If you Were Dying, How Would you Spend Your Time? 

A couple weeks ago one of my posts got a comment from a brave reader with a very limited amount of time left to live. I was touched that anyone would spend their remaining time reading this blog.  

While we are all faced with a finite number of days left to live, most of us have no idea exactly how many. So when this person left a comment describing what it was like to know, I immediately started thinking about how I spend my time — often on things like writing, getting my needs met, spending time with loved ones, and raising awareness for the disease that has made time more valuable to me than before I got sick. And while my life often feels like a merry-go-round, I can’t imagine spending my time any other way given my circumstances. 

The idea of dying, as well as the actual state of being sick, is a very personal experience of which one may react in any number of ways. 

I’ve come across a few noteworthy examples of people reacting differently to illness. I recently listened to an episode of the Modern Love podcast, which takes essays — usually about love for another person, pet, or pretty much anything — written for the New York Times column of the same name. I have come across some truly remarkable, often breathtaking, essays in Modern Love. The one I heard the other day was no aberration. 

The essay was eloquent and honest, but also insightful. It was a story of a woman whose husband was diagnosed with terminal brain cancer. What I found most remarkable was the husband’s response to his illness. When faced with a finite number of days — fewer than most people — he chose to spend his remaining time and energy on what mattered most to him. This, to my surprise, did not include raising awareness for his cancer.

I’m not sure why I was surprise, perhaps because I am so fervent in my crusade to raise awareness for MECFS (myalgic encephalomyelitis / chronic fatigue syndrome) or maybe it was the level of voluntary ignorance this man chose when faced with understanding his condition. He had no desire to learn about his cancer, he barely acknowledged its name. But if you put his response in context — only a year left to experience everything you have ever loved in this world and everything else you have yet to discover — its pretty clear why he chose to ignore cancer.

Although it’s hard for me to say what I would do in his position, I can definitely see the logic behind spending your remaining time on things more nurturing to the soul than researching some evil, destructive illness. For the man in the Modern Love essay, and others like Paul Kalanithi, who chose to spend his final days writing When Breath Becomes Air, as well as Randy Pausch who wrote The Last Lecture — an insightful memoir about his dwindling time left on Earth — I imagine the choice wasn’t difficult to make. 

If I remember correctly, Kalanithi wrote about spending precious time with his infant daughter and Pausch wrote about an insightful time when he was charged an extra $15 at the grocery store. The latter really stuck with me. Pausch weighed the value of that $15 with the value of the time it would have took to sort out the mistake. He chose to spend the time with his family rather than talking to a cashier. 

Although it goes against every instinct I have ever had, I hope I would have done the same thing. Any time spent with loved ones is much more valuable than $15. 

But even if the choice doesn’t involve time or money, I can still see why one might choose not to focus themselves on their illness. 

Michael Kinsley, the founding editor of Slate, was diagnosed with Parkinson’s about a decade ago, but he chose to ignore the disease for the most part. In a wonderful essay, “In Defense of Denial,” he wrote:

So I see a good doctor, take my pills most of the time and go about my business. I couldn’t tell you some of the most basic things about Parkinson’s and how it works.

Although Kinsley has more time to work with than the aforementioned cases had when they found out they were sick, he had made similar choices: 

Skip the Democratic Convention to go kayaking in Alaska? Absolutely. Do it now, in case you can’t do it later.

These examples of time and illness have got me reflecting on my own situation. I have been sick for more than six years now, bedbound for more than two, and while I have always aspired to spend my time wisely, I suppose that’s a relative statement. Is one of the most rewarding uses of my time and limited energy to raise awareness for a disease in desperate need of research? Yes. However, my situation is different. I could die from MECFS, sure, but is it going to happen soon? Probably not. 

Either way I can relate because I don’t know how much time I have left on Earth, and while it could be decades, my quality time is likely to be far less. Time riddled by pain and misery is not enjoyable, quality time. In other words, while I may not directly die from MECFS, it could reduce my quality of life so low — as it did for the year I was unable to speak or eat — that I may end up wishing I had spent more time nurturing the relationships I have with my loved ones. 

That said, my health as it stands is enough that I can do both. It currently allows for both time and energy to be used for writing articles that raise awareness for MECFS and spending time with people I love. Yes, it often wrecks my body with pain and weakness, but it’s so worth it. I would rather be in pain doing what I love and being with the people I care about than being in less pain (let’s be honest, I’m gonna be in pain regardless) and not doing anything rewarding. 

Sometimes I wish I could spend more time serving a purpose and being with people I love, but if there’s one thing I know about fate, it’s that it doesn’t play favorites to those who are sick and short on time. If anything it does the opposite, so we must make the best of our time and that means, without a more eloquent way to put it, doing whatever the hell we want. 

Thanks for reading this post. I can’t say this enough: YOU are the reason I keep writing. I write these post so I can share my thoughts and experiences with anyone who will read them. So thank you for giving me a platform! 

The Day I Killed Someone 

This essay was originally published by The Bold Italic. 

I stood there on the Napa River Bridge, gripping the railing for what seemed like the longest time, trying to figure out what had just happened, as a fireball engulfed the wreckage of crunched metal to my right.

Thirty minutes earlier I had been sitting in my friend’s living room, basking in the homey smell of corn dogs cooking in the oven. Now I was standing by a human body trapped in an open-air fire, billowing smoke into the sky. My mind was in disarray as I looked out from the arched causeway leading to the vast marshland on the horizon. I couldn’t appreciate the captivating view. Staring at it was like trying to listen to my favorite song with a screaming child in the foreground. That’s the thing about trauma—there’s no distraction or comfort to be found.

I had just driven 60 mph head-on into a stopped car. I was not only walking and talking, but had no visible wounds or injuries from the collision. The other driver had most likely died upon impact before his body perished in the fire. His car was sitting in the middle of the highway—without its break lights or hazard lights on. Before stopping, the driver had showed no signs of trying to pull over to the shoulder or get out of the car.

I looked to my right. The fireball was getting closer to me, billowing up and out of the burning wreckage it encapsulated. To my left, gasoline was flowing from my car’s punctured fuel line, flowing narrowly past the fire. I imagined it could ignite the entire bridge and everyone on it, including me.

I snapped out of my morbid fantasy when the highway patrolman in charge of the accident scene confronted me.

 “Excuse me, did you see what happened here?”

“Huh? What do you mean?”

 “Well, we’re trying to locate the other driver’s body . . . ” 

“The other driver’s body?” I asked, for the first time noticing people peering over the bridge’s railing, presumably looking for my body in the water below. 

“Yes. It’s not in the car,” he said nodding toward my car, the driver’s door swung wide open. 

“Oh, well, I . . . I am the other driver.”

The patrolman was stunned I was alive. Though I had emerged unhurt, he told me that this stretch of Highway 37, the road that crosses the Napa River Bridge and leads westbound to Sonoma Raceway, was notorious for fatal collisions. Before a median was built in 1995, it was nicknamed “Blood Alley.”

As the patrolman filled out his report, he told me that, based on my tire tracks on the road, I probably only had my foot on the brake pedal for a second or two, reinforcing my belief that I couldn’t see where the other car was stopped due to the slope of the bridge. He then administered a standard field sobriety test, which I passed despite being in shock. 

Then I sat, perched atop a gurney, in the back of an ambulance as it drove me to the hospital. Despite my grief, I couldn’t help but feel out of place—being transported uninjured in a vehicle made for injured people. After I was discharged from the hospital, my friends drove me back to their house. Being in a moving car so soon after the accident was beyond unnerving—I kept having horrible flashbacks, hallucinating crashing into the cars driving in front of us.

At my friends’ house, I sprawled out on the floor in front of their television, staring at the ceiling, where more fatal car crashes played out on the blank canvas. Periodically my friends would laugh at something on TV, and I’d snap out of it. How could they be laughing after such a horrible day? I thought. How could they enjoy anything? 

Then I remembered—I killed someone. They had not. I had been the one to feel the explosion upon impact. They had not. I had felt the shock waves reverberating throughout my body as I struggled to get out of my car. I had witnessed the horror of a human body on fire. They had not. My friends knew death existed, but I had seen it up close. My friends were sure that they would be alive tomorrow, and the next day, and even months and years in the future. I was not. 

For the first time in my life, I felt immune to caring about trivial things. From then on, I no longer cared about who gave me a dirty look at the gym, or who forgot my birthday. I was dissociated from reality—part of grieving. Yet the weeks and months following the accident were filled with bureaucratic and logistical nightmares: How would I get to school without a car? How would I get anywhere without a car? And the scariest question hanging over me was whether I was a criminal.

I lived in constant fear. My friends and family, too, warned me there could be criminal charges looming. One day, the assistant to the DA called me from the Solano County District Attorney’s office. I asked her if I would be facing criminal charges, and to my surprise and relief, she said, “No, we don’t call those people.” Instead, she was calling to tell me that I was cleared of any criminal wrongdoing. 

This relief was immediately superseded by the fear that a civil case could be brought against me at any time. The Department of Motor Vehicles was also threatening to rescind my driving privileges.

Just as the potential criminal charges never materialized, my license was never taken away, and the family of the man I killed never brought a civil suit against me. Most problems related to the car accident were eventually resolved, but some remain unsettled. Why didn’t the other driver leave his vehicle? And why, on that day—June 13th, 2009, was his car stopped in the middle of the bridge? I may never get an answer to these questions, just as I may never piece together the broken parts of myself. But as unfortunate as that is, coping with my traumatic past is something I can live with because the alternative—not living at all—would be much worse. 

Where The Mind Goes When The Mouth Can’t Speak 

A few weeks ago I got a call from the lovely Janet Dafoe. She was calling because fellow MECFS sufferer Ben Howell was visiting from the UK. Coincidentally, he was also a bodybuilder before getting sick and we’re almost the same age. 

Janet and Ben called twice more while he was here (he has now returned to the UK). I invited them to visit me, as Janet had done a few months ago, but it’s unimaginably difficult for her to go anywhere since she cares for her son, Whitney, full-time. Not to mention Ben had just endured an arduous 10 hour flight from the UK, so I’m sure the first thing on his mind was not getting in a car and driving three hours to some random town in rural California where he would sit in a dark room with a stranger who happens to share the same disease he suffers from. Needless to say they didn’t visit, but maybe on Ben’s next visit (assuming the government still allows tourists). 

Anyway. During our first phone call Janet mentioned that I should write about my experience being aphonic for more than a year. She asked because Whitney has been unable to speak for years, and as his caregiver and devoted mother, she wonders what goes on in his head. 

Janet and I occasionally send text messages to each other which is when the subject of what goes through an MECFS sufferers mind when he/she can’t talk first came up. When she asked I hesitated because I hate speaking for other people especially someone unable to communicate on his own, but here is my response:

When I couldn’t communicate my mind was so vivid. I’d travel places, down familiar streets, aerial views of favorite spots. I wrote messages and stories in my head, played out movies. Anything to keep myself sane. It could be completely different for him [Whitney], but maybe it’s something similar. Maybe he’s taking photos in his mind. 

In writing this post, and further contemplating Janet’s question, I went back to look at our text conversations. In doing so, I was reminded of how far I’ve come and how incredibly torturous it has been to be stuck without the ability to physically speak my mind. To illustrate my point, here is our first text message exchange:

Hi janet. It’s Jamison Thx for ur advice. Grateful. 

Jamison! I’m so sad about this damn disease! But Ron is making progress and is very hopeful! Just takes too long. Hang in there! I think about you all the time!!!! You are amazing! You and Whitney have to meet when you’re better! 

To the untrained eye my message may seem normal, it is after all how pretty much every tech-savvy person composes a text message these days. But only I know precisely what kind of struggle went into those words. For instance, “Thx” is an abbreviation many people use because they’re in a hurry (or just lazy), but for me, it was a desperate attempt to communicate without making myself sicker. Believe it or not, when you can barely move your hands and have to wear tanning goggles (pink) s screen (which is already dimmed and on grayscale mode), typing out the word “Thanks” can indeed make you sicker. And it did make me so much sicker, many times, until my body recovered enough to freely type entire words again. And as you may have guessed from my message to Janet, the same goes for typing “your” instead of “ur.” Oh, and if you’re wondering how I feel about the psychological torture of making such grammatical sacrifices as a published writer, well, it sucks! I would compare it to a professional chef being forced to flip burgers at a fast food chain restaurant. 

As I reflected on how much I’ve improved and how awful it was when I couldn’t talk, I realized I only remember a general sense of how it was: horrible. It could be because my memory is faulty (as is common for many people with MECFS), or perhaps I would rather not remember, although I’ve never been one to shy away from my traumatic past. Regardless, for the rest of this post, I’m going to attempt to give my lovely friend Janet (and anyone reading this), a glimpse at where the mind goes when the mouth can’t speak. 

The truth is, I don’t remember exactly when I lost my ability to talk, most likely because, although I lost my ability to get out of bed in a single moment of terror, I gradually lost my vocalization. If I had to nail it down, though, I’d say I stopped talking a couple weeks after becoming bedridden in early 2015. I remember my aunt, and later some nice neighbor whom I had never met before, staying with me while my mom was at work. In both cases I opened my mouth to speak — I needed water and a protein shake (I had lost my ability to chew solid food at that point) — but pain shot through my jaw. I tried to push through the pain, but all that came out of my mouth was a faint whisper not even I could understand. 

What ensued over the following weeks was both further regression of my speaking abilities and a frantic search for methods of nonverbal communication to ensure my needs were met. Luckily my family was pretty intuitive and what they lacked in nonverbal communication they made up for in nurturing. It was obvious that I needed to eat and stay hydrated, but that’s nearly impossible for someone in a state like Whitney’s or mine. It takes an incredible amount of adaptation. 

For me, thinking back, it’s a spooky reminder that we walk a fine line between a life that is just bearable and one that is not at all. 

So as I remained in bed, unable to speak or eat or move much, I quickly realized I needed to get proactive. But how the hell could I be proactive without basic abilities of self-care? Well, I had to let most stuff go, other people had to take care of me. My job, however, was to keep my mind healthy. It was about all I could do, and it was incredibly difficult. In hindsight I realize that my mind was quite often drifting toward psychosis. I was afraid — paranoid I was going to go insane being stuck in a dark room unable to speak — which in turn only made me more mentally unstable. I was also afraid I was going to die in such a demoralizing state. I kept thinking: “So this is it? I don’t even get to say my last words, I’m too fucking sick for last words.” 

But it wasn’t that I was too sick for last words, it was that I was too sick to die the romanticized death we’ve all come to know from movies and literature. Let me tell you, having been so close to death, only the lucky ones are fortunate enough to die in such a glamorous way. 

But I didn’t die, obviously. Instead I was left with a manic mind and motionless body. As a distraction people would read to me — my only form of entertainment. But when I was left by myself with nothing but four walls and an ailing body, I had no choice but to entertain my darkest thoughts. I say I had no choice because they really were unavoidable. When I didn’t think I was dying I wished I was, and when I actually felt like living it was because my mind was detached from my body and circumstances. 

Laura Hillenbrand, author of Unbroken and fellow MECFS sufferer, has said that writing her extraordinary books has been her way of detaching from the illness. In my bleakest moments I too resorted to story telling, but because I was unable to pen them, I had to memorize what I would (hopefully) write down later when my health improved.

I mentally wrote essays — many of which have now been published. And as my text message to Janet mentioned, I wrote novels, short stories, screenplays, and pretty much every other type of prose. Being aphonic was a daily, and excruciatingly long, meditation in keeping a healthy mind under unbearable circumstances.

Now, after two years (but really six years) of that daily meditation, I wouldn’t consider myself a more peaceful or even saner person, but I’m still here and I’m still fighting and if I had to guess what anyone is doing locked up in a room unable to speak freely I would say, “Well, they’re probably just trying to stay sane.” 

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