The room is completely dark, even after I take off the washcloth and tanning goggles shielding my eyes from encroaching light. When Ryan Prior interviewed me for Forgotten Plague, the documentary he co-directed about MECFS, the body I had worked so hard to obtain was slowly wasting away, but little did I know at the time how much it would deteriorate. Gone now are the muscles I spent thousands of hours accumulating and sculpting.
When Ryan asked me about my regression from fitness trainer and bodybuilder I lived in a 300 sq. ft. studio by the beach, now I’m confined to a mattress in a small mountain town in rural California.
It’s afternoon, about two o’clock, and I just woke up for the second time today. The first time was at six so I could be hooked up to a saline and vitamin IV.
This seemingly rudimentary IV cocktail has proved to be quite effective for my recovery. It is almost hard to believe. In fact, for some it is hard to believe. Recently a family member, a physician’s assistant educated at Stanford, told me I didn’t need saline and that the benefit is all in my head. “Just drink water,” she said.
I sent her this lovely bit of research from Erica Verrillo’s Chronic Fatigue Syndrome: A Treatment Guide.
“In the November 1, 2006 issue of the Lyndonville News, Dr. Bell unequivocally states that IV saline is ‘the most effective treatment for severe ME/CFS that I have found in my 21 years of looking.’ To be most effective, a liter of saline should be administered over the course of an hour or two.”
But this is by no means the only ignorance about my situation. A doctor recently asked my mom what I do in bed all day. “Does he watch TV?” The doctor asked.
I thought to myself, “Yeah Doc, it’s a blast, I watch Family Guy and Seinfeld reruns all day. No, come on man, I live in a dark cave. Caves don’t have TVs.”
This same doctor prescribed my saline infusions. And as I understand it through my haphazard research, for me, saline is about fluid retention and flushing toxins from my kidneys. And drinking water just doesn’t do the trick.
Saline has by far been the most beneficial treatment during the 18 months I’ve now been bedridden. That’s 18 months horizontal in a dark room having the world’s longest staring contest with the ceiling—no breaks, no “I’m just gonna go outside to grab some fresh air.”
For months, orthostatic intolerance and extreme muscle weakness, among other things, have riddled my body leaving me unable to lift my head, stretch my limbs, or produce any sound more audible than clicking my tongue.
Now, however, with daily saline infusions I can sit at a 45 degree angle and speak polysyllabic words, sometimes even short sentences. And people can actually hear me. It’s wonderful. To go from mute to audible is an invigorating and albeit humbling experience.
Don’t get me wrong, my life still sucks. It’s anything but peachy and I’m a pretty optimistic guy, but I’ve found that hope and love always trump desperation and despair. Luckily I have hope and love through my friends, family and the MECFS community. And in this single moment in time that’s all I need.
* An earlier version of this post was featured on the Blue Ribbon Foundation’s blog in July 2016.
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