Five years have passed since I was diagnosed with Rheumatoid Arthritis (RA), and that time has brought with it more pain, shame, frustration, fear and angst than all my 49 years combined…So, why do I say that I actually see this disease as a blessing?
I don’t see it that way all the time. But if I didn’t get RA, I know I would have continued to beat myself up for failing to meet my inhuman goals. No wonder my cells got in on the action. My body had clearly been hosting an autoimmune cell-bashing party for decades. It continued until I woke up one ‘morning-after’, and allowed myself to finally see the household damage and put an end to it. I couldn’t kick the cells out since they were mine, but I could create di erent House Rules, ones that wouldn’t tolerate such abuse. I don’t think I would’ve admitted how meanly I treated myself if it hadn’t gotten as painfully raucous as it did. I thank my RA for convincing
me to transform some of my self-criticism into self-compassion. It taught me to treat myself with some of the kindness that I extended so easily to others. For this, I am grateful.
Still, you might say, “Really? How can a chronic, progressive disease actually be a Blessing?” Transforming self-criticism into self-compassion is one thing, but the ‘B’ word is a profound one that shouldn’t be referred to lightly. After all, it suggests actual joy.
At rst there were little micro-moments of kid-like wonder and joy, little ashes when I found myself in nourishing situations that I never would have experienced pre-diagnosis. Then, there would be untenable stretches of deep pain, fear, anger, self-pity, depression and isolation, all related to chronic illness. However, as time passed, I realized that my healing journey was lled with more post-diagnosis goodness than upset.
Don’t get me wrong, I’m not mistaking myself for an angelic being who sports a halo above her head and sees everything in a rose-colored hue. I know that I can’t land on that cloud any time soon,…but I do see myself as someone who is on a journey towards that pu y place of peace. So, given this trajectory, what I am trying to do now, is to accept, embrace and enjoy the time that spans between ‘point A’ (coming to a painful, limping halt) and ‘point B’ (soar- ing effortlessly with my own wings). The bottom-line is that
I wouldn’t have found myself at ‘Point A’ if chronic illness hadn’t stopped me in my tracks.
I was sent several messages before I couldn’t walk – the first was in 2002 in the form of my first autoimmune disorder – Sjögren’s Syndrome. It was heard loud and clear throughout my whole system, but my eyes and lungs bore the brunt of it. Unfortunately, I didn’t heed the call to stop working so hard – trying to prove something to myself as much as to the rest of the world. I just pushed on, with more than occasional sensations of hot glass and sand being ground into my eyes, and wincing pain when I breathed. The pain was so great that I would hold my breath as long as possible before having to give up, gulp air and feel that tissue-tear- ing sensation around my heart. There would be a bit of respite before the cycle started again.
As it turns out, that pain was only a little aperitif served up before one heck of a Michelin-starred main course. My entire body went on strike and stopped functioning. It stopped acquiescing to my ‘stubborn-as- a-mule’ ways to achieve. I admit doing some impactful things in the International Development arena during that time. I worked in solidarity with marginalized populations whose voices were silenced – be they children, or people who were economically impoverished, socially-oppressed, differently-abled, displaced or ill. That all sounds well and good, but I silenced my own cries for help in order to hear theirs. Sometimes my arm wouldn’t work and I would just joke that, ‘it was OK,… I have another.’ But, it actually wasn’t OK. It wasn’t OK at all….it was a message that went unheeded.
I would go to work with what I called a ‘broken wing’ – it was when an arm couldn’t lift itself up to start the ying cycle, so I would keep it tucked protectively close to my body, may- be under a scarf, since a sling would have indicated that I was hurting. I found that a scarf was a formidable decoy, especially when it was a beautiful raw silk one that matched my outfit.
Finally, I heeded the message because my feet couldn’t move anymore. And my feet couldn’t move anymore because my knees couldn’t bend, and my knees couldn’t bend because any e ort to make them do so was too painful to overcome the stand-still. It was an all-out mutiny, where every single cell conspired and collectively determined that the only way to get me to rest, was for my body to go on strike. So, strike it did. Not a little petty strike like we see in the States, but an impres- sively massive one that you see in cities like Paris where e orts are coordinated so strategically that they bring public transport to a halt.
It took a lot to bring me to a limping halt. It took the sensa- tion of iron rods heated in the re and then pierced into my bones, joints and tendons – where they laid throbbing before they were twisted and moved around to make the entry-point of the wounds bigger. That’s when I admitted that I needed to entertain alternative ways to get through life since my way wasn’t working out so well.
I started to see that when my body was engulfed in pain and my mind felt overwhelmed and defeated with despair, there was an untapped source of fuel to keep me pluggin’ along. It seemed to come from the outside world – from everything but me. I guess that was key at the time. I needed to completely surrender to something outside of myself that I could rely on in the absence of my own ‘triumph’.
I call it ‘the universe’s energy’, which, for me is a mix of some of my favorite deities and a couple earth-bound teachers har- monizing nature and sending its goodness my way. It is an empowering and life-a rming force that makes me want to inhabit my body and connect with the ow of the universe.
Tapping into this source has proven to be the best sort of palliative care for me when I feel side- lined by disease and its stigma. Looking back, I now see that what I called the ‘universe’s energy’ and my inner ‘spirit’ are actually the same thing. I just wasn’t able to make that con- nection until I admitted defeat and completely surrendered.
So the journey continues onward and upwards. Like us all, I am just a story in-progress – sharing some of the chapters that have been written to-date. I share my story with others who are struggling with disease, in hopes that they will feel less alone and more empowered to embody themselves…to start listening to the collective whisperings of a body that needs to heal. This is my primary ‘audience’ – we come first.
I am also compelled to share my story with physicians because I sense that so many of you want to hear the narrative behind our x-rays, but can’t do so in the 10-15 minutes you are authorized to spend with us.
In bringing us together (‘us’ patients and ‘you’ physicians) to read this, I hope that ‘We’ can have a shared experience that sheds light on how disease presents itself on the level of body, mind and spirit. It truly is a ‘package-deal’ from the patient’s perspective. We might come to Providers with a pin-pointed source of body pain, but its impact can’t be contained within a limb or an organ. It extends beyond a set of coordinates on a scan to penetrate our mind and spirit, too. While I acknowledge the egregious scope-creep here in regards to how medical domains are currently classified, I do hope that we can rally together to create systemic change that supports a more holistic approach to healing. A paradigm shift of that magnitude requires our combined energy.
For fear of placing societal well-being above my own – yet again, I will close by shifting my energy back to my own healing. While everyone embarks on their own path after being dealt the blow of an unfortunate diagnostic code, my journey suggests that the sooner we inhabit our bodies and acknowledge our pain, the sooner we’ll be able to heal and fly again.
So, that’s my pledge to myself hereon in, to listen so acutely to my body, that it never has to scream life to a stop in order for it to get my attention and guide me home. As my story revealed, my body will continue to lead, (regardless of my willingness to follow), but what makes me smile is knowing how much easier the journey will be without beating myself up along the way. At home within myself, I’ll be able to soar, thanks to my newfound self-compassion and its majestic wingspan.
Elisabeth Abeson is a Duke IM Trained Integrative Health Coach.
www.ElisabethAbeson.com
