Coping with CFIDS/GWI/PTSD. Taking Out The Trash.

trash2We all do it at some point-

We “take our trash out”.

Be it in urban or rural areas, the chore is basically the same. We accumulate garbage in our lives, we bag it and we get rid of it. As an environmental studies student, I started looking at trash differently. I started looking at what I could recycle, what I could compost and what really was trash. I started trying to re-use more, I started trying to conserve and I started trying to be a member of a conscious stream of people living on this planet that are trying to do so in a sustainable manner. Coping with CFS/GWI/PTSD disease has much in common with “taking out the trash”.

 I was watching a movie one day during a “resting period” as we patients so call that state of being prone. Like a viper with heat sensors, our disease can strike its’ host down within seconds. Then BAM, you need to rest. The name of the movie was “Peaceful Warrior” and I loved Nick Nolte in the role as a mentor for a young man “coming back/fighting” to regain his athletic status after a major injury. As I was watching this motivational film, Nolte said something like “you have to clear your mind and life of all the trash, before you can become a true warrior”. I immediately stopped the movie and was struck by this line.

 Coping with HHV-6A, EBV, CMV and a plethora of bacterial infections gives new meaning for finding ways to recycle and re-use. One becomes so adept at coping that new skills are dreamed up, thought of and implemented in order to survive this disease. But one tool stands out as being imperative to use in fighting and coping with this illness. One must learn to “take the trash out of their lives”. We cannot afford to carry emotional, physical or mental baggage around with us if we are to cope well and live any sort of quality of life.

We need to get over our anger about being banished, discounted and even dying because of this disease. All of the societal, medical, familial and community “stigma” associated with our disease which we tend to try and deal with in a mature manner, needs to be “trashed” and “let go of”.  We need to  break paradigms and disassociate with the “stigma” of this illness.

 We are not the only group in the history of human beings to be discriminated against. When I look at prejudice against race, ethnicity and culture my stomach coils at what some folks have endured. Some have done so successfully and some not so successfully.

Recently, there was an article in The New Yorker that talked about the death sentence of Cameron Todd Willingham. Mr. Willingham was convicted, tried and put to death for the murder of his children. He was accused of setting a fire in his house. Arson investigators were sent in and testified that there was irrefutable evidence that the fire was “caused by arson and that Mr. Willingham was the culprit.” Eyewitnesses originally stated that Mr. Willingham “tried everything he could to get back into the house which was exploding violently”  and “had to be restrained by authorities on site, from entering the exploding house to try and save his children”. The eyewitnesses ended up recanting their original perceptions, after rumors circulated that the Fire Investigators had determined that this was in fact “arson” and that only Mr. Willingham could have done the arson. This is my recollection of the New Yorker article.

 What was very interesting was that a Hail Mary appeared in the Willingham Case. A PhD Chemistry major from Cambridge University named Dr. Gerald Hurst reviewed the case and scientifically dispelled the original Arson Investigators case and scientifically proved beyond reasonable doubt that the fire may/could not have been caused by arson. The Hail Mary was ignored and Mr. Willingham was executed.

Dr. Gerald Hurst is an acclaimed Fire Investigator and Scientist. The original fire investigators looked at the house fire in the manner in which they were taught to do so. The old ways of understanding and investigating house fires are “outdated”, “unscientific” and mostly are done by what “was taught by the mentor.”  Not only are their understandings outdated, the old ways  “have been scientifically dispelled and have been proven to be false”.

Change is now on the way for how fires are investigated. Change is on the way for how our diseases are investigated and determined. New studies, drugs, testing and knowledge is coming to our rescue. For some, not soon enough.

 What change is in store for us as CFS/GWI/PTSD? What do we do now and whom do we go to for help? Our first guide is to use our “inner strength” and to self-care as much as possible in order to live a quality of life where we can even “handle” the physical chore of taking out the trash. Humiliated, disabled and out of steam, many of us turn towards anger and resentment.

We need to take note of the fact that we are on groundbreaking territory here. We are dealing with a medical community that has not been able to even understand how to prove scientifically what is causing our neurological, cognitive, muscular, joint, insomnia, anxiety and extreme fatigue symptoms.

 Mr. Willingham refused to plea bargain for his life. He refused to say he was guilty in exchange for a life sentence instead of execution. He maintained his innocence until he was executed. Sometimes the only tool we can grasp onto as  patients is that we are innocent.

I am amazed at the amount of integrity, intelligence, athletic abilities and extreme “go getters” that have been afflicted with these diseases. Although we are not treated as “go getters”, you and I know what we are. We ran marathons, did triathlons, were athletic stars, were extreme explorers;  pilots, corporate leaders, parents, students and children.  The faces of these diseases are anything but that of “slackers”.

Transitioning from the “victim” to “victor” mentality takes endurance and humility. I challenge each one of us who are coping with CFIDS/GWI/PTSD to “take out the trash” in our lives and unite to bring funding and awareness needed in advancing towards viable research for answers to treat these diseases.

Julia Hugo Rachel

Very Lucky Girl on Valcyte

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