Wednesday, January 1, 2014

Differing Perceptions of Courage and Inspiration

I have been writing this blog since the 17th of November and have had a wonderful response to it. Many call it inspirational and courageous. Everyone agrees that my positive attitude is amazing considering the circumstances. In general, even though I deal with some tough issues, I try to leave things in a "feel good", if not just "feel better" state. And I've done a pretty good job at portraying how I feel when I feel positive.

The issue is that my online persona's positivity may be a bit misleading at times. You see, these are snapshots in time and I typically only write them when I have the energy and motivation to. When I have energy and motivation, things are usually pretty good. For those that spend the most time around me, reading my posts and the reality of my situation don't add up. So, while every positive affirmation and silly anecdote is completely sincere, it doesn't paint the full picture. 

It doesn't talk about the times when I'm so exhausted that I simply burst into tears. It doesn't talk about the constant pain that I'm in that forces me to lose hope on a daily basis sometimes. It doesn't show the contorted body positions and facial expressions, like going through electric shock therapy, that happen every couple of weeks. These are the times that stick in my caregivers' minds. 

The conversations of going off chemo and giving in to palliative care so I can end this sooner and not put everyone through the wringer. The off hand discussions of how they are currently debating Dr. assisted suicide in NM. When my pain pills start losing their effectiveness and I "tough" it out over the next hour because I don't want to change to strength or frequency of a narcotic and I practice lamaze just to tell them that "I'm fine."  These are the words that those who are close to me find it hard to reconcile when they read my posts. 

Now... am I like this all the time?  Of course not. But these times sure do make a bigger impression than others when you have to see them every day.  So I can see their points. My caregivers are limited to my loving immediate family right now, so if my wife isn't here my mom or my dad is. These are the people that see the red headed underbelly of this cancer (yup, haven't lost my hair yet). And they are the ones that I want to thank the most for getting me through those times that I can't get up the stairs or can't stop crying or can't get off the couch. Basically, those times that I gloss over with my style of writing. 

Of course I want to present the strongest, most positive front possible. I always do that, which is why Tami has to go to my Dr's visits with me, so that she makes sure the real story is told. So maybe I'm a bit less inspirational and courageous sounding in the future. I want to be honest, so there may be some darker things that show up here. If you don't want to read it, filter out everything with the tag "rant" in it. If it's not my usual happy go lucky self I'll make sure to get that tag on there. 

Thank you so much for keeping up with the blog. It is a great tool for me to heal, share and inform. 

Jake

2 comments:

  1. Well I'm just crushed by this acknowledgement of your mortal state - NOT. Stay positive, even if it is only for glimpses of time. But also, don't be afraid to let it out. I guess I am saying, make this blog what you need it to be. I (we) will keep cheering for you either way.

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  2. Jake, I know I am not alone in wanted to hear what you have to say, be it courageous, irrational, angry, motivational, or just goofy. Get it out. This is your blog and your journey so say what you need to.

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