Every seriously ill person needs to develop a style for their illness
In preparation for an upcoming presentation on the value of stories in medicine, I’ve been doing lots of reading. I came across this quote from writer, Anatole Broyard, literary critic and editor for The New York Times, quoted in his book Intoxicated By My Illness, which he wrote during the final months of his life after he was diagnosed with prostate cancer.
Every seriously ill person needs to develop a style for his illness
I’ve been thinking a lot about it and how important it is when serious illness takes so much from us to be able to reclaim ownership over our disease and our lives. I have the privilege each week when I put together the round-up of blogs of seeing a wide variety of styles. From the curmudgeonly to the sarcastic, from the faith-filled to the vocal activist – each style uniquely and individually you.
So my question today is, what is your particular style of dealing with your illness? Is it something that came naturally to you, or was it something you had to work to develop? How has that style helped you cope on a day-to-day basis.
I can’t wait to read your responses!
It’s such a good point! My style, I think, has been to take each day as it comes, which means not looking back and not looking forward. I developed a routine after chemo round 1, finding things that worked (and things that didn’t) and then stuck to it – I do my crying in my house, and with my closest friends, and for everything else there is a choice of 14 wigs and one smile. I know what food I’m going to eat and when during the bad week that follows treatment, and after that I try to get back to work as quickly as possible. Day by day, it all passes and I can stay positive. The Pollyanna approach works for me. Thanks for your blog, there’s always something interesting to find.
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Hi Chloë, It’s great to hear from you and thanks for sharing your style. I’ve added your blog to this list of breast cancer blogs http://list.ly/i/924458 and i look forward to reading it regularly.. Do let me know if you are on Twitter so i can give your blog a shout-out there. Wishing you healing on your journey with breast cancer.
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Wow, how interesting! Marie, you always find the best stuff to share. Looking back, I guess more than anything my style was to be a teachable moment. When I was diagnosed with DCIS (ductal carcinoma in situ) I had never even heard of it and I’m fairly well educated, so I figured others must be in the same ignorant boat. Being a journalism school graduate and former technical writer I told my local paper they should do an article about it. Instead they invited me to do a series of essays (I had written one to try to get into a magazine contest- it didn’t win) and as they piled up I realized I had the makings of a book. I sort of fell into it because I never pictured myself doing that, but women are still finding it and letting me know it helped them. Six-plus years out from diagnosis I wish more had changed in terms of knowing which DCIS is likely to turn aggressive, but the emotional terrain remains the same. Even when you’re diagnosed at a very early stage, the decisions can feel overwhelming.
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I love that phrase “a teachable moment” Jackie. And to expand on that..the learning goes on long after the moment(s) of diagnosis and treatment has passed
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Thought provoking question Marie. Thanks for asking it. My style has always been to find out as much information I can about the disease. ( I guess it comes from my engineering background.) The more I know, the more comfortable I feel being prepared for any situation that comes my way. I do a lot of Pros/cons when deciding on a treatment and I do that for other things in my life too. Sometimes you just have to do what you have to do – even if it is difficult and i applied that to my disease too. Seems like my style of dealing with ovarian cancer came naturally.
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Appreciate the comment Dee – interesting that both you and Jackie called on your training to inform your particular styles.
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If strategic denial is a style, then I’m very stylish. I’m blessed — and I’m being only slightly snarkastic because there have been blessings — with fibromyalgia. During the decades since diagnosis (dx’d in 1986) I’ve had periods of being completely bedridden as well as (mostly) ambulatory with pain and/or deep fatigue.
Initially, I treated this chronic illness as a significant feature of identity that ended up shaping, if not defining, what I did or didn’t do in all aspects of my life. After a decade of doing that, I shifted to viewing it as less significant, even though the physical realities of fibro remained the same.
I’d love to claim that as an act of consciousness/intentionality, I decided to disempower my illness, but it sort of just happened. I think I got, as we say in 12 Step recovery, “sick and tired of being sick and tired.” And so, I did what I could to reduce triggers (e.g., went gluten free, eliminated aspartame, cleaned out my friendship network). I became more proactive about stuff like exercise and napping.
Eventually I realized that strategic self-delusion, aka denial, was also helpful. I’m still working this through but my Denial Style involves figuring out when disclosure to self and others is helpful and when it serves as a trigger. What I am not in denial about is treatment for fibromyalgia. There isn’t any.
Am I making any sense? If not, let’s blame it on today’s “fibro fog.” No denying that!
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Ah Meredith, try as I might, I just can”t come up with a suitably stylish answer to your wonderful comment. All I can think to say, is your style is unique and individual and quite wonderful!
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What a great thought! Well yes, i think i did. I’ve become snarkier, more self indulgent and I’ve tried to remove “should” and “ought” from my vocabulary. I try to be as non judgmental as i can be, and I stopped dying my hair! I know some of this sounds silly, but my style is to enjoy my life as much as i can and forever long i have. And to be happy.
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Oh, and during chemo and rads, i tried to relax as much as possible. When i had problems, i asked and researched, but for the most part i relaxed. Lots of mediation and chocolate.
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Meditation and chocolate – what style Elaine 🙂
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When it came to treatment, my style was to research as much information as I needed to be secure in my decisions. As for the emotional component of cancer, my style is to actively seek out healing. I embraced my vulnerability and looked for support wherever I could find it, testing out many different resources to find what worked for me. The support I found imbued me with an overwhelming desire to give back in gratitude – which led to more healing.
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I love how you have been giving back ever since Debbie. You are such an inspiration
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I deal naturally with my serious illness of stage 4 breast cancer. I see each day as a gift and each day without pain an even greater opportunity to express my joy. I am faith-filled and believe in the power of prayer to heal and sustain me. Heal may not mean recovery, but it does bring comfort and hope that I rely on for life sustenance. Thanks for this wonderful opportunity to share our thoughts. xx
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The idea of an illness style is intriguing (and now I need to read Broyard’s book!). I’ve never thought of myself as having a style when dealing with/talking about/blogging about my cancer, yet my inclination is to just put it out there, warts and all. I’m a big fan of venting, and I tend to be snarky and sarcastic in the process, thus I’m deeming my style “filterless snark.”
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Loving all your answers. I always think of your style as champagne style @pinkunderbelly Jan, I think of you as faith-filled and inspirational always
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Warrior – heroine springs to mind, and I immediately connect it to my always continuing story. I was once an aspiring actress in Hollywood of all places – long story. it is a big chunk of a past dream. I have lived on the top of a faraway mountain in Japan…..i have lived and loved life – as it came to me. With my diagnosis 13 years ago now I was given a challenge – which i readily accepted. Being this way has given myself back to me – in so many ways. So yes – the heroine in one’s life…..Why not!
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wow Pauline what an exciting way of looking things.
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This is an awesome post, Marie! [Equally amusing, I’m reading this as I’m re-building the Badassmatics website… a core component of this.]
My take is that we can either choose to define or be defined by our illness/disease [I’m a user of the word “disease”, so I’ll be using that one to convey the same meaning], and it’s of that vision that I came up with Badassmatics: a pun-riddled portmanteau of badass and asthmatic. I make the choice consciously to not use the term “asthmatic” in anything but a purely medical context: I am a person with asthma, I am not my disease–even if my asthma can be more difficult than many, that makes it even more important to not define my life by my circumstances.
The badass component? Well, that’s part of making a conscious choice to not succumb to the mould. If people with asthma around me [online usually] are choosing to be defined by their disease, that is not a trap or state of mind that I have to fall into (and it happens more often than one would think). Yeah, my lungs are messed up, but that means I can own that by continuing to live the life I’d set out to live–or, in the current state, BETTER than the one I’d set out to live. I embraced my disease in a way that I can use it to help others and motivate others to understand their disease more, but also in a way that won’t stop me from doing anything that I want to accomplish–it’s about being flexible with our circumstances but not letting our disease change the way we live our lives. As a friend [/former professor] said once, “It’s life changing, not life ending”. So yep, I’ll keep wearing my heart on my sleeve and telling people about the 10% of Canadians who live with asthma like I do, but I’ll keep sharing that message in a way that makes it clear that we are not defined by our disease or our circumstances, that education and advocacy are important, and that if we fight our circumstances with positivity rather than dejection… we can make what we want of any situation because badasses don’t play by the usual rules :]. And that can certainly be for the better!
I also have ADHD and a learning disability, which I’ve chosen to [especially with my later-than-childhood diagnosis at 22 years old!] embrace by way of “seeing life differently”–I always knew I did… Now I just have documentation affirming that ;).
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Such a fantastic comment Kerri – thank you so much for taking the time to share your style with us. You are something special – one of the best people I’ve met all year – hope we get to meet again soon.
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I hope so too, Marie!!! :] Maybe I’ll have to come to Ireland? 😉
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Ha ha this is great! I suppose my style is curmudgeonly, and I wrote a post ages ago about how I came to call myself Cancer Curmudgeon. but I also think I am many other styles too. Devil’s advocate might fit best.
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You definitely own your style!
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I love this challenge! You know what, I want to “wear” the idea of loving and living forward. Cancer is there, but it’s not what I want to talk about forever. My pleasures, and at least part of my actions (when not freaking out over scans and results) are around telling stories, and having fun, giving love, enjoying love, and doing things that scare me because hesitation isn’t worth the regret.
That’s my style. Or rather, that’s the style I aspire toward living. Mind you, I really do appreciate other people’s style, because the blogs I read in different ways reflect my own emotions – sarcastic, angry, changing, hoping, etc. And the advocacy work this group does – wow. All I can do is say I appreciate the pushing and call for better options. ~Catherine
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Love your comment Catherine
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Great post Marie – and I couldn’t agree more. From the day I started posting, I had two aims: practical content and positive thoughts. It is amazing how just by trying to find humour in unusual places and look for the brighter side of everything that has happened, I have managed to change the course of a day and positively reframe my experiences. While it was not always easy (and not always practical) to be happy all the time the fact that I was actively seeking out things to say and share that made me smile made my writing more positive and my life happier. So, by developing a style, I have shaped not just my words, but my outlook on life. Without my blog, I am not sure I would have put such a positive filter on active treatment. Thanks for sharing this thought Marie. J x
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What a wonderful post, Marie. This is also a good writing prompt that I might use for a future post. I have worked very hard to cultivate my style of dealing with breast cancer and its aftermath. I try to shelter myself from too much information on the Internet, as what I’ve often found is beyond scary and really doesn’t serve me. My purpose is two-fold: 1. To be good to myself and instead of giving too much of my time, effort, etc. to others who drain me, to give that time to myself and 2. To help educate others about what it’s like to be a breast cancer survivor and lend voice to this experience. In doing so, I am also helping myself as it’s cathartic and therapeutic to write and be heard.
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Beth, I have loved watched you evolve over the years as I have read your blog. Each year you become even more “you” and you are such a great role model for your beautiful daughter.
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Hi Marie, I submitted my comment, but it just disappeared. Let me try again: I think this is an awesome post, and I might devote a blog post to this someday. I have worked very hard to protect myself from information overload via the Internet, as this can be very destructive to me. I’ve learned to set boundaries and put myself first, rather than give, give, and give to people who drain me. I also feel an obligation to share my cancer and post-cancer experience to others in order to help them and allow my voice to be heard. It’s important to me to help others, as well as be heard in the world. When one is a cancer patient, a person can feel stifled and disempowered. Blogging for me has been empowering.
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I love your comment Jackie about shaping not just your words but your outlook on life – sounds simple, but yet it’s so profound
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I am a hat changer. I am silly, rationale, freaked out, sad, and introspective, when I need to be.
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I love all the responses I’m reading but this one? I adore the list and the sequence.
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Oh well Meredith if you haven’t met the wonderful Elizabeth who blogs at my eyes are up here then I strongly encourage you to check out her blog. She is a wonderful writer and a real inspiration to me
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Thank you, Meredith! I am Elizabeth MacKenzie, and we have a mutual friend, Greg Smith.
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Aha! Love how digital tools make the world cozier.
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Oops, I misspelled “rational”. Maybe it’s time for me to write my long planned post about how we (really, I) need not be so perfectionistic about writing.
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Marie, you know I love you, too. You are the wonderful weaver of stories and the chooser of the most beautiful poems. Mwah!
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Your style is quite unique Elizabeth and you know how much I love it 🙂
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Xoxoxo.
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My style is a mixed bag I guess and it varies from day to day, sometimes from moment to moment! For me it’s all about sharing. I share much of my own cancer story, of course, but I also feel compelled to share the stories of others and I also share my opinions about what’s going on ‘out there’. I’m an educator at heart, so I suppose I’m always trying to inform without being preachy. I don’t know. This is a ‘big’ question, Marie, and I do think we all have our own way of doing cancer, or as you put it, our own cancer style. And this is as it should be. Thanks for the thought-provoking question.
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and thank you Nancy for your considered reply. I am sensing a theme here – you mention drawing on your background and training as an educator which is something touched on by Dee and Jackie Fox too.
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dear Marie,
by the time I was diagnosed, I had already been a caregiver to Hugh for 2 yrs. in the blink of an eye, we no longer had the dilemma of my truly not knowing how it felt to be a cancer patient and Hugh not knowing how it felt to be a caregiver. there was already a “style” history, one of determination to live in the “now”, learning the ropes of advocacy, and navigating medical research, tightly aligned to the evidence of the excellent care Hugh was receiving. that night, after the call from my onc/breast surgeon, we concentrated on how we were going to tell our children, and what cues from us about our attitudes would help us be a united front – dealing with cancer family style. after the emotional shock allowed us to breathe again, we set into motion ways to help our young adult kids (and us) absorb the reverberations, provide a wide berth to express thoughts and feelings to be shared, and encourage our kids to continue to attend crucial medical appointments for both their Father and me. within 24 hours I had my first oncologist visit – to a doctor I had worked with caring for his patients in the hospice field for nearly 30 years. I knew he was the best, he practices the art of medicine, and the degree and quality of support he rendered to our son and to us that first visit set the tone for instilling confidence, being completely open about what a diagnosis of ST IV metastatic breast cancer means, and the power of empathy, patient and family centered care, and hope. and all of those gifts morphed into the second layer of our “illness style” – which was gratitude.
gratitude was key in giving us respite from the self-centricity (necessary, but so draining) of the grieving our family was enduring. I remember very vividly how freeing it felt to be in the treatment area and Hugh and I striking up conversations with other patients and their loved ones and feeling so fortunate to be able share stories, giving and receiving good wishes and support. and soon it was clear that another element of our “style” was emerging, one that was to be my saving grace a few years later when Hugh very suddenly died (while in remission), and just eight weeks later, I was diagnosed with another cancer – uterine with mets to the cervix.
that element, born of gratitude, was connectiveness. I write this with tears streaming down my face, reliving those 2 sentinel events, and wondering what I would have done without all my blogging buddies who upon hearing the news of Hugh’s death, and my new cancer challenge, rallied to my side, joined me in my grief and shock, indulged my profane filled rants of anger, my most desolate sorrow, and held me up in light and love and hope, when I really only wanted to die. you all stayed with me through 9 months of grueling treatment, going it alone without my Beloved, and became my virtual (but oh, so real) extended family, always there with e-mails, phone calls, letters, and beautiful, heartfelt encouragement with responses to my comments on your posts. and still we remain, our hearts, minds, bodies, thoughts, feelings connecting in ways I could never imagine. it harkens back to a notion written by the poet, Rainer Maria Rilke –
What if all of the Dragons in our lives are really Princesses, waiting to see us both Beautiful and Brave?”
so here I am, NED with both cancers, and working through the grief that is so big and at times all consuming, except when I continue to read your posts, marvel at your capacity to advocate\ with such passion, to share the good (?) the bad and the ugly of cancer and loss, to join in on conversations with being welcomed and included in this phenomenal community, and be given a chance to participate. the awful loneliness and isolation of widowhood has been the hardest thing I have ever endured as friends and even family in their discomfort and unfamiliar stance with the language of grief means keeping their distance and in many cases being unable to realize that their own discomfort is shattering and sends a message of hurtful and unrealistic expectations placed upon the bereaved – “Hurry up and get over it, so I can have you back the way you were” is the predominant sentiment, and I am sure my sisters and brothers with cancer are more than familiar with those attitudes. my commenting has taken a turn to many widows’ blogs to try to help educate and encourage society to be more empowered and sensitive about this issue. how ever discouraged and stuck and broke and lost I continue to feel, I am comforted by the notion that I have been launched into a global and multi-faceted forum of issues that involve the attempt to continue to examine and to utilize the power of the best parts of our humanity – to love and care for one another, to exercise our ability for compassion, allow forgiveness to ourselves and to others, and to reassure one another we are not alone. there are no words to adequately thank you for all you have taught me, for all the love and care you have so lavished upon me, for helping me re-claim a sense of purpose, and stand in this desert in the long, long night, devoid of light and of any promise, but still i turn my face and my heart upward toward that dark sky, and see distant but real flickers of the faint new light of day, of possibilities for the new “after life” I am trying to envision and re-birth. both those glimmers of light and (still mostly elusive) possibilities remind me of the blessedness of still being here, and the internal light that keeps us all connected to one another…
with much love,
karen
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Oh Karen, what a wonderful, wonderful comment xxxxx
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Dearest Marie,
I’m envious. How I wish I’d thought of this theme myself! Such great fodder for such a range of intriguing comments…
After three decades working in the public relations field before my heart attack, my PR friends now tease me that “this is just what happens” when a PR person has a heart attack: we just keep writing and speaking and looking stuff up because that’s all we know.
I suspect they’d also describe my blogging/speaking style as “curious, not furious” – although goodness knows there’s plenty out there to be royally pissed off about sometimes, and I do on occasion feel compelled to offer a figurative smack upside the head to my readers, my audiences, or the entire medical establishment – but only when it’s deemed 100% necessary, of course! 😉
Perhaps I was helped with a wee nudge along this path for the past six years because I’d been initially misdiagnosed in mid-heart attack and sent home from the Emergency Department in such a spectacular fashion.
Had this not happened, had I been instead appropriately diagnosed and routinely treated promptly (thus preventing permanent heart muscle damage), I could have happily returned to that PR career and I wouldn’t even be reading your blog article right now….
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Carolyn, you envious of me? Well now you know how I feel every time I read your wonderful blog 🙂 And while I am so sorry it took a misdiagnosis to be able to read your writing, I can’t help being grateful that you turned this experience into a blog that inspires, educates and motivates so many of us around the globe.
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wow, what an interesting question! I’d say for the majority is humor, then when cancer metastasized some would say black humor. I would say acceptance. But I’d have to leave that question to the people around me. I have good and bad days and I guess they get to decide my style, don’t you think? I’d say often gracious, but sometimes weary. I spend a lot if time writing others, but to my family it appears I just spend time on the computer. Interesting.
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Hi Ann, I am so pleased you have commented on this. From first time I came across the title of your blog a few years ago, I have loved your style!
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After I was diagnosed, I went through what Kubler-Ross defined as the stages of grieving: denial, anger, bargaining, depression and finally acceptance. It took about 6 months for me to truly accept the reality of it. I made a conscious decision at that point to try to focus on all of the positive things that were happening in my life, rather than on the ugly realities of cancer. That’s why I started my blog; to challenge myself to find 100 “perks” of having cancer. It really helped me get through that most difficult time of my life.
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And Florence how you’ve come to own that decision in a way that is uniquely you! thanks for sharing your thoughts here..
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