Friday, October 07, 2011


Seeing the Soul Within

Ok, so at the end of my last post I hinted that in this new update I would be talking about finally finishing a 20 year old project.  However, so much has happened over the past few weeks that I think I'll save that little anecdote for later.  If you've been reading my recent posts, then you are aware that InclusionFest happened on Saturday, September 17th.  (At the end of my last update I also promised that there wouldn't be anymore stuff about fundraisers for about a year, but it just wouldn't be fair for me to leave you in the dark about how it went!) 

I'm pretty sure it's safe to say that everyone involved with planning InclusionFest was biting their nails the night before the event.  It could either be a huge success, or a monumental flop.  When I arrived at the park at 8am I was happy to see a large tent already standing in the lawn near the community center.  There was a crowd of people waiting for volunteer orientation to begin.  Vendors and Artists were starting to arrive, and as 10am rolled around there was a small crowd starting to gather at the registration table.  InclusionFest began with a proclamation from Mayor Ballard officially making the day a "Day of Inclusion"!  Then the Wheel-A-Thon began with people, wheelchair users and non-wheelchair users alike, wheeling through the park and stopping at fun, educational, "pit stops" along the way.

The weather was perfect and as the day wore on the musicians arrived, and more people joined us to celebrate, observe the sports demonstrations, visit the vendor booths, and attend workshops.  One of my personal favorites was the Beep-ball Baseball demonstration.  They even allowed sighted people to put on a blindfold and experience it for themselves.  I'll never forget watching Bruce Armacost, a close family friend and neighbor, hit the ball and then (with the blindfold on) turn the opposite direction from the base (which was emitting a sound similar to that of an insect) and start running toward English Avenue.  Everyone laughed as I yelled out "someone who is sighted go get him before he runs out into the street!"

InclusionFest was a tremendous success!  We managed to create a fun, educational, event and raised much needed funds for accessABILITY at the same time.  Our low end goal was to raise $20,000 in unrestricted funds for the organization, and our high end goal was $25,000.  At the end of the day we managed to raise just over $27,000, with expenses around $3000, we came in just under the high end goal!  This wouldn't have been possible without the support of many of my friends and family, and I want all of you to know how much I appreciate it! 

Just as I was starting to recover from InclusionFest (I was on my feet much more than usual, and while it wasn't a problem at the event, my body punished me with aches and pains for the next several days!), I took a trip to Cincinnati for the World Burn Congress.  The World Burn Congress is an annual convention, hosted by the Phoenix Society, for Burn Survivors.  I had heard about the event for a couple of years, but it's just not the type of thing that I would normally spend money to do, so had never attended before.  This year, my friends at Community Tissue Service invited me to attend as their guest.  I had no idea what to expect and, as always, wasn't looking forward to being away from home, but I'm so glad I went!

When I arrived at the hotel I had the usual conversation with the Valet attendendant about the fact that they can't park my car (due to the hand controls), and arranged to park my car someplace relatively close to the front entrance.  After I checked in, I headed over to the elevators where I found a large crowd of people waiting to head up to their rooms.  A woman wearing a Phoenix Society t-shirt separated herself from the group and came over to give me a hug and welcome me.  I did not know this woman, but thanked her, and asked "why the hug"?  She responded "we hug every first timer!" 

Now, I'm not sure how she knew that I was a "first timer", as I hadn't even registered with the convention yet.  (After you register you're given a name badge, and all "first timers" have a heart on the name badge to identify them.)  Clearly my prosthetics tipped her off to the fact that I was a burn survivor.  We waited for the elevators for several minutes, but there was an event starting on the 3rd floor and the elevators just weren't making it to the lobby.  Finally a staff member offered to take myself, and several others, up on the staff elevator.  As we loaded onto the elevator I received several more hugs!  It was a little strange, but I got used to it pretty quick.

After dropping my things off in my room, and checking to make sure I would be able to get into the bathroom with my wheelchair (they had only put a "request" on my reservation for an accessible room, and none were available), I headed back down to the lobby to meet my dear friend Kelly Clements (who lives in Cincinnati) for dinner.  (For the record, I had to call the front desk to have maintenance remove the bathroom door so that my wheelchair could fit through the doorway, and to have them bring up a shower chair, which was already supposed to be in the room.  I also had to have housekeeping remove a rollaway bed from the room, which, clearly, was not supposed to be there.  However, I should note the the hotel went the extra mile by installing a hand held shower head, before my arrival, that normally wouldn't be in the room!)  Again, I found myself waiting for several minutes for the elevator to arrive.  I passed the time by chatting with a woman who was also waiting on the elevator with her 6 year old son (who also happened to be a burn survivor).  As soon as I mentioned that I was also attending the Burn Congress her son turned around from the window and ran straight towards me, arms wide, to give me a hug!

The next morning I headed over to the convention center in my wheelchair (the distance was just too far for me to walk and not be uncomfortable for the rest of the day).  Even with all the hugs from the night before, I still didn't know what to expect.  I met my friend Tammy, from CTS, and headed into the ballroom for breakfast and to hear the opening keynote speaker.  I found myself in a room full of  hundreds of burn survivors, adults and children alike, many of whom had horribly disfiguring scars, missing noses, ears, fingers, hair, limbs, etc.  Now, I've seen many patients in the burn unit with injuries as bad and much worse than mine, but I've never been with so many burn survivors at once.  It was disturbing at first, at once hard to look at and hard to look away, but within a few short minutes I realized that none of it mattered.     

Over the next two days I would sit in on emotionally challenging open mic sessions where fellow burn survivors would share their stories.  I attended workshops and met people from all over the world.  I had breakfast with a family from Beijing, China and had lunch with a Nun and her Insurance Agent who were from Ghana, Africa.  (The Insurance company was sponsoring the Nun's, attendance at the Burn Congress and had sent her Agent along as her travel companion.  Clearly the African insurance companies want to do more for their clients than the American insurance companies!)  The environment was so open, welcoming, non-judgemental, and safe that you could sit down next to a perfect stranger and start up a conversation; finding common ground in our vastly different injuries and the stories behind them.  As I spoke with these people, and watched the way everyone was interacting with each other, I realized what made it so easy for us to be together. 

We weren't seeing the scars and the missing limbs, and all of the surface things that can easily make others uncomfortable.  We were all seeing the souls within the people around us.  (I'm reminded of Yoda's words, "luminous beings are we, not this crude matter...")  Once you focus on that, you'll find that a person's physical presence really doesn't matter.  So, the next time you find yourself interacting with someone who's appearance, movement, etc., you find difficult, or possibly even painful to look at, take a second look and see the soul within.  Find that spark of the divine that makes us unique individuals, and yet profoundly connects us to one another at the same time.  That is where a persons true beauty lies and if you can learn to see that in everyone, especially those that society might otherwise shun, you'll be amazed at the impact you can have on them, and they will have on you!          

Very interesting ... but then your posts always are. :-) Just this morning, Rachel burned a small part of her arm on the waffle iron. The blistered area is only about 1" long, but it required many hours of an ice pack before the pain went away. And that was for a very minor burn.

It's good to know there are events like the World Burn Congress to give support to burn victims. I'm glad you were able to go. :-)

Thanks for the reminder to look at the "soul within" of those around us.

Love you!
If not the entirety, at least the theme and "punch" of this posting should be more widely published. It would be beneficial to many many readers. We will share it with many of our friends.

Lilla and Harry
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