The last two years of my life have been so epic, I actually don’t even recognise myself as I look back. I feel like I’ve just been reinvented over and over. I’ve lost myself, found myself, struggled in the dark, let go, let in, held on, kicked, screamed, despaired, rejoiced, grieved, and accepted.
This time two years ago I was laughing and crying in the Cambodian wet season with my beautiful friend Sok who taught me so much about resilience, grace, joy and peace at the ripe old age of 14.
This time last year I was in Byron Bay on my post chemo holiday sipping raw cacao smoothies, full of hope for the future and had no expectations. It was magic.
It’s been a crazy time of coming to terms with my identity, my changed physical appearance and consolidating the tension between grieving and gratefulness.
On my 3rd day, my heart quietened a little and I decided to take things as they come and just be content with life…and the simplest of things became the most glorious. I no longer held grand expectations and stopped striving to get something from the city and just let it wash over me minute by minute. It was a day of gentle ambling, no planning, getting lost and delighting in the sights of a snoozing delivery truck man, cafes with ridiculous names, subway buskers and ultra friendly peppy waitresses. I surrendered to normalcy and let it be. I bought some punnets of organic berries and yoghurt and had a little reflective afternoon feast on a park bench in a courtyard that reeked of urine, but even that just added to the blunt light and shade of humanity.
That night I headed along to see Passenger and Stu Larsen play at a lovely venue nearby. I was at home. When one human being dares to have the courage to be vulnerable and bare their soul, the world stops spinning and nothing really matters. Barriers dissolve and people no longer have edges. I had to keep sneaking glances at the crowd’s eager faces upturned to the stage, drinking in every lyric, eyes sparkling with brimmed hearts. How humanity can so perfectly unite through the things we cannot explain. The irony.
As the iconography of Chicago swooshes past, blockish buildings with multiple spiderish windowed eyes, noble trees stilled in time, ridiculously oversized billboards shouting down on us, my heart is full. I love being on the road, I love being in motion. It’s the time I most re-collect, it’s when my life has its own soundtrack and I’m completely unravelled. I’m sitting here on the bus, crying yet again, but I don’t hold it back anymore. I’d rather sit in my emotion and be, than fight it.
When I was 10 or 11 years old, I would sit high in my whispering pine tree and survey 360 degree vistas of rolling vineyards, cows, the ever stretching shared driveway and fruit orchard and write songs in my head. I had this sense that my life was just a screenplay, being acted out as the seconds passed and reality could be suspended. There was assurance that I was not in control and everything would be okay as I communed with the orchestrator of all things. It’s like this when I travel. I need to be recreated daily.
Humanity is overwhelming me today. My jovial and trusting taxi driver, busting out some smooth jazz and making sure I get safely to the curb, a group of african americans on a street corner open mouth laughing without abandon, like the sun beams out from between their teeth.
There is so much beauty in living simply instead of just simply living. I think as human beings we were designed to wander a little, without destination. I’ve lived an adult life fraught with planning in advance because I’ve been told that is how a grown-up must operate. We live in a society dictated by clocks and calendars and deadlines and weekends. What about week beginnings? What about just having days? I’ve had it with agonising over the right path, striving to forge my way with a hammer and chisel, blindly chipping through the rocky outcrops. It’s all an illusion, a construct we carry in our minds. There is no final destination. We have already arrived. This is it. There is no one way for a human being.
We are indoctrinated not to live small lives, to be known, to stand out, to be noticed. To establish an identity worth remembering. To what end? Why are we not enough as we are?
The greatest human tragedy is that we are desperately striving to be known in a world that understatedly whispers our name every time the breeze stirs a leaf.
We daren’t believe that we are integrated in all things and that we actually belong here.
May we quietly accept that what will be, will be. We are here. This is it. And that is the order of things. Step out into the wild. It’s dangerously wonderful.
So I’m sitting here on a bus back to Madison, leaving behind the big city of Chicago. It’s been an emotional few days, exploring the city on my own and re-discovering some truths about myself. I love the depth of big cities, the capacity to blend into a moving and ever-evolving landscape, readily consumed into the slip stream of society as soon as you step foot onto the pavement.
Chicago certainly has a nice feel to it, a pulse that reaches deep beneath the subway caverns. It feels safe, friendly and it’s a pleasant place to get lost in. I started my days in leafy Lincoln Park, ambling past large street fronted homes with ginormous flowers spilling from decorative urns in bay windows.
The subway took me downtown and each day I got off at a different stop and slowly made my way toward the lake coast. The first day I ended up at Navy Pier, a crass touristy strip sporting cruises and over-priced eateries. I quickly moved on along the lake edge, passing children playing on sculptures perched on grassy knolls, couples having picnics and keen cyclists. I eventually found my way to Millennium Park and reveled in the park art; the giant reflective ‘bean’, the faces spouting water and garden-topped heads. It’s fascinating watching how people interact with art, what motivates behaviour, the joy, the wonder and the excitement of something out of place. Human beings and novelty. I lay on the grass in the outdoor ampitheatre for a while, soaking in the sounds of birds, lollapolooza music festival, shrieking children and distant sirens.
On the 2nd day, my jet lag caught up with me. I got off the subway and came across a giant art store and picked up a few supplies before heading to the Art Institute. I’m always taken aback by the majesty and intrigue of museums. No matter what city I’m in, I gravitate towards them. I was overwhelmed to get up close and personal with Vincent Van Gough and moved to tears by old familiars I’ve studied intimately by Magritte, Dali, Monet, Toulouse Lautrec and Kandinsky. I sympathised with their angst and struggle to render the impossible and came away with this innate umbilical connection to the roots of creativity.
I sat in the park and started sketching the bean, no easy feat and it started to rain. I was feeling incredibly lonely, desperate to talk to someone about the art and share the experience. Why is it that rain always appears on cue when it first fills my eyes? It worked out well, as I could use the raindrops on the table to mix with my pencils. I didn’t get to finish as I felt the need to move on. I stood for a while, observing the umbrella-ed grasses as Chicagoans had set up to watch an outdoor show at the amphitheatre. As the rain drizzled on, I picked up my things and slowly made my way back, stopping at a friendly little cafe in Lincoln Park where the attendant used my name and I was once again called into existence.
“To come to the pleasure you have not
you must go by a way in which you enjoy not.
To come to the knowledge you have not
you must go by the way in which you know not
To come to the possession you have not
you must go by a way in which you possess not.
To come to be what you are not
you must go by a way in which you are not.”—http://en.wikipedia.org/wiki/Ascent_of_Mount_Carmel
I’ve been writing blog entries in my head for months and months…but haven’t had the courage to write them down. To be truthful, this last year since finishing chemo has been the hardest, and I truly think, it’s only now, 1 year later that I’m actually processing all of this. It floods in upon me when the sun goes down and I wrestle and wrestle with unseen beings amidst the cracks in my cream ceiling.
I think the hardest thing with chronic illness is the chronic loneliness. So much time must be spent alone with oneself. For me it’s been in bed, my safe place, an island in the middle of my room that supports my head, weary with too many thoughts for one space.
It’s not so much an experience of being misunderstood, but completely being in a parralell universe, far removed from the rest of humanity. A different time continuum. Moving to a completely removed rhythm. I no longer fit into the norm. I am very aware of being different.
The struggle is with me every day, to fight against the old ways of existing because it is expected, of running through the motions of this life. The expectations to work a 9-5 job, accumulate money, buy things, buy a house, forge a career, stay still, stay settled, stay where I can see you, stay where I can keep you like a caged bird. I no longer feel like my own person, but the property of expectations. I want to run away.
I made some sacred promises to myself last year. To never, ever take my life for granted. To live in moments. To stay true to my own voice. I’m now wondering if that is humanly possible? I’ve already broken them a few times. It is so easy once treatment is over, once survival mode it over, once the circle of nurses scurry away and the appointments fade to be left with a gaping hole. For 5 months my life was simply making it, moment by moment to the end of June. Beyond then was a complete mystery. And then it felt like I was completely on my own. I had to work it out with this new map written in a language I was still learning.
Donna Williams, breast cancer surviver and carrier of a handful of other health conditions expresses it like this:
what’s crazy about cancer is at first you are in this derealised state… you can’t believe this is for real… as in, how can this be me, I’m not a person with cancer… and then you face up to treatment even though half of you is still in denial… and if you get through treatment and you’ve survived, you get haunted by its potential to return, then if you get past that, really believe it aint coming back, then if you find yourself facing that possibility again you are again in the same denial you had right at the start, as in, no, that was too fast, I didn’t get enough time without all this, er, no, I couldn’t be that unlucky, er, but, but, but… our mortality is easy for us when all’s going good, hard when its not.
I love that she writes “our mortality is easy for us when all’s going good, hard when it’s not”. How true is that of our lives. We seductively get swept into a security. We expect to wake up tomorrow and find everything exactly where we left it. We cling to our possessions like they are a part of us. I am so frustrated with our culture. I am so frustrated with myself. Fooling myself that anything extraneous will serve me. Are our lives boiled down to facebook status about eating the perfect steak and photo captures of the highlights of the past? And when did our bodies become so revered and demanding of attention? We worship an aesthetic that is not realistic. An extraneous ideal that is always within grasp but never quite reaches our outstretched fingertips.
I find solace in friends who have shared with me their alternate realities due to question marks placed over their mortality. They are always seeking, searching, exploring, asking all the questions. Without this slight tension, are we as human beings left with lives that are never quite going to be ‘it’?
There is always someone who is doing it tougher, and I scold myself for even entertaining thoughts that focus on what I don’t have. But maybe that is the human condition? Blinded to our own grace. Blinded to our own capacity to break moulds and shift paradigms. Blinded to our own courage.
Life is not fair. Never has been. Life for some is an easy ride. For others a daily struggle. Some don’t make it into adulthood. Some, like friends of mine are killed in a car crash on the brink of new adventures. Some experience the world through vastly different physiological systems. Some fight and fight for what is right and never see it into fruition. Life is not fair. Then why do we live in a comparison game? I’m all too guilty of wondering what it would be like if I had this or that or him or her.
Being in my early 30’s, undefined and alone with this wrestle every night is strange. It’s just me and it. And I will continue to battle it out, each night until I get peace again. Peace that goes far, far beyond my understanding.
“Forget the room of one’s own - write in the kitchen, lock yourself up in the bathroom. Write on the bus or in the welfare line, on the job or during meals, between sleeping and waking. I write while sitting on the john. No long stretches at the typewriter unless you’re wealthy or have a patron - you may not even own a typewriter. While you wash the floor or clothes listen to the words chanting in your body. When you’re depressed, angry, hurt, when compassion and love possess you, when you cannot help but write.”—Gloria Anzaldúa (via lingeringlilies)
I don’t like being the bearer of bad news, but I knew you would all want to know how Jenni’s doing.
On Saturday morning, our darling Jenni passed away peacefully at home. She wasn’t in any pain and it happened very quickly. The night before she had a contented sleep, so she could not have been much happier.
-If anyone wants any more details, or information on her funeral, they can feel free to contact me- my page is forever-a-hufflepuff.
I’m shocked to hear that a 21 year old girl, Jenni, diagnosed with ovarian cancer this time last year just passed away. I drew great strength from her blog during my treatment. Peace and hope amidst the sadness. You were courage beyond measure x
Here I am on the eve of surgery again. Surgery I never thought I’d have again. 11 months and 1 day later another laparotomy. A pesky cyst discovered 6 months post chemo. Another 15cm cut through my abdomen. Another stretch of months to recover. Another path to begin striding. Littered with flowers. Littered with leaves. Littered with fallen branches, but always winding onward.
I know I had become complacent again. Too settled. Too uninspired. Too dispassionate. Too much striving. I had strayed from what is most important to me.
And so tonight I reclaim strength and solace. I collect the parts of me scattered to the ends of the earth and stitch myself back together with a silver thread. I reach out to the balmy night and breathe.
I am human and sometimes I live too much in my head and forget who I am. Thank goodness that our lives need not be dictated by the past. That all that exists is this moment in time and everything else is constructed in our thoughts and the meaning we create. Thank goodness for forgiveness when we have not had integrity, and for the dispelling of fear that constrains. For starting again.
"Cancer treatment had insulated me with solid walls of special circumstance. For months, I’d been hiding inside that fortress where caregivers hovered, detractors deferred. Extenuated from all the rules that govern the daily grind, I had my mother to take care of me, and when I didn’t have her, I had the mother of all excuses. But now the drawbridge had dropped, and all my old problems were waiting patiently on the far side of the most, armed with the added battering ram of post-cancer fatigue. Nonetheless, everyone was looking at me saying "So come on, already. Bounce back! Get over it! You’re in remission!"
Joni Rodgers ‘Bald in the land of big hair’ pg 200-201
I’ve started a health blog here http://eatmearainbow.tumblr.com/. I don’t expect anyone to read it, it is more intended as a record for me and as a form of accountability as I adjust to a new way of living. Now I can’t get away with anything! It is basically about what I eat, sleep, drink and do to make my body as unfriendly to cancer as possible, so that you don’t have to read about those boring details here. Unless I have a duende epiphany through the health journey then it will double up :)
The magic day that was always faint in the distance, yet crept up larger and larger and more into focus as the seasons changed, and winter threw her icy cloak over our city.
The 18th consecutive Tuesday of treatment. Finished.
Four and a half months.
There were times when I didn’t want to do it any more. When rolling out of bed at 7am in winter on a tuesday morning to go in for bloods and chemo was a matter of fighting my own will instead of fighting for my life.
As I slept for days at a time in the last few weeks, the shadows got darker under my eyes and so did my thoughts. But I kept them at bay. Mostly.
And now…I’m pretty darn exhausted and have spent the day in bed with a throat infection today. But no one promised life to be fair…and that’s okay. Bitterness gets us nowhere and only poisons ourselves.
The last week was the hardest.
I found out that my cancer has a 70-80% chance of returning. Most likely in the next 3 years.
And second time round the prognosis does not look good…
It’s like I’ve come full circle again and I’m back at February 5th, fighting for my life again.
And so begins a new era. I am determined for new health.
I am going to relish the hibernation of winter…
…draw and explore, paint and create and drink tea and laugh. Determined to become active again, dance, play, meditate and get singing lessons (yes big call for me!). Try out this whole vegan thing (another huge task…)
And I’m going to hope for a new spring. Come hoping with me.