A Dispatch From Bed

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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I Just Ate for the First Time in 18 Months 

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What’s your favorite food?

Okay. When was the last time you ate it?

Briefly, if you will, imagine going 18 months without that food.

Not exactly a monumental feat, but it is certainly less than ideal. In other words, you might get pretty grumpy, but you would survive. Okay, but next picture yourself eating nothing at all for 18 months. Now that is quite possibly life-threatening and definitely insufferable.

And finally imagine, after enduring all that misery – and several existential breakdowns – that things start to improve, life begins to reemerge. Having gone through the worst of the worst, just think how unbelievably good your favorite food, or any food for that matter, would taste when you finally get to sink your teeth in, feel the texture, and really let your tastebuds run wild.

This is now my reality. It is both humbling and invigorating, unfair and lucky. Just as my condition worsened so mysteriously, my ability to eat food has curiously returned. It happened so innocuously too. After a year and a half too sick to consume solid food, I tried a bite of pie on my birthday with the courage of another year behind me. It set off a small frenzy as I tried to eat my favorite foods for the first time in 18 months. It was a feast. Well, if you can call three bites of pie a feast. But the next day I tried gnocchi, then banana bread, then pasta, then fruit tart. It was marvelous.

As horrifying as it has been to have my body fail, it has been commensurately revitalizing to have it gradually start working again. And as terrified as I am that it will begin to fail again, I have learned, among other things, that with this disease you have to enjoy things while you can or you may never get to again. And also, where there is great deprivation there is the potential opportunity to regain and experience life in a way few people will.

I will say, however, life is still an immense struggle. I’m lucky to have one meal which I can chew each day, and it is always followed by immense and prolonged pain in my jaw. Have you ever been punched in the face? Yeah, it’s kind of like that. Well, actually it’s worse than that. It feels like the pain of being punched in the face and the pain of being stung by a bee had an evil child with a fondness for kicking people in the shins. But damn, the taste of blueberry pie is totally worth it!

And this comes from a guy who used to only eat what was prescribed on his daily diet plan. For most of my adolescence and adult life I ate only bland foods and in only small servings. Well, after the hell I’ve been through, assuming my health continues to improve, I’m going to eat anything and everything I want. No more rice cakes and egg whites, but definitely pie and probably a lot of cheese. Yes, definitely lots of cheese.

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