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

Friday, October 22, 2010

Gut Feelings

This is an intensely personal writing that has been a work in progress for the last few weeks, mostly tossed about in my brain, and now finally formed in this blog post.  I warn you that this is not a topic easy for me to discuss, as I have generally worked so hard to keep it hidden from most people throughout my life.  I'm swinging a steel ball through a brick wall that's been up for quite a long time.  I feel this is a risk, but there's a sense of cautious hope that I can help educate others on an emotional level of what I've encountered.  I'm not the only one like this in the world, not by any means.

The Classroom

I'm sitting in the front row in a high school lab classroom - the subject, chemistry.  Before me and four other students is a long rectangular table with a black top.  I'm sitting on a stool like the others are beside me, as the teacher writes some kind of formula on the chalkboard.  I don't particularly like this class, and I lazily jot down notes.  Something churns in my stomach, and I know I'm about to feel unwell.  Sweat begins to form upon my forehead.  A tightness grips my gut.  I've been in this situation before.  Relax... I'm fine.  I don't need to use the restroom.  Breathe in, breathe out.  I try that a few times.  No, that's not working.  Can I hold off until the bell rings?  I don't want to make a scene.  Can anyone else around me tell that I'm feeling sick?  It seems like all eyes in the room are staring at me.  No, I can't wait anymore.  My arm darts up.  Come on, teacher, look my direction.  Come on... come on... she sees me.  "Yes, Michael?"  The words stream out as quickly as I can get them out: "Can I use the restroom?"  "Yes, you may."  I jump up and speed out of the classroom as fast as my feet can take me.  Will I make it to the restroom?  God, I hope so.  My face is warm, blushing bright red, and I'm fearful I'm not going to make it.  I don't make it.  Damn it, damn it, damn it...  how am I going to deal with this?  How will I hide this?  I do whatever I can in the restroom.  It's unavoidable - everyone is going to notice.  I'm going to have to get to the school receptionist and have my mother pick me up.  I still need to go back to the classroom and pick up my books and that bookbag on the floor.  Someone sees me in the hallway on my way there.  He laughs at me.  Oh, this is so embarassing.  I feel shame.  Intense shame.

This scenario plays out multiple times throughout my life, before and after that moment in that classroom.  The shame burns itself a little more stiffly into my self-image every time this happens.  But that time in that chemistry class exemplifies the worst period of my life when it comes to issues such as this.          

Moments in Time

A Sunday.  August 19, 1979 at 12:45pm.  That was the moment I came into this world, seemingly healthy.  Two hours later, it was discovered I was not quite whole.  I required major intestinal surgery, and two days later on the 21st, a colostomy is performed.  Tubes in my body every which way.  Incisions.  Major discomfort.  Crying.  As a baby, I must have suffered a lot, though it was probably more traumatic for my parents to see their newborn child in this condition.  Good thing we don't remember things from when we were born.

April 15, 1980: Back to the hospital to finish what was started.  I gained some weight and was healthy enough for the major surgery about to be done.  At the time, it was a new varation of a form of surgery, and I was lucky to have had it.  My life could have been much tougher without it.  But again, here, there were more tubes, more incisions.  Painful for a baby, and just as much so for the parents.  Functionally, the surgery corrected my condition.  However, there would always be some difficulties and potential problems.  The doctors knew that, and they informed my parents of this.

Throughout much of my young childhood, I didn't have much control.  But if I got sick, that didn't really matter much... until I became a part of a wider social world in elementary school.  At that age, if things want awry in class, I would deny my problem.  I'd get in trouble with the nurse sometimes.  My parents would be called, and I'd have to go home.  During one instance, I became sick, did nothing about it, and managed to keep it hidden (to this day, I have no idea how I did that) until I took the bus home to the babysitter.  She noticed.  I got a severe spanking for that from the babysitter.  Looking back at that moment in time, I feel anger for that woman.  For all she did was reinforce that shame.  The seed was firmly planted.

April 6, 2000:  Junior year in college.  It had been about four days of intense pain - the worst ever in my life.  I had lost about ten pounds, and after three hospital visits and misdiagnoses of the stomach flu, the university's nurse saw me and decided something was horribly wrong, and she sent me to the hospital for a fourth time with a demand for a CAT scan.  That's when they discovered I had a bowel obstruction and would require emergency surgery.  Hospital staff were trying to get ahold of my parents, who were a six-hour drive away.  A nurse sat beside me and told me she'd have to place a tube through my nose into my stomach (an "NG" nasogastric tube) to relieve the pressure in my intestines.  Already frightened about the upcoming surgery, that experience was traumatizing and I remember being in such tears.  An NG tube, by the way, is not fun at all.  The gag reflex works incredibly too well as your body fights it.  After that was done, I remember getting on the phone with my mom as I was so scared, and she said they would be on their way.  I was actually thankful when the anesthesiologist put me under.  Anesthesia is a gift at times like this.  When I awoke, I found that I had a new friend called morphine.  More importantly though, I found I had many friends - more than I really knew I had.  Fellow college student leaders came in and visited over the next few days.  There was a lot of love in that hospital room.  Combine that with the joy to see my parents and my best friend Marcus and good friend Erika by my side for much of my hospital stay.

The doctor told me if it had been another 24-48 hours before they discovered the bowel obstruction, I would have risked death.  I knew I'd never take life for granted from that point on.  When I was discharged, my mother brought me by my room in the residence halls to pick up some of my things.  My room had been cleaned by my friends.  Another act of kindness.  After a long drive home, I recuperated with my parents' help.  That warm and safe feeling one gets when they're at home - well, that's about as strong as it gets, in my opinion.

As soon as I was permitted, I drove back to college, making multiple long stops along the way, taking it easy.  I wanted to make it for the end of the year awards banquet with my fellow residence hall student leaders.  Among them, that was my second home.  When they awarded me "Executive Board Member of the Year," my path into my career in student affairs was solidified.  That was a very happy moment in time.  Support from my peers, from professional mentors.  That's the kind of environment I wanted to be in and to give that support back to others.

And Since...

Since that time, I had another bowel obstruction in 2003, though it was caught early enough that surgery was not required (though the dreaded NG tube was a necessity).  I do get sick quite frequently, especially when I'm stressed.  Sometimes "accidents" (I hate that term) do happen.  When they do, that horrible intense feeling of shame returns.  I've been taking steps to come to terms with that shame particularly over the past year and a half.  I've found some understanding people in my life recently, and it is because of them, that I am finally feeling more confident coming forward about what I've been dealing with in life. 

I know this is at great risk, however.  I'd like for people to know what it feels like.  There's a horrible stigma, and I want to do my part to educate others and work to get rid of that stigma.  This may not be my first blog post about this topic.

Final Thought

I leave you with this thought.  A filmmaker, Roey Shmool, is working on a documentary about the experiences of people like myself.  I'm looking forward to when he releases that film.  If you can, take a moment to view the web site and the trailer for the work-in-progress at Wear It On the Outside.*  When I first saw the trailer about a little over a year ago, I cried.  It was the first time I caught a glimpse into others' lives like myself.

Now I'm choosing to do the same.

*Update as of April 21, 2012: It no longer appears that the film will be produced as the web site has been taken down.  But you can still see the video of the original trailer on YouTube on the above link.

11 comments:

  1. GREAT blog, Mike! Very well written. I would like to see you have it published because I have heard from many students who deal with the same issues and are reluctant to talk about them. They come into my office and close the door. This is a medical issue that should not bring any shame or embarrassment. Society is very slowly beginning to understand medical issues, some more than others, but far, far more education is needed. This is where you can help others!

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  2. I am so proud of you for write this all on here, it is so good for you to share this with other people that could be struggling. Very well done!

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  3. Mike, you are such a special person to come foward with this blog. The world needs more like you to help educate the public! I like to think that everything that happens to us makes who we are. Certainly, your experiences have molded you into the sensitive, caring person you are which is one of the reasons I'm sure you excel at your job. Bravo, cousin!

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  4. I've appreciated the comments and messages you all have written since I wrote this post last night. It makes me realize there is much more support out there than I previously thought. I will probably end up writing more about this, and I plan on trying to reach out to folks in similar situations like mine. I love you guys! :)

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  5. As your mom, it was very difficult to stand by and watch, helplessly, as you struggled with the pain and humiliation you often endured. You felt very alone because there really wasn't a support group for children with your health issues. You have the ability, through your beautiful words, to help others. I am so very proud of you.

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  6. Mikey G., Thank you for sharing this and being brave enough to put this out there. Know you are supported by many, including me, whether they post a comment here or not. You are stronger than you know.

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  7. My little girl has many medical issues (including IA). She just had her colostomy closed in August and we are struggling with bowel management among other things. It's so great to know that people like you are coming forward and sharing their experiences -you are truly making a difference!

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  8. I want to thank you so much for sharing. My daughter was born with IA as well as, suffers from complications following her first surgery. I have shared your blog with my daughter who is now 12. She has began to share her story too. She told me that hiding what she goes thru was more of a burden to her than it would be to share it. It has been hard for her, middle school is not easy, but it is for people like you, who can share your story, that makes my daughter stonger and I thank you so much for that. Bless you!

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  9. Thank you, Mike. My five year old daughter has the same issues, too. Would you consider joining us in the FB group Neurogenic Bladder/Bowel Incontinence? We are a community of support (private group) open to all patients, families, carers, and medical professionals dealing with issues of bladder and bowel incontinence. We would be honored to have you share your experiences with others there.

    Thank you!
    Stacey Ann

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  10. Mike, Thank You for wanting to share your experience with others like us (my daughter (3yrs) has IA w/ segmented Hirschsprungs disease). You really helped me get insight on how to handle hard situations and how I need to really try to be more patient at times with her. The last thing I want is for her to feel shame. I know it's not her fault in any way, and as a parent it is so hard to watch your kid go through something like this. The frustration takes over time to time, and I need to be better and work on my patience. Thank you again! It helps so much to relate to others (especially those like you who have grown up to be amazing people to now share their difficult times).

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  11. Mike, Thank you for the courage it takes to put this out there. I have a few friends that were not diagnosed until they were adults. Hope you get better soon. Matt

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