Amy's Whimsical Musings
my minimalist self portrait
It’s my ten year anniversary of being diagnosed (ironically in October, Breast Cancer Awareness Month), with a Stage 3 breast cancer. Since then I’ve had more than 20 related surgeries and have lost my mom to a double whammy of colon and breast cancer. I don’t have many photos of myself from that time period, though there’s a scarf-clad me popping up in a slide during my TEDx talk, in which I discuss the healing effect of collaborative creativity.
What I do have are some practical ideas, from first-hand experience, for how we can ameliorate the experiences of those going through breast cancer. Here they are in no particular order:
How many times did I lie in a lonely hospital room or nook anticipating anesthesia or surgery or what have you and stare up at a stark, warn, glaringly white perforated ceiling? While I would like a little hygge or at least warmer lighting, I realize that most likely would not be practical in the medical environment. That being said, why not get muralists or even school children to decorate the ceilings with something beautiful, inspiring, even whimsical!? Perhaps a lovely quote in calligraffiti? The point is, it’s all about UX…the patient is probably reclining and gazing up – something we ordinarily don’t do as we go about our day. The ceiling is therefore a neglected space and a tabula rasa of aesthetic opportunity. ( here’s an intriguing article on revamping them).
I was lucky enough to have a mom who would sit with me prior to surgery and massage my aching (often cold) feet and hands whilst I fearfully awaited the procedure. I don’t think anyone would disagree that massage is an extremely beneficial practice. But for a cancer patient in particular, I think it can not only reduce stress and anxiety but also aid in circulation. If you have chemo, your veins get damaged big time. Surgeries require lots of IVs and pokes, thus necessitating good blood flow. Most hospitals are kept quite chilly – also a detriment to a successful “stick” as they say (tip: for blood draws I always ask the nurse to fill a rubber glove with warm water and place it on my arms). Why not ask professional masseurs to devote some time to providing massages to cancer patients before scheduled surgeries? Instead of participating in one of those sympathy hair shaving events (I’m not a fan), why not instead donate money to pay for the masseuse or reflexologist?
I wear makeup, as do most women I know. I’ve been sporting it to some degree since I was 13, so I kind of know what I am doing. When I lost my hair to chemotherapy, however, I realized I needed to completely rethink my routine. First off, all or most of your hair falls out- not just the ones on top of your head. This includes lashes and eyebrows (boo) as well as leg and underarm hair (yeah!). But I had never drawn on eyebrows…that was something my 90 year old grandmother did. I’d on occasion used false eyelashes though was unfamiliar at the time with lash extensions (I use silk ones now). My face got puffier with the meds, too…come to think of it, I could have used some contouring lessons. I always thought it would be neat if big department stores with glamorous makeup departments hosted events for women going through cancer, offering them custom tips to help them look the best they can. Personally, I think red lipstick can solve many problems – it certainly made me feel a bit better at the time.
Wigs are warm and often itchy, so this Hawaii girl opted for the pirate look (scarves and big hoop earrings) most of the time. But sometimes you don’t want to stick out and bring attention to your illness. Promptly after my diagnosis I hunted down a local wig shop that gave discounts to cancer patients and asked for a fitting. I must admit that a lot of the choices looked a tad Florence Henderson in Brady Bunch. I was not even 35 – I wanted long flowing locks not a nifty shag. I liked the shine and easy care of the synthetic wigs, and purchased several of varying lengths. My favourite was a cherry-cola coloured one called “Angelica” (wigs seem to have quite exotic names). While I felt blonde inside, it was fun experimenting with different shades and styles. A couple of tricks I learned: wearing a headband with the wig made it look less fake; investing in clip-on hair pieces or “falls” is a good idea for when your hair starts growing back; you can be your own one -woman Britney Spears in the Womanizer video.
Once I read somewhere that the most successful people have a “uniform” of their own creation – that is, they choose one look or item of clothing and stick to it. This consistency has a by-product – personal branding. Yet it also simplifies life in that it’s one less thing to worry about so you can go on with your creative and intellectual endeavors. I think cancer patients would benefit from tapping into their inner Steve Jobs. I personally got frustrated having to decide which garments went with which scarf or wig. It was overwhelming, and nothing felt right (mind, I am a girl who has always loved playing with fashion). At this time I decided to go with an all-black wardrobe. Black always works…it fits all occasions and looks timeless and (with some care), classy. It’s also quite slimming, so in my puffy chemo state that was a bonus. I started to only purchase new items if they were black, and piece by piece began to rid my closet of the non-noir. I suggest choosing something you love and feel comfortable in that hides perceived flaws. This could be jeans and a blazer, or an A-line skirt and sweater set, up to you. I would steer clear of the “too casual” (like yoga pants!), because you want to look like you’ve made an effort, not that you are constantly rolling out of your sick bed (even if you are). You might find, like I did, that long after the cancer experience your self-imposed uniform has become “your thing”.
Ever look at a Rothko or a Pollack and think – “that’s exactly how I feel inside!”? I think Abstract Expressionism could be really useful in helping patients articulate their pain – not just as a type of catharsis but as an actual, practical assessment. Whenever the nurse would come at me with that chart – that trajectory of emoji faces going from an arbitrary “1-10” scale I would be frustrated. I’m a fan of minimalism and simplification but this method discredits any nuance, and when it comes to pain nuance is important. Where is the pain centralized? Is it shooting or aching? Does it radiate…if so, where? Is it sharp and staccato or fuzzy and lingering?
A while back I decided to try out visualizing my migraine using my favourite drawing app, Paper 53. With just my phone and my finger I was able to make my pain as I experienced it tangible. This got me thinking that “pain drawing” would be an excellent addition to a patient’s treatment program, particularly in that it allows one to be more specific and personal without having to talk (anyone who has been hopped up on pain meds knows what I mean). Using the app with my finger is not as cumbersome as, say, a paintbrush or pen…it’s very visceral (if you recall finger-painting in Kindergarten it’s a lot like that).
Colour, too, can be so symbolic of feelings (is your pain red or black or grey, for example?). And while pain drawings could be produced spontaneously, I do think patients and their medical team could learn some conventions – like jagged lines mean sharp pain or cloudy grey bits mean a dull ache. Hospitals could take it one more step and print out the artistic pain journals as posters to decorate the (usually appallingly stark) room…patients could kick it up a notch by writing some accompanying poetry or affixing a telling title to their pain art.
I’m really not sure what kind of neural shenanigans one’s brain plays when one is on chemotherapy, but I can confirm that I had a sudden affinity – no, more like an obsession – with the scent of fresh rosemary. I’d put it all over my house in vases! The chemical smells in the the chemo lab really did me in as well, and my mind would trigger my body to start feeling sick when I got so much as near it. To combat this, I made a little potpourri pouch of Christmas-y scents to hold to my nose- cloves, cinnamon, star anise…that sort of thing. At the time I was teaching medieval history and we studied how the folks during the Black Death would insert these types of spices in the beaks of those grotesque bird-like mask things so I thought I’d give it a go. I must admit, I was worried that the experience would ruin these scents for me but no- my history with them being pleasant far surpassed any association I made with them and chemo. To this day, I burn rosemary and clove essential oils in a diffuser.
Have you ever seen Soylent Green? There’s a particular favourite scene of mine – the euthanasia scene in fact – in which the character Sol goes to the assisted suicide clinic and gets to choose his favourite colour (who likes orange?!) and music so he can live his final hours in personalized bliss. What’s really poignant, though, is that the dying room consists of giant wraparound movie screens playing a montage of the then-lost beauty of the natural world.
I always thought this was the way to go, and having my mom in hospice care at home and bedridden for her last days really made me think this could be do-able …not with wall to ceiling screens but rather with VR googles and software. How cool would this immersive experience be, in particular if you could customize it to your preferences? Think about getting to go to all the places on the globe you had never had the chance to…to hear the sounds that brought back pleasant memories, or perhaps stimulated new fantasies?
This could be an entire industry, a bit like it is in Soylent Green. If one is privileged to expire relatively peacefully at home or even in a hospital clinic, I think this would be a lovely distraction. Sign me up.
Both my mother and I have always been artsy / craftsy types and have found mental solace in the process of making something. I believe -from experience- that working on creative projects is the ultimate therapy. In fact, it’s when I’m physically or emotionally most messed up that I seem to be my most creative and artistically productive.
But this shouldn’t be confined to solitary endeavors…making things with someone else, either with them outright or along side of them as in an art studio kind of vibe, results in some powerful healing. One of the ways you can do this digitally is by starting a creative volley (I mention more about this in my book with Dan Ryder, Intention: Critical Creativity in the Classroom). Do an exquisite corpse poem, perhaps, or a doodle challenge. Exchange recipes and record your process and review…make a podcast with a friend…join a creative community like #ds106 or Hitrecord.org. You’ll find it’s a much better support group than ones centered around your affliction. Moreover, the fact that you are creating gives you a sense of power over the destruction (uncontrolled) that is happening to your physical self.
here’s me with 3 wigs! We named the characters Bambi, Vicki, and Angelica after the wigs
When I got my cancer diagnosis I had a daughter that had just turned 2 and a full-time teaching job at an all-girls’ school (middle school at the time). I was fortunate that I was still able to work as much as possible, having chemo on Fridays and missing Mondays to be sick…still able to run out of the room to throw up in the ladies room…able to schedule my daily radiation for the summer and find a great substitute for the surgery dates. Most importantly, I felt free to be honest with my employer and my colleagues supported me so much in everything from donating their unused vacation days to me to bringing homemade meals to my family.
I’ve grown to think that two of the most essential tools (I hesitate to say weapons as I dislike the “war on cancer” / “fight like a warrior” rhetoric) to have in one’s metaphorical tool belt are
I think old sixties rom-coms and the entire Sex and the City series got me through the worst bits, but persisting in my work…feeling like I still mattered, and that my intellect wasn’t failing me…that was so crucial in avoiding what my friend deemed “the Dark Side”. Don’t get me wrong, I spent nights sobbing and days medicating myself into oblivion to stop the pain. Yes I felt sorry for myself but soon realized there was no point…that the only thing one can do is to keep doing..keep going…keep living. Not all cancer patients will be able to maintain their jobs or workload, but finding some way to give back to society … some intellectual or creative gift …some legacy, if you will, is a game-changer. It can be as small as making an exquisite meal or untangling your daughter’s hair successfully. It can be, perhaps, more grand – like starting a podcast or writing a book. Or it can be something in the middle- just making it through the day touching even just one person’s life in some small way.
I once read a story about a man who was contemplating suicide, but made a deal with himself that if one stranger would smile at him during the day he wouldn’t go through with it. I think of that often, and wonder if even a smile or nod or kind word could make a difference in someone’s life. And those things aren’t difficult even if you are in pain or feeling hopeless.
I speak of this often in my talks, including my new Tedx talk about Lessons from Artists – there is a Japanese aesthetic of wabi-sabi...the beauty of the impermanent and imperfect. The samurai who were always on the brink of death, associated themselves with the ephemeral cherry blossoms (sakura) precisely because of this. Within the aesthetic is an artistic practice called kintsugi or kintsukuroi – filling the cracks of broken pottery to accentuate their history and scars rather than disguising them.
I have a wealth of scars from multiple surgeries and complications. It’s difficult to come to grips with them except for the fact that I am still here, and they are a testament to my unique journey and ability to carry on. Every time I start to wallow in self pity or lament my old body I think of kintsukuroi and wonder how I can make the flaws beneficial.
Perhaps that is what this blog post is about..making something good from something horrid.
I don’t know if any of these ideas may be considered or even adopted by the powers that be, and I only speak from personal experience.
The next time you think about shaving your head “in solidarity” (a practice which disturbs me a bit), or wearing pink for October (pink is great ALL the time, btw), please consider these 10 alternative ideas. And if you or a family member are dealing with cancer, I hope some of these thoughts might help in some little way.
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