Jamison Hill Has A Cold 

Jamison Hill, holding a shot of Jameson Irish whiskey in one hand and a glass of kombucha in the other, sat at the end of the bar between two gorgeous women who were waiting for him to speak.

Jamison was sick. He was the recipient of an exceedingly common ailment. So common in fact, most people call it insignificant. But when it afflicts Jamison it is very significant. It can throw him into fits of intense panic, paranoia, and even obsessive bouts of cleaning. It can be life-threatening. Jamison Hill has a cold.

Okay, this is the part of the post where you say, “What in the name of Goose Gassage is he talking about?” Well, first off, thanks for tolerating that weird introduction — an homage to one of my favorite pieces of writing. And now let me explain. 

My favorite magazine article ever written is Gay Talese’s “Frank Sinatra Has a Cold.” What is most fascinating about the article is that Talese never actually interviews Sinatra. Instead he observes Sinatra from afar for a few weeks while he has a cold. Among other things, Sinatra comes across as a crabby, entitled celebrity. In one passage Sinatra is in a bar and pokes fun at a young screenwriter’s footwear. Apparently he didn’t like the guy’s boots. Come on Frank, not everyone wears Spanish leather, or whatever the hell kind of shoes celebrities wear. 

The two become combative, then Sinatra says the writer’s last work, a movie called The Oscar, was “crap.” The odd thing is that Sinatra was actually in the film, so he was calling a film he appeared in crap. This makes about as much sense as spitting in your own food. But hey, I’ll hold my judgement. He did, after all, have a cold. 

After reading the article I came to the conclusion that perhaps it’s not a good idea to hang out in a bar when you’re sick and then try to make fun of someone who wrote the screenplay for your last movie. That lesson will definitely come in handy for me one day (#ThanksFrank).  

Sinatra’s pattern of arrogance and irritability continues throughout the article. And oddly, I can sympathize with him; well, except for the entitled celebrity part. Having a cold is just about the worst thing that everyone in the world will have to deal with countless times in his or her life. Although a trip to the DMV is a close second. Personally, a cold turns me into the worst version of myself and the world’s biggest baby. And that was before I got MECFS, a disease that makes a hug feel like you just got locked in a basement with that gimp guy from Pulp Fiction. 

Ouch!

Since I came down with MECFS six years ago, the occurrence of a cold has gone from hyperbolic inconvenience to life-threatening siege on my body. Now the latter may still seem like hyperbole, but let me elaborate. 

I’ve endured three colds, or flus, or whatever you want to call them, since I’ve had MECFS. The first, about six months in, was not too bad. I recovered in a week. The second, January 2015, was horrible. It is the reason I became bedridden. I hadn’t been sick in almost four years and I distinctly remember saying I wouldn’t catch the bug that was going around. Jinxed it

While my health had been declining gradually the previous year, the cold nearly took me out for good. One day I was walking around outside, the next I was too weak to brush my own teeth or get out of bed. There were other factors too. I may have taken too much generic cough medicine, which I’ve heard is chemically similar to crack or meth or one of those adult party favors. 

In many ways, 18 months later, I’ve yet to recover from that cold. But I have recovered some; just enough to catch another one. 

Like many awful things, my recent cold started mysteriously. On Friday, October 7th, my allergies were really bad. Or so I thought. My sinuses were inflamed, eyes burning, all that fun stuff. And now a few days later it’s a full-blown mucous party in my head. And in case you’re wondering: there ain’t no party like a mucous party, ‘cuz a mucous party don’t stop. 

Who would have thought I could fit a Coolio and Sinatra reference in the same blog post? 

Anyway, whenever I get a cold I panic. Big time! Maybe not externally, but on the inside it feels like a mix between “Uh oh! I forgot my wallet and the cashier needs me to pay for the 27 bags of avocados I just had her ring up,” and “Whoa . . . I just took ‘shrooms in the middle of the desert. Why did I just take ‘shrooms in the middle of the desert? Hey, hey, guys? Why am I in the middle of the desert? Guys? Guys?! Hey wait, where did everyone go?” Yeah it’s that bad, because being sick on top of being sick with MECFS is a scary thing. I mean how many sicknesses can a guy handle? I already have three active viruses roaming my body like one of those iRobot vacuums (which I really want). Can I really handle a cold on top of it? And if I can’t, what would that mean? 

Well, luckily my body has handled this recent cold fairly well albeit worse than my pre-MECFS days. Within three days I went from sitting up, talking to my cousins, eating scones, and letting enough light in my room that people could actually see me and my abundance of eyewear, to not doing any of those things. Once again my room is dark, I’m drinking meals through a straw, and while I can still talk a little, my voice sounds like I just spent the last 50 years smoking cigars. 

The good news, however, is I feel confident with my IV treatments I will recover much quicker than my last cold. A good sign is the fact that I’m writing this post. I may feel like crap, but if this cold were as bad as I expected it to be, I would not be writing this. I would have lost all modes of communication. I would have had to go back to using hand signals and the tedious alphabet spelling system I still have nightmares about. I would have had to keep my eyes covered at all times and my phone would have resumed its depressing status as an extremely overpriced paperweight. None of that has not happened, but the thought still haunts me everyday: I can’t go back to that life. And to think I lived like that for over a year. I’m not entirely sure how I did it, but then again at some point in the future I may say the exact same thing about this damn cold. 

* The MECFS community needs research funding! Please sign this petition to raise awareness. 

** As always please comment and subscribe to my blog below. 

Why The Hell am I at Elephant Bar?

I’m sitting across from an empty seat at Elephant Bar in San Leandro, of all places. Why the hell am I at the Elephant Bar in San Leandro?

I’m nervous, so terribly nervous that my lunch companion will not show up, leaving me to eat alone, negating the great effort I’ve taken to get myself here; or worse, I’m nervous my companion will actually show up and figure out I’m sick, spoiling the elaborate ruse I’ve been creating for months so my health doesn’t appear to be failing. I know I look healthy at the moment, and that may just allow me to keep the illusion going a little longer, but not 24 hours ago I was curled up in the fetal position waiting out a bomb of intense nausea, crippling muscle weakness, and chills so bad they made my body feel simultaneously dipped in ice and roasted over an open flame.

Then I got the call. “Let’s have lunch tomorrow,” the voice on the other end of the phone said.

Sure,” I replied. After all I have put off our first rendezvous for months, regularly passing up free meals, trips to the East Coast, and rides in flashy cars, among many other perks that come with my job. Eventually a slender man with thinning blond hair approaches the table. It’s surreal to see him, a man I’ve only spoken to on the phone yet have been working as his editorial assistant for the last nine months. I was expecting him to be wearing a three-piece suit but instead I hear a man wearing street clothes with a black leather jacket and fedora say, “Jamison, how are you?”

I gingerly rise and shake his hand. I’m not wearing a three-piece suit, but it appears I did overdo it with my dress clothes. 

“Doing well. How are you, Michael?” I ask, starting my greeting with a lie. The truth would have been: “Hey Michael, um, well I feel like dog shit. The last few days have been a slow and miserable march toward death while I’ve been working my ass off for you and intermittently lying prostrate on my bed. But hey, how ’bout that NASDAQ?”

We sit down and Michael, my boss at the widely-circulated financial publication we both work for, unpacks a thick stack of papers, iPad, and more of his belongings on the table. Looks like we’re going to be here for awhile. 

As he organizes his stuff, I mentally prepare for the cognitive firestorm that is about to besiege my brain. My goal is to breathe, nod my head often, and speak sparingly — only when necessary. I will do these things and many others — none obvious to my boss. I will conserve my energy for key moments of the meeting when he asks, “So what do you think about that?” 

Then I will use my impaired brain to think up a clever and hopefully witty response. I will try to forget how miserable that past few days have been, that I had to stay in bed all of yesterday just to have enough well-being to make it to this lunch. I will pretend I didn’t just spend the last three weeks being cared for at my mom’s house because working and living on my own has become too arduous. I talk to my boss as if I am an entirely autonomous adult who drove himself to this business lunch. But I will remain grateful that my mom was willing, and supportive enough, to drive me to San Leandro, then disappear before my boss showed up just so I could put on a facade; just so it would appear as though this is a mere pit-stop in an otherwise busy day. In actuality this is it for me. This is my entire day. I spent the hours leading up to this meeting in a catatonic state, and afterward I will most definitely retreat to my bed and not get up for a long, long time — we’re talking days, not hours. Then when my boss once again beckons — calling me while he is chauffeured to one of his regular appearances on the television news show, Varney & Co. I will lift my head off the pillow, pick up my phone and speak as if everything is normal, as if I’m not sick and my world is not crumbling around me because I’m addicted to overworking myself. I will do this, all of this, until my body finally gives out, overthrown by two unrelenting tyrants — my mind and the disease. 

*Please subscribe below, especially if you want to read the next installment of my Sex and Sickness posts, which I promise is coming soon. Thanks to everyone who has encouraged me to keep writing!

Show M.E. The Money

Tuesday was a bittersweet day. I felt the hype yet I was hundreds of miles away from the excitement. Masses of protesters gathered in 25 cities all over the world and many, many more took to social media. From a distance I could tell all of the protesters brought something unique to the day’s events. One brave woman, Janet Eastham, stood outside the Department of Health in London completely naked holding a sign saying “YOU CAN’T IGNORE M.E. NOW.” The use of “M.E.” was, of course, a double entendre referring to how the government cannot ignore a naked body standing on the street, and in turn, cannot ignore the disease (M.E.) afflicting that body.

Another courageous woman, Sonya Heller Irey from Arizona, inspired her Senator, John McCain, to post this tweet:

Coincidentally, as the tweet went out, Sonya Heller Irey was about to make a passionate speech on the steps of City Hall in San Francisco, detailing the 900-mile journey she made to see a Bay Area MECFS specialist, the closest to her home. But Sen. McCain wasn’t the only politician mentioning MECFS on social media. Senator Thom Tillis of North Carolina had this to say:

Meanwhile, other members of congress chimed in:

 

As I watched all this happening via my tiny iPhone screen set to grayscale to protect my eyes, I felt the urge to get involved. So I used my limited ability to message politicians on Twitter. First I started with Senator Cory Booker from New Jersey. Years ago I saw a documentary when he ran for Mayor of Newark. So back in 2010 I sent him a message, and to my surprise he wrote back:

Then he followed me. So naturally that made us best friends, right? I mean forget about the nearly 90,000 other people he follows on Twitter. Yeah, I know, we’re definitely BFFs. So I figured since we were such good pals he would reply right away. He didn’t. I’m still waiting. Hey Cory, I’m still waiting . . . .

Eventually I moved on and sent similar messages to California Governor Jerry Brown, and Senators Barbara Boxer and Diane Feinstein, even former San Francisco Mayor and current Lt. Governor, Gavin Newsom. And guess what? None of them replied. And now I’m thinking about unfollowing (breaking off my friendship) with Cory Booker #SorryCory.

As disappointing as it was not to hear back from these big names in the political arena, it was encouraging to see news coverage at some of the protest sites. And to hear several luminaries from the MECFS community. As I watched short videos of the speakers I realized that each brought a different and equally valid point to the need for MECFS awareness.

In a small community in Massachusetts, Erica Verrillo, whose book Chronic Fatigue Syndrome: A Treatment Guide sits on my bedside table, and a “small, but fierce” group of protesters gathered to make local government see the disease’s awful nature.

Simultaneously author Hillary Johnson spoke in Washington D.C. about the history of the disease, and in her own way made it apparent that these protests need an uninformed audience. Which is how she prefaced her speech geared toward the general public, not preaching to the choir. My friends Ryan and Stephanie from the Blue Ribbon Foundation were also on-hand in D.C.

And in Chicago, Leonard Jason brought up a bevy of facts based on his research at DePaul University. He mentioned that 72% of a 900-person sample did not have access to an MECFS specialist, a point which spoke to Sonya Heller Irey’s arduous trip to San Francisco. Jason also mentioned how 90% of people with MECFS are undiagnosed and 25% are house- or bed-bound, which costs our economy 18 billion dollars a year. These sufferers are dying 18 years before the average person and the symptoms are often worse than cancer or chronic heart disease. Jason suggested that one of the biggest barriers to MECFS awareness is ignorance by medical schools. According to his research only 6% of the 70 medical schools he looked at taught adequate information about the disease.

As powerful as those facts were, it was the San Francisco site, a three-hour drive from my home, which held perhaps the most noteworthy speeches. Dr. Eric Gordon summed up the nature of the disease in a way few doctors can. Mainly he noted that while people with MECFS may suffer from the same symptoms it is possible, even likely the disease starts in different ways. For instance, my case started with mono and the virus that causes it and other underlying issues, while other people have no evidence of any viral infection.

Then there was Janet Dafoe, whose son, Whitney is as sick as I was at my worst a year ago, unable to speak, eat, or get out of bed. She spoke powerfully about the struggle her family has endured, especially Whitney.

Finally Whitney’s father, Dr. Ron Davis spoke and opened my eyes to a few things. First he clarified why the need for research funding is so great and why the need is specific to the government. He explained that while private funding for MECFS (the vast majority thus far) is greatly appreciated, government funding is much more dependable and consistent. He said it allows researchers to hire long-term help and set reliable timetables. Another thing he mentioned was his expeditious search for not only a biomarker but for treatments. What was, in my opinion, the most hopeful moment of the day came when Dr. Davis talked about how his team at Stanford is trying to skip over the need to develop a new pharmaceutical treatment, and consequently a clinical trial which can take years, to instead test existing compounds on cells consistent with MECFS. Thousands of these tests can be done in a single day, and in what was also likely the most optimistic statement of the day, he said “In our freezer [at Stanford] we have every drug that has ever been approved by the FDA. We will try them all.”

Now that’s what I’m talking about! I must say, stuck in bed perched atop my wedge pillow staring at a grayscale phone screen that looked more like a moving x-ray than a video, Dr. Davis’ words gave me chills. I know they don’t guarantee a cure, but they do guarantee progress and that’s something the MECFS community has not seen in a long time, if ever.

 
Please subscribe to my blog below. Thanks!