Several hundred people have written to me about an article I wrote
entitled "Medical Entrenchment and ME/CFS." (1)
The article described in part my experiences with entrenched flawed
beliefs about ME/CFS within my family.
Readers first reactions have been to say how sorry they are for what I
went through. Experiencing the minimalization and disbelief about the
illness and what it causes a person to go through is something no one
can be prepared for.
And yet as I read the letters and have been trying to gradually write
back to each person whom has written to me, I have wanted to explain
why I do not feel sorry for myself. I've wanted to find the means of
explaining that while their caring letters are deeply appreciated,
they need not feel sorry for me. How do I explain why it is that when
I witness flawed bias about ME/CFS and feel my inner cauldron of
emotions getting churned up, my feelings are not for myself but for
And so I wrote the following.
Losing almost every remnant of my past healthy life, my family aside
from my daughter, my home, career and incoming, my social networks and
all the activities I loved was emotionally crushing at the time.
Although those years now feel like a brief time, when it was happening
they felt like an eternity, I felt as if I was lost inside an infinite
vacuum. As difficult as surviving in that vacuum was, I had a magic
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
build within myself an inner foundation upon which I could rebuild
myself and my world again. I had an inner confidence and insights
acquired from years of living life to the maximum to steer me along my
new journey. I knew who I was even if many of the people around me had
lost sight of the real inner John.
So too did I have thirty something years of living a life as good as
it gets. Though one can always yearn for more, those years were full
of the best of love and friendships, gratifications and rewards of
fulfilled opportunities, quenched quests of curiosities and adventure.
My life had been 'the good life' and was racing ahead towards better
yet when I contracted ME/CFS.
I had been raised with a silver spoon in my mouth, and once on my own
replaced it with a gold one, maybe not in terms of excessive economic
wealthy, but certainly in terms of living and learning wealthy.
The illness and the ramifications of closed minded thinking about ME/
CFS could steal from me all my economic wealth, family and
friendships, life as I had known it, but not that living and learning
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.
And build a new life I did, complete with vast new insights from all I
was seeing and learning in my new life. My advocacy activities,
meeting so many people and hearing of their experiences, gave me new
appreciations and perspectives on what 'quality of life' really is
about. ME/CFS and those afflicted with it helped me recalibrate my
ruler with which a now measure quality of life.
Though I may not have good health, economic comfort and all that comes
with it, nor an ability to do all the kinds of things I was able to do
before getting ME/CFS, I do have a quality of life. It's a quality of
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
anger about those whom betrayed me along the way. Although the first
leg of my journey to rebuild my life was painful and rocked with
betrayals, each of those people who betrayed my trust in their own
ways propelled me towards finding the sweetness and rewards of a
deeper richer quality of life.
So no, I do not feel sorry for myself -- I feel sorry for all those
who become afflicted with ME/CFS before having the opportunity to
build such a sturdy foundation of learning and experiencing with which
to build a new life. I feel sorry for those whom have been unable to
taste so much sweetness of rewards, the joys of adventure, and all of
life's mortar so essential for constructing a better life ahead. I
feel sorry for those who are missing out on the intoxication of
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
experiencing, though I wish with all my heart I could.
All I can do is keep making an effort to move ME/CFS advocacy
initiatives ahead, most notably medical research.
Above all else, advancements in medical research are what will someday
allow people afflicted with the ME/CFS to once again taste all the
sweetness of full spectrum living they so dearly deserve.
That is my future, that is their future, but we can not get there if
each and every one of us doesn't financially support moving that
Medical research costs a lot, far more than what a small portion of us
can afford, but research can accomplished attaining our freedom from
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
of us invested the equivalent one or two magazines, cappuccino drinks
or snacks a week our contributions would get us the research
advancements we've all been waiting for.
This is why I ask to people, "Have you bought a piece of our future?"
The general public is not going to do it for us, the government has
made it clear that it can't be depended on to do it, we are going to
have to do it for ourselves.
This month the Whittemore-Peterson Institute (2) will be revealing
more details about what it is doing to move our research and eventual
treatment options ahead. Although I am not affiliated with the
institute, I was fortunate enough to privately hear just a hint more
of their strategy and what may be announced.
No time during my 20 years of having ME/CFS and being involved in
advocacy have I felt so encouraged by an organization and the
potential of its strategies.
I know I am going out on a limb, but I'll say I do have faith that WPI
may be if not THE compass that will guide us out of the confines of ME/
CFS, at least the needle pointing the way. Let's give them the
economic fuel to do so as quickly as possible.
(1) Medical Entrenchment and ME/CFS
(2) Whittemore-Peterson Institute