Standing 

Today, May 12th, is International M.E. Awareness day. There’s nothing I can say about this horrible disease that I haven’t said already on this blog. But I can share another part of my journey and battle with the disease with you. 

It’s bewildering to think I used to get up every day and lift hundreds of pounds, thousands if you count the cumulative amount of weight I lifted each workout. 

Every morning I ate some weird hippie cereal, drank some weird hippie drink, then got on my not-so-hippie bike and rode to the gym. There, if it was leg day, I would do some foam rolling, dynamic stretching, and then get to lifting. Deadlifts were my favorite exercise, probably because it was the exercise of which I could lift the most weight. My max was 425 pounds more than twice my body weight at the time. 

It was thrilling to lift that much weight, but also painful. The symbiotic mixture of pleasure and pain reminded me of the feeling of having a tattoo needled on my skin. It was a wonderful pain, the kind of pain that made you forget about what you thought was pleasure; pain was the best pleasure. 

When you can’t tell the difference between your own pleasure and your pain then you’re an addict.

Margaret Atwood

The enjoyment I got from the pain of lifting heavy weight may have actually been at the core of my addiction. I was addicted to exercise and I couldn’t stop doing what some people never do in their entire life — lift heavy weight. 

I was a competitive bodybuilder, but even that — the thrill and vanity of sculpting my body, then posing on stage in front of hundreds of people — was not my addiction. Rather, I was addicted to the process of striving for something I could never obtain — perfection. I always used to say, “Working out is the most important thing to me,” which was true. Sure, there were people more important to me, but people aren’t things and working out was the single thing I cared most about. 

Exercise still has a special place in my heart; it will always be a big part of me, regardless of my physical condition. The fact that I still feel that way after such a long absence is a reflection of how much fitness has done for me. 

I remember a conversation I had with my friend, Keith, who mentored me in bodybuilding while I was in college. One day he explained how my workout routine — a meticulous four-hour daily gauntlet of grueling lifts — may have actually been counterproductive to building the ideal bodybuilding physique, one made of lots of muscle and minimal fat. I thought about what he said — something I had considered myself prior to the conversation — and knew he was right. Excessive exercise is actually counterproductive to the ideal bodybuilding physique because you end up burning muscle, or at the very least not optimizing muscle gains. But I didn’t care. And that’s when I knew I was addicted. Like an alcoholic not caring if his drinking adversely impacted his career or family or anything else, I didn’t care that my dependence on exercise to cope with the stress and monotony of life, or the trauma from the fatal car accident I was in, took away from my family time or schooling or work or even my bodybuilding and modeling aspirations — the main reason I worked out so much. It was quite the anomaly. 

Even as I got sick and my health began to deteriorate, I refused to give up exercise. I remember going to the gym in a haze of sickness — weak and disoriented — trying to lift heavy weights and failing miserably. It was like someone just zapped away my strength. Poof. I literally lost half my lifting ability overnight. In my feeble attempts at lifting in the weeks following the initial onset of my illness, I could barely deadlift half my max. Soon I lost my ability to lift any weight at all. 

During a brief improvement in my health a couple years later, I tried to lift again. But I was dismayed to find I could barely lift a 25 pound kettlebell. The many months of resting had depleted the thing I had tried so hard to conserve — my strength. 

Shedding a bit of my stubbornness, I tried yoga and other forms of exercise that were not as harsh on my body. But I still rode my not-so-hippie bike on good days and a couple times I even tried to train a few clients through video chat. 

Those virtual training sessions were the hardest on my body, but also my psyche. I felt out of place, like a phony, telling someone to exercise and eat healthy when doing so had made me sick, or at the very least had a null effect on my ailing health. I couldn’t train myself, why the hell was I trying to train someone else? 

Because I loved it! If I couldn’t treat myself to the beautiful pleasure/pain I could bestow the feeling upon someone else. But alas I couldn’t even do that. Not for long, anyway. 

After my second virtual training session and consequential inability to care for myself, I realized I had to stop. No matter how much I loved it, and how blissful it was to exercise for a few minutes, spending days in bed and having people bring me food because I couldn’t take care of myself felt selfish. 

Now, seven years after my last heavy lift, the only reason I have kicked my addiction to exercise is because I physically can’t do it. These days I can barely lift simple items like my phone or a magazine. But as depressing as the comparison is, I find it sort of motivating — a challenge to conquer, however insurmountable. 

I may be physically weak but I’m getting stronger and as much as I miss lifting heavy weight, there is something inspiring about starting from scratch and working my way back up. 

So now here I am, shuffling my body to the edge of my bed, dangling my feet to the ground, and shakily planting them there. 

Then there’s this walker — an instrument of my rehabilitation — of which I grip the bars in an almost identical way as I used to grip the bar before doing deadlifts. I may have even done the same “pre-game” ritual of shaking my shoulders to ready them for the weight they were about to lift. The real difference was, however, that as I lifted my upper body to a standing position there was no weight attached to me, no 400 pounds of artificiality, just 165 pounds of meat and bones. And I must say, it was the most satisfying lift of my life. 

I wasn’t expecting to use a walker for fifty years, sure, but hey, it’s good practice. I suppose. But I must also say, this lifting of my body to the standing position was painful. And not the enjoyable pain I described earlier. This pain was evil, unadulterated pain. It was the my-body-doesn’t-just-hate-me-my-body-is-going-to-kill-me pain. I hadn’t put any weight, let alone 165 pounds (or however much I weigh) on my hip, knee or ankle joints in more than two years. So naturally those joints were pretty unhappy, even as I popped Advil in my mouth like jelly beans. 

The irony of once being addicted to exercise and now finding myself rehabilitating my body is not lost on me. I hope nobody takes offense to me saying so, but I am very much an addict in rehab. And while it is by no means a conventional addiction or rehab, I am here nonetheless — hoping to recover. 

Thanks for reading and subscribing to my blog. Please take a few seconds to mention M.E. Awareness day on social media or to someone you talk to in person. It would mean a lot to all of us fighting this awful disease. 

And for those of you with the disease or close ties to it, please check out the tele-support group I just learned about. I haven’t been well enough to participate but I hear it great and hosted by the Solve ME/CFS Initiative, here’s the info:

It takes place every Saturday at 8pm EST. 

Dial-In Number: (712) 770-4700

Enter your Access Code: 915110 followed by # sign.

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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Where Have All The People Gone?

*Disclaimer* If you are reading this post there is a 95% chance the negative parts are not directed at you. The people that I call out will probably never read this. And if they let do, I hope we can chat about it. 

People come and go, but for me, since becoming bedridden, people have only come in and out of my life, not the other way around. They come and go, but I stay put. It’s a one-way street, a lonely road leading to a turnaround. This is nothing new. But for some reason it has never affected me more than it does right now. I imagine it’s because I don’t have much to distract myself from loneliness. People come to visit (or text me saying they want to visit), maybe they even make a few social media posts about doing so, but eventually they move on with their life while I remain stagnant. Don’t get me wrong, I’m grateful for the people in my life no matter how short-lived our relationship may be, but it seems to me those who stay in my life the shortest amount of time are making the gesture more to feel better about themselves than lift my spirits, or anything else for that matter. 

For instance, since word about my poor health has spread, a number of people from my past have sent me messages, but the vast majority of people who do, never come to visit even when they say they will. I know life gets busy, but I still prefer honesty over a false promise. 

Often people send me messages saying something like “Hey buddy, heard you’re feeling shitty. I’m gonna come visit you soon. We can hang out and have some laughs.” Then I don’t hear from them for a month. But my favorite message is one like this: “Hey there, so I heard you haven’t been doing well. I want to come visit, but I know you are probably busy or don’t want visitors. But I hope you get better soon, then we can hang out.” To this I usually reply, “Hey! Yeah it’s been rough, but I’d actually love to see you. Might have to be a short visit because I need to rest, but when can you come?” Then I don’t hear from them. 

I would much rather get a message like this: “Hey man, so I heard you’re getting better, I’m glad! I can’t come visit because my life is crazy and you live like 1,500 miles away in the middle of . . . Wait, where do you live again? Anyway, get better soon, man, and if stuff mellows out for me I’ll try to come see you,” or an even better message would be “Hey cutie, I’m coming to visit, see you Saturday. I know you can’t have sex, but maybe we can just snuggle and kiss a little. Then I’ll leave you alone to rest, but I’ll comeback in a couple weeks and we can do it all over again. Sound good?” Yeah, I definitely like that last message. 

A few weeks ago marked the one year anniversary of moving into my current home. It dawned on me that in the year that has since passed I have not gotten out of bed. Before I had been, with the help of friends or paramedics, moved to different beds or once to the emergency room, but now, perhaps because my health has stabilized, I’m just stuck here in a dark room. I still can’t believe it. I haven’t left the confines of four walls in a year. I haven’t even left the confines of my mattress in a year. Before I got sick six years ago, or even three years ago when I was still walking around, I couldn’t have imagined being confined to city limits, let alone a house or room. Although I have been living this reality, I still can’t imagine being so restricted in my movements. It is this immobility that has left me in a precarious position, constantly having to wait for people to visit me instead of having the freedom to visit others. 

I have been surprised by who has supported me during this tough time and who has vanished or remained silent. Some of my best friends from past parts of my life have essentially gone missing — some have yet to communicate a word to me or my family in the nearly two years I’ve been severely sick. For months my mind has wondered about these old friends. These are people with whom I have shared some of the most exciting and personal experiences of my life. We are bonded in such a way one would think there would be no hesitation on their part to reach out if I got sick. But now that I am sick, not only has there been hesitation, there has been a failure to act by my old friends. 

I have concluded the reason many of my old friends have disappeared on me is one of two things. They could be too afraid to get involved in such a complicated and messy situation. But on the other hand, it could just be that they don’t know how. Because of me they could be faced with emotions the likes of which they have never fully experienced before. Perhaps they have always blocked them out, or chose not to acknowledge them. Perhaps these emotions are unprecedented in their life. I doubt it. Instead, the emotional reaction that I create for them is, more likely, one in a series of reoccurring events of which they have never learned how to adequately cope. Either way, it’s hard for me to fault them, but that doesn’t change that I have at times been hurt by their absence in my life. It would be easy for me to take it personally, as if they don’t care about me. But I know, like most human relationships, it isn’t that simple. 

Now that my health is improving, it’s not like I’ve been hiding. In fact, recently I posted a political piece on my Facebook page and one of my best friends from adolescence made a number of comments on it, but directed at someone else. The two were engaging in a debate, which I don’t have a problem with, except that it meant watching my ex-best friend essentially hijack my post. It showed that he was obviously capable of typing words and sending them to another human being, but just like the last two years, he failed to send them to me. It was like he brought someone over to my house, but didn’t speak a word to me, and instead talked to the other person about politics the entire time. Again, it’s easy for me to take it personally, thinking he cares more about politics than his best friend from adolescence, who is now sick and was recently on the precipus of death. But I don’t take it personally. Okay, maybe I take it a little personally. Ah, yeah, you’re right — I’m bitter as shit about it! 

During the period of time that I’ve been sick, I have had an incredible amount of support. It just hasn’t been from the people I would have first imagined. I ultimately feel abandoned by many of my best and oldest friends, and while I know I’m not entitled to them going out of their way to see me, I hope they know that they certainly aren’t entitled to my friendship.

Still, I have found solace. There is something very special about making new friends and acknowledging the unlikely saviors that have supported me through tough times. These people may not always be there, but someone always will — I am lucky enough to have a revolving door of support. As long as that door keeps letting people in, I can handle its constant spinning. And as much as I want to stay bitter at the old friends who have gone away, I know that if one were to make more of an effort in the future I certainly wouldn’t hold a grudge — I’d let them in the door. 

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