Last time we covered the dangers of inspiration porn. Or more correctly, I discussed one way inspiration porn makes life harder for us sick/ disabled people.
The phenomenon actually affects us on many fronts. While external inspiration porn is maddening, it’s worse when the disabled actually internalize it — when we start to wonder if maybe we’re the problem.
Buying into the hype
All the media featuring the plucky and spunky disabled folks… Well, it gets to you; and you begin to second-guess the any peace you’ve made with your own condition.
If those people in the news could push past their limitations, why can’t you? Could it be that you just don’t want it enough? That you’re not trying hard enough? That, at the end of the day, you’re plain old malingering?
And if you’re not malingering, what’s so deeply wrong with you that you can’t emulate those other people’s results?
Self-doubt is emotionally exhausting. You find yourself reexamining every decision you’ve made about your condition, every limit that you’ve made peace with, and every time you’ve ever pushed yourself to the point of setback.
Were you really doing the best you could? Wasn’t there some other way to approach it that would’ve been successful? Should you maybe try again, just in case something has magically changed?
Deep down, you know you’re just being responsible. That different people have different symptoms, and those symptoms may be more severe in you than the people on TV. You know that you’ve given it your all (and then some) on numerous occasions. That you’re not throwing a constant pity party to avoid “really” trying.
But it’s just so damn tempting to think that these things really are within your grasp, that you just have to keep pushing when you hit a wall. That somehow this will result in leaps forward instead of severe health setbacks.
The idea that you really might get better, might have a wider range of options, might have activity levels that other people don’t second guess… How could you not want it to be the true?
The key to success
So you decide to believe that the fault lies with you. Which begs the question, “What’s the difference between me and them? Why have they succeeded where I’ve failed?”
Luckily, the onslaught of feel-good stories has made the answer painfully clear: attitude. The inspiration porn focuses on how these individuals refused to acknowledge their alleged limitations. They relied on determination and positivity to push them past all expectations.
Of course, they may also have had different or less severe symptoms (or a different condition altogether), a better support network/insurance/bank account, more free time, or a variety of other factors that would make a huge difference in success rates. But you don’t have time to fret about those small details.
What matters is that you load up on positivity, grit and determination (and don’t tell your specialists about your plan) and you’re all set!
Except it doesn’t work that way. Defying medical expectations is impressive for a reason: It rarely happens. Instead, you could make things significantly worse.
My attempt
Three months out of the hospital, I decided that I was going to walk a five-mile race. I don’t remember why I decided to do this (other than sheer delusion/denial). I don’t even remember how I heard about the damn thing.
But what matters is that I found out about it, and suddenly it was clear that I needed to participate. It didn’t matter that I’d only been off crutches for five or six weeks. Or that it’d only been a couple of weeks since I started being able to stand without breaking into a sweat. I was going to walk that race in a month!
I didn’t do anything silly like measure my starting point and end goal, then plan accordingly. I just kept up the workout the physical therapist had given me (including a measly five to 10 minutes on the elliptical) and counted the days.
Mom and a family friend walked with me, probably torn between a desperate desire for me to succeed and a very real terror that I’d collapse in a floppy-limbed, disheartened little heap.
But I succeeded. I crossed the finish line under my own power. Amazement! Triumph! Smug basking in my tremendous willpower!
Then I didn’t leave the house for a week.
The problem wasn’t just because everything hurt. (Though it did. Everything. Everything. Hips, glutes, thighs, quads, calves, shins — somehow even my arms were tender.) Sure, the discomfort was bad if I had to do some ridiculous thing like get up, sit down or really move my legs at all. No, the main problem is I was a husk, stumbling around in a fatigued haze.
After my success, it was just about the worst thing ever. I felt gutted; I felt trapped; I felt like all of my hope had been ripped away. I sat around trying to avoid thinking about the very obvious issue: In trying to prove I was better, I showed just how far I had to go. Worse, I’d actually made myself sicker.
And that wasn’t even the worst potential outcome.
When GBS patients leave the hospital, they are told (oh so repeatedly) to avoid pushing themselves too hard too quickly. My denial made me almost inspiration-porn myself back to paralysis.
The (limits on) the power of positivity
I’m not saying that a positive attitude is bad. Determination and optimism are helpful — but only inasmuch as they facilitate your progress toward pre-existing limits. They can help you reach your potential, but they won’t increase it.
Don’t believe me? A great example is Christopher Reeve.
He was lauded for, as an ABC article once gag-inducingly wrote, showing “Herculean bravery after a near-fatal spinal cord injury.” In short, for remaining positive and not lapsing into utter despair.
But he did despair. He actually considered having them pull the plug on his respirator. Even when he got over that, he refused to accept the reality if of his situation. He was convinced that he would walk again.
He was the perfect inspiration porn candidate: determined, tenacious and optimistic. Even better, he was rich enough to explore new and expensive treatments.
If attitude dictated recovery, Reeve would’ve taken up tap dancing. Instead, he died just nine years after his accident — heart failure caused by an infection from a bedsore.
Progress is possible (sorta)
Don’t misunderstand me. I’m not all doom and gloom. I’m not saying that people with disabilities can’t see any type of improvement.
Careful, moderated workouts can increase endurance, which may help fatigue (depending on the cause). Exercise will also strengthen muscles, which can help with weakness and, potentially, pain — again, depending on the root of the symptom.
But the relief will be a matter of degrees, not remission.
If you try to emulate the results of inspiration-porn stars, you’ll almost certainly fall short. Besides the emotional effects of repeated “failures” you also run the risk of serious physical setback.
You have to look at the feel-good stories for what they are: tales meant to comfort the healthy, not guidelines for people who are actually sick. If you forget that, you have a long road ahead of you (especially if you decide to walk a 5k).
I did (finally) finish this trio of pieces. Read the third installment here.
Have any of you guys fallen prey to this kind of wishful thinking? Or seen loved ones do it? How much damage did it do?
This is very true. I think inspiration porn, while it comes from a well-meaning place, is damaging for everyone. It really makes us view differently-abled people in a different light. Like, “Oh! This lady named Mary on the news overcame her MS and fosters dogs! Why can’t you do that with your MS, Phyllis?” I can see how it would be absolutely draining to have that added pressure after already dealing with a medical condition.
Mrs. Picky Pincher recently posted…Bitchin’ Budgets: How Picky Pinchers Budget
Yeah, there are many well-meant things in this world that are ultimately damaging for at least one party involved. But it’s nice to know that an increasing number of healthy people are becoming (or are already aware) of the issue.
I think the late Christopher Reeve is a great example of inspiration porn. Every interview he gave after his accident, he would emphasize that he was gradually improving and would walk again. In one of the last interviews he gave, he expressed some surprise that he wasn’t walking yet! I remember thinking that his optimism was unrealistic, then felt bad about doubting him. After all, he was living with his condition, so he knew a lot more about it than I did. Who was I to question his upbeat attitude?
Even though it almost killed you, congrats on walking a 5k! I’m pretty wimpy when it comes to heat and humidity. Also, what do you get for completing a 5k? A bottle of Gatorade? I’d need a gift card of some kind. Seriously.
Haha, well this was up in Anchorage, not Phoenix, back in 1998. Perhaps things have changed, but in fact you PAY to participate in a race. No Gatorade or GCs to be had. I mean, the fast people can vie for prizes. But the rest of us schmos? Yeah, we’re just doing it for the accomplishment.
And yeah, I couldn’t believe he really thought he was ever going to walk again. I did a little reading to make sure I got his details correct. Apparently, after a ton of therapy for years and years, he had a tiny bit of movement back in one hand (like a small flick) and one other spot, I think. Which is, in itself, astounding. But I also wonder exactly what that means since he was “biking” via one of those machines that stimulates your muscles.
There is not just inspiration porn, there is also a huge amount of self-improvement porn. Everyone gets sucked into this trap if they are not careful, the able and disabled alike. I am currently healthy (except my low back has “gone out” and I will be slow for several days), but I am going to be 70 next year and am feeling the urge to “work harder” at it. I think the main thing we all have to do for ourselves is be kind and forgiving. I do have a friend who is healing from a very debilitation case of chronic Lime. BUT, she had a lot of funds, the ability to take time off, an ex who took her child for a year, and someone who fostered her dog. I like to see a book, but again, it would probably be a big downer for people who don’t have the resources that she had. More inspiration porn. What I love about your book is that it starts with reality and stays with reality. No guilt trips!
I have to hear it all time–what someone else did, how quickly they improved from back surgery. But, I know they have support at home and big bucks to help them get everything they need. On top of that, you hear stories later that things were not so good, that it was all a façade.
“In trying to prove I was better, I showed just how far I had to go. Worse, I’d actually made myself sicker.” Although you are writing with an understanding of a clear dividing line between “healthy” and “unhealthy”, this applies in all kinds of ways. Really great insight in you post about the struggle between acceptance of limitations and (miguided?) determination to push past them.
Prudence Debtfree recently posted…Elder Indebtedness on the Rise: Seniors of the Future, Be Proactive NOW
Awwww thanks!