The Myth of Positivity
Be positive. Keep faith. Have hope. How many times I’ve heard these two-word sentences. Just a simple verb and noun structure form sentences that feel far less informed than just some innocent sounding advice. Add conjunctions and a short statement of outcome and you wind up with a head full of false promises: be positive and you’re going to get well; keep faith and god will hear you; have hope and you’ll be positive and have faith in your imminent improvement. Conceptually impossible for my mind.
Yet cancer can separate the strongest willed from their confidence. Just as ending a catty comment in the swish of an arm ending with a “snap.” Hope, faith, and positivity succumb under the weight of fear, uncertainty, and doubt when one receives a diagnosis metastatic cancer with death as a prognosis. Take that FUD and pour it over a bull elephant’s excrement pile and top it off with a huge stress ball-like, bright red dye #2 colored maraschino cherry, glowing atop a stinking pile of shit. Now you haven’t an ants chance of saying “hi” to an elephant without getting stepped on and perhaps losing your short, little life.
What’s Inside Your Pandora’s Box?
Hope behaves as a very paradoxical philosophical idea, at least to my mind and especially as I embark on my fifth year as cancer thriver. If you’re wondering how or why hope has had any bearing on my beating the statistics so far? Pretty simple: I’m afraid not to have hope or I may regret not utilizing a tool entirely in my control. Honestly without hope, I’d have little to cling to for safety. I’d drown in stress filled waters and get swallowed whole by my cancer.
The knowledge of hope itself let out of a metastatic prison as a long term death row inmate. I wonder if they all look at each other, fresh out of solitary, “hey,…lookin good! How are you?” Of course, the outcome indeed may be descending upon us as we write and read. Pandora’s box (or urn) let go with the worlds evils on human kind by Prometheus, the lid shut by his brother Epimetheus. This action trapped hope inside before it could escape anyone’s understanding. Hope in this sense acts as a cynical remainder of a need to live under false pretenses. Hope, in truth then is, “the most evil of evils because it prolongs man’s torment.” (Nietzsche, Frederick, Human All too Human)
I’m uncertain if I buy into this long-held perspective of hope as part of optimism or the philosophical paradox of hope as an evil unto itself teasing us with false promises. At times I hang onto it, embarrassed since in my former business consulting career I advised Fortune 500 company executives that, “hope is not a strategy.” This is before I left the corporate world and entered the strange zombie land as others on the cancer bus, traveling together singing kumbyah and giving one another kudos for having hope.
My Hope in a Box
I do have a soft spot for old Nietzsche, the anti-feminist who feminists love to hate. But, boxes, especially antiques, of sizes fascinate me: from the wee tiny cute Limoges boxes to large jewelry boxes built by artisans from the finest highly polished wood money can buy. And little Metastatic me, with my paltry unenviable anemic collection of about 15 or so boxes. They’re really beautiful glowing candy dish colored things imbued with burgundy red, champagne pink, light pollution black. Yet the ones I own spark a certain pleasure in looking at them and placing things of meaning to me inside for safe keeping. It’s my way of holding onto the thought that there’s value to my life. Oddly I get very happy when I can add a prized find to my growing menagerie.
One such box, an Italian decoupaged keepsake garden-variety, a hinged oval mishmash of a thing, touched my heart. The cover attracted my eye with its cut out of a bird that appears like Jonathan Livingston Seagull. It’s gliding high over the ocean. The picture is enhanced and surrounded by typical gold gilt that Italian artisans used not with any economy on these boxes.
Purchased from an estate sale, imagine my delight when upon lifting the lid to give it a quick wipe down with a damp cloth, inside taped to the bottom I found an old Chinese proverb, once baked inside a fortune cookie. It’s not so much a fortune, but a meditation on happiness. The little piece of white paper with its ubiquitous blue printed Helvetica, sans serif typeface reads:
Happiness is someone to love, something to do, and something to hope for,“ Chinese Proverb.
See main blog photo for this post of the top and inside of said box
One really can’t argue with such a simple, yet profound list, like the ingredients in the recipe for achieving inner peace and harmony. I’m not even certain that it’s an ancient proverb at all. The quote‘s been attributed to both Alexander Chalmers and Emmanuel Kant.
Maybe they both went out for Chinese one night and received a three cornered hat shaped fortune cookie, found the same proverb, then read and stored it in their respective memories. They each forgot all about it until the day they committed it to paper and credited themselves with the secret to happiness. A reverse Pandora story. Doubtful they christened the desert portion of a multi course Asian feast with a crunchy envelope, baked with a paper message sent from the ancient wisdom of an anonymous Chinese philosopher. Doubtful.
Stress, A Love Letter
About three weeks ago my faith and hope that C, my partner of 12 years, the man who once held my hand as we walked out in public and people would turn to look at who we might be. We weren’t the most beautiful or the best dressed. But of us unusual, confident, and each with our respective uniquely charismatic personalities. We laughed a lot, we clearly exuded sexual energy, and we were into each other. I can say after all this time I don’t think of anyone else in that way. Never.
I miss not only our connection and intimacy but I miss C, and he’s not been around for a long time now. So about three weeks ago I threw down the ultimatum, because I knew the stress created by being his care giver and also holding onto the fact that he cared enough to make sure that financially I didn’t need to stress about rent or eating and he also helped me get my little vintage online business stocked so I had some meaning in my day. I don’t feel like a completely unproductive sod.
Hope begets stress in my above scenario. But if you want a little hope, as a side note watch the film Bohemian Rhapsody. It covers a period of the 1970s the early 80s through his death in the early 90s when Freddie Mercury, that staccato 10 octave range voice only given to very few by the heavens blessed us with equanimity and rock music. His voice alone turned a super cheesy movie, “Flash Gordon,” into the vehicle for a Brian May’s guitar melodies and Mercury’s gracefully sung lyrics, “can anybody find me…somebody to love?” Freddie left us too soon. Too soon, as I felt C slip away farther from my love and taking my hope by replacing it with stress.
A Text Never Sent
After two weeks I finally received a response from C’s psychiatrist as I left him a message to please refill his medication. If C went completely off of it, he’d turn very mean as he went through the withdrawals, and I was already starting to feel like my cancer was reacting to the thoughts that continued to increase in velocity that I may have to leave the security of my home and the hope I had for C’s wellness.
Dr. Seventyfive (sparing you my real nickname for his ex psychiatrist) sent me a text, after calling too early in the morning or inevitability at the worst possible times. You’d think after three plus years of my asking him to communicate via SMS with me due to my weird and hectic cancer-focused life he might get it. He asked if he should keep trying to reach either one of us or just give up. He’d given up on C long ago in my opinion, and I constructed a lengthy, direct response with clear annoyance showing in each word. For your reading pleasure here’s the response in full. Spoiler alert: I never sent it.
“I’m sorry; I’ve been focused on my cancer treatments and my own health. I cannot continue to try to get in touch during crises to no effect. I appreciate your assistance but he was worsening and it seems futile. My life for over four years since my cancer diagnosis has had less and less hope of his recovery and more and more stress in struggling to keep C fed, hydrated, calm, all the while fighting an uphill battle having him on the admittedly wrong medication? The man has slept the for half of 2018 and 2019. It was downright irresponsible for you to not insist he bring me along to several appointments in all that time so the full picture of his state of mind and the precipitates of his illness could be ascertained. Only then could you have formed an educated opinion for a proper treatment plan to be established and so he could be on a path to wellness? It makes no sense. By the way you should have payment in full since I dropped your cashiers check in the mail early this week.”
Ilene’s unsent message
Frustrated, upset, angry, losing hope, and stressing beyond belief, I was determined to see C recover. Either find a way to help him get better, and quickly, or find a way to situate myself in a far less stressful environment. However, the stressors associated with moving out and moving on might indeed lead to my untimely death from waking up the sleeper cancer cells awaiting a cortisol party. They’d disco twirl through my organs and systems, having a hormone punch drunk dance party in my body.
To prove my point, take five minutes and then do the math to add up the ratings of 43 items in the Holmes Rahe Life Stress Inventory. I’m sure that you’d not have the high score you’ll find you’ve got if you’d done the same inventory prior to any cancer diagnosis.
It’s odd but hope does not negate any of the items in this globally recognized scale. There’s no antidote once these life events occur except time – and people who have metastatic cancer do not have the luxury of time. So click the link – Stress Inventory Score List Chart for Holmes -Rahe Stress Inventory – and if you don’t feel like it here’s a picture of the test, which actually provides useful to understand why stress, both good and bad, contribute to a person’s incidence of cancer.
Well, I’m happy to report a man I’d known and loved is coming back to the surface and I’m cautiously hopeful but still stressed that something may trip his switch. But for now, he’s a lot better and on the road to recovery. I nearly had to move away from him. As stressors go, you know next to death, divorce causes a huge amount of ugly pain and uncertainty. I wouldn’t have a chance of making it with those ensuing events transpiring after my life as I know it falling to pieces and possibly taking me down with it. To reference the beginning of this circuitous discussion my abilities to “Be positive. Keep faith.” and “Have hope,” would weaken as would my health.
The rest of my unsent text to the psychiatrist after trying to send it for 45 minutes and I finally cut it out of the text application and pasted it into a note. Some things are better left unsaid to the potential recipient, this being one of them:
“Sorry for the length of this text but I’m in and out of Stanford today and have a cancer support group today and I cannot take a call. Please consider what I’m saying. Dr. XXX, I don’t think a specialist in adolescent psychiatry as yourself should have been seeing a 55 year old man with little to no improvement over three years in treatment. How terribly irresponsible it was to not look for a medication that would work or another of the newer more novel approaches – like TMS or other off label medication based therapies. You never called me to review his condition or ask any questions. I don’t need to know why, but I did feel this needed to be communicated to you so I could clear it from my mind and move on from the darkest days of my entire life.”
Maybe a tiny bit dramatic? However, his new psychiatrist, who specializes in OCD, anxiety and depression, stabilized him in less than 10 days. We even have a packet to read on nutrition and food interactions with his new treatment protocol. The doctor listened to my email plea, had his receptionist call me the next day, and we had an appointment within 24 hours. Five days later I had 60-70% of my partner back though with minor setbacks he’s trying hard to continue to gain control of his life again. Very difficult to come out of a fog and see the light again. I’m not sorry for possibly giving up a little life time due to the stress of the fights that transpired to get him in my car to the first appointment. He went to the second one on his own although I had to make it for him even with his idle threats. He made a third appointment before leaving the office on his own.
And that is my proof, friends who managed to follow me all the way past Go and collect $200 on the boardwalk, to understand the supporting actions and the environment in which I live towards a truncated yet hopeful future. The one where I move to the country with my partner. The one where he takes me to treatment like he took me to chemotherapy today, and the one in which my stress decreases in proportion to my rise in hope or seeing year five post-cancer diagnosis.
My fourth cancerversary was March 25th, but I didn’t marry the cancer. Cancer does it’s best to have death come to our wedding and walk me down the aisle by separating me from Craig, and I do not believe in polyamory or open marriages.
Even with a 25% chance of living five years past diagnosis I think I might have a great chance now of making it.
Hope is a strategy.