Photo: Kyle Graham
2016. Well, fuck.
I should have taken the hint when on the second day of the year (2016) I pulled out my back. Apparently the highly laborious activity of pouring a glass of water from the Brita filter in the fridge was just too strenuous for my body, and lo, I was bedridden for almost three weeks. I, miserable yet determined, took it in stride, making good use of the abundance of time on my hands. I prepared myself for a wonderful year to come. Ha. It’s been a totally shit year to say the least.
I’ve started journaling recently, for therapeutic reasons, and thought to write a little blurb - knowing me this may take 300 pages. Just kidding. Probably about 30. Also, a joke. Tough crowd. I may or may not end up sharing this – if you are reading this, then I must have had a spontaneous burst of bravery – but I did want to take an opportunity to write for those of you who have wondered why I have been MIA for so long. Truly, it’s not you, it’s me.
When it comes to expressing myself when all is not well, I’m not so well equipped. I have a prevailing tendency to share stories only when the rougher times are over and I can wrap it up nicely, only delivering when packaged. It’s not a brilliant system, I know, and goes against any advice that I would give another. So I’m putting my actions where my mouth is. Hence the posting of this. Everyone has a chapter they don’t read out loud. But I’d rather it not be an entire book.
I’m still somewhat submerged in the water, in the midst of my healing process, and not ready to enter the world just yet. I promise it’s not just me bitching and moaning about what a horrible year it’s been. I’ll just mention the exceptionally shitty moments ;)
I’ve been ill for the past few months, since mid October, in and out of the hospital, and going from one doctor to another. It’s been a wild ride, on a roller coaster with deep dives, where I’ve been becoming actively familiar with new lows. I’d rather not bore you with the exact details, especially since I am unable to pin it all onto a single label. A lot of ingredients make up my symptom salad. It’s a large bowl filled with relentless pain, anxiety, grief, nausea, and panic attacks with a pinch of fear - just to name a few. Et voila! A recipe for disaster. It doesn’t taste good, I can tell you that much.
For over three and half months I was almost entirely bedridden. I felt sick, weak, and nauseous constantly, with incredible pain in my chest and digestive organs. I hardly ate due to pain levels and loss of appetite. Suffering from anxiety and panic attacks, my mind became a minefield, constantly anticipating the next explosion. And consequently I went through periods of perpetual sleep deprivation, and if I would be lucky enough to catch a couple of hours of shut eye to flee reality, I sometimes doubted if I would wake up.
Various doctors and specialists have differing views and opinions, many tests are still being explored, and a diagnosis can be anywhere from severe digestive conditions, to nerve damage, to hyperthyroidism and autoimmune diseases, or a combination of a few such issues. I also did have a stomach parasite, which I eventually got rid of with antibiotics, that probably was a dedicated contributor to my symptoms. Ultimately, the one thing that I do know is that it’s been the scariest and most painful experience of my life - that rudely arrived at a mentally and emotionally turbulent time. C’est la vie.
It was the beginning of March when my grandparents were packing up the house that they were renting on Bowen Island - and that my parents would be moving into - to go off to Kingston, Jamaica for a two and a half month contract. Joan had a bad flu that kept dragging on, obviously not ideal for travelling, but of course in her typical manner she was unfazed. And off they went. It wasn’t the usual hard goodbyes as they had planned to come back to visit in May, before going to their home destination in Denmark.
While they were away, Joan’s condition became more and more worrisome as her health was declining, long outliving a regular flu. Having had Hepatitis A many years prior in Burkina Faso, thus being well familiar with the symptoms, she thought she was going through round two, that she had seemingly contracted in East Timor during Guus’s previous contract a few months earlier. We spoke a few times through Skype, and hearing about her deteriorating condition, worries were continually triggered on our end.
Of course we knew that she was sick, and the root cause was still shrouded in mystery, but it wasn’t until they came to visit that May, that I was harshly confronted with the reality. They were staying in a friends’ guest house by the beach where we went to visit them. The moment I saw her, I truly realized that she was not okay. Really not okay. My strong, bright Viking oma looked old, frail, and about fifteen kilos lighter. And unnaturally yellow. I truly don’t have the words to describe what a shock it was to see her that way, the visit went by in a bit of a blur, as I kept on trying to blink back the teary glaze over my eyes. I made it all the way into the car and out of the driveway before the dam burst.
The next few months, as the process went on from afar, I felt like I was holding my breath. The couple of times when she was well enough to speak, it never failed to amaze me how positive and accepting one could be. It’s really fucking inspiring to say the least. To be honest, as time went on I think what scared me even more was the effects on my grandfather. If you know Guus, you know that he is nothing but a strong character. I don’t ever remember him doubting himself, life, or anything really. So hearing his worried voice and seeing his tear stained face through updates over Skype, made it feel all the more real, and all the more devastating.
We eventually got the news, confirming our worst fears. Cancer. And a rare fucking cancer at that. With a very, and I mean extremely, low survival rate.
I was floored. It’s like the snow globe that I was living in broke - not that the globe was anything close to perfect - but in hindsight it looks a lot closer to. I don’t know where I got the notion that this would never happen in my family. I never really before thought about how lucky I was to have gone through life relatively grief free, in these terms at least. Growing up, I was even surrounded by friends who seemed much the same. No close deaths, no huge family illnesses. Nobody’s parents were even divorced!
Finally, with divine guidance, Joan had her surgery. Removing the entire right, and twenty-five percent of the left, side of her liver, as well as the gallbladder and the tumours in the gallbladder ducts. It was a success. We could all exhale. And after a seemingly instantaneous recovery, they were back at it. So much so, that we all, I believe, realized that our emotions hadn’t quite caught up to the current reality. While we were still coming to terms with everything that had happened, it was a stark contrast to hear that they were busy traveling, seeing friends, and jumping back into their wonderful life with energy and enthusiasm - what cancer?!
Joan came for a short, but oh so sweet, visit right at the beginning of December. Just by seeing her beautiful, vivacious, healthy self we were able to actually ‘see’ that she is not just okay, but thriving. It was wonderful. Malene got to hug her mama. And I constantly felt the need to stay close to her, hug her, and smell her - one of the best smells in the world, the smell of childhood, comfort, and oma,
Oh, and did I mention that right on the heels of Joan’s surgery, Malene had her fibroid embolization, a generally minor procedure to cut off the blood supply to her uterine fibroid. This ended up being quite a bit more intense than previously envisioned, and was followed by a couple of weeks of bedrest to recover. As the doctors neglected to mention that one needs to take blood thinners when they are on bedrest, it resulted in a blood clot in her lung.
Witnessing her going through such a tough recovery and then bearing the pain of the blood clot, was… Well, it scared the shit out of me. Plus, this was not just bad news, but hit closer to home as my great grandmother died of a blood clot - at the exact same age.
Nevertheless she recovered beautifully. And just because life can be so kind like that, after watching her mother go through cancer, promptly followed by her own health crisis, she was rewarded with holding her daughter’s hysterical hand, as I started rolling off the mountain. Mama, if you’re reading this, I’m so sorry. And I love you so much, and I am SO grateful to you. You are the strongest woman I know.
Initially I came to live here, on Bowen Island, with my parents, for just a ‘little while’. It’s been over a year.
I have a cyst in my right wrist, due to a long ago fracture from a fall during my dance education, that has been a pain in my a - , I mean wrist, ever since. After years of serving in restaurants and practicing and teaching yoga, it’s definitely become worse for wear. It’s also one of the reasons I couldn’t get back to work full time. The medical system hasn’t done much to renew my faith with my experiences, and it’s been a looooong ride. And my first appointment with the surgeon isn’t until the end of March. This has been a big stress in my life. I thought it was ‘the worst’. And all of a sudden when things are a hell of a lot worse, as they are now, it really doesn’t seem so bad. Something that was always lingering in my mind has been completely absent for the past few months. I feel almost nostalgic, reminiscing the days when my screwed up wrist was my greatest concern.
You know that quote from Murakami, “Pain is inevitable, suffering is optional”? Well, while the logical side of my mind sees the truth in that statement, practically the execution is a complete and utter bitch. One miserable night (of many) as I was sitting on the bathroom floor, my body contorted in pain, my consciousness plays a game of tug-o-war. I go from being in control, staying calm, strong, and practising my deep yogic breathing - I’m in fierce warrior mode. My Viking ancestors would be proud.
And then, like someone turned the heat way up, the piercing sensations rise up a few notches, and I begin to slip. I suffer. I’m desperate to get out. Run away. I howl in agony - unlike my normal silent suffering self - the only sounds exiting my mouth are unintelligible “why”s and clear “fuuuuuuuuck”s. I start to plead, pray, and beg to God, my mother, myself.
I know I’m not helping myself, and those nasty little destructive ‘worst case scenario’ thoughts creep into my mind, until even my inner monologue is tired of hearing my shit. I continue the journey into unfamiliar territory and reach the point where I no longer feel safe. The wee lizard at the base of my skull begins to hiss, and sounds off the alarms. Fight. Flight. Freeze. And boom, I’ve just entered panic attack terrain. The final catalyst, where I am completely unable to pretend to keep it together for one more second.
And then the kind voice over my left shoulder reminds me that I’m still here, still breathing - however shallow and laboured it may be - and I have the ability to disentangle myself from the sticky grip of fear. And from that point I can choose to step away from acting as character in the novel - not one I’d like to read anytime soon at that - and step into the role of narrator. I observe. And I begin to rewrite the dialogue.
Easier fucking said than done. But nobody said it would be easy, right?
Rewind a few months to early/mid august and I was in the ER for a very unglamorous situation - constipation. For TEN days. I was literally full of shit. You know things are rough when the X-ray technician guy says “WOW, you must be reaaaally uncomfortable,” as he looks at a picture of your bowels. Yes, X-ray technician guy, yes, it is.
Anyhow this was pretty quickly resolved after receiving some gross salt water solution to drink, all throughout the day, and night! Soon enough, which didn’t actually seem all that soon at the time, all was on its merry way. It wasn’t until the next day that my mum received an e-mail from a close friend, saying that her eight year old daughter, Sophia, was also in the hospital that very same day. For, you guessed it, constipation.
We thought ‘haha, what a funny coincidence.’ But there was absolutely nothing funny about it, as it turned out that her daughter had cancer. It was the size of her entire liver and had also spread to her heart.
About 10 days later she was sent home under palliative care. And 4 weeks after that, she passed on.
Sitting in the little Greek Orthodox church at her funeral, looking at the small white coffin up at the front, I felt the already loose knots, from the added stress of the months before, holding any sense of normalcy and security that I had left, begin to unravel.
And you know what happened next - the shit covered fan switched to full speed.
And so when I got out of the shower that morning in mid October - when my health began to descend down a steep, slippery slope - and was hit with a stabbing pain behind my right shoulder blade, I was fairly certain that I had a clear idea of what was going on. As it was the exact same spot where my mama had her pain, the most probable option to me was a blood clot. Or cancer.
For the first time in my life I was wrong.
Kidding. It was the second. Ha. Anyhow, I may not have found out exactly what is going on, but I do know that it’s neither a blood clot, nor cancer. Trust me, I asked.
It was about a month ago when I was at my appointment with my gastroenterologist when he asked me if I’d lost any weight. I right away replied that I wasn’t really sure… Maybe a couple of kilos. I hadn’t really thought about it. So when I came home, I thought it might be a good idea to step on a scale. It was not in fact a ‘good idea’. I stood still in shock and horror for a few minutes, not believing what I was seeing… I’d lost about 20kg, a solid third of my entire body mass. In terms of wake up calls or cold slaps in the face, for me, as I stood sobbing on the scale, this was it. So maybe it was a ‘good idea’ after all.
It’s been a mission for me since to come back to my body, as I felt myself starting to check out for a while. And not just feeding her, but being present, grounded. To work with her, instead of against. To accept things as they are - weak, stiff limbs, bloated belly, and all - and to do all that I can to help - one bite and kind thought at a time.
A lot comes up and out during the down days. Unresolved things from the past, hidden fears, but also those profound understandings and realizations that are just pure, solid gold. They come, seemingly out of nowhere, and it’s awe-inspiring. But I always wonder, how do you take those profound insights and apply them to your life? It’s so easy to forget, and go on in your mechanical, habitual ways when things normalize and you get caught up in the hustle of everyday life once again. I’ve learned that just like everything else, it’s a practice, and the magical ingredient is time.
And if there is anything that I’ve had it’s time. And I’ve been practicing.
A beautiful thing in times of hurt, or distress, or dis-ease, is the shift in perspective. Things look different from down below, whether you’re on the bathroom floor or on the stone cold ground of rock bottom. All of a sudden what you once thought of as “problems” don’t look so very bad, and the simple pleasures that you are surrounded by everyday look like the creme de la creme of life.
Goals and visions for the future change. What you value changes. You change. Suddenly the ones who truly inspire are the beautiful individuals around me who have gone through their harsh and heavy journeys and come out the other end with kindness and compassion. I’m infinitely in awe by all of you.
Compassion has been a prominent theme. My full heart feels raw and unfiltered. Discerning the empathetic lines to not take on what is not mine to carry, for you can’t suffer your way through someone else’s pain. Sometimes I see that line, sometimes I don’t.
Buddha said, well Google said that Buddha said, “If your compassion does not include yourself, it is incomplete.” We all, I think, have tendencies towards self cruelty. Things that we would never say to another, to yourself it’s fair game. Tapping into that kind of holistic compassion led me to forgiveness. Where for me, I could begin to forgive myself for not knowing what I didn't before I learned it.
Everything is temporary. Impermanence is the most sure thing in existence. What comes up, must come down. The wheel keeps turning. So why is it so frustratingly hard to let go? Why is it my first instinct to run, hide, kick, and scream, trying desperately to hold on to the status quo?
I had to take a little closer look at the process of the phoenix, as I’m pretty sure what I had envisioned was far too romantic. I always just pictured the phoenix rising. I forgot about the whole burning part. And there’s really no stopping the fires of transformation, once they’ve been lit. It’s through the burning that I’ve learned to let go, and trust the flow. I’ll admit it’s the harder route, but it does do the job. And anything short of complete surrender only prolongs the burn.
At this moment, I take things one day at a time. My days have became rather uneventful, mostly at home, close to bed, feeding myself constantly. No matter how much it hurts, or how swollen my esophagus is, I’m getting food down. Smoothies, mashed avocados, baby food basically. And then to comfort and help along my uncomfortably bloated belly, I stand up and do my ‘step touch, step touch’ digestion dance - picture an exotic fusion of moves that you would see on the dance floors of a grade 7 graduation and a nursing home combined. That professional dance education is really paying off.
Some days are better than others. Sometimes I just need to sit and breathe through the excruciating pain, sometimes, when it’s more of a dull ache, I need to indulge in outright, unapologetic escapism through Netflix - or the local library’s historical romance novel collection (and ponder thought provoking questions, such as “can I still be considered a feminist while reading these?”) - and then sometimes I write in my journal, and take advantage of the time for my soul’s work.
There are still plenty of ups and downs, but, hey, I’m a work in progress. And while I am currently under construction - through hermit mode I rebuild - I thank you for your patience.
Much love, always,