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.  

A new purpose

As of my last blog post, I was just starting on an adventure, and a rarity for ME/CFS (chronic fatigue syndrome) patients, a cross country trip.   The journey started really in July of 2014, when I pulled myself out of my bed in Boston, and with the help of ubiquinol (an antioxidant used to help improve energy production at the cellular level, particularly effective for mitochondrial disease patients) and coffee, got myself into a taxi, into a plane, traveling across the country to Mount Shasta, California.    Within two weeks, I went from 90% bed bound, to short walks, and driving my own car again.    My health improved so quickly, that I drove back cross country, with a car full of things to be used for a more active life in Boston.    

I can still recall the shift, when I crossed the border into Ohio.   Suddenly my body started to revert to the debilitating fatigue, pain, it had experienced when I was bed bound in Boston.    Within a few days of returning to Boston, I was becoming less and less functional, although somehow my body seemed to hold on a bit to the benefits of the time in Northern California.     

That experience, of the rapid improvement, the sudden relapse, and the subtle sensation of something changing when I crossed the Ohio border, opened my mind to the possibility that environmental factors might be a factor in my illness.    The puzzle pieces started to fit together.    Namely, the severe mold allergy that had been diagnosed in June, and another doctor's diagnosis of mitochondrial myopathy in August, shortly after my return to Boston from California.    The doctors themselves hadn't put the pieces together.   The physician who diagnosed me with mitochondrial disease, i.e. failure of energy production in the cells of my body, had assumed that the source of the damage to the mitochondria had been a viral infection.   But the experience in Shasta compelled me to look for a connection.   In a search on Google Scholar (one which I've never been able to precisely replicate), I found a definite link between mycotoxins and mitochondrial damage.    Then, searching for clinical applications, I found the work of Dr. Ritchie Shoemaker, and eventually the evidence put together by Lisa Petrison, that ME/CFS (myalgic encephalomyelitis/chronic fatigue syndrome for the un-initated) patients responded to locations, feeling nearly normal in some locations, even while they were severely debilitated in others.    

This led eventually to my trip to Montana, having found that there was a doctor in Bozeman who had been trained by Dr. Shoemaker, and having read numerous patients reporting positive location effects in Missoula and Bozeman.   Sadly for me, Missoula did not have a positive effect, but Bozeman did. 

   That month in Montana was full of lessons.   If you are an ME/CFS patient who responds to changes in locations, and find yourself suddenly regressing to bed-bound status, get out of that environment, even if you have to crawl.    Listen to your intuition.    A tent from Target in a lonely campground, which you put up in the dark with only your car headlights to help you see, can in fact be a healthier environment than a nice hotel in Bozeman to which you were referred by a doctor who primarily treats victims of mold exposure.   Cayotes and fresh air may actually be safer companions than a television in a hotel room in town.  Two weeks of camping in various spots in Montana led to such an improvement in my health that I was able to hike with my parents for the first time in over five years.   I was left with a formal diagnosis of CIRS (chronic inflammatory response syndrome), a condition which toxic mold in water-damaged buildings can induce, but can also be triggered by exposure to a variety of biotoxins.    I was left with hope, and even a promise of full recovery in a year.   

Sadly, full recovery has not yet materialized, and I have come to realize that minimizing exposure to mold and other VOCs (volatile organic compounds), emitted both by mold and by chemicals used in household goods and building materials, is much easier said than done. I flew back to Boston at the end of October 2014, and spent several days looking for any apartment or apartment share, within 2-3 hours of Boston that I could tolerate, i.e. any space which wouldn't trigger either debilitating fatigue or asthmatic coughing, and which I could actually afford on disability income.   I drove from Maine to Newport, Rhode Island, and found one place, an apartment share in Salisbury, Massachusetts, which my body could actually tolerate.    Then after a week there, my physical health started to decline again.   My vision began to black out, I started to lose my balance on stairs, and I found myself spending more and more of my day flat in bed.    These symptoms only increased over time.   Finally, a dear friend, also sensitive to mold, talked me thru leaving the apartment and spending the day on the beach (rather a daunting prospect in November in New England).   But on that beach, in air I didn't react to, my energy started to improve, I was able to walk again, and my mind cleared sufficiently to realize that while I loved the history, the scenery, the heady intellectual atmosphere in Boston and New England, staying there would result in returning to bed-bound status, where I would be utterly unable to take advantage of the very things I loved about New England.    

So I hit the road again.   Once again, with the help of chocolate, coffee, spicy V8 juice, ubiquinol, and hefty amounts of adrenaline, I survived a cross-country journey, with wind, snow, black ice, and some very questionable gluten-full pizza in Peru, Illinois.    I made it to Bend, Oregon, in time for a family Thanksgiving, and with full intentions to spend a few days with my parents in western Oregon, and then head south.    

A few rainy months later, I had sunk again to bed bound and housebound status.   Desperately, I clung onto those memories of walks in Shasta, of hikes in Montana, and tried to find a way to achieve that again.   At this point, I was utterly dependent on my parents, and the only hope was to fly some place where I could have meals and laundry taken care of, and hope that the two week recovery I had experienced in Mount Shasta, California would kick in again.   So I started looking.   Nowhere was there a place which was reasonably mold free, with the services I needed, which I could get to by plane.    Suggestions I received at this point were to find a relatively mold free apartment in a good location, or to go camp in the desert.    Neither of these were feasible for someone alone, at my level of functionality.   

I waited.   Eventually, in mid February, my parents decided to attend a retreat weekend in Mount Shasta, and I accompanied them.   I got there with sheer determination, lying in the back of my parents' car, my eyes covered with an eye mask, noise-canceling headphones on my ear, covered with blankets, doing everything I could possibly do to block out light, noise, and vibration from the road.   Somehow I survived the trip, and as we came within a few miles of Mount Shasta, I started to perk up.    I sat up in a cafe, in Weed, California, for a pleasant meal with family, and by the time we got to Shasta, I was managing short gentle walks again.      

I lived in Mount Shasta for three months.   First in a motel room with the windows open 24/7 to the fresh air.   Then on the deck of a friend's mobile home, and then on the deck of a home which was somewhat tolerable for brief periods during the day.   For two months, I improved.   I hiked, played scrabble with local friends, managed a harsh pioneer existence, cooking and doing laundry outside.     

In those months of improvement, I jumped into action, in trying to solve the problem that I myself had dealt with the previous winter.   Namely, that for severely ill patients with ME/CFS and other similar diseases, including severe cases of Lyme disease, that one could end up genuinely stuck in moldy, toxic environments.   Even with full knowledge that a good location, in toxin-free housing, improvement even recovery would be possible, patients might be in situations where they were utterly incapable of leaving.   They needed help to move, appropriate transportation, and most importantly a place to go.    A place where they were given adequate care, a peaceful restful environment, free of toxins which further compromised their immune system.   

Thus was born DFEND, NFP, a not-for-profit organization incorporated in the State of Illinois, whose sole purpose was to found such a place.   Yes, I have experienced relapses since those months in Shasta, the first one severe enough that my parents had to come, rescue me from Mount Shasta, and bring me home.   But this vision of a safe, healing environment, a 21st century sanatorium, has never faded.   And one day, bedbound patients will have a place to go to, and medical transportation 

to get them there.

www.facebook.com/dfendorg

www.survivingmold.com

Faith, hope and charity

Overheard on the radio today:   "Faith-filled words produce faith, fear-filled words produce fear".   While driving along quiet country roads in Massachusetts and New York State, I found myself reflecting not only on these words but also the values to which I originally dedicated this blog:  faith, hope and charity. 

Faith is defined by the Oxford English Dictionary as "complete trust and confidence in somebody or something".   Hope is "a feeling of trust, or an expectation and desire for something particular to happen".  Finally, charity is "love of humankind". 

During the uncertainties of life, especially when there is no clear solution, as is often the case with chronic illness, it is easy to cast aside these three qualities.  How is it possible to have faith, when your previous approach to life is no longer feasible, there is no cure, and treatments often only have a small chance of working?   How is it possible to hope, when there appears to be only the certainty of a life so different from what you had imagined?   How is charity possible, when your own misfortune seems to be absorbing all of your strength and energy?  

But by slightly altering our perspective, we can indeed rediscover faith, hope and charity.   We can have faith that while the primary circumstances which we face in our life may not immediately change, we can slowly begin to reshape our life in a way which gives us happiness and contentment.    Hope may return as we glimpse moments of joy, thru the sunlight wafting through our bedroom window, the birds outside, the changing patterns of clouds, or a kind act from a neighbor or friend.  

And charity?   It may help to think of it not as something we "do", but rather as a feeling poured to others.   We can take the time to give a word of encouragement, to those who come into our lives, whether it be a clerk in a grocery store, a busy doctor, or even on-line friends who face similar circumstances.  

It is amazing to sit back and see who is brought into our lives, to give us the opportunity to express faith, hope and charity.   On the second day of this journey across the United States, I was testing out my new DSLR camera, and pulled over to the side of the highway, oblivious to the fact that the beautiful scenery happened to be right in the middle of a construction zone.  

A few minutes later, while driving along, content after my spree of picture taking, I see lights of a state trooper's vehicle in my rearview mirror.   Fortunately, he kindly forgave my failure to notice the work zone, and asked to look at my pictures.   As we were talking, he asked if I had a website, and I mentioned my blog.  As I was writing down the address, it turned out that his daughter had ME/CFS, and that he was very familiar with the debilitating effects of this particular chronic illness.   What are the odds?

One could say (as one friend did) that the odds were 100 million to 1.   Or perhaps we can recognize the fact that often there is more that we share as fellow human beings than that separates us.   My experience on the side of I-90 W, was that there was love of humankind on both sides of that rolled down window, and that this was possible despite or perhaps because of shared experiences.    Those moments of charity can then give us strength to hope and to have faith in the possibility of a better life, first emotionally and spiritually, and then in the end, physical improvement as well.  

Tragedy, disappointments,  uncertainties do not necessarily imply more tragedy, more disappointments, more uncertainty.   Today, on September 11th, (or rather yesterday, as I look down at my computer's clock and realize we are now in September 12th), we can reflect not only on the lives lost to our nation 13 years ago, but also on the greater charity and love of country which such a tragedy caused.   God bless the families so affected, and may God bless all who face tragedy or suffering of any kind, and may we be thankful that this day passed in peace, and for all the times of uncertainty which lead us along the path to enlightenment, to greater faith, hope and charity.  

  
 

This blog has taken a back seat to many things over the last few years, but recent events have made me consider taking up writing again.   Those in-between years have been a roller coaster, going on and off medical leave, trying to maintain my position at the university while continuing to make enough progress in my health to actually be able to work.   Finally, a few puzzle pieces are starting to fit together.

First, last fall, I had a 2 day exercise/stress test done at the Workwell Foundation in California, which is one of only two places in the world that does this for ME/CFS patients.   I paid for it on my own, researched it on my own, then got one of my ME/CFS specialists to sign off on it.   I truthfully wasn't expecting much, other than an estimate of my anaerobic threshold, which would hopefully allow me to use a heart rate monitor to pace myself, and to gradually incorporate small amounts of exercise back into my life.   But the results got sent to my primary care doctor who got very excited, and said that the test may indicate mitochondrial dysfunction.   Two specialists later, and it turns out he was right.....there does indeed appear to be mitochondrial dysfunction, secondary to the viral infections which led to ME/CFS in the first place.  

Second, this summer, despite spending 90% of my time in bed during July, I determined I would make my annual pilgrimage to Mount Shasta, California.   I have been involved in a production, the "I AM" Come Pageant, on the life of Jesus there in an outdoor amphitheater since the age of 3.   To better survive the plane trip, I used a high dose of CoQ10, plenty of electrolytes in my water, and compression stockings.   Amazingly, I found I made the trip in fairly good shape (for a person who was practically bed bound right up to making the trip!), and continued to improve during my stay in Northern California.   This was to the point that family and close friends noticed the difference, unlike the usual invisibility of changes in chronic illness.   I then succeeded in driving back cross country to Boston.   Yes, I was desperately tired by the end of the trip, but I still made it!   It was only upon crossing the border into Ohio that I noticed subtle signs of a relapse.   That relapse continued the longer I stayed in Boston, despite the good effects of CoQ10 and Mestinon -- a drug designed for myasthenia gravis patients, but one which has been used to combat the effects of POTS, postural orthostatic tachycardia syndrome, something which frequently accompanies ME/CFS.  

So, now I am back on the road again.   The journey will be slower than any of my previous cross-country trips, as I attempt to discover if there are indeed places where I feel better, where the allergen load is low enough, the scenery beautiful enough, the air clear enough, the peace perceptible enough, that I can begin to make progress.   Despite my natural tendency to rush thru everything, my hope is to spend time writing and taking photos along the way, so as to be able to share my journey towards better health with you all, and hopefully in so doing, assist others in untangling their own ME/CFS puzzle.  

In July of 2010, I was finally diagnosed with a debilitating condition known in the United States as either Chronic Fatigue Syndrome (CFS) or Chronic Fatigue Immune Dysfunction Syndrome (CFIDS).   This was not surprising, but instead was a confirmation of the fatigue, aches and pains I had been living with at that time for over a year.   Nor did it give me an infusion of hope or understanding, as the condition is very slowly being understood by the scientific community, and no definitive cause has been identified.   I am not unique in the condition, it is an affliction experienced by up to 17 million worldwide.   But, the disease in my case struck at a particular awkward moment, beginning just four months after I had begun a tenure-track position as an assistant professor at a large research university, and had moved to the opposite side of the United States.  So, I am trying to hold on, not only to a semi-normal life, but also to a position I dearly love but which requires a level of physical activity, through research and teaching at the university that are not seemingly possible at the moment.  Every possible solution is worth considering at this point, with the current constellation of possibilities including a raw food diet, three weeks at the Hippocrates Health Institute in December, and currently a 6 month treatment with an antiviral known as Valcyte.  

In this blog, I'll share my thoughts as I endeavor to recover from CFS, and little by little return to my neglected intellectual life.   My hope is that my story will be encouraging to other CFS patients, possibly providing a voice to those of us who lived very full, intellectually stimulating lives before CFS, and who have not yet reconciled ourselves to a "new normal" of fatigue, and loss of cognitive abilities.   For that reason, I am interested in hearing from other patients, others who are learning to live with CFS, who every day try to make small steps towards recovery, even when there seems to be no easy solution.