You Are Loved & Important in My World

Photo found here. 

Trying to maximize my membership in the amazing powerhouse that is WEGO Health, I posted a discussion last night about a particular struggle I'm having in my online communities.  Responses are trickling in ... and the buzz around the issue promises many more in short order.  This is certainly a question I think we'll be kicking around for some time. 

In the meantime, however, I wanted to share with you this struggle the "health community leaders" took on, as well as how we are working to aleviate it.  I want you to know how hard this group works for our communities, so you understand that we are not just writers here to impart our so-called "wisdom" and move on, but that we are listeners, carers, and supporters here for you.  We love to share our experiences - but not as much as we love to INTERACT with you and try to be what you need us to be.  My post is just one type of issue we work on, alongside topics such as providing real value to community members, writing purposeful posts, and finding out what concerns are top for our members.  Many of you are leaders of your own communities, so you understand how much care we put into what we do.

Lately, I'm struggling with how to work with people who bring negativity into groups.  This is a problem I've seen recur in many places, but I'll use my most recent example from Facebook.  In one group, a person asked for some positive things any of us have gained from our experiences as chronic patients.  I was so excited, I quickly jumped in with my two cents.  A few others followed suit...then things took a turn.  A few people shared their frustrations with the world (which are EXTREMELY valid, of course!), but in an overwhelmingly depressing way.  They shared their decisions to simply "shut up", "keep it to themselves", and "stop bothering" everyone else.

To be totally honest, I am a bit unhappy with them for doing this in a conversation specifically asking for positives.  If they really had nothing to add and wanted to share their frustrations, I think it would have been more appropriate to create a new chain.  But, it wasn't my post and it's not my place to say, so I haven't.

What I did, however, was attempt to inject some positive back in.  I wrote another comment, insisting that as real as their bad experiences have been, there are still a lot of people out there who do believe them, support them, and want to talk with them.  I also discussed some options & resources out there for trying to communicate with friends, family, & doctors who are dismissive at best.

The reaction I got was someone telling me they were just trying to share their frustrations and "someday they'll learn to just shut up".  Now I'M so frustrated.  Another person has been commenting to this poster as well, suggesting that she sounds truly depressed and encouraging her to seek help for the depression.  I added one more comment trying to convey that "shutting up" is exactly the opposite of what I'm encouraging.  I said, tell me anything you want including these bad things, but at least feel a tiny bit better having done so knowing that I do believe, care, and am not the only one!  This person has since posted again, sharing a very scary train of thought...but finally ending on the note that perhaps they will try to talk with us more in the group and see if it can help them.  I have no idea where this will go.

I know from past experience that I may have completely missed the mark here.  My best intentions may have annoyed her instead of encouraging her.  I'm sorry if that's the case, though I can't really regret having said what I did because I thought it through to the best of my ability.  But, it still left me confused, frustrated, and out of ideas.  So I turned to my handy-dandy WEGO community, and posted a discussion on this topic.  I must have hit a nerve because by the next morning there were Tweets and Facebook posts flying with links to the discussion.  It makes sense - in that community of leaders, we must all run into this same problem.  The impression I have is that it isn't an easy question for anyone - many people seem to be reading the discussion but are still considering their responses before posting.  I'm really looking forward to what my peers will say.

In particular, I posed these questions:
Do you run into similar problems in your communities? 
How do you balance wanting to encourage positive behaviors without isolating those who really need to vent? 

The worst part of the conversation on Facebook was when the poster felt that I hoped they would "shut up".  People need to vent, to be validated, to be heard.  I believe we, as chronic patients, actually owe it to each other to hear the negatives when people need to release them.  But we also deserve to enjoy ourselves and have a place to turn that provides a reprieve.  Some of us even use a direct approach where we vocalize 'positives' and hope as much as we can.  What are some ways to balance everyone's needs, and support those who are down without letting everyone wallow in despair?

As more replies are posted to my WEGO discussion, I'll try to incorporate them into my activism activities.  I welcome your thoughts on the topic if you have any you wish to share.  Above all, I hope you feel as loved and important and we hold you to be in our hearts.  Everyone needs to know someone's looking out for their happiness:)

Photo found here.

"UII" Are A Family

Miles 4 Mark Team at the 2010 Light the Night Walk

“UII” Can Spread Hope!

Cancers, especially blood cancers, are part of the family of ‘invisible illnesses’.  Patients have few (if any) outward marks that indicate to others the life-threatening battle they are facing.  That’s why it came as such a shock to my family when Mark, my husband’s step-father, was diagnosed with Lymphoma in 2008.

My Family's Story

Mark is a bear of a man; a true ‘gentle giant’.  He’s soft-spoken; you can count the words he says during dinner on one hand, and he’s never riled by the boisterous family activity going on around him.  He’s the type of guy you can’t imagine getting a splinter, let alone a disease that carries such a terrifying potential outcome.

The 16 months after his diagnosis went surprisingly quickly, as Mark began chemotherapy treatments and the agonizing waiting periods.  Updates came at bi-weekly family dinners, with rarely any mention of side effects or the emotional strain this had to have caused.  An unexpected update came the day my mother-in-law, Debbie, called to tell us Mark had been declared in complete remission.  Debbie didn’t cry when she told us Mark was diagnosed, but she cried when she told us he was cured.

After this pivotal day, we found out how Mark & Debbie got through all the treatments, scares when his progress wasn’t as anticipated, untold side effects, and “wait & worry” times.  They had the LLS.  This organization provided my family with the resources, experience, and support they needed to maintain composure throughout the process.  Debbie described how they pointed Mark in the right direction at various turning points.  Then ‘Silent Mark’ started to talk.

Ever stoic, Mark never got into the details of what he went through with his treatments.  Other than a buzzed haircut and light appetite at those dinners, I may never know what effects he experienced.  But I know what the LLS means to him.  I know his passion to support the organization that supported him has broken his shell, and is infectious to the rest of us.  Mark joined the executive committee for the 2010 Light the Night walk, and our family fell in line behind him.  We learned that innovations developed with funding from the LLS are often repurposed to battle other cancers.  I knew that it was in part because of them that my own father had more reason to hope when he had his kidney cancer scare months later.

“UII” (Understanding Invisible Illnesses) aims to utilize the power of collective knowledge by pooling the information, resources, and experiences of many patients and caregivers with the purpose of benefiting others and ultimately spreading hope.  The LLS epitomizes these goals.  Throughout the year, we receive messages from the society sharing the hope-filled stories of previous patients and the relief felt by those who’ve been touched by the LLS’s programs.  As I mentioned, the LLS funds research and innovations that are frequently recycled for other cancers & diseases.  I’ve met with regional organizers and a national vice-president from the society, and can vouch for the enthusiasm with which their people approach their work.  “UII” are proud to support the LLS by joining the walk and encouraging donations.  They’ve given continued life, connectivity with other patients, renewed hope, and more to thousands of people already – the least we can do is give a little bit back.

As you know, my policy is to only actively fundraise among my community for 3 causes in the year which are especially close to me: Sjogren's (my condition), Autism (for my Aspie brother), and the LLS (for Mark).  See my fundraising page here for information on the LLS or make a donation.  Please use the share buttons below to post to Facebook, Twitter, or email your friends.  And thank you, as always, for your support.

WEGO Webinar on IRL

 Photo found (and subsequently photoshopped) here.

Ok this one cracks me up just a little bit. 

Sometimes I ask myself questions to assess what I'm doing with my time and how well I'm doing it.  Lately, one of those questions has been "in relation to my role as a health activist among activists, what do I bring to the table?  What value do I contribute?  How am I unique in this community and how can I leverage that?".  And no, I'm not being self-deprecating or modest; I KNOW that I add value, I'm just trying to focus in on how exactly I do that so I can do it better. 

My age is sometimes an oomph factor...though less and less these days (darn kids speaking up and making me feel old).  A pretty solid perspective I bring is that of a working professional & chronic patient.  I like this role, it's become one of my favorite angles to portray.  I think my story is inspiring - not even so much because of what I do to make this work, but because I can go out there and HONESTLY speak from the heart about cooperative employers and trying to make accommodations a viable solution.  I know many people listening either truly can't carry the workload or will only be able to for a while longer, but it always helps to have a real basis for hope for the future.

In the past few months, it became obvious that the other reason people are interested in my work is because of my experience with IRL - In Real Life - activism.  I think you all know some of my stories about presentations at Villanova (if not, go back a few posts), and of my new hat as a Sjogren's Awareness Ambassador (and on that note, remind me to tell you about the VERY cool things going on with that soon).  I've even had the occasional friend ask for my thoughts on some IRL ideas of their own.  I began IRL, then moved online, and LOVE to bring them together (my recent panel appearances related to social media speak to this idea). 

So, how did WEGO Health, the trail blazers of all things activist-related, decide to make use of my experiences?  By having me do a webinar on IRL activism.  That's right, a WEB-BASED session on doing things in-person.  I love it!  How much more to the point can you get?  We don't exist in isolation; we aren't just a Twitter persona OR a face behind a podium.  That would be like saying we either have one symptom or another, only see one type of specialist, or even that we only enjoy either the ice cream or the cherry on top!  Ridiculous! 

I do Tweet, blog, Facebook, and play with a variety of online tools...but I also talk, educate, coordinate, and put myself on a stage, or in a classroom, or in an audit room where I simply won't stop "sharing".  I get excited when I bring these worlds together; synergism is an awesome thing.

You knew, of course, that this post could only end one way - with a link to sign-up and a call to action: register now to attend the webinar!  Once you spend the grand total of 20 seconds or so to register, you'll receive a link and instructions for logging in on Thursday (5/26) at 7:00PM ET  You are able to submit specific questions ahead of time, as well as during the program via the webinar tool and even on Twitter using the designated hashtag!

WEGO Health Activist Speakers Bureau

I just joined the WEGO Health Activist Speakers Bureau! As you know, I’ve already been able to do two live panel presentations with WEGO, along with three upcoming web/video based projects. So, when I received the email informing me about their new Health Activist Speakers Bureau, it seemed obvious I should formally sign up to keep these opportunities coming!

Signing up was easy and took just a couple minutes. I indicated a few areas/topics/conditions I feel qualified to speak about, my willingness to travel, and a comment about my favorite/most successful project to date. Voila! I’m in on the list!

I thought some of you might be interested in learning more about it as well – it’s a great way for Health Activists to share our stories, raise awareness and get the word out about the work we’re doing. Don’t worry if you don’t have a “health activist speaking” resume, you have experience living with your challenges, communicating them to others, and an interest in developing understanding across society. But, if you are interested but hesitant, feel free to ask me about my experiences presenting with WEGO. I’d be happy to discuss your concerns! And, submitting your application won’t obligate you to participate in any specific activity, so you can always decline if you are uncomfortable.

Members of the WEGO Health Activist Speakers Bureau receive exclusive invitations to present at conferences, speak to members of the media, and be featured on WEGO Health.

Interested in joining the WEGO Health Activist Speakers Bureau? Apply today! It only takes a few minutes and they’ll email you as soon as they have opportunities relevant to you and your interests.

Guest Post: A Very Special Note

This guest post is courtesy of my brother, Jon Dorfman.  I've mentioned him before, most notably in my post, My Oxymoronic Brother and for his participation on the II panel for the VU + UII project in February.  Jon has Asperger's Syndrome (this makes him an 'Aspie'). 

Misdiagnosed as a toddler, he went through many rounds of added and revised diagnoses until he was finally matched up with this condition on the 'high functioning' end of the Autistic Spectrum at 8 or 9 years old.  Fortunately, his theraputic early school environment had been right either way, and he had every support therapy/service our parents could arrange to help him actively learn things that are subconscious for us neurotypicals (NTs): how to communicate verbally, to relate to people around him, and other social skills needed to succeed.  Some didn't work so well and there were P-L-E-N-T-Y of setbacks, but even if it felt like 10 steps backward, there was at least the eleventh step forward to hang onto.

In college, Jon became HIGHLY involved with the Kinney Center, acting as a summer camp counselor, school-year social skills instructor, and resident media darling.  You can see just a few of his interviews (articles and videos) here: Kinney SCHOLARS Profile, Philadelphia Inquirer story, Twitter, his startup website, or his 2nd NBC interview.  Google him if you want more, I'm tired.

Jon wrote the Facebook note recreated below immediately following his graduation this past Saturday from St. Joseph's University.  It is addressed to his friends - friends he made in college and who filled a social void in his heart with amazing speed, affection, and compassion.  Even though he (accidentally, I'm quite sure) left out his favorite sister, his note is a rare glimpse into the SOUL, the emotion, the heart, and the logic of an 'Aspie'.  When something in it reads strangely, pause to understand that it is a unique expression of something we were told Jon would never be able to communicate. 

Hear the 'voice' of Autism once the shackles are broken...or, once we've learned to put them aside.

A very special note to EVERYONE who helped me get through despite myself.

So, let's start out with a simple advertisement, shall we?

Fine Arts Major: 4 years.

College Education: $120,000.

Yelling at the Registrar staff every God-damned semester: 40 courses.

Increasing to anxiety levels untold of for centuries while waiting for grades: 124 credits.

Graduating 2nd out of 1,112 students despite all odds and predictions: PRICELESS.

I realize that I would not have made it this far without the help of several (teams of scores of you) people in my life to keep me going.  I was never supposed to reach college, much less graduate from one. (The official Rub-it-in-the-doctor's-face Award goes to the doctor who thought I was mentally challenged based solely on the fact that HE did not realize Crayola had changed the name of a crayon from "flesh" to "peach" when I was two. Congratulations! You're a freaking moron!) But there were many people who never gave up on me, even when I wanted to.

I can still remember my anxiety spat with my parents that I felt that I couldn't go through with college right before the first day of Freshman year. They calmed me down and persisted that I could. I got to college, went on a couple of tirades, and landed in some hot water in the first semester. Rather than kicking me out all together, the University saw my potential before I even did and gave me a second chance to pull myself together. So, I did just that.

The second half of Freshman year was a depressing time for me. But those who mattered didn't mind, and those who minded ended up not mattering. They reinforced in me, the idea that I was never alone, despite my being single and never having gone on a date before. My friends actually cared about me, and that was empowering to me to say the least.

From September 2009 to October 2010, I suffered 13 months of a debilitating depression.  Debilitating to the point that I needed daily reassurance that I was a good person, and that I had Goku-level amounts of potential. My friends are pretty much (in my opinion) the only reason I survived Junior year emotionally intact.

And now, I've completed my finest hour thus far. I have graduated 2nd out of 1,112 people in the Saint Joseph's University Class of 2011 (that is 2nd by virtue of my placement in the line, not by GPA). I defeated all of the odds that my doctors placed on me when I was two-years-old.  Much more to the point, the people who minded and didn't matter... they were at least a year ahead of me during my Freshman year. I ended up graduating before a vast majority of them. (One person comes to mind, who is entering his 8th year Undergrad at SJU next year [with no known or aparent reason]. His parents must be so proud...) They claimed many battles over my peace of mind, but Karmic Retribution helped me win the war.

Much more to the point even than that, I reiterate that I could not have done it all by myself. I have the one thing those people will never have, even if they ever get their college degrees: TRUE FRIENDSHIP.

One of my best friends greeted me after graduation just to tell me that he was proud of me, and that I can do anything I set my mind on.  Another of my best friends called me later in the evening from Harvard to tell me that she was equally as proud of me and that I "deserve everything good [I] get." Mind you, this was all the way from Harvard. I think I should be proud of her a little bit more, though...

So what did that advertisement in the beginning have to do with all this? Well, here's the last line of it that I intentionally left out until now:

There are some things money can buy, for everything else, there’s HOPE.

I overcame all adversity, shallow odds, and half-baked prognoses to prove that I am powerful. Not by my physical nature, but because of my emotional and mental nature. Yes, I am an Aspie, but this little Aspie has an army on his side willing to fight the good fight alongside him for better or for worse.  And I could never be more grateful for that. Thank you. Thank you all. I love you all with every fiber of my being. Grad pics up soon. I promise.

May you all find peace with yourselves, within yourselves. And never stop believing!