Monday, June 13, 2011

Kidney March

This blog will be posted some time after it was written due to an outside directive to not talk about my living donor experience until after I have donated.  If you are reading this, it is because I have completed the donation process.
January 29, 2011

Tonight I had the absolute privilege of being invited to the first annual "Thank You" celebration for the 2010 Kidney March. Held last fall, the march was the first of its kidney kind in Canada and was a 3 day, 100km walk through the foothills of Alberta.  The goal of the event was to raise awareness and research dollars for the Kidney Foundation and to also celebrate the community of people and their families living with kidney disease.  The inaugural march was a huge success by any definition. We were shown inspiring video showing laughter, tears, just a few blisters and people with spirits' mirrored only by the beauty of the Alberta landscape they marched through. Not only was awareness raised, they also brought in an astonishing $918 000.  Many single participants and teams of two raised well over $12 000, which to me is just mind boggling.

I felt truly honoured to have been invited to such an event. One of the local Kidney Foundation champions/employees (especially when it comes to organ donation) had thought it might be a good opportunity for me to hear some stories of people living with kidney disease.  And it was.

We heard from a man who was just about to celebrate his sixth anniversary of his transplant (courtesy of his son). Another lady (who was so full of energy it was almost a little scary) spoke of how, until she was affected by kidney disease due to an auto immune disease about 8 years ago, she believed kidney disease was something old people got. The video participants (many of whom were in the room) spoke of kidney cancer, dialysis dependencies and transplant received from mothers, sons and daughters.  I was reminded again by the lack of representation of "non directed donor" stories in the mix that I am still a rarity in Alberta-something that hopefully will change.

One thing that I really noticed (and maybe that some of the policy makers out there might want to take a look at) is that people with kidney disease and their families want to talk about it. They want people to know why they are sick, how their kidneys failed (because there are so many different reasons I guess).  They want people to know about their mothers, brothers and uncles who have been taken away by the disease too soon. For the lucky ones who have received transplants, they want to celebrate their donors. For those still waiting or not in line for a transplant, they want people to KNOW what life on dialysis is like, how changes life for their families.  People want to talk about their wait time for transplants, about the people they've lost who they've loved dearly.  They want to share their victories, their appreciation for those who have enabled them through organ donation to get their freedom and health back. What seems to make this group different  from something like the cancer community, is that first of all no one is hiding a thing and that they are a group that really bands together.  There isn't any whispering the way there is when people get "the cancer".  The Kidney Community is one where they talk about their problems and use them as inspiration to keep going.  They stick together and support one another. They share ideas, tips for living with kidney disease and most of all they really share a hope that things will get better, that with awareness will come a solution to the problem of kidney disease and failure. I think if they knew there were organizations out there trying to stop people talking about it they'd be upset. I think its possible that you can balance talking about disease, and raise awareness without making yourself a media target or really giving too much of your personal identity away.

I am seriously considering being a part of  Kidney March 2011 regardless of if I become a donor. Its not going to be easy but compared to what these people go through on a daily basis, it will be a walk in the park (albeit a very large park).

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