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.

So Many People Think I'm Crazy - But I Had That Ruled Out

 "Thanks for caring, because so many people think I'm crazy - but I had that ruled out."

This came from Sarah, a friend seeking a diagnosis for her invisible illness, while she was in the emergency room for the umpteenth time over as many months with crippling pain and other mystery symptoms.  She texted me because the nurses in the department were making comments about seeing her "back again" and the doctor wasn't considering any new advice, tests, or treatments.  It's a problem so many of us have been through (and may go through again someday).  But Sarah knew she had someone - a network of people, really - she could reach out to that would remind her she's worth the fight and in very good company.  She had a place to go to recharge emotionally; to be reassured others go through the same challenges and find answers; to share the humor we must use to keep this experience in it's place as a part of our lives without defining our lives.  It's great she can put this humorous spin on a challenge common to us 'sickies', and it's made even more powerful by sharing it with people who can laugh at it together.



Image found here.

This is my 100th post.  I've been a "blogger" for 2 years, 1 month, 3 weeks, and 6 days.  I'm in shock.

I'm not a writer.  I hated journaling assignments in school, and never kept a diary.  Technical or persuasive writing are fine but "creative writing" always made me cringe.  The last creative writing project I remember not hating was a story I wrote in 1st or 2nd grade called "*69" (it was a mystery...noo noo noo noooooo....).  And introspective writing just made me uncomfortable.

But I've come to realize this blog isn't about introspection.  It's about a connection with Sarah, and Julia, and Amy, and the other Amy, and Alicia, and Lisa, and the other Lisa, and Genevieve, and Annie, and Jen, and Jenni, and Mark, and Phil, and Mike, and Tiffany, and Casey, and Ellen, and the dozens of others too numerous to list.  It's about a relationship with organizations like KPMG, the Sjogren's Syndrome Foundation, the Leukemia & Lymphoma Society, WEGO Health, ImageThink, TheBody.com, the Advanced Learning Institute, DTC Communications, Springboard Consulting, THINK-Health, Klick Pharma, HealthCentral, the Digital Health Coalition, Rest Ministries, and ePatient Connections (again, among countless others).  Above all, it's about putting these networks to work for each other.

My posts discuss communities out there, information you share with me, conversations happening all around us, and sometimes even your own words and messages.  Sure many posts are in my voice, but it's only by telling you about myself and reading about you that we bond with each other.  "My" experiences aren't about me as Jenny, but me as a patient, employee, student, volunteer, wife, daughter, and activist. 

I mean it when I say "UII" is about "we", the community of chronic patients, family, friends, and caregivers who represent so much of our society.  In meeting you through "UII", I've gained so much.  I have new insight into my own ideas and aspirations - like confirming that I should continue "UII" and take it to the next level.  You've helped me refine my goals - like realizing it is appropriate to narrow the scope of "UII" enough to provide more focused and valuable resources.  You've shown me how little I know on my own - like the value of social media outlets and health options I never dreamed existed. 

Like Sarah, I need to thank you, for sharing your experiences, knowledge, dreams, fears, and lives with me.  Thank you for answering questions, steering me in new directions, and bringing others into the conversation.

Thank you for reminding me I'm not crazy when, like Sarah, I find myself surrounded by those who would convince me otherwise.

Thank you for 2 years, 1 month, 3 weeks, and 6 days of the best education on Earth.  For an educational program from which I hope I never graduate.  For great laughs, better ideas, and blessing me with your friendship.  For loving me for the little I am, calling me to be more, and never making me feel that I'm not enough.  You're special people who take "UII" from a fantasy of mine to a reality of ours, and I'm glad we've met.

After the Honeymoon: Chronic Illness in the Workplace

October is National Disability Employment Awareness Month (NDEAM).  Therefore, it seemed like a good time to tell parts of my story relating to being "disabled" with chronic invisible illnesses as a young adult in the workforce.  A lot of the patients I hear from faced the challenges of developing these illnesses in their 40's (give or take) and having to leave the workforce; there is much for me to learn from their experiences, but I need to apply it in a different way as I entered and try to make my place in the workforce.  At 45, it's hard enough to give up your job - at 15 (age at diagnosis) it's really not an option.  Hopefully what these patients went through can help me in this challenge.

In my last post, "Once Upon a Time: A Tale of Disclosure", I discussed my decision to disclose my illnesses to my firm before I was hired full-time.  Now, I'd like to share how I approached my first few months (which included my first Busy Season) and when I realized I needed an accommodation.  To be clear, I'm not suggesting all other chronic patients follow in my footsteps, but we can learn a lot by examining the way other people make these decisions and that's what I hope you take away.

Cartoon found here.

When the honeymoon was over...
I spent my first 6 months or so as an auditor trying the full grind to see what I could handle.  By then, I realized the travel was one of my biggest problems - at least, of the problems we could do something about (as opposed to the excessive overtime that's part of the biz - my rheumy still isn't happy with me about that).  Up until that point, my "disability" had been mostly talk; the firm knew about my medical situation since I externed (the summer before my internship) but I hadn't needed any real accommodations.  We knew I was different in theory but I had acted and been treated like anyone else, so far.  In a way, this was like a couple's first big financial decision - it can solidify their relationship or send them running for the hills and the nearest divorce attorney. 

With this in mind, I wanted to come to the table asking for an accommodation to reduce my out-of-town travel with some possible solutions in hand, so I developed a list of clients in my preferred industries which were local enough to avoid an overnight stay.  I think this is when I developed my concept of "making accommodation feel like collaboration".  While I never actually ended up on any of those engagements, it showed the powers that be I was only looking for them to meet me halfway.  Which they did.

There are, of course, imperfect moments.  I've dealt with some team members who could stand some serious sensitivity training (not to mention an education in health issues in general...or even just in manners).  As I mentioned, the hours are an ongoing struggle.  Even as I enjoy the support of the rest of my coworkers allowing me to advance on par with my most ambitious peers, I also face the other edge of the sword with dramatically increasing responsibility (read: stress, anxiety, and reduced tolerance for foggy brain days).  But I couldn't ask for much more than an environment in which I can safely and comfortably discuss my medical challenges even while managing local and national projects which just happen to be part of my dream.


But not everyone has found their Prince Charming.
I know I'm one of the lucky ones.  I know some day my luck may change.  I know some people are ready to throttle me for telling this tale.  Knowing how many of my "spoonie" peers are in the exact opposite (and often sinking) boat makes this whole thing a little bittersweet.  I'm not oblivious to the horrific injustices so many of you go through for employment - if you even can work at all.

I can only explain my decisions.  I wanted you to know, especially during National Disability Employment Awareness Month, WHY I disclosed to KPMG.  It was a damn big risk- I was already taking an extra year and most of my student loans to graduate college, if I had blackballed myself among the top employers for graduates I would be in a BAD place.  I didn't make the same decision to disclose to my employer during college (when I worked part-time for a small construction company).  And I don't suggest that everyone else should follow my lead. 

But eventually someone has to take the risk.  It's not just for myself, it's also for everyone else who needs their job.  If we all hug our cloaks of invisibility tight for fear of what society's ignorance will do to us, we only make it worse.  Those of us blessed enough to have a chance to cast off the cloak, I believe, have the responsibility to do so, and fight ignorance with information.  And above all, I want you to know these situations and employers do exist.  KPMG is just one of the "good companies", but since job seekers don't have to disclose, it's hard for these companies to reach us.


Look for more posts this month about my experiences as an employed person with a disability.  Have your own experiences, thoughts, or ideas to share?  Leave me a comment, or better, write a post and comment with the link!  Mine is only one perspective, we need many to get anywhere.

Once Upon a Time: A Tale of Disclosure

"If there's something you're passionate about, talk about it constantly.  Tell everyone you meet, every chance you get.  You never know who will be that connection you need; who is in a position to help make it happen; who you will meet that has that passion too."

This is the best piece of advice I have ever been given.  This gem came from a partner at KPMG who I met during a networking event as an intern in the summer of 2007.  It is, as are most strokes of genius, extremely simple.  You don't need to explain the logic behind it, like that feeling you have in your heart when you simply know something is true.  And quite honestly, it's pretty funny that someone had to tell me to do this (I mean really, am I ever NOT talking about a passion?). 

But as obvious as this advice is, when your passion is something as emotionally and socially charged as disability and health issues it's easy to repress instead of express.  We know that feeling when the person we're speaking to is tired of hearing what we have to say.  We've lost friendships and relationships when the pervasive effects of our conditions were too much for someone else to handle (ignore the fact that we have to handle it, like it or not, every day without reprieve).  We dream of a chance to forget and experience life without that chronic lens.  If so many people - including ourselves - are sick of hearing about it, why would we bring it up to strangers?

I bring it up because for me, invisible illnesses & disabilities are not something I live with privately.  They are a passion, and part of my dream.  I want to build a network, support system, resource base, and education program for people affected by chronic and/or invisible illnesses.  You know this dream as "UII". 

That summer, UII was little more than a small Facebook group without much activity.  I had begun working with the Office of Health Promotion at Villanova on my first IRL (In Real Life) awareness event to be held in October, 2007.  I knew I had a passion, but was certain of little else - I didn't know if I could be successful in this work, or even how this work would take shape.  But I was given advice and I took it to heart.

At the end of the 10 week internship, I had an exit interview with a partner from my alma mater.  He was very interested in my 'big picture' plans.  KPMG is one of those places that likes people with plans, goals, and passions - we are hard workers and go-getters.  So, when asked what I wanted to do in the long run (it's an accepted fact that most people join the Big 4 to prepare them for something else), I told him my passion.  He responded with the name of an author (and as I would now term him, a health activist) who was writing on a theory about the link between stress and chronic illness.  And some words of support for my plans.  And my offer to join the firm.

And so we've lived (mostly) happily ever after, KPMG and me. 

I'll be honest, it's more like a real marriage than a fairy tale:
For better (the Disability Network) or worse (busy season hours & flares),
for richer (this year's raise) or poorer (last year's raise),
in sickness and in health (well, that's a gimme)...
And there are days I think it will be death that will do us part.

But I'm still here, kicking and screaming (yup, this really is just like a marriage):)
(Stay tuned for part 2, where I discuss some of my experiences actually working for the firm and the man-on-the-ground challenges II's bring!)



Image found here.


Enjoy October, which is National Disability Employment Awareness Month.  I have some special topics in store, along with those I've already promised to cover.  I wonder if I can pull off a mini-series here...hm...guess you'd better stay tuned;)