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What Kind of Freedom?  

Remembering Our War, and Considering Our Future

By Craig Maupin at http://www.cfidsreport.com

Chronic fatigue syndrome (CFS) is more than physically devastating.   This disease is an institution.   And for years, we have been locked within its walls.

We've been chipping away at the walls of societal, medical, and scientific apathy for decades. However, thanks to the dedication of researchers at the Whittemore Peterson Institute, National Cancer Institute and the Cleveland Clinic, we see a glimmer of light.    Perhaps this is the breakthrough that sets us free.   While only time and research will tell, and evidence is building now, the findings could be wrong.   Time will tell.

The film adaptation of Stephen King's Shawshank Redemption contains another compelling story about a struggle for freedom, a story set inside prison walls.    Two characters stand in contrast: Brooks and Red. Brooks is unprepared for life on the outside.   After years inside the walls, Brooks has none of freedom's requisites.   Few social contacts.    He's laid no career track.    He finds freedom alone won't heal years of neglect, scars, and isolation.

Like Brooks, Red (played by Morgan Freeman) begins to falter in the free world. Red appears destined for the same failed freedom of Brooks.    But Red finds hope.    Andy Dufresne's assistance makes all the difference.     Unlike Brooks, Red finds a healthier life.

Quality of life is more than being healthy and free.     Quality life is built with the assistance of society, of family, and of friends.    It is never built overnight.

The battle for freedom from this disease has been a long, difficult struggle.    We've lost thousands of sufferers along the way.   Many have lost families and friends.    They've lost careers, educational opportunities, and life's foundations.     Understandably, breaking free from this prison has received most of our focus.     But as with the case of Red and Brooks, what occurs to this community, so long neglected, after treatments become available should receive consideration as well.

Maintaining treatment for HIV an patient can cost 12,000 dollars a year.    Currently, federal and state programs cover many drugs for those who are HIV-positive.    Society allocates these resources to help the HIV-positive lead healthy lives.    Will similar assistance be provided to those suffering from illnesses caused by MLV?     Or, will MLV-positive patients, many of which did not build life's financial foundations while battling this disease, be released to a life of procuring medicines that may cost half an average salary?

What about those children with MLV illnesses who fell ill before receiving an education, social development, and a financial footing?     Decades of being bedridden during the formative years of life leaves permanent effects, altered paths, and scars.    Years normally spent building equity, education, and retirement savings were spent surviving, holding on.     For these young soldiers to be truly free, assistance will be needed.    Where, or from whom, will that assistance come?

From 1947-51, the United States funded the Marshall Plan.    A percentage of GDP was set aside to help Europe rebuild after a long, difficult war.     Someone rightly believed that without assistance, recovery is difficult.     Similarly, those who suffered from this disease fought a war to end public apathy for decades. But what is the plan to assist them?     During times of rapid revolution, who is speaking on their behalf?

It is an remarkable time in the history of this devastating illness.   Hopefully, recent findings will hold, and it will be a time to celebrate freedom -- with thankful hearts.    But, moving thousands of MLV-positive patients to "freedom" without life-restoring, but unnaffordable, treatments and assistance is not a true freedom at all.     We always should remember the price paid for freedom by those who walked through the war.     And long after the war, we need to consider what kind of freedom is won.