Friday, January 14, 2011

A Forced Choice

Yesterday I was forced to make a choice.  I was given the option of being eligible to continue in the Living Donor Program OR being able to continue writing my blog.  If I want to donate my kidney and help a stranger, I can't talk about it in a blog, using social media or via traditional media.  This mandate was handed down by my social worker for one of the larger organizations tied to the program. I hope that they will entertain the indiscretion of this (last) post as I wanted to let everyone know why there would not be any more posts for awhile.

Because the end goal of helping someone is the most important thing to me, I decided to respect and comply with the request although I will continue to work with them, review their policy and determine if there is any room for compromise.   I do feel, in my opinion, this was not handled well-ultimatums never feel good especially in a situation like this. However the reasons for this policy, although not completely clear to me, must be in place for a reason.

I do regret the fact that I have lost what is a very important personal channel for me to voice my opinions, my feeling, my concerns and my experiences while I go through this journey.  I also regret the fact that this policy decision has destroyed a primary method of  communication to friends, family and coworkers who care a lot about me and are following my progress from across the country.  I deeply regret the lost opportunity to educate people about the process, as it happens and to generate awareness for the thousands of people living with and dying from kidney disease.

I do not regret my decision to donate.  I would not have made the decision without, in part, the education and understanding I have gained from reading the many blogs and stories, both Canadian and American, I have read in the last five months. I hope that at some point, people who develop these kind of policies are able to better weigh perceived risks with actual benefits such as awareness, increased living donations and better support for people who opt to start along this kind of path.

I am able to write about my experiences after it's all said and done....I will be doing that.  In the meantime, thank you for your interest and support-it has been wonderful.


Tuesday, January 11, 2011

Giving Credit Where Credit is Due

While it's fairly cliche to say we are living in the "Information Age"--we really are. Not only are there the traditional sources of information available (books, newspaper, radio, hundreds of TV channels) but we have this glorious thing called the Internet at our fingertips. Don't know what temperature to bake a chicken at? Google it.  Can't remember what TV show the guy you just saw in a music video was on as a kid?  Google it. At a touch of a few buttons we can read a product review, find out the best vacation spot or buy a pair (or few) of designer shoes. We can also add information and opinion by commenting on social media sites like Facebook, tweeting on Twitter or updating an article on Wikipedia. And of course for some of us, we may opt to blog.

Growing up I wanted to be a writer. When they teach you in school to write, you are told to "write what you know".  In other words, don't write a story about a aging rock star trying to adjust to suburban life unless you know something about all the pieces of the story.  If you haven't lived it, you had better research it and that probably means talking to someone who has lived it.  While research can be a good substitute, the best writing truly comes from experiences you have had-it's authentic, its real and its just more engaging.
As an early social media adapter, I've wanted to write a blog for years...I've just always struggled with what I could blog about that would be interesting to readers and give me enough topics to keep it going while staying "authentic".

So finally with this "kidney thing", I was able to try to flex my blog muscles. When I set out to journal this experience I always figured my primary audience would be my family, friends and a few coworkers.  At best I thought there may be an accidental couple of Google hits.  So that was the audience I was writing to--for the most part people I knew well.  The point is, I was writing "what I know" to "people I know".  I have been trying to capture my experiences as openly and honestly as possible.  If something bad has happened, I've talked about it.  If something good has happened, I've celebrated it.  I've tried not to edit out the little details (people, places, feelings) to keep the story as authentic as possible.

Now things have gotten bigger (and quite possibly are about to get even bigger-more on that to come). Through sharing, linking and Googling, the audience to my blog is growing. Should that change how I write?  Do I need to sugarcoat things, edit out anything that might be taken the wrong way? Do I need to omit names of everyone and everything and talk in vague circles?  It has been suggested yes. For example, some went as far to suggest I remove an earlier blog post where I mentioned my employer by name (in the most positive, factual way).  In a moment of uncertainty, I did go back and edit out my employers name. And then I felt bad-like I had done the wrong thing by not recognizing them for doing the right thing. So much so that I'm going to go back and put it back in.

I think credit should be given where credit is due.  Every part of this journey is important to me because it impacts the experience.  Whether it be a negative morning at a lab (which I've since received an apology letter for), kind words from a co-worker or getting lost in a network of hospital buildings, it all matters to the story.  Of course I will leave some things out that are of lesser significance or if it will cause more trouble than its worth to include. But for the most part, these appointments, emotions and people are all pieces in the puzzle and if you start randomly taking them out, you lose the big picture.

So I am going to continue to being open and authentic-because its my story to tell and I'm going to tell it my way.