HAA!

No, I'm not laughing:)  Well ok, I'm smirking that you probably laughed, but that's not what "HAA" stands for - it stands for the Health Activist Awards!

WEGO Health is at it again, shaking up the norm and giving activists new ways to build connections, credentials, and influence.  For the first time EVER, they are handing out Health Activist Awards! 

Image, and award info, found here.

You can read about the awards, rules, criteria, and the rest of the process at http://info.wegohealth.com/awards-2011/, but here's a summary for you: WEGO has determined 10 categories of activists for which they will present awards.  Activists are nominated during the month of December by, well, anyone, and winners will be selected by a panel of judges - who are fellow activists!  (So no, you cannot "vote", but you can nominate anyone you want for any award...and, well, I haven't been nominated yet:( ).  There are awards for everyone from "Rookie of the Year", someone who just came on the scene in 2011 (so not me lol), to "Best Kept Secret".  Some awards recognize different types of activists - like the "Paperboy Award" - or activism styles - like the "Hilarious Health Activist".  There is one award that I found particularly interesting (though it's hard to pick, they would all be such and honor and honestly I don't know how my communities feel I add value):


Described as: "This health activist did amazing things offline this year"!

I find it acutely uncomfortable to ask for accolades, but I guess there are times I have to give myself a nudge - so my request to you is to take a look at the award categories WEGO has designated and consider if you think I might deserve a nomination for anything.  As I said, the offline one caught my eye, so I guess I'll explain why.  BUT, first I want make sure you understand, I'm only asking you to look at the awards, and act ONLY IF you really think I might have earned something.  Nominations can be made anonymously so I'll never know if you don't nominate me...because I might not know who did if they chose to do so anonymously (if I get nominated at all).  Did I ramble awkwardly long enough yet?  Yes?  Ok fine, I'll move onto why I think the offline category is so interesting.

My last post, We are UII - in NYC, was about the latest UII event this past week.  As you know, this wasn't my first panel.  It actually wasn't even the first panel Jon, Bridget, and I have done together (that would have been the presentation at Villanova back in February).  But it was the first panel presented entirely by UII!  In the past, I've been a panelist at events like this one as part of a group presented by WEGO Health...in fact, that's how I made the connections that led to this opportunity (add that to the list of instances of WEGO awesomeness).  At Villanova, an existing organization hosted us - usually SNAP, the Student Nurses Association of Pennsylvania.  UII also sends teams to events, such as the Sjogren's Syndrome Walkabout (which, in Philly, will be on May 5, 2012 - SAVE THE DATE NOW!!).  But December 7, 2011 marks the first time UII presented a panel or speaker entirely under our own name!

The UII portfolio of programming is steadily growing.  With each event, we reach more and more people, as well as companies, industries, and institutions.  A sample of what we've done so far includes (not a complete list):

• Events at Villanova including - campus-wide symposium, nursing program panel, and intimate learning community sessions
• WEGO Health events - panelist for industry presentations, webinar speaker, focus group participant, and so much more
• Condition-specific events - Sjogren's Syndrome Walkabouts (multiple years - walkers & committee), Sips for Sjogren's (innaugural year - donor and committee), Light the Night walks (mulitple years - walkers)
• Workplace efforts - KPMG's AIM (Abilities in Motion) network leader, locally and nationally (includes organizing programs such as national online session on ePatients and local office's first Disability Mentoring Day in 2011)
• Unique events - such as being part of the coalition which developed and promotes the Digital Patient Bill of Rights, and being a guest speaker on Optimal Health Seekers' Radio (hosted by fellow activist Trish Robichaud)

Oh yes, and now also...

• Sponsoring presentations for the betterment of all chronic patients!

With the aid of the internet, UII has made connections with at least tens of thousands of people around the world (at last count, I can confirm hits on this blog alone from 68 countries).  It would be impossible determine the full number - especially considering I've been translated into French at least once, reaching an audiene I otherwise might not (thanks, Jazzcat;).  UII has also made connections with thousands of people even more directly; with KPMG, UII gets to impact not only our 23,000 employees in the US, but also other companies such as the other honorees at the 2011 Disability Matters Conference (and by the way, there is also a Europe conference).  With Villanova, UII has connected with thousands of students, including those in nursing - our future caregivers.  UII can only do this with the cooperation of many organizations, and especially the help of several brave men and women "on the ground" with me (like my fellow panelists).

How much impact does this really have?  KPMG's ePatient session, which was one of my projects, had more participants who were not members of the AIM network than any similar event to date; I have the ear and support of the Philadelphia office managing partner, who is a influencer at a national level; and one that may not sound so impressive but represents a huge personal bond, my performance manager, a partner at KPMG, traveled from Philadelphia to NYC during one of our busiest times of year to see our panel last week (she commented she learned a lot and had ideas she wanted to discuss with our office leadership).  My friends, and their friends, contact me to ask if they can refer someone they know to me to be connected with resources for special challenges they are facing.  UII is earning its reputation as a place to be supported and connected - and as more people come to this place, we have more to offer each other.  The larger our portfolio grows, the more UII is capable of doing!

As you can see, it's very hard to separate online from offline activism.  To me, activism is activism is activism - the goal is to reach a lot of people in a many ways, and sometimes in person has more impact than online (though not always).  But I can tell you I work very, very hard on all these projects, especially the IRL (in real life) ones.  To be successful to me, someone must have learned something knew, someone must have an idea they didn't think of before, and someone must be motivated to do or learn or share something more.  And I feel all UII events, so far, have been successful:)

We are UII - in NYC

UII Panel - Stacy Andes, myself, Jon Dorfman, and Bridget Meakim

Need to make t-shirts: We are UII!

On Wednesday, four activists who are definitely NOT morning people put aside their nocturnal ways and set out before daybreak to bring the patient perspective to the Social Media for Pharma conference in New York City.  Braving cold & rain, and armed with a useless GPS, slide deck print-outs, and more caffeine than should be allowed in one vehicle, the quartet made their way northward from Philadelphia for their "Broadway debut" (the conference center was on Broadway:)).

During their 45 minute presentation titled "Building a Relationship for a Lifetime: Using Social Media to Target & Market To Audiences with Chronic Health Conditions", the group covered topics including: why chronic patients (and in particular, young adults with chronic health concerns) are a crucial demographic; the experiences influencing patient decisions; the concerns patients have about their futures as they balance wants & needs; the Digital Patient Bill of Rights; and action items for pharma such as ways to use social media to improve patient relationships and advice on the proper tone to use in their communications.

As always, the audience was keenly interested in the unique opportunity the panel posed - the chance to ask patients what they really think, want, and need.  During lunch, which was shortly after the panel's timeslot, the program organizers arranged a special time for interested attendees to dine with the panel and continue the discussions.  By the time the checks were paid, our weather-weary but always-elegant team began their journey home with new contacts, ideas formed in conjunction with big pharma on how to move some plans forward, and a sedan full of satisfaction!

Forgiving Myself

Today was the first day of Advent.  While Lent (the period leading up to Easter) is more directly focused on repentance than the 4 weeks of Advent leading up to Christ's birth, there is still an undertone of seeking forgiveness during this time.  Maybe it's something about the image of the new, little baby Jesus - not only innocent by divine birth, but also by virtue of being a brand new babe, who hasn't yet had time to falter, hurt someone, harbor his own hurt, or do any of the other things we do in our lives.

And for my many readers who have different religious views (or views on religion), this post isn't about Christmas or even Christ, per say.  Advent just happens to be a good way of explaining a thought I had today.

In this time of seeking forgiveness from God - and with an even bigger focus on forgiveness between ourselves than seen in Lent - I realized there is one more person from whom I must seek, and to whom I must give, forgiveness: myself.

See image, and related article by Timothy A. Pychyl, Ph.D., here.

Like most Americans, I enjoyed a 4 day weekend from Thanksgiving on 11/24 through today (11/27).  Also like many Americans, I had a list as long as my medical Explanation of Benefits (EOB) forms of what I wanted to get done.  I needed to gut my room, find a lot of "missing" clothes buried in there, clean the carpet well, pack up out of season clothes and those to be donated, and figure out how to store the clothes I have.  I also needed to clean the living room, write some blog posts to have on hand over this next terribly busy month, work on some items for the AIM network at my firm, get a jumpstart on work for my current client, and due to some technical problems earlier in the week, try to nail down work for another project.  I also wanted to get some holiday shopping done, revise Shawn's budget with him, and go over our benefit options for my open enrollment period.

As I write this on Sunday evening at 11:30pm my time, I've gotten through perhaps 1/4 of my bedroom.  I sorted a tuchas-load of clothes, put most of the folded clothes that are mine away, organized and stacked Shawn's so at least they're off the floor, got the air conditioner out of the window, vacuumed the part of the floor I revealed, threw out trash, gathered some clothes to donate, and organized 3 suitcases I use to store sweaters & shoes.  It was solid work, and I felt good with what I got done.  But in the same breath from which I heave a satisfied sigh, I feel the nag of the rest of the to-do list that didn't get-done.  I couldn't go over anything with Shawn as he worked some crazy shifts and was swamped with schoolwork, and I did get some holiday shopping done (I'll have to tell you my First Black Friday adventure another time), but that still left the vast majority of the work.

A very big factor in my low-productivity, actually, was my exhaustion.  As you may have noticed, I pound away at life pretty hard most of the time.  I've put in late nights at the office, worked on the upcoming UII panel presentation and related materials, and done a million other things lately (which is why my to-do list was so atrocious in the first place).  Also, I recently switched from Provigil to Nuvigil (both "stay awake" meds) due to insurance costs, and found Nuvigil works but wears off far more quickly.  It is, as usual, a double-edged sword.  Sometimes Provigil would keep me going too long, which prevented me from getting enough rest many nights, but it would also usually stay in effect a day or two after I took it which let me skip doses on weekends when I could nap if I wanted but still be mostly functioning.  Nuvigil lets me fall asleep more easily on days I take it, but it also means I experience more significant fatigue on days I skip it - hence my multi-hour naps on Friday and Saturday.  When I let my body get the rest I know it needs, I lose a HUGE amount of time.  I know this is something you all relate to incredibly well.  And, even after waking from those naps, I was usually pretty brain fogged the rest of the night.

I'm upset about what I didn't get done.  I'm stressed about the things on my plate now for the next few days at work; I'm frustrated that for what I got done in my room it's still a pit with heaps of clothes and boxes and bins; I'm worried about the information I never got to review with Shawn.

I didn't have the best work ethic when I was younger.  It was sometime during college when I broke through my procrastinator ways, and figured out that by getting it done now I wouldn't have to worry about how to do it later.  Because it was a self-taught and honed trait, I'm secretly rather proud of my work ethic such as it is now...except this weekend sucked that out of me.  Suddenly here I am in the all-too-familiar place at the top of the "supposed-to-do" list.

This is not the work ethic I make myself live up to.  But, I think I need to forgive myself.
I obviously needed the rest.  I wasn't running around playing the social butterfly - yes, I saw a couple people but that accounted for less than 4 hours total across 2 days.  I wasn't being frivolous with my energy, I just simply didn't have enough to go around.  And, this should have been a weekend where it was ok to be in that situation, when no one was demanding much of me.  With one notable exception I don't care to dwell on and get myself worked up over, this was a time people around me were saying "stop.  Recharge.  Take some time".  That's next to impossible for me.  My instinct is to cram as much into my time as I can.  When I plan time off, I always budget my days by what type of tasks I want to accomplish (cleaning, writing, etc); it's just how I operate.  Or rather, it's how my brain operates.  Unfortunately, my body has other plans from time to time, and this weekend was apparently "time".

My body said "heck no, don't even TRY it Miss; you WILL regret it", and suddenly I was sidelined for the first 3 quarters (wow holy Gadzooks - not only did I use a football reference but it was a pun, too).  I'm angry with myself for not pushing through more work.

But I know that's not right.  It's easy enough to ask myself for forgiveness, but I don't know how to grant it to myself.  Somehow, I have to find away.  When all's said and done, I have to forgive myself for not living up to my plan.  This is especially true when in hindsight I realize it was an unrealistic plan from the start.  Gosh, I hope I'm a lot better at forgiving others than I am with myself.

With chronic illnesses (and pain and fatigue) comes plenty of chronic guilt.  We may voice the legitimacy of our limits for the rest of the world...but inside our own heads we hear so much doubt.  Do I really need a 4 hour nap?  Can't I stay up late and get this task done?  Why should I get to claim "brain fog" when other people wouldn't need to stop?  (And yes, "brain fog" sounds pretty silly to us, too, even though we live the debilitating effects.)

Yes, we do.  Yes, we need to nap - our bodies are fighting 24-7 battles against themselves.  No, we can't stay up late - what little functionality we have is strongly correlated to our ability to adhere to a schedule.  We 'get to claim brain fog' - our work is no good when it comes from a low-hanging cloud.  We need to forgive ourselves.

We need to BELIEVE it's ok to live within these limits.  We need to allow ourselves compromises with ourselves.  We need to accept we aren't going to be able to build the tower of Babel on a 4 day weekend just because "it has to get done somehow", and love ourselves anyway.  We need to ask ourselves for forgiveness and give it wholeheartedly and without delay.

Now if only there was a 'common sense' pill to help us forgive.

(PS - I found a great article on this subject by Timothy A. Pychyl, Ph.D., entitled "Forgive Yourself to Stop Procrastinating".  Take a look at why some psychologists believe this is a key to future productivity and progress!)

Holiday Travel Tips

In the United States, today was the day before Thanksgiving.  For us, today kicked off in earnest the holiday season...which also meant kicking off the traveling season.  In fact, for the first time since the US recession began, reports indicate we're seeing an increase of as much as 4% nationally in travel for Thanksgiving.  Many of you have already put in hours on the highway, or may even be reading this on your smartphone as you sail down the byways (or sit bumper-to-bumper...).

See the original cartoon at The Week and more from cartoonist Drew Sheneman here.

Yesterday, my favorite blogger and fellow Sjoggie, Julia, posted about suggestions the Sjogren's Syndrome Foundation makes for surviving air travel.  You can see her post at Sjogren's Syndrome Foundation: Tips for Airline Travelers with Sjogren's.  And yes, a lot of these tips are applicable for travelers without Sjogren's so you might want to take a read through.

So, in honor of this national time of travel tips and woes which gives rise to some of the best "Worst Trip Ever" stories, I thought I should discuss the lessons I've learned from one of the most famous travelers & explorers in the world - Indiana Jones.


Photo found here.

And so, for your Thanksgiving enjoyment, I give you my list of...

The 10 Most Valuable Things I’ve Learned from Indiana Jones

1.      If you can’t see what’s ahead, throw sand.

2.      If you don’t know how to get from where you are to where you’re going, just use a rubber raft.

3.      Stay in the shadows but look for the light.

4.      Sometimes air is not your friend.

5.      Fear live people, not dead ones.

6.      Listen to the crazies.

7.      Every crisis is a learning opportunity.

8.      Everyone should know how to use a whip.

9.      Don’t be a child, find something to fight with.

10.  The right hat will work in any occasion.

Happy Gobbles, my fellow turkeys!

Living Happily Ever After: Building a Brighter Future

As you know, October was National Disability Employment Awareness Month (NDEAM).  In celebration, I wrote two posts - Once Upon a Time: A Tale of Disclosure and After the Honeymoon: Chronic Illness in the Workplace - which are about deciding to diclose my disability and my first months in the workforce.  We've looked at the past...so now let's look to the future ahead, and what we can do to get there from where we are right now!

The event I'm writing about took place on October 19.  Yes, that was last month.  And yes, NDEAM itself was also last month.  This I know.  But what's more fitting than carrying the conversation on into the rest of the year?  (My schedule these days might have just a little something to do with the timing, too...just a titch.....)



Image found here.  Sadly, I didn't get a photo from our actual event.

On a rainy Wednesday in October, half a dozen KPMG professionals gathered in our favorite conference area to participate in our first Disability Mentoring Day, which was part of the firm-wide celebration of National Disability Employment Awareness Month (NDEAM).  There, they were paired with mentees who are customers of the PA Office of Vocational Rehabilitation (OVR) in our local region (OVR is a government agency which works with people fitting the broad definition of having a disability to develop the skills they'll need to compete and succeed in the workplace).  The mentees spanned diverse backgrounds from recent college graduates in their 20s to experienced men and women looking to apply skills developed over time in new markets.  Each came to the event with different goals for the day, yet all said their expectations were exceeded by their assigned mentors.

The Philadelphia office managing partner (the head honcho in the local office) gave the welcome address, explaining that the Mentoring Day was the next step in our office’s journey toward diversity and inclusion.  The group, which also included OVR representatives and other KPMG volunteers, learned about the history of the AIM (Abilities In Motion) network, firm programs such as schedule flexibility, and the uniform accomdoations process introduced earlier this year.  KPMG mentors spent the next few hours working one-on-one with their mentees.  Throughout the day, the pairs discussed many aspects of professional and operational matters based on the unique interests of each mentee.   

While the event was designed with the needs of the mentees in mind, KPMG participants gained much as well.  One friend of mind, a first year audit manager, used his role as mentor to develop his own leadership skills, noting that “meeting an individual with a disability [helped him] to realize that they really aren’t that different from you or me”.  He found that managing a team including people like his mentee requires the same types of creative problem solving as any other, such as involving those you manage in identifying solutions and being sensitive to individual needs.  His mentee described how my friend used real-world examples to help his mentee better understand the analytical perspective our professionals exercise.  Our manager was successful in his role because he understood his mentee is a person first, with a disability that does not diminish his ability to do the job.

The mentoring day held special meaning for me personally.  To begin with, I was given free rein to take this idea and run as far as I could.  The proposal to participate came down to us from national, along with a rough draft of an agenda and local contact information.  The rest of the logistics & event design were up to me.  And to be honest, I'm pretty derned proud of myself.  I was able to pull together all the information OVR needed, anticipate and address various challenges (such as balancing the goal of providing mentees with a realistic glimpse into our world while maintaining confidentiality of client & firm data), and react to last-minute changes (including fluctuating numbers of each mentors and mentees) to put forth a solid event.  When the program was over, I realized I felt like I had been at a firm event - nay, a GOOD firm event (we had food :D) - and not some amateur attempt.  Anyone attending would see it as a polished product from a major company, not a wing-and-a-prayer presentation by a fledgling staff flunky.  I think the idea here is that I felt accomplished.

I don't usually go off on quite such a tangent about the success of my ventures (partly because they don't always result in such success!), but this event was more than just a "good show" for me.  This event, in a mere 5 hours, impacted at least a couple dozen people in different ways.  Our 6 mentees and 2 OVR guests saw what I've been saying for 2 years - KPMG is a company that walks the walk that matches their talk when it comes to inclusivity and support for employees with disabilities.  They're not perfect, but are doing well and moving steadily in the right direction. 

Some of our top leadership & HR professionals heard first-hand what this population needs AND what it has to offer.  And some of my closer coworkers - managers and staff I've worked with since I began with the firm - learned first-hand things I hadn't been able to convey in that time.  When they introduced themselves to the group, at least half of our mentors said "I don't really know anybody with a disability, but wanted to participate because of X, Y, and Z"...but they know me.  Hardly a day goes by I don't mention something about my "disability".  They work with other people in our office whom I personally know have disabilities.  One gentleman even went on to mention problems he has with his joints that was a textbook description of a disability - but said he didn't know anyone with one. 

This didn't escape the notice of our mentees, either.  As we sat around a table, eating lunch and discussing these observations, we shared a look and an unspoken affirmation - by putting ourselves on the line (for in this way, I was more like my mentees than my coworkers), we had finally reached these people.  They came in thinking they didn't know anyone with a disability, because even people who told them outright then operated under the guise of "being normal" so familiar to all of you reading this.  But there, in a room where the entire focus was on the disabilities, these same people began to get it.  And, they rose to the challenge.

My one friend, who I mentioned above, has been a tough one to get involved.  He didn't answer my invitation emails, didn't respond to my follow-up texts.  Believing he was just too busy to get back to me, I finally cornered him in the office one day.  In my oh-so-delicate way of arm-twisting, I pushed him to at least give me a firm yes or no.  That's when I discovered he was avoiding me not because he couldn't nail down his schedule, but because he was afraid.  He said he didn't have much experience interacting one-on-one with a person with a disability, and was afraid he wouldn't handle it properly.  In that moment, I was reminded that my coworkers are going through a learning process just like me.  I live in this world every day...every minute of every day, really...but my second nature may be foreign to them.  So, I reminded him that in his new role as a manager, he now had a responsibility to learn to handle that situation.  He will inevitably work with someone with a disability in the future.  And this event, with it's controlled environment and predetermined schedule, would be a safe opportunity to dip his toe in the water.  I armed him (and all our mentors) with information on how to discuss the topic of disabilities without violating privacy rights of our mentees, as well as the various programs offered by the firm to deal with issues from flex time to accomdoations requests.  I also later found out our partner, who had declined to participate in the event herself, did so in order that she could do the work that would have tied him up that day so that he could participate.  And my friend did himself proud.  As I said, his mentee raved about his experience, and my friend commented that he learned a person with a disability is like any other employee. 

I think this is a key we need to consider.  Would it perhaps be more appropriate, and effective, to change our language?  What might happen if instead of saying "I AM the same as you despite my disability", we said "I am WORTH the same as you, regardless of my disability"? 

Our disabilities aren't something we can compartmentalize.  We can't leave them at home, or lock them in a drawer for the workday.  Instead of trying to be the same, what if we made them the focus of the conversation, and show that we are not the same but are equal?  By wanting to be seen as the 'same', aren't we really authorizing society to turn a blind eye to disabilities themselves?  Maybe the way to change society instead of just laying a new framework on top of it is by putting the spotlight back on the disabilities.  Take them out of the shadows where they can grow and morph into insurmountable roadblocks and brightly illuminate the role they truly hold.



Lightbeam image found here.