Founder of Health Rising and Phoenix Rising
Jamison provides an introduction to and an excerpt from his 200 page plus book, "Not Like the Whiskey" chronicling his 6 year struggle with ME/CFS
In the time I've been sick, especially the last year bed bound, I've come to realize nothing about this disease makes the faintest amount of sense. There are many people that don't think it's real, or don't understand it, and I don't blame them. Well, sometimes I do, but I would've felt the same prior to getting sick. There is, however, something about walking around one day and being too weak to lift a pen the next that makes one realize this is very real.
"None and I mean NONE of this makes sense." Jamison Hill
None and I mean NONE of this makes sense, especially how a small victory like reaching for something beside my bed is usually followed by a horrible crash. I am in a dark room yet through tanning goggles I can type these words on my phone. I can't explain this or why I can roll on my side but can't lift my head off the pillow. Nor does it make sense that I can audibly cough and sneeze but can't talk above a whisper.
I can't explain why I'm able to swallow pills but not food or how come I can be stuck with a needle but being touched is at times too painful. Still, within these paradoxes lies gifts of reprieve from my suffering and that is what keeps me going.
I'm grateful for the little luxuries and most of all I'm grateful for the support and love I've received through the ME community. Seldom have I seen such swift dividends fall my way. Your contributions have given me a great doctor with a solid plan and so far it's working.
For the last several years I've been writing a memoir (yeah, yeah, I know, who hasn't been writing a memoir) and just finished but I need help getting it published. If anyone has a literary contact please email me at firstname.lastname@example.org. It's surely for my own ego but more so to bring awareness. The book starts with a bodybuilder and ends with a severely ill man in bed. It's sad but hopeful and filled all my depth.
Curious? You can find an excerpt below.
Excerpt From "Not Like the Whiskey"
I finish a sip of water, pinching the straw with my index finger and thumb. I look at my mom and chuckle.
"Are you sure you don't want a joint?" she asks jokingly. We both laugh at the ridiculousness of the situation as she returns the water glass to my bedside table.
The situation is truly ridiculous. This glass, for instance, is the closest I've come to running water since I last got out of bed. It’s been weeks since I've had a shower. Yesterday, desperate, I tried and failed miserably at getting to the bathroom for a shower.
The plan was to have my mom push me across the floor on a snowboard until I reached the bathtub. But when the time came my body gave out. I laboriously sat up and slid off the bed onto the snowboard, but as my mom pushed me curled up in the fetal position, I only got sicker. I eventually retreated back to bed, still unbathed, where I have remained mostly motionless for the last thirty hours.
The recovery has been brutal, even cataclysmic. The first twelve hours after my snowboard excursion were the worst. It appeared that death was still near and waiting. My body filled with an intense sickness, weakness and inflammation so profound it seemed the only logical thing to come was death. I can’t imagine feeling any worse, but I know if my mom had kept pushing the board, I would have. Still, I can’t help but laugh at the thought of a tiny five foot-nothing woman pushing a hundred and sixty pound bag of meat and bones on a snowboard.
Now as I lay in bed sipping water from a straw, my heart rate has steadied but my sensitivity to light and sound continue. I must wear a sleeping mask and earplugs all the time. There is also a new concern: communication. For some reason, at some point in the last two days I lost the ability to talk louder than a whisper, and to make communication worse, I can’t speak sentences, only one word at a time. A few weeks ago I was saying thousands of words a day, now I’m stuck in single digits.
Luckily, most of my needs are met by using hand signals. I point to my stomach for food, and I pretend to smoke a joint when I need water. When nature calls, I either use a sports bottle my mom has affectionately deemed the pee bottle, or I show her two fingers and she brings in a bucket for me to squat on off the bed. It is not the heavy weight lifting squats of my past, but somehow it’s more taxing on my muscles. I was so embarrassed the first time I slid the bucket back to my mom, but in her nurturing fashion she told me it’s just like this now, it won’t be forever.
It seems some energy has returned after yesterday’s flare up. I should savor it, but after hours of nothing, my mind wants to do something. I’m tired of the boredom, pain and misery. I want excitement, passion and pleasure. I grab my phone and search for some unintelligible keywords. In seconds I’m watching two relative strangers do what people do in pornos, objectify themselves. But as the excitement hits, my body fails. My heart is racing and misery, agony, the feeling of death is back. Perhaps I too have objectified myself. It hurts so much and as I hide my phone in necessity, I fear my heart will not hold up. Death may actually be knocking this time
Looking back on the last six years, my current situation feels both humbling and heartbreaking. But it also feels eerily fateful, as if it has been waiting up on the horizon the entire time, but I failed to see it, and now that it’s right in front of me I have no choice but to crash head on . . .
Nearly Six Years Earlier . . .
The wind on the Napa River Bridge feels like thumbtacks poking my face. The concrete shoulder is cold and blemished, a place I have only been a few times on other highways waiting for a tow. My arms cling to the railing like a child on an inner tube floating in the water below.
All I can think about is what it would feel like to jump—maybe nothing, maybe everything; maybe, just for a second, like floating in space. It almost sounds appealing, but it’s a thought as surreal as it sounds, and one that should not be entertained for long. Surviving such a fall—like the teenager who jumped off the Golden Gate Bridge head-first—would be about the least fun imaginable—that is, except what has just happened.
As I turn away from the water and thumbtacks, my nebulous eyes find the wreckage and short trail of tire marks leading up to it. The amount of gasoline on the road reminds me of one of those overzealous action movies with the inevitable always seeming to happen. Hopefully life doesn’t imitate art on this occasion, but it may be too late for that. Fifteen gallons of gas is now streaming from my 4Runner’s ripped fuel line—a deluge running down the bridge. Most frightening is the other car—a pluming inferno only feet from where the gas is pooling. All at once I am in a haze, and it is no longer entirely clear where I was going or why.
The cord finally connected and with one tap of my iPhone, the perfect song hummed through the speakers. It felt inspirational, like watching a montage of the World Series or Super Bowl synced to a fitting soundtrack. There I was, descending—or more like floating—down to Interstate 80 and across the Carquinez Strait with what seemed like a fun evening ahead…but a fun evening was not ahead. Instead, the Napa River Bridge was waiting like it never had before.
The gradual incline of the bridge was a dangerous illusion, creating a blind spot up in the distance. Apparently it was more dangerous than trying to connect some stupid auxiliary cord while driving. I drove up the bridge, expecting to make it to the other side like any other driver, but at its crest was a car stopped in my lane. Never in my life has so much happened in so few seconds.
There was the throttle, the brake, the crash, the flames, the explosion. Then, the sizzling sound—a fairly recognizable sound—you could go your entire life hearing it: an overcooked piece of meat still in the oven, a flaming marshmallow in a campfire, but once you associate it with burning human flesh, it changes you.
A stranger taps me.
“Sir? Sir? …Sir! Do you know where the other driver is? Is he…in that car?” the man asks, pointing to the burning wreckage.
“I don’t know.”
“Are you hurt? Do you need an ambulance?”
“Yes,” I say, needing to escape.
Retreating back to my post on the bridge railing, there is nothing to keep me company, no one thing to offer comfort. Not even the vast and calming slough on the horizon can sooth the turbulence of this moment.
Across the median cars are stopped, drivers and passengers watching in awe, some taking pictures of the giant fireball to my right. I want them all to go away, or better, I want to go back in time, rewind to an hour ago and just stay there. Then I wouldn’t have to think about all the things that could have veered my fate away from this moment—a phone call, a stoplight, a bathroom break—and the one failed diversion that haunts me most: a soy corn dog.
In a rush, I’d passed on an offer from my friend, David, to enjoy the meatless snack. “Hey, how ‘bout a corn dog before you go?” he’d asked. “They're almost ready….”
“Man, you know I would, but I have tickets to the Giants game and need to stop home in Rohnert Park first. But hey, don’t you think it’s a little weird that you love beef, but would rather eat a soy corn dog over the real thing?” I’d said, leaning toward the door.
“No, I like them.”
I should have stayed. I like them too. It wasn’t twenty-four hours earlier that David and I had an almost identical conversation, except then, I’d stopped to relax and eat. It was a small yet fateful part of a wonderful weekend reconnecting with friends from high school, but it all seems so far away now, like a story from a past generation.
Below the cylindrical railing, there is a gap of air before the bridge turns entirely to concrete. My head fits nicely; it is a slice of shelter where the thumbtacks can’t get me. Wispy clouds float above, shading the sun. Chin resting on grainy concrete, forehead on cold metal, I call my mom. She doesn’t answer the first five times, or the second. I try my dad. He won’t be here for hours. Next I call David. He and his son, my other friend, Ian, will meet me at the hospital.
The municipal workers are now on-scene, disbursing to their duties like members of an ant colony. After a lead from a witness, they eventually hone-in on me with fervor and confusion. Some appear detached, apathetic, and without condolence, while others seem sympathetic, but are more puzzled than concerned.
The officer in charge tests my motor skills to see if I’m drunk in the middle of the day. Hard to blame him; it’s his job. He eventually clears me as I see the ambulance zig-zagging through traffic on the bridge.
On the ride to the hospital the paramedic is more genuine than a politician, but less comforting than a friend. We arrive at the hospital, Solano Something. Remembering the name of a hospital is like trying to remember the name of a road in the desert; they all look the same and you are too focused on getting the hell out of there to care.
I step out of the ambulance and walk into the emergency room under my own accord, looking healthier than the nurse waiting to greet me. Inside, an ER doctor takes a seat next to me. He looks to be a confident man in his early-forties, but grey-haired and uncovered by the dark bags under his eyes.
“Hi, Jamison, like the whiskey?” the doctor asks.
“No, it’s spelled with an i, not like the whiskey with an e.”
“Great name, but seems they got it wrong on your form. We will fix it. Also, we have some juice and crackers coming for you. Sorry, it’s all there is at the moment.”
“So, Jamison, I see you have a small abrasion on your forehead, how do you feel? Any dizziness or pain in the rest of your body?”
“Uh, no, I feel fine.”
“Well you can thank your airbag it seems.”
“Um, I didn’t have one.”
“Well that’s miraculous for such a serious accident. So we’re going to keep you for a couple hours just to make sure you don’t have anything serious going on. Now, I…know it may not be exactly the same, but I have some idea what you’re going through. I was in a pretty bad car accident myself—woke up in the hospital with a broken jaw, concussion, and a bunch of shattered bones.”
“Oh,” I mumble.
A red gloss coats his tired, sincere eyes as he gives me a look, a certain look that makes me believe there is a purpose to this tragedy—for me to discover something, perhaps the person I am bound to become.
This car accident is going to change me, for good or bad there’s no way around it, but I am determined to still be a good person.
The doctor grabs my shoulder while the look lingers a little longer. We both breathe deep, sniffle, and rub our eyes in different order. It feels good—a minute or so of mutual catharsis, and for me, self-realization.
It’s 1:28 in the morning. Leaving now will get me to the gym by two and done with my workout before the sun comes up. After grabbing a pre-workout supplement—a proprietary blend of unregulated amphetamine-like substances—water jug, and gym bag, I walk out to the car. My phone now says it’s 1:30.
The drive to the gym is reflective but uneasy. The last thing I want is to be in a car right now, and watching bad drivers makes the feeling worse. The car in front of me keeps swerving, almost rhythmically, as if the driver is still partially in control and coherent, but distracted. Maybe he’s trying to connect an auxiliary cord or something dumb like that. I don’t think much of it, only your typical cynicism laced with mild concern: Look at this idiot. He’s going to lose control, bounce off the median, and smash through the windshield while taking out five other cars, and killing everyone in a bloody, broken-glass-everywhere, fiery mess.
Similar flashes, stirred by an often-antagonistic voice in my head, have been popping up more frequently. Last week on the Richmond Bridge I saw my car careen over the railing and into the Bay. Right as I was taking a last gulp of air, trapped in the corner of my capsized car, a voice brought me back to a reality of taillights. This voice I often hear is my own, and not schizophrenic, but it is definitely more honest and abrasive than any side I outwardly show, and it is perhaps even irrational at times. I won’t pretend to know what it means—maybe it’s a byproduct of feeling helpless in a situation I can’t control, maybe it’s the voice of the older brother I never had, maybe it’s underlying guilt for the car accident, or maybe I just don’t want to know.
There is no doubt I am a little messed up right now—okay, I am really messed up right now—but it would be weird not to go a little mad after killing someone. There are common, not even necessarily healthy ways of coping, and then there is my way of coping. Turning in after a night surrounded by family would make sense for some people, but not the mad ones. Venting to friends at a bar would be most appropriate by the standards of my peers, but not the mad ones. I, on the other hand, am going to the gym because, well, I am one of the mad ones.
There is nobody at the front desk when I walk in, so I pull out my wallet and mockingly flash my membership card to the overtly happy cardboard employee. I then return the card to its place in my wallet, which happens to be next to the laminated hospital bracelet I saved after the car accident. I wore it for a week, then folded it in my wallet for safe keeping until I find a better place for it.
Next I routinely whisk my way to the gym floor. It is empty and illuminated, humming with electricity—the same as it will be in a few hours when the early birds arrive.
There is something, perhaps many things, to love about an empty gym. There is peace, comfort, and an almost unexplainable feeling of privilege just to be there, like standing in an empty stadium, or witnessing the calm of the ocean after a storm. For me, it conjures a rare, personal, and oddly emotive causatum, like finding nostalgia in a single light on a dark landscape, or crying while watching a comedy.
In this single moment in time, it feels as though this is where I am supposed to be, this is where my coping, my healing, and all my other inner processes are meant to happen, and for good reason. There is no body to ask about the best protein powder to buy, or how much creatine to take; there is just a few thousand pounds of iron and a couple rows of human versions of hamster wheels.
I am lucky. A 24-hour gym is almost never empty. Even at this hour, there is usually some rebellious teen taking selfies on the recumbent bike, or an old guy air drumming as he walks on the treadmill. Believe it or not, these are my people. They never bother me, but are instead exceptionally comforting to share a space with.
They are your people, really? Of course, that’s because they barely exist to you, they are less than strangers; they are inanimate, like a bookshelf. You just want them to serve their purpose, and stay out of your way. It makes sense; then they can’t hurt you. They won’t, by some freak twist of fate, almost end you. Well, congratulations, that’s one way to go; you are now a walking, breathing, miserable and bitter misanthrope.
In the locker room I change into an old sleeveless T-shirt. My phone now shows 1:58. After a swig of water I pop in an untangled ear bud, then the other, as a mellow Jack Johnson song fades in and my thoughts fade out.
I charge the weight rack as if it just called me some derogatory name, or told me I can’t do something…or stopped its car in the middle of the highway and just sat there waiting to end your life, or maybe it was just in the wrong place at the wrong time.
Grabbing two sixty-pound dumbbells, I do presses, then repeat with eighties, ninety-fives, hundreds, and finally finish the last set with one-tens. Next is a circuit of dumbbell flies, cable presses, and plyometric push-ups.
Then I do this thing most people wouldn’t even call an exercise—except it is, everything is. It’s basically a handstand against the wall followed by an inverted push-up. It works the shoulder muscles, but is mainly meant to show off to all the people in the gym, which at three in the morning is no one.
The last hour of the workout is the toughest. It starts with two forty-five-pound plates. Getting them on my back without a spotter is difficult, but I shimmy both behind my back and wiggle them into position. I get ten reps before falling to the blue plastic mat. It is sticky, so sticky. Removing the plates from my back is futile at this point, so they stay put until the next set.
Sprawled out with ninety pounds pinning me to the mat, my mouth about an inch from a Petri dish of at least a dozen people’s sweat. I look up, and the clock shows it’s 4:48.
There is no place I’d rather be.