"After carefully reviewing all the information on your claim, we have made a disability decision. We find that your disability did not end. Therefore, your benefits will continue."
After a year long battle on all fronts, emotionally, physically, financially we finally won one! Today for the first time in a LONG time we feel like we can breathe again.
When I was in radio there was a list of things you NEVER talked about. Religion and Politics were at the top. I've always respected that not everyone is going to feel the same way as I do about religion. How can I expect someone not to force their ideas down my throat if I'm doing it myself? To use my mic as a medium to talk about my Religious beliefs was hypocritical.
But politics, sociology, culture those are things I've been very passionate about since my youth. I found ways around it. Ways to keep it in the Gray. For example when an election was coming up I would spend the week leading up to election day reporting on how one vote made a difference in American history. Voting is one of the most important things we can do as Americans and as human beings in my book. The adage that "my vote doesn't count so why bother" couldn't be more dangerous. That's what those that wish to control us as a society want you to believe.
One of my biggest frustrations has always been how the Mainstream Media seems to only be capable of reporting about the darkness in our communities & the world. Leaving us in a constant state of fear, a constant disbelief in the goodness of mankind. I had a daily report called "the bright side" where I talked about everyday people going above and beyond the call of duty to help their communities. Because that is the kind of news that reminds people there is good in all of us and if it's one or a thousand we can make a difference. Because those are the kinds of people that deserve countless hours of coverage on CNN not Paris Hilton and her ilk.
With that said I'm also no stranger to the injustices in the world. I strive also to make sure that those are brought to light as well. Injustices that we can do something about. Although the road may seem long, I need only to look at my daughter and husband to know it's worth everything I have to keep fighting.
One of the many things that binds Ned & I is our deep sense that we are each others keeper. The belief that if there is something wrong you do what you can to fix it. Ned's struggle with Cancer, Our struggle with Social Security, Our lack of access to affordable or better yet UNIVERSAL health care, Our frustrations with public education, our frustrations with the complete dismissal of the importance of guiding our youth, our government ... we have much to say and well since the first fruit of our real collaboration turned out quite nicely we thought why not try again. Bloggy Style.
I give to you... The Lords of Karma Taken from the Hunter S. Thompson quote "I consider myself a road man for the lords of karma" We will talk a lot about Ned's struggle with cancer, our battle to convince the social security administration that he is in fact disabled(10 out of the 11 doctors reporting on his case agree with us). Our struggles living as a family who cannot afford health insurance. We'll also talk about a lot of the issues that need to be brought to light. To somehow help those on a similar path or those less fortunate. And we welcome any and all contributions. If there is something going on in your community, something that you feel is important to talk about please send us an e-mail. And we'll do our best to post your story. It's important to know that each of our voices means something. And just as I remind Ned in those moments he feels that he's all alone in his fight. There is always someone who can find inspiration from you. Always someone who can benefit from the experience and perspective you have to offer. So please when you can stop by and let us know what you think.
Grab a drink, Grab a Tissue, We are going for a ride.
One minute your living your life to the fullest. Traveling the country, hiking the Appalachian Trail, Camping, Drinking with good friends, Filling your life with good music and good memories. Practicing your craft with joy each and every day. When suddenly out of nowhere your stomach churns, Your head in vice, You can't eat, can't sleep, can't keep anything down. You reach out ask for help from the people who are supposed to know they tell you lay off the spicy food it's G.E.R.D. Your instincts tell you that isn't it. You keep getting sicker, keep asking why, and the doctors keep telling you it's all in your head. I can't imagine what those times where like. Everything you loved to do. Everything you loved giving way to painful sleepless nights desperately researching trying to find the answer. Reading through medical papers filled to the brim with words you can't understand. But this sickness keeps you up keeps you reading. There it is. Brain Tumor. What was it like that late night deep in those quiet hours reading those words? You must have been so scared love. My hero.
To walk those halls as a patient... those walls you built. Begging someone anyone to believe you. Oh my love, my hero how strong you are. How rare you are indeed. Adult Medulloblastoma a cancer found mostly in children is deep in you, a man full of life and experience. How is this? Within days they are inside. A few more days it would have been inoperable. This was just the first of many battles for your life. The fates, your body knocked you down over and over again. But you keep getting up. My hero. Some nights when you sleep your face the most peaceful I've seen in many moons. My thoughts drift to you trapped in that mask. Listening to the buzz. Listening to Norah Jones ad-nauseum. I whisper to you my love all the things I would have said. Imagine holding your hand. My hero.
You did it all alone. I wasn't there. My heart breaks sometimes because I wasn't. There to annoy you with mindless chatter (as I do when I'm nervous), Talk about how hot the nurse with the nice rack is (to make you laugh), To sneak you chic fil-a, To whisper to you over and over how brave, how strong you are. My hero.
Cancer is such a horrible horrible disease. What so many people don't realize is that it's more than diagnosis, surgery, and treatment. They don't tell you is just the first wave. The battle, the war, wages on for years. You never hear about the rehabilitation. You never hear about illnesses born from hospital stays or cancer treatment. You never hear about Radiation Induced Necrosis. You never hear about the immense physical pain left from surgery scars. Never hear that if the Cancer doesn't kill you the treatment just might. Never hear that if you are permanently disabled. That you will fight for the rest of your life the the right to have access to the hundreds of thousands of dollars you put into the system.
The past two weeks have been particularly heavy. Today my battle worn hero faced yet another battle. Imagine having to tell a complete stranger over and over again every single one your painful flaws. Telling them all your dark secrets. Telling them with every mintuae just how you are damaged. BEGGING them to help you lead some semblance of a normal life. PLEADING with them to give you what's rightfully yours. JUSTIFYING your pain and suffering. And you're sitting in that chair. You're choking down every ounce of pride. And you're there because of a golf ball mass of cells. You're there because you wanted to live. Your there because you would not be defeated. Your there because a brain tumor and four count em' FOUR pulmonary embolisms didn't kill you. When they said you wouldn't walk again you walked. When they said you wouldn't survive you did. YOU WILL NOT BE DEFEATED.
And I realize as much as I wish I had been there those first days and months. I was meant to be HERE... now. I've got your hand, I'm behind you pushing you on in those moments you just don't want to take another step. I'm the one who knows and will share with everyone and anyone how unbelievably amazing you are. How inspirational, how strong. Even if you're too battle weary to realize it. I was meant to be there with you March 14th 2006 when your daughter came into this world kicking and screaming filled to the brim with the same fire, the same fight as her dad. I was meant to be the one to tell you no matter how far away it seems. You won't have to fight forever. Happiness in life will find you again. The rewards of your courage will someday find you. To whisper to you deep in the night. "My hero, oh how I love you"
