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Guest post: Anita Dasson
I’ve had chronic pain on and off since childhood, and have now been diagnosed with Ankylosing Spondylitis and a few other health conditions.
I had an MRI for my spine yesterday. I’ve received the films and I am waiting for the report and specialist consultation. Although some areas on the films look suspicious, I can’t help taking the films out and trying to make sense of them over and over again.
Waiting is the hardest bit. There are lots of conflicting thoughts and anxieties bounce around inside my head and heart.
What’s the Point? Where’s the Justice?
For many months and years, I’ve worked hard to stay active despite the pain and debility. I’ve worked through hours of physical rehabilitation, tried different diet plans, taken different drugs with their accompanying side-effects, endured the indignity of hospital procedures and failing backward-facing hospital gowns, and made overcoming Ankylosing Spondylitis my project.
I get through a flare and begin feeling stronger and braver. For a fleeting moment, I think maybe it’ll be ok, maybe I’m one of the lucky ones who got out unscathed.
Maybe I’ll get to wear this disease like an old battle scar with fond remembrance and kindly platitudes to spout to the newly-diagnosed.
But then, Wham! Reality bites hard. I have new symptoms and get sick all over again. More tests, doctor visits, get back onto the natural treatment and medication roundabout.
The backward-forward motion of the illness. What gives?
Whatever happens next? The physical rehab I’ve done, the strength I’ve managed to build in my body and spirit, the reading and research I’ve done and the practical changes I’ve made in my diet; my home and outlook all holistically create the context with which I face the next challenge – This is all part of my story.
There’s no way to know where I’ll be if I hadn’t done those things.
Hold Space, Hold Me
The Kubler-Ross Model of Grief talks about the 5 stages of grief-denial, acceptance, bargaining, depression and acceptance.
Other grief frameworks talk about the 7 stages of grief.
Some say grief doesn’t fit into a clear structure but the waves of grief get more manageable over time. Not knowing what shape the years ahead may take, wondering if I’ve lost my dreams, or worse yet, lost my future, I go through a whole range of emotions and responses, sometimes all within the space of an hour.
And then I cycle through these very same emotions again and again. Some of these emotions have no name, they are just strange groans that come up, like silent screams from the pit of my stomach.
Society, the media, spiritual gurus, and sometimes those closest to us whose opinions mean the most, admonish us when we talk about the sadness. They tell us we need to think positive thoughts and only focus on the good.
Maybe they’re not able to hold space for our feelings, maybe our feelings are just too raw and confronting. Or maybe it’s painful to sit with our discomfort, and not be able to make it go away.
For me, this is the loneliest part of having a chronic illness.
Right Where I Am
Real healing began when I started learning to live right where I am.
When I stopped trying to overcome the pain, when I stopped trying to hide the ugly parts of being ill, when I started being real, when I stopped judging my experience, started standing aside and letting things be just the way they are, that’s when I realized I should be right where I am.
That’s when I started really paying attention to celebrating the good, such as moments with my children, sunshine, purple jacaranda flowers, waves catching the sunlight, the sound of wind through leaves…
I’ve come to realize that the now, the wildflowers I see as well as the thorns that hurt me today, are what it’s all about.
I’m sure goals, destinations, and overcoming hardship are all good things. Are they really good things when I’m up against progressing illness, an elusive cure, and uncertainty about whether a flare or remission is waiting around the corner?
I don’t know if I’ll reach a point of ‘coming to terms with it all’, and that’s ok. This is my journey, and traveling it courageously each day seems a lot more do-able to me than overcoming or winning.
Sometimes feel extremely alone and needy, wanting someone to go to a doctor’s appointment with me or a simple procedure to draw blood. Sometimes I find myself crying my eyes out in a public toilet after a painful hour-long scan.
All part of the vast, rich and all-encompassing human experience, I whisper to myself.
Rethinking My Identity
These are the words people living with chronic illness choose to describe themselves. Yet, I don’t feel right describing myself with those words.
Sometimes, I don’t feel like any of those things. Sometimes, I am sure I am a warrior woman and other times, what I feel inside does not in any way align with how others see me on the outside. My experience with chronic illness is wide and deep.
My thoughts, hopes, anxieties and expectations run the gamut from anger to frustration to despair to deep peace and hope. No one word contains all of those emotions.
Pre-illness, I lived an active and full life. I was spirited and did everything with white-hot intensity. Now, I have slowed down significantly. It has been daunting, depressing even, watching myself change, not unlike a butterfly back to caterpillar metamorphosis.
Even so, I feel like slowing down has been a good thing for me, giving my spirit time to catch up after having been hurried along for so long. I’m hopeful I will find that elusive balance between living a full-on life interspersed with quiet times to recuperate and seek refuge.
Slowing down has also allowed me to pare down my life to do things that are the most important and valuable to me. I’ve become more intentional in what I do, how and who with I spend my time and energy, and how I use my words. (Yes, speaking is very draining!)
There is a refreshing simplicity to my days. I’ve been able to bring a whole new level of gentleness and presence to my relationships.
Finding Peace In My Wholeness
I’m whole. Although my body’s weaker than it has been in years, I feel more whole than I’ve ever felt. Well-meaning friends comment about how weak I’ve gotten and how broken I am.
This makes me sad but more than that, I feel an uncomfortable churning and anger rising up in me.
I’m sure these comments are just routinized words with no thought behind them. Yet they make me think about brokenness and what that means to those of us living with chronic illness.
Each of us is intrinsically whole, just as the earth’s individual organisms and life systems, and the universe’s galaxies and star systems are each whole, in and of themselves. This wholeness is indescribable and complete. (The word ‘wholeness’ doesn’t seem to define it well enough either!)
There is so much more going right than wrong in our bodies, just as there is so much more going right with the world than whatever’s going wrong.
Our bodies, and who we are, exist as wholes within a greater whole. So, yes, I have periods of terrible, mind-bending pain and soul-destroying depression but I’m whole.
Though I may get sicker, need more medication, surgery or other treatment, I will continue to carry with me my innate wholeness.
I am greater and so much more than what happens to my body.
Anita lives in Australia. She was originally born in Singapore and moved to Australia three years ago. Her AS diagnosis was made in Australia but chronic illness has been part of her life since childhood. In Singapore, Anita trained as a birth educator and counsellor and worked with families.