Monday, January 23, 2012

What is dignity?

I have debated whether to share these thoughts with all of you in my mind.  This is not a subject most people are comfortable with.  Some of you may wish to stop reading right now, but I've come to the conclusion that to cope I need to write, and if I'm going to bother writing, I owe it to those who love and support me to write honestly and to share it with them.  You won't offend me if you don't read this, and if you do choose to keep reading, I hope you won't be offended either.

There were times over the past few days when I thought I must not have any scrap of dignity left.  As part of the testing for nerve damage caused by my tumors, every part of my body, and I do mean every part, has been poked by needles, revealing that certain critically important muscles and nerves in my bum (among other areas) are not fully functional.  In addition, my legs do not yet work well enough to get out of bed.  As a result, I have gone through humiliating days of having to relieve my bowels in bed, sometimes uncontrollably, and often quite painfully.  This illness, I started to think, is going to rob me of every shred of self-respect I have left.  But I've started to realize that those thoughts are self-pitying poo-poo (haha, see what I did there?), and I'm reconsidering what I thought I knew about my dignity.

What is dignity, really? Is it dignified to always use a toilet and bath tissue and never face anything more challenging than making sure you don't run out of the latter?  Is it undignified to do what must be done, and accept help from others, no matter how ugly things get?  What about my roommate with the colostomy, an intestinal opening created in her side to bypass the colon, so that her digested food constantly exits her body through a surgically-created valve and empties into a problematic bag system that constantly leaks and needs regular emptying... and yet she stoically greets each day with a positive attitude and cheerfully chats with her nurses and aides while they constantly try to manage her unstable intestinal situation.  There is no doubt in my mind that she still has her dignity, despite the inglorious medical issues she suffers through.  If she still has hers, maybe I still have mine too.  Maybe keeping my dignity means not letting this shit get me down.  It's staying focused on the goals, working towards getting out of bed every time I have to "go" instead of dwelling on the depressing method I'm currently stuck with.  Maybe there's dignity in letting people help me, letting them see me cry sometimes, and letting them comfort me when they do.  Maybe I'm not defined by how I potty or who wipes my butt.  Maybe all this is only undignified if I let it be, and maybe from now on I won't let it.

Today is Sunday and there wasn't any therapy scheduled.  But I did my arm exercises anyway.  I'm gonna need their strength to drag my useless butt out of bed and onto a toilet by my goal of the end of this week. 



Some people who read this note on Facebook thought I was amazing, and encouraged me to develop this blog in order to share my writing with others going through the same thing but perhaps not able to express what they were feeling and experiencing.  I appreciate that encouragement, it got me to start this blog, but I'm not so sure that I'm amazing. If someone reads this blog, and thinks "Yes! That's what I wish I could say to my family or my doctor or my friends," or "Holy cow! I had no idea so-and-so that I know with cancer or a spinal cord injury or both was going through things like that," then that would be pretty amazing. Here's what I have to say about the truly amazing people in my life:

This hospital is full of amazing people. A lot of them are patients, but a lot more of them are caregivers. People who have the compassion and humor to do things like wipe an adult's bottom without ever making it seem like a burden or a disgusting chore. This would be unbearable without them. And without you all, who constantly uplift me with your comments and Likes. To my friends and relatives who make meals for my family and babysit my children and constantly send me encouraging words and thoughts and prayers:  Thank you!






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