A few days ago I hit an interesting, if irregularly-numbered, landmark; the 13th anniversary of collapsing with Chronic Fatigue Syndrome, which you may also know as ME.
After so long, the exact details feel a little faded; however, in the run-up to my collapse I remember cycling flu and immune-response-type symptoms without developing an actual cold or flu, which meant I never took the time to rest properly.
On the day itself my positive self-talk had managed to side-step my bone-crushing exhaustion, and had persuaded my body to make it to a local sewing class. Where, upon arrival, and seeing me staggering and pale from the sheer effort, the class consensus was, “Wow, you really don’t look very well…”
And you know what? I really, really wasn’t.
I tend not to write too much about the illness I’ve experienced for over a decade, which I now consider my spiritual path.
It’s kinda like the weather; once you’ve written about the rain a few times, it feels kinda boring. But, aside from the irregularly-numbered anniversary (yes, I bought cake, because CAKE), a few things have triggered this post. The first was the kind response from a friend who was showing considerable grace in the face of his own painful experience.
I let him know how inspiring I found him, and he replied:
“You inspire me constantly. You don’t let the cards dealt to you hold you back. That is true inspiration.”
I felt incredibly touched by his kind words, and a little jolted, too. I hadn’t really stopped to consider whether the hand of cards I’ve been “dealt” with were particularly good or bad. I’d just attempted to play them occasionally.
(Which, if you have an illness that leaves your hands and arms weak and in pain, as I’m experiencing right now as I write this sentence, is probably an achievement in itself, now I think about it. Huh…)
That’s the thing. When you get used to a certain kind of rain for so long it becomes less like weather, more like a permanent change in climate: a climate where things just happen to be a little damper, where the rain just seems to fall a little more, and where you get used to always prepping your mac and galoshes.
Secondly, the Oscars happened. And, like many people, I became transfixed by the amazing photos of the actress Selma Blair, who was diagnosed with MS last year, sporting a walking stick on the red carpet and looking absolutely fabulous as she did so.
I’ve used a walking stick for over a decade, and I rarely see anyone else under 70 use one. Selma’s literally my own age, and it’s difficult to articulate quite how powerful this image is for me. Representation really does matter.
And thirdly, this NY Times article found its way onto my timeline; “Five Things I Wish I’d Known Before My Chronic Illness”;
“There’s no conversation about that foggy space between the common cold and terminal cancer, where illness won’t go away but won’t kill you, so none of us know what “chronic illness” means until we’re thrown into being sick forever.”
In an acute illness, there’s usually a foe to be defeated or endured, whether it’s the virus for that common cold, or the strange mutation that’s caused cells to multiply in new and alarming ways.
If we think of our experiences like movies, we can sometimes sense a 1st, 2nd and 3rd act; our starting point/normality, the 2nd act where things are unsettled and bring great challenge, and then a 3rd act which normally brings some kind of resolution/restoration.
With an acute illness, act 2 starts when the illness makes its presence known. We undergo a perilous journey into the darkness or the unknown which, eventually, ends. When we recover we awaken anew to the light , as per hero’s journey, returning to where we’d started, perhaps, but utterly transformed and bearing gifts from our journey.
Chronic illness, on the other hand, generally feels like stumbling into the messy part that’s full of change and challenge .. and feeling detained there, indefinitely.
While many folks do make full recoveries and I’d like to feel I’ve made some progress, there’s no one trigger for ME/CFS, and thus no one “cure”. I live with uncertainty about a 3rd act, of returning to what’s considered “normal” (ie, no more “spoons”).
In the face of this not-knowing, at the prospect of “well shit, this might be as good as it gets“, I’ve chosen to regain what sense of agency I have available: I’ve decided to make the best of things where I am, as best I can.
(Hence my kind friend’s comment about my cards, huh?)
So here are five notes I’d like to share from my journey into this uncertain and inevitably messy 2nd act, that’s now 13 years long*;
#1 Self-compassion is crucial
There’s a lot of pressure to be productive and materially successful in today’s society. This is true for pretty much everyone, whether you experience a chronic health issue or not. With so many “life-hacks” around to encourage us get more done throughout the day, our self-worth can feel inextricably linked to our output – especially when we start comparing ourselves with others.
So when I need to nap or factor in several days’ worth of recharge time after events or commitments, I struggle to resist feeling like my value’s taking a nose-dive, too.
This is where self-compassion comes in, thank goodness. Following the three components that Kristen Neff PhD identified – mindfulness, self-kindness and common humanity – I’m able to have a gentler conversation with myself by noticing what’s going on, asking myself what I need, and assuring myself that I’m not alone in however I’m feeling.
#2 .. and it can be incredibly difficult
Which isn’t to say that it’s easy to be compassionate with myself. There’s a level of vulnerability that comes with having a body that’s fallible, and which is openly fallible in public. The number of times I’ve, if you’ll forgive me for going Blanche DuBois on you, “depended on the kindness of strangers” is well into double figures.
There have been times when the support’s felt overwhelming; unfailingly, when someone’s offered to carry me. Accepting the offer comes with a hot, whooshing sensation that flashes over me from the tip of my toes to the top of my head; the prickly heat of shame.
I know it well enough to call it out by its name, right in the moment when I feel it. Which is a pretty ballsy thing to do, I know! But God, it’s still tough.
#3 Gratitude shifts your perspective
Being limited by my energy levels, stamina and mobility means that I take conscious action to be grateful for what I can do. I might not have made it out of the house, earned a stack of money, or influenced the great, the good or the powerful – but I managed to make myself a delicious soup from scratch for lunch, and that counts for something, still.
As the world’s leading scientific expert on gratitude Dr Robert A Emmons points out, “Gratitude is a way of seeing that alters our gaze.” Noticing the little things in life and taking the time to appreciate them, adds a new richness and texture to the day.
As Tessa Miller, writer of the NY Times piece I mention above, puts it;
Though I don’t know what my future holds, I’m overwhelmed with a gratitude I didn’t have before my diagnosis — some days I marvel at just being alive.
I’ve just written more about gratitude and appreciation for the Museum of Happiness; check it out here.
#4 The hidden gifts – for myself and others
One of the main side effects – which I always forget when I’m planning something! – is that I’m slower now, and take more time to do things. And doing things more slowly often means more opportunity to notice things and, most especially, others (an ability enhanced by being a Highly Sensitive Person).
This is why I now perceive my illness to be a spiritual path. By moving at a different pace through the world (literally), the Universe has more time to “fill me up” and use me as its vessel.
And this perspective, of believing I’m on a spiritual path, of believing I’m a vessel for something bigger to work through me in tiny, ordinary ways, has helped to give me and my life a kind of meaning that’s thankfully unrelated to any balance sheet.
The generous and beautiful feedback I receive helps me to accept that others feel the benefit of my greater ability to take notice and be present, too. It becomes a gift that’s shared and amplified, which is wonderful to experience.
#5 Yes, support is everything .. and it can be tough to find
I make it sound pretty good, right? It’s easy for me to find a reframe that’s positive or enlightening as one of my natural gifts is a tendency to see the bright side of things.
But perhaps the hardest aspect of this illness is the one that can be the hardest to talk about: the social isolation and loneliness it involves, though being house-bound most of the time.
I’m not a part of any support group for this condition. I’ve tried a few in the past but I guess there’s something of the Groucho in me; I rarely want to join a club that would have me as a member. Besides, talking about my symptoms and witnessing the occasional one-upmanship of suffering that can take place leaves me feeling worse than when I started.
(This isn’t confined to support groups, by the way; indeed, bonding through shared complaining seems to be common habit for many of us).
Last year I listened to a friend’s interview where she talked about her own chronic health challenges and disability, and how crucial support has been from friends, family, therapists and professionals.
Shame hit me once again. My own network of support is caring but geographically scattered – so more emotional in nature than practical, and sometimes the practical side is where I struggle. I’m one of the few people I know who lives alone with the condition which, coupled with a tendency to resist asking for help unless my fridge is literally empty (my store-cupboards are unlikely to run-out, EVER), means that I can often FEEL unsupported, despite a friendly voice often being only a phone-call away.
I know I’m interconnected with others, with everyone, with the world around me; what’s still a work in progress is making that spiritual sense feel palpable.
. . .
So there you have it; a glimpse into where I am right now, as I continue this path. Despite my own specific travails, I know that everyone is fighting a battle you can’t see. Some battles are more visible than others, but you never ever truly know. Which makes kindness such an important blessing to offer and receive, always.
May you offer and receive the blessing of kindness today, too.
. . .
* To say that I have only been ill for 13 years is the short version of a much longer story; in truth, my collapse was a life-changing deterioration of a much-older, undiagnosed but “mild” relapsing/remitting case of the condition which started in early adolescence. Have I been ill for 13 years, or since I was 13 years old? Both, alas, are true.
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