to dispel some of the myths that pediatric and adult GIs had about each other. The success of the roundtable and the transition task-force’s efforts culminated in the hiring of a transition coordinator and the development of a transition readiness screener for patients as well as educational materials for patients and families undergoing transition. The educational materials were vetted by Mercy’s general parent and teen advisory boards (i.e., not IBD specific) and by parents of children living with IBD.

 

Cue Jamie Hicks – a perfect fit into the role given her nursing background and a busy mom of three, including 10-year-old Colson who lives with Crohn’s. Prior to reviewing the transition materials, Jamie said, “[i]t simply wasn’t on my radar… I think of him growing up and how the disease will impact his future. But I never linked that to him taking over my ‘job’ as the manager of his health care.” Jamie praised the educational materials as “fantastic”, underscoring the importance of a defined direction and plan over guessing and uncertainty. Jamie’s main contributions were adjusting the material’s language, which she believes can have a large impact on how the information is received and understood by kids and families. According to Dr. Maddux, “Jamie brought a much needed patient/family voice to our materials that gave us a unique opportunity to craft our educational materials to meet the needs of families.”

 

Both Dr. Maddux and Jamie reiterate the vital importance of creating space for parents in research projects. Dr. Maddux pointed to the language and format changes as key edits that would have gone unaddressed without parent and patient engagement. Jamie addressed the critical role parents play as the people who most intimately understand their children beyond the clinic by helping to appropriately tailor educational materials and provide ‘behind the scenes’ information about children's motivations and worries. Similarly, they are both passionate about transition being relationship-based and starting as early as possible so the changes in medical responsibility are empowering and fitting for each child and familial situation.

 

We may not have a cure for IBD, but thanks to the insight and persistence of Dr. Maddux’s team and parents like Jamie, it is possible to implement a comprehensive, team-based transition program that prepares young patients with IBD to manage their own care. We can give our patients the encouragement, support, and information they need to ‘ride their bikes’ with strength and confidence.

 

After dozens of tries back in that field on my purple bicycle, I finally pushed off the ground, my feet finding the pedals and my eyes trained on the horizon, newly sturdy and sure of myself, and off I went pedaling across the field as my parents clapped and whistled. It hadn’t been easy, but I did it.

 

And together, we can make sure all of our kids can do it too.

 


Together

I met with up an old friend for tea. As we were standing in line, she asked about my college friends and how they were doing. I started talking about one, and she interrupted, asking, "Is that the girl with Crohn's?" "No," I said, and named another disease. My friend smirked, and said, "Do you have any healthy friends?"

It's an ongoing joke amongst my family and closest friends that, in order for me to know someone, they have to have a chronic illness. To an outsider examining those I have chosen to be 'my people,' it would indeed seem that having an illness is some form of a requirement - the vast majority of my close friends have chronic illnesses. The natural thought is that we're friends because of being young with chronic illnesses, but that is not completely true.

They did not choose me because of my illness, or in spite of my illness, but rather they chose me with my illness. Living with a pediatric chronic illness has been, in my experience, a simultaneous growing up and growing down: the growing up is bumpy and circuitous, while the growing down is shirking off the medical maturity and fumbling to fit in and understand peers without disease. I have several wonderful, empathetic, incredible friends who - surprise, surprise - do not have chronic illnesses, and these people have been unimaginably understanding, supportive, and encouraging. But, in light of a variety of challenges my friends with chronic illnesses have been facing, I wanted to write this post in explaining the beauty of a friendship steeped in chronic illness.

To my friends with chronic illnesses:

Thank you -

For understanding that when I say I'm having a 'bad day,' I'm really not feeling well but trying to be brave. For sending me funny pictures and sweet cards in the mail. For never replacing true empathy with an easy platitude.

Thank you for seeing the strength in my struggles, the determination in my pain, the resilience in my scars. For knowing that I am not my disease, but like a tree with a missing limb, I am whole even if my body is not.

I am better for being your friend - better for sharing my story with you and better for listening patiently to yours. I am so full of everything good because of your willingness to hear me when I'm terrified and upset, to celebrate my triumphs when I push on, to let me have a moment of fear before you tell me I can do anything.

We are not friends because we are sick - it may be how we found each other, but we are friends because we are puzzle pieces that click together, choruses to the same song, hands that were meant to hold the other. I look at you and see you, not your disease, not your pills, not your doctors, not your prognosis. We see one another when sometimes everyone else can only see the mask.

I hurt when you hurt, but I will always be there for you, just as you are there for me.

This is a thank you, a celebration, a marking of how much your friendship means to me. Words will never do this justice, but I wanted to try.

For now and for always, thank you.

Jennie


Words Into Action

It was a Monday and I had a migraine.

The hospital room was grey and muted.  I was on my side with my eyes closed, trying to wish away the headache. A suave, slicked-hair doctor – the new GI for the week – strode into the room, the curtains whooshing slightly with his arrival, followed by his resident, and my mother stood up from her chair. They all stood at the foot on my bed, a semi-circle, as I pulled my legs closer to me and rolled onto my back.

Within minutes, I went from sleepy and calm to sobbing and furious. I could hear myself talk, I could hear the escalation of my voice and the rising tremor as I began to cry, but no one was listening. Everything I said was countered – I said, “I want to go home,” and the doctor would say, “Yes, but…” and I would say again, demanding this time, “I want to go home,” and the doctor would repeat, “Yes, but…” Finally I broke eye contact with him, my voice boiling higher and higher, and instructed him just to tell me what he wanted since I clearly was not making my point. “Do whatever you want,” I said, “You just make a decision for me and stop pretending like I have a say, because clearly I don’t. Just tell me what you want me to do.”

I am someone who believes in the patient voice, in working with doctors, in pushing for what you think is right, in being persistent. What had happened to that girl and who was this person, someone who just threw her hands up and willingly handed over her decision-making rights to a doctor she’d never met?

It is very easy to talk about change and use wonderful terms like “patient-centered care” and “shared decision-making.” It is easy, and often it is done with the best of intentions. It is much more difficult, however, to put these things into practice alongside busy lives and complicated patients. How do you achieve patient-centered care and shared decision-making with a patient such as myself, one with refractory disease who has ‘failed’ every traditional medication, has already undergone aggressive surgery, and who sits in front of you on her hospital bed, legs folded, eyes blurry with tears, asking you for the rest of her life, and all you can offer is another fluid bolus. What happens then?

In some ways, it was easier as a pediatric patient when I was not responsible for my care in full. And even though now I have legal rights as an adult patient, to decide what I think is best, in upsetting and frustrating situations I do notice myself defaulting to needing my parents. I find often my doctors are talking directly to my parents and forgetting that I am there. And, like that Monday, sometimes I feel like I have no power or ability to direct my care.

For me, there is an incredible and palpable dissonance between sentiments expressed about chronic illness care at ImproveCareNow Learning Sessions and in my own adult medical experiences. The system at play in many adult hospitals is, in various ways, broken and offbeat with patients – nevertheless, it functions ‘well enough’ that it’s left untouched, unchanged, unaffected by the gleaming and exciting collaborative thinkers just an arm’s length away. As someone who has been steeped in medical decision-making literature for the past several years, it feels appalling and shameful to admit that I hand over my care with such frustration and carelessness as I did that Monday. And yet, I’d also like to think that it exemplifies the sheer monstrosity of the challenges and barriers for patients who aspire to be involved in their care. Is that truly such a futuristic ideal? Is there really not room for me in my own care? As a young person with a chronic illness, I have found these types of encounters to be ineffably defeating and disenfranchising – to have to defend yourself, your beliefs, your values, and your preferences to every person in a white coat is offensive. It is as if the doctors claim ownership of your body, as if they can scrape your soul clean, fix your body, and then hand it back to you, as if a disease is your life versus a disease happening in the context of your life.

So what then am I saying about the young child in clinic, who will sit on your exam table, crinkling the thin paper as they climb up? What does all of this have to do with them? Firstly, it is your job – moreover, your responsibility – as clinicians and parents to empower that child in her medical care, to cheer her on, to apply an unwavering commitment and determination in helping her achieve her goals and ambitions. Even though a child does not have the legal ability to choose, there can always be small decisions for them to make (e.g., “Do you want the needle in your left arm or right arm?” or “Which bandage do you want?”). Secondly – and I wish I could say this to every person face-to-face who is reading to convey the seriousness and weight in this – young patients will grow up and will one day be adult patients. Two of the best strengths you can foster in these children are a conviction for medical advocacy and an unbreakable spirit to defend what they believe in. It may sound insignificant or small, but by always instilling a belief of ownership, we are opening the door to true participation in health care.

Because if we don’t tell them, who will?

Jennie

 


Three Stages of an Awesomely Gutsy Learning Session

Patient Advisory Council Members at the Fall 2012 Learning SessionAs Sami and I get super-duper-gutsy-psyched for the ImproveCareNow Fall Learning Session, we thought we’d put together quick snapshots of what an #ICNLS is like from our perspective. And voila, here they are, broken down into ‘Before,’ ‘During,’ and ‘After!

Before:


Sami: The excitement of planning and watching others plan. The Learning Session is a labor of love and - true to ICN's motto of "share seamlessly, steal shamelessly" - so much collaboration goes on behind the scenes in the weeks leading up to the LS. Despite the occasional stress, it's a blessing to be a part of such well-coordinated collaboration. My contributions to the LS are never just 'mine' - they've been shaped by a countless number of collaborators.

Jennie: Out of the mountains of emails and over-excited texts between Sami and I, everything was becoming real as plane tickets were booked and bags were packed. It’s kind of like coordinating a flash mob: dozens and dozens of people, all with the same passion for patient-centered care, group together from all corners of the country, lots of people doing one big dance. A lot of excitement, a smidge of nerves, and so very much gutsiness.

During:


Sami: Connecting with individuals representing all centers and roles within ICN. The PAC reps love meeting you - we want to know how we can best partner with you to meet your needs! I learn as much from casual hallway conversations and introductions at the LS as from the formal plenary and breakout sessions. One year ago, I didn't know my present PAC co-chair until I got off the plane in Chicago - so much can change in one year.
Tweeting, blogging, and sharing what I learn with you!! p.s. anyone can join the LS conversation real-time on Twitter using the hashtag #ICNLS.

Jennie: I remember my very first LS. It was as if I’d known everyone there forever – everyone was incredibly sweet and lovely and thrilled to have myself, Sami, and Jill (our amazing former PAC chair) there. I’ll never forget during the opening reception I was introduced to a few people, first names only, and it wasn’t until my head stopped spinning and I put two and two together that I realized I’d just met the biggest movers and groovers in ICN and the C3N Project. What struck me then was that they were just ordinary people who could hold conversations with me and I wasn’t stuck in some small ‘patient only’ box. The LS truly is an environment filled with excitement, respect, brilliance, compassion, and the unwavering attitude that we can all learn from one another (purposely ignoring the standard hierarchy of doctors versus patients/parents, it is doctors and patients/parents).

After:


Sami: Reconnecting and making plans for collaboration with those I've met over the weekend. The LS is "the charger" of ICN - it propels us through the next six months.
Working through the pages and pages of notes I'll leave the LS with - despite the work involved, the LS is magical because it allows you to come with scraps of ideas and gain the inspiration you need to transform those ideas into reality. Sleeping a little - and dreaming about the next Learning Session!

Jennie: There’s always too much excitement, too many possibilities, and so many new connections leaving the LS to get any sleep on the plane home! And that’s what’s so incredible and indescribable about the LS: we pass around and borrow ideas and fire from one another and there’s always so much to start doing! And importantly for patients and parents, we don’t become forgotten in the months between (we’re not simply a perfunctory part of the LS and then we’re dropped), if anything I’ve seen the commitment to meaningful patient engagement grow each time!



We can’t wait to update you after the LS!  But why wait? Learning Sessions have their own hashtag on Twitter so you can keep up with what's happening. Be sure to follow #ICNLS  – and we’ll be sure to tweet as often as we can!

J + S


Blast from the Past

After a morning GI appointment, my mom wanted to get a coffee before she took me to work. We drove to a local coffee shop and I decided to go in with her to grab a tea. We placed our orders, paid, and as we were leaving, I caught a glimpse of a customer sitting at a table and suddenly recognized him.

 

He was a clinician from my pediatric hospital – someone I had always thought of as particularly kindly, someone who had incredible bedside manner and a great comfort in speaking to me, and someone who I hadn’t seen since high school. Since I knew I would regret it if I didn't, I walked over and said hi. He promptly hopped up from his chair, reaching out his arms for a hug, and asked how I’d been.

 

Blast from the pastIt was this funny moment in which I was no longer a child or a patient but just someone else in a coffee shop - grown, with a hospital ID badge slung around my neck. He couldn’t believe how old I was – “How is it possible you’re done college?” – and grinned at me as I caught him up on my life. I had sent him pictures after I hiked Machu Picchu. He said he’d been to Peru since and thought about me, trying to notice any similarities between my pictures and the Peruvian surroundings. When I told him about graduating with double honors and wanting to pursue a PhD in clinical psychology, he looked at me, smirked, and said, “That does not surprise me one bit.”

 

He said he was going to a meeting with some of my other former clinicians, and asked if he could pass along the full update on me. Of course I said yes, feeling a little like a movie-star that people cared what I was up to. He will always be one of my favorite clinicians. He made me feel as a kid – and in our short coffee shop interaction – like a whole person with more to offer the world than an over-sized medical chart. I believed in myself not only because my parents were supportive, but because at my sickest I had clinicians like him who saw beyond the medicine to the person.

 

Monday was my first day back to work after a two-week hospital stay. I walked into my office, collected hugs from my lovely co-workers, and set about logging onto the computer and catching up on emails. The fabulous boost of seeing that clinician in the coffee shop stayed with me. At one point during the day, I saw a patient for one of our studies. He was a gentleman in his 70’s and was in the surgical clinic with his wife. Before I stepped into the room, I made sure to look through his chart and get a sense of who he was – not just what surgery he was having – so I could be engaging and receptive to him as a person and not solely as a patient. I had the loveliest conversation with him and his wife, going out of my way to be open, respectful, personable, and accessible. For example, in going over the study questionnaires, I wanted to be transparent and would turn the page around to show him and his wife what the pages looked liked, explaining what I was asking and writing down so that it didn’t seem secretive or hidden. He would laugh and noticeably relax, and as they saw me throughout the day, our relationship continued to grow so that when I see him after his surgery, I will be a familiar face.

 

This perhaps seems silly to write a post about. But this is what I hope you've read between the lines – the person inside the patient matters. You never know who’s sitting in front of you, because it’s never just a person of a certain age with a certain disease. Especially in pediatrics, your patients are like caterpillars waiting to become butterflies – you have future doctors and advocates and economists and dancers and athletes and poets in front of you. You have children who are blossoming into themselves, with diverse talents and abilities. As clinicians for children, you have a unique opportunity to build and strengthen relationships with them as they grow emotionally and physically. Your patients will never forget you – good or bad – but why not make the memories they carry with them about how much you supported them?

 

Because who knows, you just might run into them in a coffee shop one day.

 

Jennie


A Gutsy Welcome to our New Patient Scholars!

A hugely gutsy drum roll for an exciting announcement! The Patient Advisory Council (PAC) has two new patient scholars! The Patient Scholars program was pioneered as an initiative to elevate the voices of selected members of the PAC for one full academic year.  Read more >>

 

We are thrilled by their outstanding applications, determined spirits, and amazing accomplishments - we cannot wait to continue to work with them to build the PAC and ImproveCareNow stronger day by day!



Without further delay, let me introduce our wonderful new Patient Scholars - Katherine & Tyler!!

 

Katherine: Hi everyone! My name is Katherine and I am incredibly honored and excited to have the opportunity to work with the C3N and ImproveCareNow communities as a patient scholar. I recently graduated from John Carroll University as a marketing and human resource management double major. I have a huge passion for the IBD community and extending networks of care, awareness and support in any way that I can. While I am technically not a "pediatric" patient anymore, I was diagnosed with Crohn's disease as a young teen and have had to navigate some challenging transitions in life while living with this illness. My involvement began about ten years ago around my time of diagnosis. Starting as a youth ambassador for CCFA in my hometown of Columbus, OH to becoming the Co-Chair for CCFA's National Council of College Leaders (NCCL) during college, I have truly found my passion for empowering fellow patients by sharing my own experiences and contributing to education and awareness initiatives. I hope to bring some new ideas and fresh perspective to this group and I'm excited to attend the fall learning session to not only see all of these creative minds and networks at work, but also to learn as much as I can as well as share my experiences with others.

 

Tyler: My name is Tyler and I’m a high school senior from Westerville, Ohio. I am very involved in my school; being a peer minister, student ambassador, and member of the ski club, math club, and Italian club. I play tennis year-round and for my school as well. I’m a little bit unique in that my family has moved around multiple times. As a result I was diagnosed at Riley Hospital for Children, was a patient at Children’s Hospital of Philadelphia (CHOP), and am currently a patient at Nationwide. I have had Crohn’s disease for 8 years now, being diagnosed when I was only nine years old. My disease has had a big impact on my life and has driven me to be active and make a difference in the IBD community. I have become very involved with ImproveCareNow (ICN), CCFA, and even started my own IBD fundraiser. The IBD community has a special place in my heart because I know firsthand the impact the disease has.   I am very passionate about making a difference and being a voice for patients. I have been a part of ICN for over 2 years now and am very excited to further my involvement as a patient scholar. It is such an honor to be a patient scholar and I am most excited to be attending the fall learning session.  I’m very excited to further my involvement this year as one of the patient scholars!

 

Welcome to Katherine and Tyler!!!!!!

 

J + S


Need to Know

 4.png

 “Actually,” I asked. “Do you have a smaller tegaderm to put over my port?”

The nurse, who’d already begun to open the larger salty green colored package stopped, looking up at me, and asked another nurse in the room to grab a smaller dressing.


The Kindness Project

Throughout college, I worked in a research lab studying coping strategies of women who are HIV+, and one thing that we looked for in each participant was ‘mindfulness.’ To be mindful is just what you might think: being conscious of what’s going on, what you need, and what others need around you. Mindfulness is being in the moment, although not so much being spontaneous as being considerate to yourself and to others. If you ask me, mindfulness is one of the hardest skills to train yourself on and put into action.


Staff Only

If ERs gave out awards to their most loyal customers, I’d be a no-brainer for the #1 Customer award. But, since I live in reality, I collect medical bracelets in lieu of my big award.

An ER triage room loaded with medical suppliesEnding up in the ER on a Wednesday around midnight was an unexpected way to spend the night. When my Dad and I started walking toward the way-too-familiar ER entrance, I turned to him and said, “This is how I spend a night out on the town.”

Jennie: 0, Body: 1

Ironically, my ER-dash had nothing to do with my Crohn’s, but rather a separate condition that leaves me prone to blood clots. I’d developed some chest pain earlier in the evening and given my odd combination of past history with clots and the fact that I'm now working in cardiac surgery (and being all too conscious of heart problems), my parents and I figured safe was better than sorry, even if it did mean adding another metaphorical stamp to my ER frequent flyer card.

FYI: Chest pain is like the golden ticket in the ER – you whiz right in and before you know it you’re strapped to an EKG and instructed to stay still (warning: not an encouragement to report chest pain to triage unless you have it!). For an ER that I’ve spent way too much time in, this was by far the quickest trip to a room yet, and as I was being taken to the room, I noticed a sign that bugs me every time.

STAFF ONLY

Capital letters, bolded, just in case you couldn’t read it on the first go-round. I remember the first time I saw such a sign, in my elementary school, walking by the staff room and feeling indignant. Staff only? I thought to my self. If staff are people who work somewhere, then I’m staff too because I work at school. Why are students not considered staff? Yes, I’ll admit that staff has a more nuanced meaning than simply ‘working’ at a place, but even so it bothered me then and it bothers me now. Especially given that I actually am a hospital employee now, albeit not in the ER, do I dare cross the threshold of the STAFF ONLY areas?

Spoiler alert: I did not stomp through the STAFF ONLY hallways proclaiming that I too was staff, but I did something better. The ER resident assigned to my case was a young, dry-humored doctor who seemed patient and kind even if it was the wee hours of the morning. When he asked for my past medical history, I squinted at him and told him I wasn’t really sure where to begin. I began listing my medical conditions and issues as he busily scribbled it all down, asking some questions and prompting me to recall other relevant medical history. Every addition to the list made him raise his eyebrows and I couldn’t help but laugh as I continued to rattle off problems – truly, it would have been kind of funny if it wasn’t so ridiculous. I intentionally used all of my medical jargon to show him that I knew what I was talking about. He smirked at me and said, “When are you going to med school?”

At one point, he looked up from his paper and said, “You know, I thought I’d come into the room and meet this 21 year old girl with multiple problems and risk factors and she’d be all whatever, but instead I come in here and you’re all bright and happy, I’m just like, I don’t know.”

“Well,” I told him. “You know the body, even when it’s crappy, is incredibly resilient and you can still do everything and do what you want.” I proceeded to tell him about graduating on time from college with double honors, and he held up his hand for a high-five. It’s official folks: high-fiving a doctor has been crossed off my bucket list. And to be clear, it is not that I think I’m extraordinary, but I do think I am normal and I think that is exactly what struck him.

I hope that he remembers me - and the notion that living with a chronic illness is still living - years from now when he’s a little older, a little greyer, and has his own patients without an attending around to keep tabs on him. I hope I taught him something that he couldn’t learn in a textbook. I hope I earned my honorary medical degree by showing him that doctors can and need to learn from patients just as much as they need to work with patients. There may be hallways marked off with STAFF ONLY, but that at the end of the day, it’s not about labels or the costumes of lab coats or Johnny shirts, but rather about the collaborative relationship, the give and take, the listening and the caring between doctors and patients.

Because we’ll get a lot farther if we work together versus working alone.

Jennie


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