‘you need to come here now. Barbara’s not doing well.’
this was a message from my brother on august 10, 2018. i read it as soon as i got up while i was on vacation. Barbara was dying and i went on vacation. it’s silly now, i know, but back then, it made sense. my mom said i should go. she said there was nothing i could do there so i might as well go and try and enjoy myself. yeah right. enjoy myself while my sister was living out her last days. i spent most of that time crying, shaking, not sleeping. i went to the emergency room four days in a row because of an acute case of hives.
i was on a plane 15 hours after i read my brother’s message.
so why did i go on vacation even though i knew that Barbara had up to 3 months to live?
that’s simple. because i was in denial.
i’ve been dreading this post. it has been keeping me up at night. i’m not usually a procrastinator but for some reason i couldn’t get myself in front of the computer to write even though i knew that this needed to be my next post. i guess because this stage is so inconspicuously harmful i kept shoving it down willfully all the while knowing far too well how pushed down feelings end up eventually.
so here it goes, i guess.
out of all the grief stages, denial is the one that has caused me the most trouble. maybe because it was first put into motion at Barbara’s diagnosis, so that would make it, oh, more than ten years ago. and it’s beginning were surreptitious, sneaky. i was in denial of being in denial.
in terms of denial’s timeline, it’s birthdate if you will, i’ve only come to understand it recently that it began then and not after her death. i am not denying her death. i never did because i was there, i saw her die. sure, i’ve had the fleeting thought ‘i can’t believe she’s dead’ but that one carries little weight and, anyway, it was just something people said, or in my case, thought.
denying the severity of her disease, that’s what caused the most problems for me. denying the fact that her disease was terminal, that’s what did me in.
there are several reasons for this, i think. for one thing, Barbara didn’t want to talk about the gravitas of her disease. we weren’t allowed to discuss anything other than her treatment, her recovery. and even then, it was going to be on her terms which meant that we were only allowed to enforce positive affirmations. i get that. the main thing that i overlooked, or possibly ignored, was the void that had started to spread between Barbara and me. even though, she and i were similar, we were also very different, in particular when it came to the disease itself. the more information i wanted to have, the more she pulled away and said that i was being negative because, yes, i asked about things like prognosis, alternative treatment options, facing death. it might seem harsh but in the beginning, i knew that brain cancer is a serious illness that it will probably cause death especially since her brain cancer was inoperable. however, that thought faded into the background for reasons that i will try to explain.
as realistic as Barbara was, she didn’t really face things the same way that i did. i tend to do that in a direct, ‘off with their heads’ kind of way. i just like knowing all the facts and sometimes those facts lead to less than cheerful conclusions. Barbara felt that was me being negative. now i should maybe clarify this a bit. by european standards, i’m not negative, i’m pretty ‘normal’. by slovenian standards? super normal because slovenians aren’t exactly known for their out-of-the-blue cheerfulness like for example canadians or americans. well, maybe not new yorkers. but you know, as an example, in a slovenian restaurant, you may be greeted with a simple ‘hello’, a nod or even just a sigh. in canada, you will be greeted with ‘hi, how are you, my name is ‘so-and-so’ and i will be your server today, it’s a beautiful day, can i start you off with some drinks, our special today is … blablablabla’. that’s the difference. and honestly, neither is great but that’s how it is. of course these are extreme examples, stereotypes that, of course, do not do reality justice.
but for clarity’s sake and in this regard, Barbara was definitely canadian whereas i am, for sure, very european.
so that’s the chasm that i mean.
the thing is, i really wanted to talk about the disease itself because i was, for one, curious about all the possible options. Barbara, who was always intrinsically very hesitant to make a decision, put all her trust in her husband. we all agreed that was the best decision because we all trusted both of them. but when i tried to allude to alternative options, she immediately put up her wall and changed the subject. or she accused me of being negative. so i stopped asking which was very difficult but i did it for her sake.
unfortunately and inherently, this didn’t help ‘my sake’.
another thing that happened was that we were all told not to google things. now that was a biggie for me. see, i google everything about medicine, symptoms, etc. curiosity killed the cat? yeah. i’ve been killed many times. i can’t tell you how often i would google the simplest thing and would end up with the most horrific disease known to man. it got so far that once i actually believed that i had the plague. yeah. i’m shaking my head too.
but not googling meant even less information for me. i didn’t live in toronto, i didn’t have access to her doctor’s visits. i was completely in the dark even though i longed to know more. BUT this wasn’t about me. it was about Barbara’s recovery.
so there goes another thing under the rug. sweep, sweep.
the other ‘problem’ if i can call it that was that Barbara was doing so incredibly well. she had virtually no signs of illness. even her initial symptoms – migraines – were not an official symptom of her disease. but she insisted to get that mri. it was only the first round of treatments, the chemo, the radiation, that left her extremely weak but Barbara being Barbara, she fought through it and forced herself to take the stairs instead of the elevator. after those initial first months, she was doing well. the following mri’s showed little to no growth of her tumours, she was going to yoga classes, she was still working part-time, she was traveling (trips to south america, europe, an rv-trip across the southern united states -i KNOW, WOW right?).
so how could i possibly know how sick she really was? in my mind, she wasn’t. that whole ‘she has maybe one year left – that’s WITH treatments’ was a shadow in a box tucked away in a locked basement. and yes, that was the initial prognosis. but she lived symptom free for over five years.
and when she asked me to be her maid of honour at her wedding, you know what i said? instead of YES OF COURSE i said, ‘i don’t know, i have to ask for time off’ which i didn’t want to do because i might have gotten a solo. seriously, valentina?? i mean, if that’s not denial, i don’t know what is. i should have screamed into the phone that i would be there with bells on. however, she wasn’t really sick, and her having a big wedding was a stupid idea, anyway. yes. i said that to her. hm. maybe i was a little negative. definitely insensitive. and why was she traveling so much? she’s living as if she’s running out of time, is also something i said to her.
wake up, valentina. i wish i had said that to myself. i wish someone had slapped me, shaken me and said, wake up, your sister is dying. she IS running out of time and that’s why she’s traveling so much and that’s why she wants a big wedding. just shut the fuck up and support her.
i feel like such an asshole now when i think about that time. of course, i did go to her wedding. i am lucky to have gotten the time off. and it was a great wedding. beautiful and worth every penny. i’m sad i didn’t go to the shower. i didn’t even ask for time off. what a moron i was.
it is what it is now and there is nothing i can change about any of it. i had no real guidance. i couldn’t confide to my best friend because that was Barbara. i didn’t want people to feel sorry for me but i just wanted to vent, to talk about the disease, to talk about options, to talk about possible outcomes even if they were as ugly as they ended up being. i wanted to talk about my sister’s death, about what to expect at least.
not all cancers are a death sentence but anaplastic astrocytoma is. i wish i had tattooed that onto both of my arms so that i could have seen it every minute of every day.
i think my brain could have accepted the reality of the situation. my heart? probably not. but at least i wish i had been given the entire synopsis of what to expect even if the actual timeline couldn’t have been predicted. the phases of the disease could have been made clearer. the preparation for the worst could have been made sooner. the denial phase, which brought with it insomnia, anxiety attacks, social withdrawal, unexplained weight loss, incessant crying, constant panic … could have maybe been shortened.
denial was a silent thief who stole from me every day, little by little until there was very little of me left. at least it has been caught, dealt with and put away now. better late than never, i suppose.