John Herd
johnherd@johnherd.com
Several hundred people have written to me about an article I wrote =20
entitled "Medical Entrenchment and ME/CFS." (1)
The article described in part my experiences with entrenched flawed =20
beliefs about ME/CFS within my family.
Readers first reactions have been to say how sorry they are for what I =20=
went through. Experiencing the minimalization and disbelief about the =20=
illness and what it causes a person to go through is something no one =20=
can be prepared for.
And yet as I read the letters and have been trying to gradually write =20=
back to each person whom has written to me, I have wanted to explain =20
why I do not feel sorry for myself. I've wanted to find the means of =20
explaining that while their caring letters are deeply appreciated, =20
they need not feel sorry for me. How do I explain why it is that when =20=
I witness flawed bias about ME/CFS and feel my inner cauldron of =20
emotions getting churned up, my feelings are not for myself but for =20
others?
And so I wrote the following.
Losing almost every remnant of my past healthy life, my family aside =20
from my daughter, my home, career and incoming, my social networks and =20=
all the activities I loved was emotionally crushing at the time. =20
Although those years now feel like a brief time, when it was happening =20=
they felt like an eternity, I felt as if I was lost inside an infinite =20=
vacuum. As difficult as surviving in that vacuum was, I had a magic =20
compass to guide me out.
That compass was built not of matter but of life experiences.
Thirty something years of prior wonderful living had allowed me to =20
build within myself an inner foundation upon which I could rebuild =20
myself and my world again. I had an inner confidence and insights =20
acquired from years of living life to the maximum to steer me along my =20=
new journey. I knew who I was even if many of the people around me had =20=
lost sight of the real inner John.
So too did I have thirty something years of living a life as good as =20
it gets. Though one can always yearn for more, those years were full =20
of the best of love and friendships, gratifications and rewards of =20
fulfilled opportunities, quenched quests of curiosities and adventure. =20=
My life had been 'the good life' and was racing ahead towards better =20
yet when I contracted ME/CFS.
I had been raised with a silver spoon in my mouth, and once on my own =20=
replaced it with a gold one, maybe not in terms of excessive economic =20=
wealthy, but certainly in terms of living and learning wealthy.
The illness and the ramifications of closed minded thinking about ME/=20
CFS could steal from me all my economic wealth, family and =20
friendships, life as I had known it, but not that living and learning =20=
wealthy, not the inner John that had been tempered inside me.
That was my compass and the foundation upon which to build a new life. =20=
And build a new life I did, complete with vast new insights from all I =20=
was seeing and learning in my new life. My advocacy activities, =20
meeting so many people and hearing of their experiences, gave me new =20
appreciations and perspectives on what 'quality of life' really is =20
about. ME/CFS and those afflicted with it helped me recalibrate my =20
ruler with which a now measure quality of life.
Though I may not have good health, economic comfort and all that comes =20=
with it, nor an ability to do all the kinds of things I was able to do =20=
before getting ME/CFS, I do have a quality of life. It's a quality of =20=
life that no one and nothing, even poor health can take from me.
This is why I can not find within myself sorrow for what I lost, nor =20
anger about those whom betrayed me along the way. Although the first =20
leg of my journey to rebuild my life was painful and rocked with =20
betrayals, each of those people who betrayed my trust in their own =20
ways propelled me towards finding the sweetness and rewards of a =20
deeper richer quality of life.
So no, I do not feel sorry for myself -- I feel sorry for all those =20
who become afflicted with ME/CFS before having the opportunity to =20
build such a sturdy foundation of learning and experiencing with which =20=
to build a new life. I feel sorry for those whom have been unable to =20
taste so much sweetness of rewards, the joys of adventure, and all of =20=
life's mortar so essential for constructing a better life ahead. I =20
feel sorry for those who are missing out on the intoxication of =20
laughter and the giddiness of happiness in all its colors.
I can't give to others some of my years of good living and good =20
experiencing, though I wish with all my heart I could.
All I can do is keep making an effort to move ME/CFS advocacy =20
initiatives ahead, most notably medical research.
Above all else, advancements in medical research are what will someday =20=
allow people afflicted with the ME/CFS to once again taste all the =20
sweetness of full spectrum living they so dearly deserve.
That is my future, that is their future, but we can not get there if =20
each and every one of us doesn't financially support moving that =20
research ahead.
Medical research costs a lot, far more than what a small portion of us =20=
can afford, but research can accomplished attaining our freedom from =20
the agony of ME/CFS if each and every one of us gives what we can.
I'm not talking about our each contributing huge checks, but if each =20
of us invested the equivalent one or two magazines, cappuccino drinks =20=
or snacks a week our contributions would get us the research =20
advancements we've all been waiting for.
This is why I ask to people, "Have you bought a piece of our future?" =20=
The general public is not going to do it for us, the government has =20
made it clear that it can't be depended on to do it, we are going to =20
have to do it for ourselves.
This month the Whittemore-Peterson Institute (2) will be revealing =20
more details about what it is doing to move our research and eventual =20=
treatment options ahead. Although I am not affiliated with the =20
institute, I was fortunate enough to privately hear just a hint more =20
of their strategy and what may be announced.
No time during my 20 years of having ME/CFS and being involved in =20
advocacy have I felt so encouraged by an organization and the =20
potential of its strategies.
I know I am going out on a limb, but I'll say I do have faith that WPI =20=
may be if not THE compass that will guide us out of the confines of ME/=20=
CFS, at least the needle pointing the way. Let's give them the =20
economic fuel to do so as quickly as possible.
-------------------------
(1) Medical Entrenchment and ME/CFS
=
http://cfsknowledgecenter.ning.com/profiles/blogs/medical-entrenchment-and=
-mecfs
(2) Whittemore-Peterson Institute
http://www.wpinstitute.org/=20=
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