Weight Weight … Don’t Tell me … I’m Fat?

Like many people, my relationship with food and body image has always been a complicated one. I’d be lying if I said that I wasn’t the happiest with my body when it looked lean and was full of big muscles. And while I’ve always aimed to achieve that physique, the truth is, for the majority of my life my body has not looked like that.

I don’t exactly remember when my body image came on my radar, but it was probably around the time I was in elementary school. I remember swimming at the community pool and some girl took a long, disgusted look at my pale, pudgy body and told me to put my shirt back on. After that I remember going home and looking at my body in the mirror and not being happy with what I saw. I’m not sure how much that girl’s comment influenced the new perception I had of my body, but it certainly didn’t help and definitely wasn’t the last time someone’s judgmental remarks about my body affected how I see myself.

After that day at the pool I tried to change what I looked like — I did as many sit-ups and push-ups as I could each day. I even started dying my hair blond as if that would make my body lean and chiseled like Justin Timberlake and the rest of *NSYNC (This was in the 90s). Though, I was never much of a fan I still desperately wanted to look like them.

But this was before I made the correlation between the food I consumed each day and what my body looked like. So when I didn’t lose weight, or even look better, after exercising, My young, naive mind thought something had to be wrong with the mirror I was using. I couldn’t possibly be that so overweight, especially with the baseball and basketball I was playing on top of my calisthenics.

Despite my lack of nutritional awareness, I didn’t eat unhealthy. In fact, I was a vegetarian as early as seven. It didn’t add up to me, but my body was going through prepubescent changes — body growth, hormonal shifts, you know, all the good stuff. So perhaps it was just unavoidable for my body to be chubby at that time in my life. Eventually I leaned out and started building muscle, but now twenty years later, I find myself in a situation even more frustrating than my prepubescent days. It reminds me that my body has undergone substantial transformations over my life and there will be more to come.

My Body

I was a healthy baby…

I was a good looking kid, too…

At 10 years old I was still healthy and looking good, but I started to put on weight (and bleach my hair blond). This is around the time I started becoming unhappy with how my body looked and subsequently questioned the efficacy of my mirror…

My body changed a lot as a teen — I started to go to the gym and add muscle to my physique. I was generally happier with how I looked…

By the time I made it to college I was what the kids these days call “jacked” (Actually, I’m getting older, do the kids still say that?). This is the happiest I’ve ever been with my body…

Then I got sick, grew a beard in honor of The Outlaw Josey Wales (and because I was too weak to shave). I started to lose a lot of weight, though I don’t have any photos that do it justice…

In 2013 I started to feel a little better (enough to shave again), but a lot of the muscle I put on before I got sick in 2010 had already withered away as the illness dominated my body. I didn’t realize it at the time, but four years into the illness I was really starting to get thin (and probably malnourished)…

In 2015 my condition worsened again. This time it hit a new bottom — the worst it’s ever been. I became bedridden and severely malnourished because I couldn’t eat solid food (but I could wear pink tanning goggles, so there’s that)…

In the last couple years, as my health has bounced around, but mostly trended upward, I’ve been able to eat solid food again and consequently put on a substantial amount of weight (Oh, and my hairline receded, but that’s for another blog post)…

Now

Much like looking at myself in the mirror in elementary school, I now find myself frustrated with how my body looks. I know I have all the excuses in the world to put on excess body weight, not that I, or anyone else, need an excuse. I hate how society puts so much pressure on us to look a certain way. I suppose I’m not the best advocate for the change we need around body image, but I do hope it changes. My thoughts and views expressed here are purely about myself, not how I see anyone else. There is absolutely nothing wrong with putting on weight and there is nothing wrong with the way I look. But that doesn’t change the fact that I want to look different and if it were within my control I would.

It’s hard to tell exactly how much weight I’ve put on because I’m too debilitated to stand and step on a scale. And perhaps that’s a sign that I need to worry about more important things than how I look. But when I see myself it’s hard not to focus on how my face is puffy, my stomach is bloated, and generally my body has layers of fat that I’m just not used to having. Right now my body is not a comfortable place to live. A lot of that comes from my illness, but weight gain definitely contributes as well.

The most frustrating part, however, is that I’ve done everything I can think of to try to get back to a body weight that feels comfortable to me. I’ve done juicing. I eat a gluten-free, low carb diet. I’m doing intermittent fasting — I only eat two meals between 6pm and 10pm. Yet I haven’t seen any noticeable improvements in how my body looks or feels.

I realize this may seem like a trivial complaint, especially when you consider the health issues I’ve faced, and that’s true, but it’s still a concern for me and doesn’t change the way I feel. Besides wanting to look and feel better, I also want to have a fairly healthy body weight when I start to walk again or just get into my wheelchair. After all, added body weight is added resistance when you’re trying to walk.

Lots of people have told me that I don’t look fat (I don’t like to use that word), but there’s no denying that my body does have more fat on it and less muscle than it used to. It’s an odd situation for me — I used to love my body. I still love my body. I love the amazing things it can do despite being plagued by illness. I just don’t love the way it looks. But that’s okay with me, at least for now.

In college I was a true narcissist, always obsessed with how good I looked. I was always posing in front of the mirror or for modeling photo shoots; I did bodybuilding competitions, flexing on stage wearing glorified underwear in front of hundreds of people. But things change, bodies change and deteriorate over time. But I guess I thought I had a couple decades before I ran into any issues with my body.

Perhaps that was naive of me, though. I mean I couldn’t have seen the illness aspect coming, but maybe my weight gain is partially a byproduct of inevitable aging — turning 30. Maybe it’s because I don’t burn as many calories as I once did — my metabolism, which is already impaired by MECFS, has surely slowed. But one thing is true, my issues with body weight and body image aren’t new. And while my outlook on body image may not be the most positive, at least I’m self-aware enough to admit that.

I’m also realistic. I know my weight gain is not from overeating or an unhealthy diet. As I said, I only eat two meals a day during a four hour eating window. It’s just not healthy to eat less than that. Take what I ate today — a tempeh patty with salad, then for my second meal — shrimp and green beans. Oh, and I had some cashews. It’s less than 1,500 calories. If my body was in a coma it would burn more calories than that by just keeping my organs functioning. So I guess it’s safe to say that my caloric intake isn’t the issue.

Then what is the issue? Maybe there isn’t an issue at all. But I think there is … I think it’s probably a combination of taking hydrocortisone, the steroid I’ve been on for the last three years, which is synonymous with weight gain. And the fact that I can’t exercise and my metabolism has slowed now that I’m in my 30s is probably in the mix too.

I’m sorry to say there’s no happy ending or even a transcendent epiphany to this post, though I definitely tried to think of one. The cold truth is that my critical view on my body is not going to change anytime soon — as long as I look the way I do I’m going to want to look different. But at the same time I don’t blame myself. I’m not over here beating myself up for something I have done everything in my power to change, something I have little or no control over. And perhaps that’s a good lesson for me — part of life is accepting the things I cannot change. Oh, and avoiding mirrors — sometimes life is all about avoiding those damn mirrors.

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Smashing Pumpkins And Other S#%t

I love to break things. Yeah, I know, who doesn’t? But I get such a satisfying feeling when I break something. Maybe not a bone, or a really expensive gadget, but breaking something cheap and discardable is satisfying. VERY satisfying! 

In 2011, after I was sick for a year, but had yet to learn much about MECFS, I remember being so incredibly angry — angry about the uncertainty of my health, angry that I had an invisible disease only I could see. At least back then I had some energy I could use to unleash my anger. I broke ceramic plates and cups, wood cutting boards, and on one occasion, I even destroyed two pumpkins and a ridiculously large zucchini my neighbor gave me. My buddy, Thomas, and I took our baseball bats to the backyard and pitched the giant produce to each other. Soon pumpkin guts were flying everywhere including at my face. It was fun and cathartic. I haven’t experienced such catharsis since. And seeing as today is National Pumpkin Day (I know, there’s a silly day for everything. I still can’t believe I forgot to celebrate National Oysters Rockefeller Day. WTF?), I must say I miss bashing a big pumpkin. 

Taking a baseball bat to a pumpkin was my way of coping, and while I have always paid a physical price for my outbursts while I’ve been sick — usually immense pain and weakness for a few days — at least back then it was an option.

These days it’s not an option. There’s no smashing pumpkins or breaking plates, and any physical outburst even remotely resembling those acts will send my health into a free fall. Rightly or wrongly, I still justify my furious actions by the awfulness of my situation and the disease that causes it. I do my best to stay composed, at least in the presence of my caregivers. When I’m angry, on the verge of exploding in a tantrum to rival that of even the worst toddler, I take a breath and firmly say, using my limited vocalization, “I need a minute.” Those four words make up a significant portion of my daily speech allotment. Some days I can only whisper my need for privacy, but eventually I get my point across. 

Then, after my caregiver has left, I find a light object and in one short, tense motion I hurl it against the wall. Bam! 

Over the months I’ve thrown everything from sunglasses and remote controls to seashells and tanning goggles. 

Before I got sick this sort of conniption would have been cathartic for me, to a certain extent it still is, but now my rage does not come without consequences. Almost immediately after I throw something in anger, my muscles seize up and fill with acid. The pain and burn is so severe I have no choice but to remain completely motionless. Then a profound weakness consumes my muscles and a sort of apoplexy hits as I remain unimaginably still, thinking to myself, “Why the hell did I just do that, was it really worth it?” A few minutes earlier the answer would have been an emphatic “Yes,” but dealing with the repercussions after the fact is a much different story — a story full of remorse and sorrow. 

MECFS is a debilitating disease which has left me severely deficient of key hormones like cortisol — crucial to processing anger and stress. And this only affirms my belief that there really is no healthy way to deal with anger when you have MECFS. 

Some people have suggested meditation, or worse, cognitive behavioral therapy (CBT). I don’t hesitate to throw my sunglasses at these people. 

“Hey, have you tried meditation?” Well, let’s see I’ve been sick for six years, do you really think you’re the first person to bring up meditation? As a matter of fact, I have tried meditation many times, I even went to a meditation group for awhile. It was great. I love meditation. But I want you to try something, if you will, or maybe just imagine yourself trying it. Stay in bed all day, don’t get out, just stay there. And when your stagnation becomes too maddening because you’re antsy from staring at the ceiling all day and you have yet to figure out how to eat, bathe, use the bathroom or drink water, then and only then should you close your eyes and try to meditate. 

The truth is, internalizing the trauma of being bedridden only makes it worse. It’s like someone telling you not to move or hours and then reflect on how it makes you feel and what kind of mental calisthenics you can do to sit still even longer. 

Forget that! Every fiber of my being wants to throw something at the wall, or break a window, or punch some stranger in the face (#sorrystranger), or do some hardcore drugs and wake up on top of a refrigerator in an unfamiliar house spooning a blowup doll who bears a striking resemblance to Whoopi Goldberg. 

Too much? Sorry. But see what I mean? These are the kinds of thoughts and emotions I deal with on a daily basis, and I have no way to cope besides: (A.) hurt myself in a fit of rage, or (B.) go insane trying to deal with the anger about my physical ailments by using some cognitive behavioral hocus pocus.

I often think about how I dealt with anger before I got sick. It was so simple: I put on mellow music from Jack Johnson, took a few rhythmic breaths, gripped a long metal bar and threw around a few hundred pounds of iron until my body was exhausted and my mind was finally at peace. And if for some reason lifting weights didn’t assuage my anger, I would run up a bunch of stairs with fifty pounds strapped to my back, or do some push-ups wearing a plastic sauna suit to sweat my frustrations away.

It is the mere thought of these past methods of coping that help heal my current frustrations the most. And until I can exercise again, until I can take a Louisville Slugger to an overgrown zucchini, well, I may just have to settle for throwing my sunglasses. 

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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. 

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