What I most need to tell myself about 2016

Several weeks ago, I joined a group of writers, and others calling themselves business artists, truly using their creativity in their business activities, led by Jeffrey Davis, in Quest 2016.   This group wrote on a series of prompts thruout the month of December 2015, in order to think thru, to envision their 2016.    Naturally, because of the uncertainties of life brought about thru ME/CFS (myalgic encephalomyelitis/chronic fatigue syndrome), I find myself responding to the first prompt, by Susan Piver, on January 1st 2016.    But starting out the New Year writing can only be a good thing!

What I most need to tell myself about 2016 is.....

In writing this, I found myself identifying so much with a similar blog post by my friend Katherine Reynolds, a writer and a poet, who shares my background in academia, and who like myself began her ME/CFS journey in 2009-2010.    Both of us suffered from an illness which is extraordinarily disabling, as those who have read my past blog posts already know.   Both of us have also been blessed by meeting each other and many other fellow patients with these complex illnesses in Facebook groups for people with ME/CFS.   While I will not speak for her, I have found that after the process of grieving for a lost life, I have seen a rebirth, with a new group of friends, new goals for life, transformation of life.

Having happened upon the field of economics towards the end of college, I fell deeply in love with it in my first post-graduate course in Advanced Microeconomic Theory at the University of Oregon.    In my undergraduate years, I had studied physics, but also had been fascinated by the whole range of human thought and study, enjoying my courses in the humanities and social sciences as much I did those in physical science.   In economics, I found the balance between the study of human behavior and the beauty of mathematics.   In development economics and macroeconomics, my work became a combination of  using mathematics to study complex systems, using history and analysis of institutions to understand better determinants of economic growth.    

But in my focus on academia, I did neglect my social life, and focused solely on my work and on my spiritual activities, rather than on marriage, children, friends.    Then suddenly in February 2010, the slow collapse began.   Cognitive skills slowly became overcome by fatigue, by post-exertional malaise, as a bout of bronchitis seemed to damage my immune system sufficiently that I was left with long-term debilitating illness.   At one point, I couldn't even read books, let alone read and write highly technical papers in economics.   Everything seemed to be lost, my career, my ability to engage in church and other spiritual activities, even my ability to deal with normal activities of daily living.

Then, I began to cough in basements, and my doctor followed a lead with a strikingly abnormal exercise test.   Diagnoses of asthma, mold allergies, mitochondrial myopathy, led me to the work of Dr. Ritchie Shoemaker, and led me to a path of treatment which has the potential to lead to full recovery.   I found that my genotype left my body vulnerable to toxins from mold exposure, with such toxins building up in my body over time.   It had started back in college, if not before, as stress and low levels of mold exposure had slowly compromised my immune system, leading to eventually to full-fledged ME/CFS.    Avoidance of mold, along with a long protocol of treatment, has allowed me to slowly recover functionality.    I can read again, happiness and hope has returned to life, and ambition has come back to me.    Yes, I still spend much of every day in bed, my mother still cooks many of my meals, takes care of other details of daily living for me, but I can now plan the future.

Multiple times over the last year, I experienced the freedom of the locations effect and mold avoidance, where avoidance of toxins, living in a pristine environment, led to an abatement of symptoms.   DFEND, NFP (the Dussault Foundation for the Establishment of Non-Toxic Dwellings) was started to try to provide homes where patients like myself could benefit from such an environment, with adequate care and treatment to allow for true recoveries.   My hope is that 2016 will see continued progress towards making DFEND centers and communities a reality.  

But in the midst of this, what do I need to tell myself?   First, oxygen on myself.   I determined to start DFEND in the midst of severe illness, because I believe in the importance of this happening, and the sooner the better.   But without full recovery on my part, making the dream real will be extraordinarily difficult.   I am thus walking a tightrope, between pushing myself enough to allow the nonprofit to progress, but still pacing myself, doing all the things which will allow for improved health on my part.  

Secondly, the vision is right, and friends will come, just as many have already arrived to allow me to get this far.    In the thirty year history of Chronic Fatigue Syndrome, since the first cluster outbreak at Incline Village, Nevada in the 1980s, advocacy and scientific research for ME/CFS and other multi-systemic diseases has faced controversy, division among doctors, and members of the patient community.   But not everything is controversial.   We know that a substantial number of patients have benefited from moving to good locations, from adequate support, from living in a non-toxic environment, and that establishing a center where such an environment will be available to many patients will greatly increase the odds of more patients recovering.    By keeping the focus of DFEND on this, on evidence-based treatment, and on educating everyone on what is required for healthy housing, we can genuinely help relieve human suffering, and out of this we can develop a unified community of patients and supporters.  

Finally, the road ahead may not be linear.   Ups and downs may be ahead, both in my own health journey and for DFEND NFP.   I can think back to that moment last July where I had lost weight, was spending 95% of my time in bed, and was rapidly losing hope.   I nearly didn't go to an appointment with Dr. David Systrom who one of my other doctors had referred me to.   After all, so many other doctors had failed to help, or even have any ideas about what might help, or what might explain my health struggles.    But I went.   That appointment led to hope, to a diagnosis of mitochondrial myopathy, and eventually to treatment which allowed me to be vertical again, to read again, and to start this crazy journey across the country, and towards the establishment of DFEND.   So you never know what lies ahead.   Keep breathing, keep hoping.