Don’t do it for The Gram

A few years ago, when I was still on my feet walking the streets, I saw someone stop in the middle of the road and take a selfie. I remember giving a sardonic smile, shaking my head, and waiting for the sound of tires screeching on asphalt.

This, of course, was before stopping traffic to take a selfie, or posing on the edge of the Grand Canyon doing a handstand, was commonplace. But today I would probably have a similar reaction. Though it’s hard to know for sure because I don’t get out in public these days; I never see the behind the scenes perspective of people who post on Instagram or Facebook or any other social network.

This is not entirely, or even mostly, disappointing to me. But I suppose I do miss the people watching and telling my friends about the ridiculous things I see people do on the street. But even in my current housebound/bed-bound state, I am not above this type of behavior. In my own way, I too am guilty of “doing it for ‘The Gram.’”

Like many people’s lives, mine is not how it seems on social media. I’m not saying I only post photos of exotic travel and caviar dinners, well, unless you consider exotic travel to be getting out of my bed and into a wheelchair, which I recently did for the first time in more than nine months.

My life on social media is definitely a distorted version of reality. For starters, I seem way happier than I am most of the time. Look at my Instagram photos, I’m smiling in almost all of them, even the ones in my sickbed, and I probably don’t even look sick. Most ambulatory people don’t even smile in every photo. Maybe, because I am often profoundly unhappy living with an illness nobody understands, I feel that I have to compensate by looking happy in photos. Or maybe I am just genuinely happy to be in a photo because, for such a long time, I was too sick to stand the bright light of the camera flash. Either way, I do not consider my wheelchair, or my bed, to be my “happy place.” You want true, unbridled happiness? Wait till I go to the beach and have the salty ocean air wash over me.

For now, however, this is the glamorous side of my life. What you see on social media is as good as it gets for me at the moment. It is the part of my life that looks happiest, most hopeful, and perhaps even inspirational. But most of the time it’s bleaker, much more so.

A couple weeks ago, after I posted the photos of me in the wheelchair, people sent me lots of thoughtful messages telling me how amazing it was to see me making progress again. These comments make me happy. They really do. But I can’t help but feel like there’s a veil over the majority of my life, at least visually (even though I’ve written about some very intimate things).

Just like Instagram celebrities posting photos of themselves eating a salad before they put the camera away and scarf down a greasy bacon cheeseburger, when I posted photos of myself in the wheelchair I felt like I wasn’t being entirely honest. It was like posting a photo holding a trophy and not showing how I got it. If you saw the photos then you know I explained how long it took me to get to that point, I was forthcoming about that, sure, but I left out so much else. I didn’t mention how many times in the past nine months I sat on the edge of my bed — or didn’t even make it that far — reaching for the fresh air outside and wondering if I’d be trapped in my bed for the rest of my life. I didn’t explain how hard I crashed after each failed attempt or the cost for which I paid when I finally succeeded. Though, in my defense, it would have been impossible for me to forecast the recovery because, well, I can’t tell the future.

There’s no way I could have known that I would spend the next two weeks in agony, my body crippled by the exertion and maneuvering it took to get into the wheelchair and then go back to bed. In fact, as I write this I am still recovering. My back has been infused with pain, the nausea has been unrelenting, and for several days immediately after getting into the wheelchair, I was so weak and exhausted I could not sit up at all.

I know it’s probably difficult for most people, particularly healthy people, to understand the fragility of my body, but I suppose that’s why I’m writing this. I’ve gotten some very excited people asking me: “When are you getting back in the wheelchair? Will you be going outside next?”, and as much I don’t want to discourage their excitement (or hide mine), I hope everybody understands that it’s hard for me to go there, or even play along. It’s sort of like someone giving you $500 to punch you in the face and telling you to be excited about it. You get a $500, great! But how excited can you really be about getting punched in the face? Okay maybe that wasn’t the best example, but my point is: No matter who you are, and how honest you try to be with yourself and your social media presence, not everything about your life is as it seems, especially the happy moments. I guess sometimes that’s for the best — nobody wants to see me curled up in a fetal position with an ice pack on my back and an IV in my arm, just like nobody wants to see an Instagram celebrity sitting on the toilet each morning or projectile vomiting before skydiving. But these things happen, they’re part of life, a big part, perhaps even a bigger part than the glamorous stuff we so often post online. And it’s so important to remember that the unglamorous stuff happens.

So this is me sharing the bad parts of my life, or at least telling you that they exist — I won’t give you a visual, but just know that every triumphant moment you see has its downside and every moment you don’t see is what I wish I had the courage to share with you.

BEFORE YOU GO…

1. Thanks for reading!

2. Speaking of glamorous moments, I have more good news … I officially have a literary agent. Kathleen Ortiz at New Leaf Literary will be pitching my memoir to publishers, so please subscribe to this blog and follow me on social media for updates. If I have anymore good news I’ll be sure to post it and after I do I promise to put up a photo in which I look miserable. Ha!

3. I am fundraising to pay my medical bills so if you’d like to help out by buying a shirt or hoodie I would be very grateful!

4. If you would like to donate to support this blog I would be equally grateful!

27 thoughts on “Don’t do it for The Gram

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  1. Congratulations about the literary agent. As I know, it’s often harder to get a literary agent than a publisher.
    I know this is a random suggestion, but since you can’t get out of bed and into the outside world, how about getting someone to turn your bedroom into a botanical paradise? There are quite a few houseplants that are quite safe to have in the bedroom, if not good for the health, especially aloe vera and mother-in-law’s tongue, both of which give off oxygen rather than carbon dioxide at night. I think that Jasmine is good, too. I’m not saying they’ll cure you, but every little helps.
    My apologies if you think it a silly idea, but I know how cheering I find my plants and was just hoping to suggest something that might cheer you up an incy wincy bit.

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      1. Excellent 🙂 There are quite a few varieties of aloes, so you could collect them. I have one with striped leaves and another with nobbly leaves and non-threatening spines, and another that is plain green and produces impressive peach coloured flowers from time to time. I also have a very simple but abundant one with softer, smaller leaves. I keep that one in the bathroom, as it’s gel is easy to extract and can be put on burns and sore bits of skin. You must post a picture of your aloe when it comes to live with you!

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  2. Congratulations! From what I’ve seen here you’ve been all-in on this journey and to see it come to fruition must feel incredible.

    You make some great points. I always internally applaud those folks that post it all. I rarely post any photos of myself. If you want to feel lucky for a nanosecond. 🙂 Between my eyes not tolerating makeup anymore (since CFS they’ve literally become allergic to the bacteria on my eyelashes…crazy right!?) and several types of anemia I can’t get ahold of I look ghostly. See as a guy, you don’t have to worry about all that. 😁

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  3. I saw that photo and thought, probably along with the vast majority of your ME readers, “Hey! Look! Awesome!… Sh*t. the payback. Hope it’s not major damage.” It has become so commonplace for some of us that concern/acknowledgement of struggle to come follows the excitement by a half breath. We’re there with you. We know sometimes we eventually get outside and sometimes we spiral, but there is always payback.

    I think a shot of the after could be powerful, if and when you chose.

    Liked by 1 person

  4. I appreciate your writing style. In my healthy years I was an English lit major/teacher and learned to appreciate the voice of authenticity and not just self-pity (though if anyone should have a pity party now and then it is us ME’ers)!

    Liked by 1 person

  5. I have gone through the same realization myself lately, which is why I started posting the ugly side on FB as well. Nobody really knows how much this disease affects us unless they see the whole picture. ♡
    – Fellow M.E. Warrior

    Liked by 1 person

  6. i have been ill with this blasted disease for 36 years, and most of it i have tried to hide how very ill i really am. i think it’s because most people have no understanding and can be so judgemental. (“you sleep too much that’s your problem”..”have you tried?” yes i’ve tried more things than the person knows!) there is such a lack of knowledge and understanding.so, not wanting to be judged and too exhausted to try to explain one more time i hide my illness as much as i can.

    Liked by 1 person

  7. You WILL feel that salty ocean air again bro. Have you looked into IVIG, plasmapheresis or photopheresis? I found a few promising storied on phoenixrising about those treatments so I’m going to start them soon if I can get the coverage.

    Liked by 1 person

  8. A picture on social media is just that a picture, a snapshot of a moment in time. It doesn’t show anyone’s true feelings and it certainly doesn’t show the before and after of a snapshot. I suffer from MS for 20 years. I know how to “put on” a happy face. My fears were never seen in a photo I can promise you that. After all what does everyone say when taking a picture “smile”. Smiles can hide a lot.
    However you’re accomplishments should never be diminished no matter how small. Without the steady determination from you nothing would have happened. You didn’t give up and are still fighting the fight. That does deserve the smile.

    Liked by 1 person

  9. Congrats on getting a lit agent!

    I am one of those people who hates being in pictures and I don’t really enjoy taking them. I am also perpetually irritated by the idea that so many people forgo having an actual experience in order to record it.

    That being said, I never assume that what I see is reality. We curate ourselves online. I am less a visual person and more of a word person – you have described your experience of chronic illness that belies a smiling picture. Which speaks to your writing skills and your authenticity.

    Liked by 2 people

      1. Dude, you have every reason to. Brush up your memoir and write more great stories for your agent. Checkmate…lol. At this point, you’re interacting on The Gram. Lol. Hope you’re having a great week.

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  10. I do admire your bravery. The mind is very powerful and you still have yours. The doctors gave me two months to live three years ago with terminal cancer. I refused all treatment and am now well except for a deformed breast which I can live with. In fact a new breast is half grown again and still growing. That would not have happened had I let them mutilate me. I took dandelion root, which I know produced the cure but it was my mind that mostly did the trick. I just didn’t believe them even though my family did. I am not boasting. I am seeing your courage and telling you to believe you will get better, even when it seems stupid. In my case, the tumour was the size of a grapefruit and had spread through my lungs and produced clusters all round my heart. I was very unwell. I no longer have any of the symptoms and am perfectly healthy again. I know lyme is different but keep believing. Best love, Maggie.

    Liked by 2 people

    1. Hi Maggie. Oh wow. That’s quite a harrowing story. I’m glad you fought and survived. I’m amazed at how medicine has essentially advanced enough to essentially turn some forms of cancer into non-terminal chronic illnesses. That is the kind of thing that gives me hope that they’ll one day cure what I have. Thanks for reading!

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