Friday, January 14, 2011
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
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.