I’ve been in a dark & thorny place in my head off & on (too little off, too much on) for a few weeks. When you live with chronic pain & fatigue the way I do, it can be challenging to separate out your state of mind from your state of body because exhaustion & physical hurting affect/effect your thinking, your mood, your spirit. It’s taken me years to be able to feel true joy in my head & heart while simultaneously experiencing profound fatigue & pain in my body.
It’s a do-able thing, to lift your consciousness & spirit up & out of your physical being, ferry it just far enough above & away, to escape to a better place. Not easy, though.
Achieving happiness in the midst of corporeal misery is a kind of magic act, a veritable sleight-of-hand trick played between consciousness & corpus. There are times I’m pretty good at fooling myself: a distracting swish of the colorful cape, a flash of fire-sparks & dramatic puff of smoke, a redirecting of focus to someone or something else. But sometimes I’m simply not a very good magician. A lot of times I’m too mired in the crush of fatigue and the razor’s edge of pain to be capable of playing along with the games I devise to alleviate, to disguise, to enchant my imagination away to another, better, easier, plane of existence.
There are times that fooling myself can be dangerous. For example, when I was in NYC in September for the Leary Firefighters Foundation fundraiser (screening of the finale of Rescue Me & after party w/cast & crew), it was a long evening–on top of the stress of travel itself. From Texas. With a service dog. And by the end of the night I’d pushed my body to the limit of said fatigue & pain.
When I left the venue of the after party at 54th & 6th Ave, I walked Luke to Central Park for one last potty break before going back to the hotel. It was only a couple blocks but I was already nearing a wobbly level of exhaustion & agony. Oh, and it was raining. A little at first, which then turned into a downpour about a block from the park. It had been raining off and on for so long in NYC that there were actually flood warnings in effect, which I found amusingly ironic since I’d come from the ravaging wildfires back home. The paved drives of Central Park were running rivers and the lower grassy areas of the park were swamps of mud. This meant that I needed to take Luke to the top of the hillier areas further inside the park to find a place for him to even consider doing his business. On the way up the hill, it was tricky, but we were okay. On the way down? Slip, crash-on-my-ass, slide, half-roll. Splash.
Thank goodness there was nobody lurking about with the videocam feature of his smartphone; my Cirque du Soleil mudslide antics would’ve become a YouTube viral sensation. Funny if you’re watching. Not so funny when you’re the one whose already weary and aching body is phuluphing across rocky, root-riddled ground.
This fall should not have happened. I never should’ve gone UP a hill in the pouring rain. I’m sure you’re wondering why I took the risk, why I put myself in a situation pretty much destined to end the way it did. An excellent query, and one I asked myself as I was performing those amazingly gymnastic, if spastic, cartwheels through the drenched flora of Central Park.
I won’t claim that I was exercising stupendous rational thought. In fact the “reasoning” that led me up the hill–besides the obvious, Luke needed acceptable ground to potty–lies in the alternate reality that I have to coax myself into with “magic.” In order to get through the evening I’d talked myself into that better-space, into the I’m-just-fine facade that I need to wear, to inhabit, to live-and-breathe like an award-winning performance. I become my alter-ego, the “I’m great, how are you?”–big smile, sparkling eyes, confident-and-cheery tone of voice–version of myself. Because it’s the only way I know to make it through a lot of days, all the things I have to do, and the things I want very much to do, like this event.
Whatever’s a colossal challenge to endure with my MS’d body, I have to transform my mind and spirit, from the inside, out. “A la peanut butter sandwiches!” Except that I have a higher success rate than The Amazing Mumford.
What happened on top of that slippery hill in the rain with Luke was me doing too thorough of a transformation. Me foolishly believing the illusion I’d manufactured. I forgot to drop the persona when there was no longer anybody around to convince. Like an actor who goes deep into character and then forgets to climb back out of the story, the fictive world of fantasy, at the end of shooting a scene. I was so thoroughly into the I’m-just-fine&dandy zone that I forgot for a moment who I really am, what my body is, what it’s capable of and what it’s not. When you’re basically channelling all of your physical, mental & spiritual energy into creating & believing a lie–even if it is for understandable, right and good reasons–it’s next to impossible to “set aside” enough awareness of the truth of your condition, because, HELLO! that’s what you’re hiding from. Or at least hiding from yourself.
Sometimes I work so hard to not limp or to lessen the degree of my limp that I plumb wear myself out. It’s wacked, I know. But the thing is when I’m exhausted and in pain and moving along in public with a pronounced limp, it’s as if my body’s condition is too clear, too obvious, too real–and that self-awareness, the self-observation that I cannot ignore, makes the pain burn brighter, the fatigue feel twice as heavy. So I lie to myself, most of the time. I fake it, just about every day.
Which, I guess if I’m being honest, means I’m lying to whomever is watching me, too. This is a problem, a quandary & a paradox, a Catch 22 of a mess for someone who strives to live an authentic life.
And then there’s this.
Like many other people who live day-in & day-out with chronic illness, pain, fatigue, a variety of invisible symptoms, I’m often accused of pretending, of acting sicker than I am, of using my illness or disability to get attention or to manipulate. Even (especially?) members of the health care industry are dubious of what they can’t see. You might say it’s part of their job, to be suspicious. But what’s the cost of not taking a human being’s suffering at face-value? How many people’s suffering has been made all the worse because the severity of their symptoms is doubted by co-workers or acquaintances, friends & family, doctors?
I don’t know about you, but nothing makes me feel more desperate than not being believed.
Being accused of faking it or flat-out lying ties me up in knots twisted upon knots. A sick and sour tangled tumbleweed.
Yet here I am, fully admitting that I lie & fake it through each day. Of course I’m aiming the charade, the veiling & slanting of truth at myself rather than others, but the fact remains that I’m generating a pretense. Even though it’s for my own benefit, even though it’s the very thing that lessens the awfulness, even though my act is presenting a more-okay version of myself. Still, at it’s essence, it’s an act. I am not being authentic. Because it hurts too much (literally, not figuratively) to be completely genuine.
I guess that’s why I sometimes flush & turn away or lower my head when someone subtly (or not so subtly) alludes to the idea that I’m faking it. Because I am. Just not in the direction or with the nefarious intentions they believe.
I’d love to tell you that the rain-slick grass-skiing limbs-flopping mud-swimming down hills in Central Park is an isolated occurrance. (god, would I love to!) But it’s not. Not by far. Various versions, usually to a less dramatic/comedic degree (thank the America’s Funniest Home Videos gods) happen more than I want to admit. I’m so busy doing that “fake it till you make it” thing to trick myself into feeling more able, healthy, and fine than I really am that I fool myself too far too often. But if it weren’t for my exceptional self-deluding skills (really, I’m at black-belt level, there should be a prize!) I wouldn’t be doing a lot of things, having a lot of experiences, that make my life as rich & rewarding as it is. Like traveling, going to writing workshops & book fairs, volunteering, being an active member of my local TED community, participating in the NYC Marathon, fundraising & advocating for causes I care about.
Multiple sclerosis is something that you cannot see when you look at me. Sure, you can detect the slight limp (that’s more pronounced when I’m in worse pain), the wonkiness that betrays my struggles with balance & equilibrium, that I’m a bit slower in pace than the average bear when walking along. But most people don’t really seem to notice. Largely because they’re distracted by the cute fluffy service dog alongside me (& who can blame them?).
Even then, many people don’t realize that Luke is my mobility assistance dog. They often make the assumption that I’m training him for someone else. Sometimes when I tell people that Luke’s my service dog, that he assists me in areas of balance & stability (among others), they do this thing–a kind of visual reevaluation. It’s the kind of once-over, from head to toe, that is usually reserved as behavior for guy-objectifying-attractive-woman in the movies or on television. In my case, it seems people are trying to assess, to pinpoint with their eyes, any noticeable signs, proof of, affliction. After the quick limb-by-limb inspection, people have been known to say the darndest things. If I had a kitten for every time I’ve heard a variation on the phrase, “Well, you don’t look sick/disabled/like you need a service dog!” I’d be a feral cat colony the size of Australia. I kid you not.
Is it supposed to be a compliment? When someone says that I don’t appear ill, disabled, in need of a service dog or the recumbent trike that I ride, or the handicapped placard that I sometimes use when the MS symptoms are raging. If I were to use the hands of all of Snow White’s dwarfs to count how many people have suggested, or said straight out, that I don’t look like I have MS, I would run out of Hi-Ho-ing Off-to-work-going fingers.
What does that really mean, when someone says I don’t look like I have MS? As if the not-looking-like-it is something to be commended or rewarded. I cannot figure out what I’m meant to feel. What I usually say is something like, Oh, thanks? Because I don’t know what the “right” answer, what the polite response, is.
Many of those comments come along with a tone of voice & facial expressions that convey skepticism, accusation. Or at the very least, a kind of distanced wariness that seems to be the result of encountering a real life example of “one of these things is not like the other.” The “these things” and “other” being the way people expect someone with a disability and/or illness to look versus the way I look standing before them.
Where did this idea come from, that we can tell who is ill or disabled, burdened by fatigue or pain, merely by looking? And what about the idea that all of us of the ill, disabled, battling fatigue and pain ilk somehow look the same?
A guy who happened upon my blog recently sent me a message saying that, from the photos of me posted, I look healthy enough that I shouldn’t need a service dog. He suggested that since service dogs are in such high demand, so expensive to train, and there are so many needy, worthy folks waiting for one, I should give Luke to someone who would make far better use of him. Seriously?
This guy isn’t the first person to suggest that I don’t need a mobility assistance dog or that I should give mine to someone who truly does need one. Like I said before, people say the darndest things.
“Darndest” being my way of sugar-coating. When what I really mean is that people say insensitive, offensive, ludicrous, demeaning, harsh crap, quite frequently. Most of the time they don’t even seem to have a clue how hurtful their words are. Or the level of ignorance and lack of compassion they are displaying. I never know how to respond to the naysayers. No matter how many times it happens, it’s always like the first time, and I find myself a version of shell-shocked by someone’s comments.
I’ve never really known how to deal well with confrontation. I always find myself overwhelmed with that being put on the spot rush of adrenaline; I feel embarrassed and I’ve been told I look guilty, like I’ve been caught. I do feel caught. But more like in a trap.
I still don’t know how to stand gracefully in the face of being angered or disappointed by an uncomfotable exchange and call someone on a lack of curtesy or cavalier unkindness. But I do know this. What you see & how I feel don’t correspond. When you diminish or dismiss the realities of my day to day life with MS, I feel like you’re saying the truth of who I am, how I am, whatever level of illness/health, ability/disability that I’m currently experiencing, is not acceptable, not welcome.
Of course, what’s crazy and even to some extent hypocritical about me being desperate for you to see me–the reality of who I am & what it’s like for me living this life with MS–is that at the same time I’m dying for you to see the truth I’m also, simultaneously, more than likely playing that hiding-from-reality and fake-it-till-you-make-it game with myself.
See me! Don’t see me! How mixed up is that? Yeah, welcome to my world. (an okay place to visit but you don’t wanna move here)
The survivalist lying to myself is also a kind of lying to the people closest to me. Because in the same way I want to protect my own psyche from being fully aware of the extent of pain/fatigue/balance or vision-worsening issues on any given day, I also (even more so) endeavor to protect those I love, the ones whose nature & habit it is to worry about me.
My life is a Farce & Irony Parade. Nine times out of ten, I’m pretending–with every trick I know–to show that I feel better than I really am. (I’d say 10 out of 10, but the truth is that I don’t always have enough energy to pull off what I intend) Eight out of ten times, when asked directly, I lie; I round up with my rose-colored arithmetic & tell you that I’m in a far healthier, much more comfortable state than is true.
I have to believe my own magic act to get the relief I need to get through each day. I want you to believe me when my necessary pretense has me deceiving you, saying I’m OK (when I’m not), because I don’t want you to worry. And also because when you believe, that reenergizes and reinforces my belief.
What a mess. I feel horrified, betrayed, furious & grief-stricken when I’m accused of faking it, of lying. I feel ashamed, too, because maybe–just maybe–I can’t justifiably cast blame against someone for questioning whether it’s my face or a mask, a costume or my real clothes, a character or the authentic me, they are seeing.
Lordy, this is complicated stuff.
Colleagues, acquaintances, here or there someone I thought was a friend, even a family member or two, have accused me of overstating the level of pain & fatigue, the hardship or severity of other MS symptoms. Like many (far too many) people who suffer with the affects/effects of chronic illness, I’ve been told that I exaggerate, that I trot out my “symptoms” only when it’s convenient for me or to get attention. The worst part of those accusations is that a couple of times they have come from the very individuals whom I have most trusted, confided in, opened up to about the severity of my distress. (more about this in a future post about the kind of bullying that goes on in work & academic settings . . .)
I have a hard time asking for help. It’s not about ego, but about being so wrapped up in & invested in the machinations of playing those mind-games with myself about how well I’m doing (so the realities won’t consume me) that I have to strip all the chicanery, all the distracting theatrical, imaginative devices away in order to experience a vulnerable enough spirit to acknowledge, to accept, that I in fact need and desire help.
That raising of the house lights in the theater, the breaking of the fourth wall, the dismantling of the fantasy that keeps me going & keeps me sane–it’s a scary place to be. Because there’s nothing but the truth there. Which is too-real. Too physically pain-filled, too weary-leaden, too anxiety-ridden, too lonely & isolating. So, when I risk that stripping away and ask for help, when I finally and wholeheartedly put my trust in someone enough to tell the truth–no special effects–about how I feel, it’s devastating to not be believed. I feel more than naked in that place; I feel absent of the protection of flesh; all raw, open nerve-endings.
I deal with these faking it/authenticity issues as part & parcel of having MS, but the flames get fanned whenever someone calls into question, directly or indirectly, whether I really need & deserve to have a service dog, whenever I get an indicator from someone that they’re dubious about my level of pain, fatigue, disability. And when I’m in a rough patch health-wise as I have been in terms of fatigue, pain & vision issues of late, my indignation–righteous & rightful or not–can take off like one of those Texas wildfires.
I’ve gotten several comments in regard to my participation in the NYC Marathon with Team Leary Firefighters Foundation that revolve around the idea that if I can ride 26.2 miles on a recumbent trike, it must not be that hard–my life, as it’s affected by MS, must not be all that hard. And those remarks leave me feeling perhaps less “seen” than I have ever felt, because training for the marathon last year and again this year is beyond “hard.” Every single day was already hard. Adding the rigorous schedule of training pushes me to, and sometimes past, my limits. A lot of days I don’t think I’m going to make it; a lot of days I’m sure I’ll have to bow out of the marathon.
I’m not doing this for a cheap thrill, to have a great conversation-starter, or to have something novel to add to my resume. I’m doing it because I believe in the nonprofit I’m raising funds and awareness for–Leary Firefighters Foundation. I’m doing it because I want others like me to know that in spite of a life being intersected with illness and daily, almost-unendurable pain and fatigue, you can still make a difference. You can still make your dreams come true.
All it takes is enough self-conjured magic to make it to the only day that matters: race day. And on that day, well, you just ride. And it doesn’t matter how you look or who believes what. You pedal until you can’t anymore. Hopefully it’s enough to get you across the finish line. Last year it was. This year, well, we’ll just have to find out.
It’s well worth it. But it is not, by any means, easy. Believe that.
If you’re able, please support me! You can donate to my race as a member of Team Leary Firefighters Foundation right here.