Sometimes people ask Fran and I if we have a "song" that defines our relationship. Since we are both music aficionados (and we're not being snobby about that) , between the 2 of us we know every musical group, band, and artist ever. So with our common and different taste in music we could NEVER pick a "song". We usually tell them that it is a movie, 50 First Dates staring Adam Sandler and Drew Barrymore. It's a romatic comedy about a women who has had a brain injury and has lost her short term memory and how Adam Sandler's character deals with that. Everyday he makes her fall in love with him again. It's funny, it's witty, and it's sweet. We like it because it mirrors the fact that my short term memory sucks. I can't remember what I had for breakfast and that was an hour ago. Everyday Fran does something that reminds me why I'm with her and makes me fall in love with her all over again.
Now that is the sanitized story of our relationship. That is what we tell people at parties to make them feel good and not offend them. Truth be known, we are kinda perverted, twisted, morose, sarcastic people...the world is not ready for our style of truth and humor just yet. One thing that we can agree on is the rock band the Pixies and how much they were under appreciated and how much they just ROCKED!! That being said, the last two minutes of Fight Club sums up our relationship the best. We're both people with deep inner demons, we don't fit in with "society", Fran always wants to be "motherly" with me, and I really want to blow up the world!!!!!
Sunday, August 31, 2008
Saturday, August 30, 2008
Why We Fight
5 years ago Ned was diagnosed (self-diagnosed) with a Brain Tumor. Adult Medulloblastoma is described as "a highly malignant primary brain tumor that originates in the cerebellum or posterior fossa...Although it is thought that medulloblastomas originate from immature or embryonal cells at their earliest stage of development, the exact cell of origin, or "medulloblast" has yet to be identified" (source: Wikipedia.com)
Roughly 20% of worldwide Medulloblastoma cases are found in persons over the age of 15.
Ned symptoms included severe headaches and nausea. Visiting 3 different doctors in 2002 they told him it was psychosomatic, or GERD (Gastroesophageal reflux disease) to lay off the spicy food and quit smoking. Finally on St. Patrick's day 2003 after celebrating his nephew's birthday. And sick and tired of being sick and tired and having doctor after doctor dismiss his claims of a brain tumor. He checks into the emergency room and begs the attending to give him a CAT scan.
"you'll make a great clinician one day" March 23, 2003 Ned underwent a 5 hour surgery to remove a golf ball size tumor in the cerebellum of his brain. Had they waited a week or two longer it would have been inoperable. Leaving him with Severe speech, motor, and cognitive disabilities he was put through intense therapy. A few weeks later he was in the hospital again when 4 pulmonary embolisms were found in his lungs.
While he defied so many odds. The after effects of his cancer and subsequent treatment completely destroyed most of the life Ned led. A highly skilled master carpenter by trade, Avid hiker and outdoorsman, Ned was forced to turn his back on almost everything he loved and start life all over again. His battle has been long. Unbeatable he's defied so many odds and continues to do so.
Many things didn't change. A deep love for his country, The belief that each of us is responsible for the other. His many brushes with fate only proved to heighten his belief that life is so fleeting and it's imperative that we make the most of it. To leave each place we go better than when we arrived. The importance of going through each our days with our eyes wide open. And most importantly that we fight to the death for that in which we believe.
Left permanently disabled by the severe surgical trauma to his brain and cancer treatment. The first three years Ned was able to receive proper medical care thanks to disability benefits. One year ago we received a "Disability Review" a detailed and very confusing document. We filled it out to the best of our ability and to the best of Ned's frayed memory. A few weeks later we were asked to visit a battery of doctors by the Social Security Administration (SSA). About a month later we were told that he was deemed "Able to work". Despite the fact that every one of their doctors reported that he was in fact disabled. To add insult to injury they allowed just 10 days for Ned to contact the SSA office (whose location is more than 1 and half hours away) to request that his benefits be continued during the appeals process. It was discovered after 11 days that the contact number the SSA gave to Ned (to which he called multiple times daily) was incorrect. When calling the correct number he was told oh so subtly too bad, so sad.
We realize we are not the only ones. There are thousands of individuals out there who are dying, becoming homeless, essentially losing everything while waiting for an disability appeal. We fight for the common man & woman. We fight because it's unwanted...unexpected. And it's not just the fight for the Awareness of Cancer, It's not just the fight for disability access. It's the fight to turn this country around from a nation of "sheeple" to a nation that understands the each of us has a responsibility. Each of us is our brother or our sisters keeper. To pay attention. To get up from the dinner table when we hear about injustice and hit the street for change.
Roughly 20% of worldwide Medulloblastoma cases are found in persons over the age of 15.
Ned symptoms included severe headaches and nausea. Visiting 3 different doctors in 2002 they told him it was psychosomatic, or GERD (Gastroesophageal reflux disease) to lay off the spicy food and quit smoking. Finally on St. Patrick's day 2003 after celebrating his nephew's birthday. And sick and tired of being sick and tired and having doctor after doctor dismiss his claims of a brain tumor. He checks into the emergency room and begs the attending to give him a CAT scan.
"you'll make a great clinician one day" March 23, 2003 Ned underwent a 5 hour surgery to remove a golf ball size tumor in the cerebellum of his brain. Had they waited a week or two longer it would have been inoperable. Leaving him with Severe speech, motor, and cognitive disabilities he was put through intense therapy. A few weeks later he was in the hospital again when 4 pulmonary embolisms were found in his lungs. While he defied so many odds. The after effects of his cancer and subsequent treatment completely destroyed most of the life Ned led. A highly skilled master carpenter by trade, Avid hiker and outdoorsman, Ned was forced to turn his back on almost everything he loved and start life all over again. His battle has been long. Unbeatable he's defied so many odds and continues to do so.
Many things didn't change. A deep love for his country, The belief that each of us is responsible for the other. His many brushes with fate only proved to heighten his belief that life is so fleeting and it's imperative that we make the most of it. To leave each place we go better than when we arrived. The importance of going through each our days with our eyes wide open. And most importantly that we fight to the death for that in which we believe.
Left permanently disabled by the severe surgical trauma to his brain and cancer treatment. The first three years Ned was able to receive proper medical care thanks to disability benefits. One year ago we received a "Disability Review" a detailed and very confusing document. We filled it out to the best of our ability and to the best of Ned's frayed memory. A few weeks later we were asked to visit a battery of doctors by the Social Security Administration (SSA). About a month later we were told that he was deemed "Able to work". Despite the fact that every one of their doctors reported that he was in fact disabled. To add insult to injury they allowed just 10 days for Ned to contact the SSA office (whose location is more than 1 and half hours away) to request that his benefits be continued during the appeals process. It was discovered after 11 days that the contact number the SSA gave to Ned (to which he called multiple times daily) was incorrect. When calling the correct number he was told oh so subtly too bad, so sad.
We realize we are not the only ones. There are thousands of individuals out there who are dying, becoming homeless, essentially losing everything while waiting for an disability appeal. We fight for the common man & woman. We fight because it's unwanted...unexpected. And it's not just the fight for the Awareness of Cancer, It's not just the fight for disability access. It's the fight to turn this country around from a nation of "sheeple" to a nation that understands the each of us has a responsibility. Each of us is our brother or our sisters keeper. To pay attention. To get up from the dinner table when we hear about injustice and hit the street for change.
Friday, August 29, 2008
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