Today’s guest post comes from Anna Kennedy. Anna is a psychologist who became sick with severe ME (sometimes referred to as Chronic Fatigue Syndrome) and POTS. Here, she thoughtfully discusses the mindset that has helped her navigate ‘Nowhere Land’. I can really relate to the part where she talks about being able to do things that used to be impossible and how she thought she would never take that for granted again. Thank you Anna for sharing your experiences here. I know that many will relate to your journey.
This is kind of how I feel these days. I have nothing much to show for the years since ME (Myalgic Encephalomyelitis) and its sidekick POTS (Postural Orthostatic Tachycardia Syndrome) became my constant bedfellows. During the first horror year, when I was bedbound and lost 25% of my body weight, I at least looked the part. ME was written all over my face, not to mention the rest of me which couldn’t stand up long enough to make a quick cuppa. But nowadays I look pretty normal.
I’ve improved to the point that I’m more moderately affected with the odd severe dip thrown in just to keep me on my toes. My symptoms are less severe, but still unpredictable and frustratingly limiting. I’m too sick to hold down a job, but can manage paced domestic tasks and the occasional social event, all accompanied by the predictably unpredictable multitude of symptoms and payback that ME dishes out just for living. If I lived in a silent dimly lit bubble and did absolutely nothing except lie down for 6 months, I expect I may even begin to feel quite chipper; but unfortunately there’s that little thing called Life that gets in the way of that.
These days I feel a gnawing kind of improvement guilt. I guess it’s probably akin to a kind of survivor guilt, a knowing about just how traumatic this illness can be. Though the memory of severe ME is still fresh, I am not completely confined to my bed. But I carry with me an awareness (that I didn’t have before) of the many who count my very worst days among their very best; who’ve lived for decades in a 24-hour terror of suffering so ghastly that it’s unfathomable for those who do not live it. I feel guilty that I was completely ignorant about ME before I was diagnosed. Guilty that I didn’t use my pre-illness years working as a health professional to recognise and educate people about ME and help those who I did not even know existed because they socialised online and lived within the four walls of their bedroom. I feel guilty for improving when my friends with ME have not or have worsened and I still can’t do anything to relieve their suffering.
I feel guilty for not being grateful enough for the improvements I’ve made. I remember when I was severely ill thinking that if I could just manage to cook a meal for my family again, I’d be fine with that. I yearned to load the dishwasher or take out the garbage. That was enough quality of life for me I thought. But then when I got there, the gratefulness that I tried to hold onto so tightly, slipped through my fingers. Disappointingly quickly those domestic tasks, that seemed oh-so-shiny when I was too ill to do them, became dull. Because, when I was at my most ill, I held on to a fantasy that improvement in functioning would naturally come with feeling well. But that didn’t happen. Instead, I moved up a notch from hellish to chronically cruddy. So, when it comes down to it, I’m still sick every day; I can just do a bit more while being sick. And I can hide it better.
These days I inhabit Nowhere Land. I straddle the worlds of the chronically sick and The Well. I move in two circles, in neither of which I feel I have a firm place. To the doctors, I’m “managing a chronic illness”; I’ve gone to see the specialists who I hear may help, I’ve diligently tried their treatments and followed their protocols (most of which made me worse). So I’m not really interesting to them now, because I’m not a success story but I’m not knocking on heaven’s door. They’ve run out of ideas and just sort of leave me to it. I’m in Nowhere Land.
Socially, I’m a bit of a Nowhere (wo)man. My friends with ME, the ones I made online when I was too sick for a social life and was lonely and desperate for understanding, those beautiful and courageous souls that I’ve never seen in the flesh, they’re mostly still here. But I let them down because I’m not online as much and I miss supporting them when they need it most. I feel like my news of doing is deeply insensitive to their continued suffering, and I’ve betrayed them in having left the hellish world they still inhabit. I wonder if they feel angry when I vent and whine in our online support group about my trials which must all seem like problems they’d give their left arm to have. Little do they know, they are the precious thread of red wool that I use to wind my way back to comfort when I get lost in Nowhere Land.
Nowadays, I can also move into the world of the well. Carrying around my knowledge of the unseen world of the chronically ill, I spend time with my in-the-flesh people. But I’m like some kind of odd expat who randomly pops in for unexpected visits. Of those I’ve told about my illness, some have stayed and others have backed slowly away. Some I’ve backed away from too because their disinterest has hurt too much. Those who have stayed have been patient enough to listen to my botched attempts at explaining ME in 100 words or less, and tried their best to understand its weirdness. They’ve borne witness to my life with ME with curiosity and empathy. They’ve been repeatedly let down by my unreliability but kept coming back for more. And they have stood patiently still while I’ve moved between my worlds. For these precious people, I’m grateful beyond words. I don’t know that I’d have done the same in their shoes. These special people have made room for the ME in my life and put up with me changing from a mostly spirited, reliable and supportive friend, into a friend who is present with ad hoc inconsistency at best.
To the uninitiated, I’m better, as in recovered. Because that’s generally the well person’s understanding of illness: you get sick then you get better…or you die. There’s no in between. There’s none of this living-with-it-on-and-on-every-single-day sickness. “Gee you’re looking well” they say, and “I’m so glad you’re back on track”. In reality I’m still an 80-year-old wolf in 43-year-old sheep’s clothing. Look more closely and you may wonder why I’m never really seen until the clock reaches pm. At afternoon school pickup, you will notice I’m often the mum with wet hair and no makeup who shuffles to the nearest bench while the other mums stand around chatting in groups. I half listen but I’ve got little to say; partly because my one achievement of the day has been showering and getting dressed; also because to join them would mean standing up and losing what little remaining power my body has; but mostly because my brain-o-mush means I only absorb bits and pieces: I make a tit of myself by forgetting things they’ve just told me or making vague comments that trail off mid-sentence because I’ve suddenly forgotten what I was saying.
I’m the odd mum in my village; the middle-aged lady driving the nanna cart, wearing sunglasses in winter, head bobbing wearily as I trundle towards the classroom door, pale and nauseated by the darting movements and fingernails-down-blackboard noises that delighted children make when the school bell sounds. And, when he sees me, my 5-year-old chucks his backpack down in the middle of the schoolyard because he’s excruciatingly ‘‘barrassed‘ that I’m on my scooter and furious at this very public display that I’m sick again. He knows full well it means, once home, Mum will shove Sao biscuits and jar of Vegemite on the table and stumble back to bed where he’ll visit me with a thousand bits of paper he’s coloured in and school notices to sign and stories of the big hurt on his hand from the awesome tricks he did on the monkey bars. And all the time my brain is blank and nothing’s going in, nada, zilch. And, because my body can’t seem to produce energy for ANYTHING, I have to remind myself to move my face into a smile, and let out uh-huhs and oh dears and kiss his hurt and make futile attempts at focusing my eyes on his drawing of Batman fighting the alien dude.
Before he leaves my bed, he reaches into his pocket and pulls out another little thing he’s collected today. He’s been doing this since I first became ill, before he was old enough to speak the words of what was happening to his mother.
He places a little white stone on top of a mounting collection of feathers and rocks and shells on my bedside table, precious gifts from him to me. “Thereyar Mummy, to help you get better”. If only, if only, my darling.
Over the years, I’ve started to run out of words to explain ME. My brain scrambles in my efforts to describe its convoluted-ness in simple terms. Also, telling the story of ME and my experience with it makes me feel vulnerable. It’s like peeling a bandaid off a wound that hasn’t healed and waiting for peoples’ reactions: some recoil and quickly er-hum their way out of the conversation; others start to get that suspicious look of disbelief I’ve seen too many times and which never fails to hurt to the core; many show great caring which can either make me weep with embarrassed relief or go on to gush in a tidal wave of oversharing. For those curious enough to ask more, there is, frustratingly, never a straight-forward answer to the questions that follow: What causes it? What’s the treatment? What’s your prognosis? Why haven’t I heard of ME, oh CFS yes I’ve heard of that, that’s that chronic fatigue thing? Do you know about XYZ [insert helpful suggestion of treatment or name of alternative health practitioner here]? You’re looking good, when can you go back to work/ use your spare time to paint/help out at the school fete/come jogging with me?
At times, I’ve wanted people to know about the parts of my life they don’t see. I’ve explained that when they don’t see me for long stretches it’s because I’m more ill and horizontally resting so that I can be well enough to do things again. Hoping not to sound like a whinger, I’ve provided a few details of the limited routine I follow to tread the fine line between semi-functional and not; how a “pretty good” week is still one with 2-3 days spent in bed; and how I live every day with pain and nausea and trouble being upright. They listen and nod and say kind things, but I can see they can’t really fathom how the person in front of them who looks alright has any kind of illness at all. And I understand all this, really I do, because that would have been me a few years ago. Listening and nodding, but inside going Huh?
So that’s where I am. Sitting (well, mostly lying) in Nowhere Land: the world of moderate ME. In and out of the world of the well and the sick. Making all my nowhere plans; ideas that so often don’t come to fruition because ME has its own agenda.
But how does that song end again?
And, I’m reminded how very blessed I am. I have my people, the souls behind the screen and in the flesh, the ones who buoy me, teach me, and love me. And, even in my Nowhere Land, my people find me, and they meet me where I am.