I blog about my health because I have to. I have to for myself, for other patients like me, for doctors, for complete strangers I've never met. I have to because we don't like talking about this stuff. I blog about my health because what I'm going through is invisible, and it affects every aspect of my life, including who I am able to be. I blog about my health because I feel like I'm in the closet. People don't want to know, and I get judged and mistreated because of my disease. But most of all I blog because: "If you think you can’t make a difference, you are wrong. If you think you are too old or too young to make change happen, you are wrong. If you think that somebody else will do it first, you are wrong."
No one likes a loser. Either you're on the side of health that's bigger - faster - stronger and all about being a hero, or you're on the side of health that's a nightmare. It's difficult to talk about nightmares. But I think we can change the conversation. I think that if we're able to look at health problems not as a sign of weakness, but as a challenge that the Universe has given to us, we can start to see people with chronic illnesses as heroes.
It's my intent to help people get a positive perspective on chronic illness. We need to change our ideas of what it means to be sick. It's a scary experience, because it's times like this that we realize just how little in control we are. Everyone knows what it's like to have the stomach flu, and have your only though be reaching the toilet before something terribly embarrassing happens. Sickness can through us back into the helplessness of infancy, even though we're full grown adults. That's why healthy people don't like talking about chronic illness. Because they have no idea that perserverence is possible!
As a person with a chronic illness, I can tell you from my story and others, just the amazing amount of strength we have. We take it for granted, of course. We're so busy trying to keep up with other folk, that we see ourselves as lacking in strength all the time. But I'll admit, I've been told more than once, "I have no idea how you handle all this." I didn't use to honor that statement as much as I should. I was so frustrated with the limitations of my disease, that I didn't see how amazing I had become in response to those limitations.
I'll give you an example, not dealing with chronic illness.
Joss Whedon is an amazing movie producer. He did the screenplay for Toy Story. But his best films are the films that had the most restrictions. Either there wasn't enough money, or there wasn't enough time, or something was going terribly wrong. Whenever that happened, he made amazing work. The movie Serenity is probably my favorite example. (Watch the behind-the-scenes... they're hysterical and informative.) The movie came from the TV show that was canceled, until a grass-roots fan campaign got enough support that they were able to finish the series in a major motion picture. That's never happened before. And it came out of struggle.
In my Biography, I share a quote from Elizabeth Kubler Ross: "The most beautiful people we have known are those who have known defeat, known suffering, known struggle, known loss and have found their way out of the depths. These people have an appreciation, a sensitivity, and an understanding of life that fills them with compassion, gentleness and a deep loving concern. Beautiful people do not just happen." I want to help teach people with chronic illness that they are beautiful. You are beautiful because you struggle. You are beautiful because you fight. You are beautiful because you pick yourself up again after you've been devastated... One. More. Time.
I blog because this message needs to get out there and be heard by everyone. I blog because people with chronic illnesses should all hold their heads up high. This is hard! Our struggles are valiant---they make us heroes. We don't have to prove ourselves on some testing ground. We're already there! And we prove ourselves each day, whether or not we get out of bed. Because the battlefield is within us, and our bodies are at war. We don't have to hide in the shadows. We can be proud of who we are.