February 27, 2011

VU+UII = An Awareness Dream Team

It's been a long time coming, I know, but I just may have FINALLY found a few minutes to let you know how the panel and photo display I've been yammering about for weeks came off!

Invisible Illnesses Made Visible
There's no way you can tell from this photo just how big this display is...

 ...So here's one that gives you a little perspective!

On Tuesday, I made impressive time getting from my client site to Villanova University's campus.  Pulling on campus felt very natural (I did it for 5 years afterall), but also kind of...odd.  While doing my awareness projects with the school are some of my favorite things, at times like these it reinforces the fact that I am no longer a student.  This is no longer my home.  Strangely, the main way this manifests itself is in the excitement people have when they see me - frankly, no one gets THAT excited to see a student.  Oh well, I'll call it one of aging's silver linings (and it's FAR more welcome than the exasperating 'silver' hairs I keep finding disturbingly on my own head).

But I digress.  

First, let me fill you in on the basics.  The panel consisted of myself representing autoimmune and autonomic disorders, obviously; my brother Jon (representing mental health and neuro-developmental disorders and the male perspective); and my friend Bridget who I met early in Freshman year when we parked in adjacent handicapped spots on campus - I guess in this case it was both shared experience AND proximity that bonded us:)  Bridget was there to represent Cerebral Palsy & cancer.  Our panel (and the display of the photography project) was organized through the Office of Health Promotion with two of my FAVORITE people, Kathryn and Stacy, and was hosted by Villanova's chapter of SNAP (Student Nurses Association of Pennsylvania).  We've worked with both the OHP and SNAP in the past; they are very valuable allies in the effort to spread awareness of invisble illnesses.

Shortly after I got there, Shawn arrived with my brother.  Shawn picked him up from St. Joseph University so they could make it over on time and my parents didn't have to get there until closer to the actual start time.  We headed up to the student projects on display where the SNAP members gathered for pizza before the session.  On the way, we stopped outside the auditorium where the panel would be held to see the Invisible Illnesses photo display!  It was set up by itself, which actually enhanced it's impact.  As a self-contained display (I'll come back to these details in a minute), it draws people over to see what it's all about.  I can't even express my excitement and sense of fullfillment when I stood, anonymously, across the atrium and watched people walk over to the display.  (This is when I snapped the photo above.)  I noticed a few things about those who stopped at it (at least while I was there):
  1. They usually came in pairs - either both walked up to the display or one walked up and called a friend over.
  2. They actually moved back and forth in front of the display to examine all the different areas!  When they would take a step after a few moments standing there I figured they were moving on...but they weren't!  They were truly checking out the whole thing!
  3. Invariably, before finally moving off to their next destination, one person in each pair would point to the pictures in the center at the top - pictures of who Shawn, Bridget, and I dubbed our "Lyme Teen Beauty Queen" (I'll explain this later, too). 
After admiring the display's admirers for a few minutes, we continued to the second floor where SNAP was gathering.  A few minutes later, Bridget arrived as well.  None of the students there actually knew who we were, so we blended in for a few minutes.  One of the student projects dealt with depression and body-image problems on campus.  Now, I have to say, as vital as these topics are and as much as society needs to KEEP addressing them in the public eye, I was a little wary of how this project would be presented.  Let's face it - it's a critical topic but one touched on frequently, and I somewhat doubted they'd find a way to present it that would add new value.  Thankfully, I was SO wrong!  The display was wonderful - I found myself reading everything on it and being intrigued.  One of the students who worked on the project was sharing some of the details and info about the project, and asked Bridget and I to take a survey about body image.  Even after asking how to respond to the question of what year we were in college (Bridget asked "what if we're not actually IN college right now"), the girl still hadn't picked up on who we were...so of course we had to have a little fun with that.  After listening to everything she had to say as if we'd never heard of it before and asking a few intentionally naive questions, we finished the survey.  When I handed mine back to the student, I asked her name, then shook her hand and said "nice to meet you, I'm Jen Pettit and this is Bridget"!  It was great, a true sitcom moment!  She started laughing and got a little embarassed, and told us "but you really looked like college students!".  Between you and me, I realized later that was a risk - what if she hadn't recognized our names?  Then I would have been embarassed:)  Fortunately, she did know who we were (Stacy and Kathryn probably talked about us a lot in their sessions) and we all got a good kick out of it!  In retrospect, I probably have an underdeveloped sense of humor....

A few minutes before the meeting and panel were to start, we relocated to the auditorium where we ran through the introduction with the student who had been selected to give it.  She introduced us briefly one by one, and each of us stood when she got to our slides and explained a little about what we do in terms of health activism, and also what we were involved in on campus as students (so they could relate to us as whole persons and not just walking talking medical diagnoses).  We were brief, intentionally.  We wanted to give the audience some context but leave as much time as possible for them to steer the conversation through their questions.  All the questions were good ones, and a few were particularly insightful or interesting.  One person asked about the experience my brother and I had growing up together, having a sibling to discuss life with an invisible illness with (interestingly, we didn't discuss it growing up, partly because of the nature of my brother's diagnosis of Asperger's.  But I still thought it was a great question).  Another asked about how we each make the decision if/when/how much to tell people about our conditions.  The final question was what we want them, as nursing students, to know or keep in mind.  I was WAITING for that one:)  In short, our answers were basically about bedside manner and listening to patients.  We pointed out that while they may have spent their entire shift taking care of whiny patients who needed mundane or even disgusting things, but ultimately at the end of their shift they can go home - their patients can't leave their bodies.  And, we acknowledged, some of them may have their own conditions they battle...if so, they should be even that much MORE understanding of the 24-7 challenges their patients have.  No one WANTS to be in the hospital, to need a nurse to do everything for them, to be revealed to others in their most humble and sometimes embarassing state - who needs a nurse with an attitude on top of it?  It may just be wishful thinking, but I honestly do think the audience seemed to really take our answers to heart.  They really seemed to be invested in the whole presentation.  I'm proud to be an alumna of a school with this quality of students seeking to be the best professionals they can be.

I mentioned our "Lyme Teen Beauty Queen"; this is Jenna, a 17 year old high school student with severly progressed Lyme disease as well as Type 1 Diabetes.  Jenna became one of our most powerful contributors for this project in particular.  As our audience were college students, they could easily relate to a girl her age.  Her pictures from her prom show a petite and very pretty girl in a fairytale fuscia strapless dress with full ballgown skirt spinning in a sunlight field...but they also show her picc line (long-term IV port left in the upper arm for receiving chemotherapy treatments for her Lyme in her own home).  Another picture shows her receiving a treatment through this line while her golden lies on the bed with her.  Furthermore, Jenna entered her county's teen beauty pagent - pic line, wheelchair, and all - and WON.  As I told Jenna and her mom, Lori, I am inspired by Jenna's actions...but also by her community.  As a patient, it makes me feel hopeful to know there are people like Jenna's neighbors, who listen to what she has to say, accept her and her conditions, and work together to raise her up.  You'll have to excuse me, even as I write this I'm tearing up (yet again):)  I encourage you to take a look sometime at Jenna's blog and read past entries to hear her experience, views, and ambitions in her own words.

While Jenna's story had such a strong role in our display, you need to understand it was not at the expense of anyone else's.  As you'll see below, EVERYONE who sent me pictures was represented in the display; the looping slides played before the panel began showcased Jenna and 3 other contributor stories; and no one person's story - not even Jenna's - would have been enough by itself to have the impact and momentum we have together.  This display and project on the whole are literally FAR more than the sum of its parts, which means each and every one of you who sent in pictures or shared the project with your communities had an intergral role in its success.  Congratulations:)

I promised to give you more details about the photo display.  Composed of 5"x7" photographs on a 4'x6' sheet of plywood, we couldn;t even fit all of the photos you submitted!  We did, however, include at least one photo from each contributor, so ultimately you were ALL represented, as were ALL your conditions!  Through the images we received from 25 contributors in 4 countries, we represented the following 39 conditions:
  • Attention Deficit Disorder (ADD)
  • Addiction
  • Antiphospholipid Antibody Syndrome (APS)
  • Anxiety
  • Asthma
  • Babesia
  • Bartonella
  • Behcet's Disease
  • Charcot Marie Tooth Type 1A
  • Chiari Malformation Type I
  • Chronic back pain
  • Chronic Inflammatory Demyelinating Polyneuropathy (CIDP)
  • Complex Regional Pain Syndrome
  • Depression
  • Diabetes (Types 1 and 2)
  • Dysautonomia
  • Fibromyalgia
  • Gastritis
  • Gastroparesis
  • Generalized Pulmonary Insufficiency
  • Hashimoto's Thyroiditis
  • Localized Scleroderma
  • Systemic Lupus Erythemetosus (SLE)
  • Lyme Disease
  • Osteoarthritis
  • Panic Disorder
  • Polycystic Ovarian Syndrome (PCOS)
  • Post Traumatic Stress Disorder (PTSD)
  • Raynaud's Phenomenon
  • Reflex Sympathetic Dystrophy
  • Reflux
  • Renal Disorder
  • Rheumatoid Arthritis (RA)
  • Sarcoidosis
  • Scoliosis
  • Seronegative Antiphospholipid Syndrome (APS)
  • Sjogren's Syndrome
  • Sleep Apnea
  • Syringomyelia
In the photos of the display, you may have noticed 4 sheets of paper.  One is a list of the contributors (including "anonymous" for those who did not want their names included) - this list was also provided to the University's campus ministry program and the contributors along with all others suffering with these kinds of conditions have been the focus of prayer intentions for the past few weeks!  Another of the papers included lists the 39 conditions seen above.  The two sheets in the center explain what the display is all about.  I want to share with you what I wrote, trying to capture both the desperate urgency of our conditions as well as the hope we keep alive:

This display represents 25 men, women, and children from four countries who live with one or more of the 39 chronic and "invisible" conditions listed.  Here, they have revealed to you the "hidden" side of their lives - the things they require to get through the day, the medications they need just to survive, and the scars & marks they usually conceal.  Fear, shame, and stigma often force them to hide these truths.  Only education and society's acceptance of a person for everything they offer can change this story.  
For some, this is the first time they have revealed these images to anyone.  Today, they have stopped hiding.

Please say a prayer for those pictured here - as well as the millions of others who are forgotten, mistreated, and ignored every day - that love will prevail and awareness and research for treatments & cures will follow. 

I'll leave you with those words, and my thanks to the following contributors to this display.  This isn't the end of this project - we have a wide variety of opportunities to keep this effort going and to expand on it that I'll be pursuing over the coming weeks and months.  If you weren't able to contribute on this round, please still feel free to contact me and to keep your eyes open for the next projects to come down the pike!

Elaine Bergeron
Janice Bittner
Melissa Callis
Lisa Copen
Melissa Croft
Sarah Curtain
Charlotte Dorfman
Jeffrey Dorfman
Priscilla Ervin
Jenna Hansroth
Genevieve Henry
Amy Kiel
Janice Laurence
Dawn Lewis
Maria Mooney
Julia Oleinik
Julie P
Jennifer Pettit
Lucia Pires
Karen Pontarelli
Jane Luann Smith
Matia Spicer

1 comment:

  1. Thank you !
    That's all I can say right now.


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