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Photograph taken by yours truly in eastern Washington state at sunrise, 2004

Monday, November 22, 2010

Gut Feelings: Seeing it in Writing

A few weeks ago, I decided that it would be helpful to read a biographical book written by someone with some form of an intestinal condition.  I was tired of feeling alone in my condition; anything relevant with depth would hopefully meet my needs.  I came across a book called "Learning Sickness: A Year with Crohn's Disease," which I picked up at the local library.  It's a relatively short book, 187 pages, written by an English professor working at Assumption College in Worcester, MA.  The author, James M. Lang, was diagnosed with Crohn's disease in 1996 when he was a graduate student and new father.

Before I go on, I want to clarify that I personally don't have Crohn's disease.  I didn't state what condition I was born with in my previous post.  While I have no intention of describing my condition in depth at least for the time being, due to the stigma surrounding it, if you are so inclined you can read more about what I was born with (high I.A.).  It's tough to even reveal that!  But based on the positive responses I've received so far, I feel just open enough to share the link.

While Crohn's disease is very different categorically to high I.A., there are just enough similarities in symptoms, to the point that I felt a distinct connection to Jim Lang.  Crohn's disease is a chronic inflammatory bowel disease that is very painful.  The disease affects different parts of the gastrointestinal tract, and its impact varies greatly between individuals affected by it.  Crohn's tends to "come and go," in the sense that it can go into remission and flare up again for weeks, months, or years at a time.  Bowel movements are frequent and nearly uncontrollable.  There is no "cure" for Crohn's disease.  Crohn's can be treated, though, and if caught early, the lifetime impact can be lessened.

Jim Lang's book focuses mostly on one year of his life in which his disease was at its worst.  His book moves forward and backward in time, as he discusses when he was first diagnosed with Crohn's and recalls other significant times in his life that were negatively (or positively) affected.  I felt most emotionally connected to Jim's story when he discusses the bad moments and close calls of having "accidents."  Most people really have no clue of the major stigma associated with these. 

There were two major points that stuck with me from Jim Lang's book: a) patient advocacy and b) religiosity among those with chronic illnesses. 

Without a doubt, it's critical when you have a chronic illness to be your own best advocate in the medical system.  Doctors are not always right, and you will likely know your own body better than any doctor would despite the most advanced technology.  When you're in conflict with a doctor's suggestion or opinion, and you absolutely know you're right, you have to stand up for yourself.  With that said, doctors definitely have access to all of the tools and training to help you.

Jim's other point - that he believes many people with any kind of chronic illness are religious people - was intriguing to me.  Certainly, if you're dealing with a lot of pain and suffering that you know won't go away throughout your entire life, you may look to a higher power.  I myself am not religious by any means, but I consider myself a spiritual person (I'm drawn to the philosophies of Taoism and synchronicity - but that's for perhaps another post!).  I was an atheist up until the time I had my first bowel obstruction in 2000.  The combination of the trauma I experienced, along with the love that I felt from my friends and parents, made me think a lot more about what it means to be alive.  Life is truly amazing and worth cherishing and reflecting upon.

I do think that Jim Lang over-sentimentalizes some things in his book.  There are other factors that come into play in the way he deals with Crohn's disease, and those factors won't necessarily be as relateable to others with Crohn's or other intestinal disorders. 

But the major sticking point about his book is that he wrote his thoughts and feelings down about what it's like to deal with his disease.  As far as I know, there are no other biographical books about Crohn's, though there are quite a few practical and medical books on the topic.  His book hits home, and you see the humanity that overshadows the disease.

That's what is missing for people born with I.A.  No one, to my knowledge, has written a book or even a lengthy, in-depth description of what it's like to deal with the consequences of this throughout life.  Someone should do that.  Part of me would love to attempt a book, though I'm not sure if my personality lends itself well to such a long-term endeavor. 

As I begin to hear from new parents with children born with I.A. - and even from other adults like myself - it's becoming all too clear that we've got to break through the stigmas and barriers.  We're not alone.  The stories need to be shared.  Let's talk about things.  Let's see it in writing.

Sunday, November 14, 2010

Bad Dream: The Tractor-Trailer

It's not that often that I remember my dreams, but as my sleep was interrupted around 1:00am in the morning, I vividly recall in detail this particular bad dream.  It was one of those dreams that feels very real, as I was experiencing a great deal of anxiety in the dream and even upon waking up.  I figured I would post it here on this blog while I still remember it in such detail (then hopefully, I can go back to sleep in peace!):

I was at my parents' house and was just saying goodbye to my dad.  I had rented a tractor-trailer, though no one I personally know seemed to be aware that I was doing this, including my dad.  As I'm driving the tractor-trailer alone, I come to the Chesapeake Bay Bridge-Tunnel (if you're not familiar with it, it's an expansive bridge/tunnel connecting Hampton Roads to the Eastern Shore of Virginia).  Except in this dream, there were apparently a series of stairs on the roadway of the bridge-tunnel that you have to carefully drive your vehicle down.  Fearful of the potential dangers of driving a large tractor-trailer down a series of stairs on a bay bridge-tunnel, I slowed down and cautiously moved downward.  But apparently, I wasn't cautious enough, and the tractor-trailer overturned to its side, crushing other cars in the process.  I'm physically fine, but I see someone trapped in the car immediately next to me but can do nothing for them.  I call 911, my voice shaking, to let them know I've caused an accident.  They keep on telling me to calm down.  The dream skips here, whereupon my father enters the scene to pick me up at the bridge-tunnel.  He tells me he assumes it's a mechanical problem with the tractor-trailer and that it'll be okay.  Then he nonchalantly asks: why don't we go to the Outer Banks of North Carolina and relax for a vacation?  I agree to do that, but I can't shake the lingering feeling that I'm the direct and sole cause of that massive accident.

That's when I woke up.  What a silly dream!  It's nonsensical, but it's funny how we can imagine it to be so vividly real as we experience it and even for a minute or two after we wake up.  I'm not really sure what the dream means, if anything. 

On that note, I'm going to try to go back to sleep!  Feel free to laugh, process, or wish you had done something other than read about a dream! ;-)

Friday, November 5, 2010

Change is in the Air

November is apparently going to be a month of change for me, in big and small ways.  Some changes have fallen into my lap, and others have been a conscious personal choice.  Altogether, I think they are positive!

The first piece of wonderful news I received was that my father bought a new 2010 Toyota Prius, and he decided to gift his 2005 Prius to me!  So, sometime later this month I'll be going down to Virginia to pick it up and drive it back to Bridgewater.  I'm so excited for a couple reasons: a) it's always nice to have a newer car, and b) the Prius obviously gets great gas mileage.  My 1998 Nissan Altima is really starting to show its age.  It has nearly 114,000 miles on it, and it has its bumps and bruises.  That car has treated me so well since I got it from my parents in 2003.  I got the Altima when I received my graduate degree in Ohio, and the car took me to Idaho where I worked for three years, and then across the country again to Massachusetts where I've been working the last five years.  I'm spoiled when it comes to getting free cars, but I greatly appreciate it!  So I don't think I'm a brat. ;-)

My '98 Altima, in the Canadian Rockies (2005?)

I don't have an actual photo yet, but this is what the '05 Prius looks like!
In other news, my cell phone has been acting up over the last few weeks.  The display has been demonstrating a kaleidoscopic show of red and blue colors intermixed with what it's supposed to be.  Then this morning, I woke up and discovered the display was upside-down and in reverse.  The only way to read the phone display was by putting it upside-down and in front of a mirror.  So... that forced me to get a new phone this afternoon.  I went to the local Sprint store and decided to go with the Samsung Restore.  It's advertised as an eco-friendly phone - it's made of about 27% recycled material, and when I decide to recycle it and get a new phone, 77% of the phone is recyclable.  Considering I chair the sustainability committee in my office, I guess the combination of the Prius and the Restore is a good image for me. :)  I upgraded my service plan to the Everything Data 450 which means I'll now get internet, e-mail, facebook, and all that jazz on my phone.  The Restore isn't as snazzy as the Blackberry, iPhone, or Droid, but it's like my "gateway drug" to those savvy phones.  So far, it seems to do almost everything the smartphones do.  I am already getting addicted to being "connected" 24/7, I fear.


My Rumor2 demon cat display!

Samsung Restore random stock photo :-)
Upgrading my phone plan will reduce my budget by about $20 a month, though with my 15% USAA discount, it's not really that painful.  Plus I just cancelled my gym membership at Planet Fitness today.  I don't really use the gym anymore.  I get a good cardio workout from all my walking, and I'm thinking I'll invest in a few inexpensive free weights (or maybe get them for Christmas!).

Finally, I went to the NEACRAO (New England Association of Collegiate Registrars and Admissions Officers) conference yesterday in Newport, RI.  I was equally excited and nervous about attending, since I'm strongly considering pursuing a position in a registrar's office in the not-too-distant future.  I felt relatively comfortable at the conference, though.  Some wonderful people who made me feel very welcome.  At the "first-timers" breakfast, when all introduced themselves and their positions, I announced myself as a Resident Director but quickly followed that up by saying "But I'm not lost!"  The sessions I attended and the people I met reinforced my hopes to transition to this career area.  Don't get me wrong - there are several areas of Residence Life I still greatly enjoy (particularly my staff that I supervise) - but being an RD is not a lifetime career.  NEACRAO was, I hope, the start of a greater life change.