The End of Casey’s Dream

This is the tale of Casey’s Dream. It is an important story because it demonstrates the shortcomings of two segments of American life, a broken healthcare system, and a declining economy. It is also the story of one person, a little boat, a blog page, and the end of one. The person is me; the boat is called Casey’s Dream and so is the blog. So let me take you back to the summer of 1998.
July 1998 the nation was embroiled in the Monica Lewinski scandal. My wife and I were enjoying what is up to now our best financial situation since we had started our family eleven years earlier. So one weekend we decided to take our kids to see one of our favorite places on earth, the Shenandoah National Park, better known as Skyline Drive. It was nearly all we hoped it would be. It started out as a daytrip with some light hiking. It was great. The kids were blown away by the sight of the mountains, the deer, and most of all the bears. While hiking up Old Stoney Man Mountain we had even crossed paths with a mother bear leading her two cubs through the woods. The one low point that first day was I was having trouble with my legs. I had expected that hiking might be a problem after all I am a long time smoker. It wasn’t shortness of breath that was the problem it was incredible weakness in my legs. Still we were having so much fun we decided to see if we could possibly find some place to stay. The next day we did a little more difficult trail. Of course the first day’s hike was hard I had driven all the way to Front Royal, Va. and down the Skyline Drive before starting our hike up Old Stoney Man. That second day was a bitch. I had to stop every five minutes to rest. We adjusted our hike out by taking the fire road out since it was less steep. That was the beginning of a downward spiral.
My problem was diagnosed as a muscular skeletal problem. I knew what the problem was. It had been suggested two years earlier that I had “second stage polio.” This is now called Post Polio Syndrome. Unfortunately my primary care doctor who had made it perfectly clear that he didn’t like having to treat HMO patients, had declared “I have a patient with post polio syndrome, you don’t have post polio syndrome.” I guess he was a fan of Senator Lloyd Bentsen. The point is he didn’t like having to refer to specialists. He had already had to refer to a neurosurgeon and an orthopedic surgeon. So a third referral was not to his liking. So when I was told I had a muscular skeletal problem I knew it was post polio syndrome. I had learned that the best specialist to diagnose my problem was a physiatrist. It took a physiatrist less than fifteen minutes to diagnose my post polio. He also told me that it would be best if I stopped working, stopped driving a car with a clutch and move into a house or apartment without stairs. The car was easy. My wife drove our minivan so we switched cars. The house and the work were more difficult.
At the time this all started, my wife and I were negotiating to buy the house we had rented for the previous eight years. It was a real déjà vu moment. When we were expecting our first child we were trying to buy a house. She was let go from her job as a waitress when she was seven months pregnant. The following morning the bank called to tell us we had been approved for a mortgage. I told the person from the bank that we had just decided that we had to call them to inform them that we had just lost one of our incomes. They were willing to pretend that they hadn’t heard that. We felt we had to back out. Affording a house on two incomes was a stretch. With in a week after my son was born I was fired for talking to a possible new employer while at work.
Now eleven years later we were being told getting a mortgage would not be a problem. All we had to do was agree on a reasonable price for the house. Affording a house had not gotten any easier on one income in the eleven years since and now my income was in jeopardy. In fact my health was spiraling back in ‘98 continued and by September I had to stop working.
The next five years were full of pain, depression, a near divorce, and battles with Social Security, and bills, lots of medical bills. But as my fiftieth birthday approached our marital problems had worked themselves out. We had navigated the Social Security Disability maze. In fact thanks to a new job for my wife even paying bills was getting easier. The one thing that was not getting better was my post polio. By then I had learned about a Post Polio Syndrome clinic in D.C. The clinic recommended that I trade my electric scooter in for an electric wheelchair. I suddenly had something of value and a mid-life crisis to go with it. I sold the scooter and bought a little boat.
The boat was a daysailor. Even though I didn’t know squat about sailing I had just read a book about a seventeen year old boy that had sailed a boat just five feet longer than the one I bought around the world single-handedly. I decided if he could sail around the world I could sail around Chesapeake Bay. I picked up sailing pretty quickly. More importantly everyone I knew was saying the same thing. They couldn’t believe the change the boat had on me. Sailing at once had become both physical and mental therapy.
Naming the boat had been easy. When I was in college my family had owned two runabouts both had been named some variation of Casey. Prior to the boat my hobby had been HO trains, something I had loved since a child. My only memory of my grandfather was him coming over to watch the TV show “Casey Jones.” My father was a huge baseball fan. While in the war (WWII), he played a lot of baseball. Apparently he was inclined to argue calls like the notable baseball manager Casey Stengel so his fellow soldiers gave him the nickname Casey. Add on to all of that my mothers initials were KC. I had dreamt of owning a boat ever since I could remember naming the boat was a synch. I named her Casey’s Dream. Later I would use the same name for my blog.
That was August 2003; before she was a month in the water she survived the tropical remnants of Hurricane Isabel coming up Chesapeake Bay. She was yare. Up until a year and a half ago we could afford the boat. Since then it has been getting harder and harder to meet the bills associated with owning a boat. My medical bills have been steady for the most part but now my daughter is having health problems. Even with the best health insurance coverage and the highest income my wife and I have ever had we are drowning in medical bills.
My daughter’s condition requires that I drive her everywhere. Despite not being able to work she has insisted on continuing her education. Obviously as a parent I have to do everything possible to help her do that. The problem is even with her cutting back to nine credits a semester my activity level is through the roof. Not only do I have to drive her to and from school everyday, and doctor visits weekly if not more, I have to do everything around the house that she used to do to help me out.
Post polio is one of those conditions that can be kept in check if you manage your daily physical activity. We are told, do as much as we can without doing to much. Until late last year, that meant brief periods of activity followed by longer periods of rest. Caring for my daughter does not allow for that. Now it is longer periods of activity with seldom rest periods. Usually rest comes in the form of days of complete exhaustion. This is causing my health to fail. So how does all this relate to healthcare and recessive economics?
My wife and I earn more than we ever have in the past. We have better health insurance than we have had in nearly twenty years. Despite never getting back to the point where we could consider buying our home we pay half of what others in our community do to rent our home. So we should be able to weather this economic down trend OK right. Hardly, with each increase in income or reduction in healthcare the cost everything else has risen. Not just a little either. From gas to groceries to cigarettes, everything is going up we all know this. Now imagine two or more visits to a doctor a week. Imagine paying 30% of three physical therapy sessions a week for three months on top of that.
Now throw in each new doctor only looking to see if the problem falls in his or her specialty instead of trying to see how each symptom might add up to something outside their specialty. Well you might think that your primary care doctor is doing this. You would be wrong. For instance, it wasn’t until an ear, nose, and throat doctor suggested that the only explanation for my daughter’s dizziness might be heart related, but “there is no reason to suspect that,” that things started happening. You see I had to ask my daughter’s doctor why there was no reason to suspect that, considering the heart problems left from a congenital heart condition. I had to tell him that she had residual heart problems even though it was on her “history.” “Physical History,” is an insurance farce. We all have to fill out this section of an intake sheet for each and every doctor we go to. The problem is they never even look at them, much less read them.
We make more than ever, we spent about half what most spend to live where we live, yet we are drowning. All the time we have been doing our best to keep Casey’s Dream, the boat afloat. Sailing has been a part of my life that affirmed my abilities not my disability. Life has other plans. In March Casey’s Dream experienced severe damage. The boat is about to be totaled by the insurance company. So we have to throw off the expense of a boat to pay our doctor bills, our food bills, and our fuel bills both house and cars. Our electric bill is about to increase by 88% or nearly double. An electric bill, which we have done our best to reduce usage where ever we can and it, is going to double in spite of our efforts.
In 2006 I began to blog on Democratic Party Builder, http://www.democrats.org/page/community/blog/barryconsidine. It was an inspiring experience. It inspired me to start my own blog a short time later. That blog is Casey’s Dream, http://caseysdream.blogspot.com. It is dedicated to advancing the cause of legalizing marijuana for medicinal purposes. While medical marijuana is not the only topic I blog about there it is the main topic. So as the political season heated up I decided I wanted to blog somewhere that had a larger readership. That is when I became Barry C aka Casey at Daily KOS (http://barry-c-aka-casey.dailykos.com/). Blogging will continue to do what sailing began to do for me five years ago, affirm my abilities. Since beginning to blog I have been actively involved in two political campaigns. I have testified before committees of my state legislature. I have even met with my congressman’s Senior Political Advisor.
It is my understanding that after the election this fall, despite all rhetoric from all the followers of all the various candidates the blogosphere will become quieter. It will not fall silent but many will feel that the fight is over, no matter what the outcome. Their candidate will have won or lost but the competition is over. Then there are others, like my self that will continue to fight for issues. Issues like universal healthcare will not magically become the rule of the land if a Democrat wins. Republicans will still oppose it. Quality education will stiff need its champions. Fair wages, equal pay for equal work, for everyone, including women is not assured no matter who wins in November. Global warming will not go away if the Democrats win by a landslide. Medical marijuana will not become a national law instead the law of a few states no matter the outcome. All of the issues that are driving this campaign still need voices. Writing a blog is one thing but writing a letter to the editor or your senator or your congressman or woman these are the things that feed the bulldog. Signing petitions, taking petitions around to your neighbors, joining in protest marches those are actions that change a nation. Political action doesn’t end at the end of a keystroke. It ends when you have changed your world. It may be as big as helping to get someone elected President. Or it may be as small as getting curbside recycling in your neighborhood or getting the busy body off of your homeowner’s association board.
As for me I see no end in sight. Casey’s Dream the boat may soon be a thing of the past but Casey’s voice is not going silent. It will continue to show up on blogs like Daily KOS and Casey’s Dream. My comments will show up on Huffington Post, Free State Politics, The NewsHole and many more. My representatives both federal and state will continue to hear from me – regularly. So if you see a guy with long hair and a grey beard rolling out of the Capital Building or rolling back and forth on a picket line in an electric wheelchair say hi to him. It just might be the electric wheelchair that launched Casey’s Dream the daysailor. It might just be me Casey of Casey’s Dream.