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!