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The Toxic Masculinity I See With the Language Used to Talk About Illness

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Most people living with a chronic condition, an incurable disease, or most cancers knows that the reality of this life is an ebb and flow. Our lives are not typically the vision of decisive finality that the patriarchal language used to talk about them implies. When we are spoken about, we are warriors, we are fighting battles, we are survivors, we have beaten something, we have survived, or we have lost. I feel we are expected to, and thus expect ourselves to fit into these binaries that leave little room for the fluidity that disease actually looks like. Moreover, I believe that this type of language and subsequent thinking and behavior contributes to a diminished quality of life for us as patients and as people.

We currently live within such a rigid structured timeline of illness, with goalposts and finish lines where you graduate from one particular label to another. People make the shift from “patient” to “survivor” or are at some point pronounced “cured” or “disease-free,” as if this pathway was one-directional. This is just not how most illness works. Illness has a timeline all it’s own; it deviates. So when people act and speak with such linear certainty, patients can be, and are sometimes rightfully blindsided when reality hits back, when bad news resurfaces, or simply when uncertainty persists.

Living with any incurable or chronic illness is a lifetime of daily experiences with patience, persistence and kindness with oneself and one’s body; practices consistent with a true and intersectional feminism. To be alive and sick is to occupy a radical body and as such, instead of continuing to live by binaries that make up the bedrock of the healthy heteropatriarchy, moving forward, and I believe we need to put into working practice the flux of the sick femme body.

I want a renaissance in the language around illness. “Warrior,” “‘battle,” “fight,” “survivor,” “cured,” etc – I feel they are all incredibly polarizing and does not allow for the liminality of disease. Neither does it respect the individuality that is due all patients, nor allow for us to be precise in our language about ourselves, and that alone is validating and necessary. Specifically, phrases like “conquer” or “beat,” often used in cancer speak is grotesquely macho and militaristic.

There is a long history of women calling out the violent war metaphors used in cancer dialogue; from Susan Sontag and Barbara Ehrenreich, to most recently Xeni Jardin. How horrifically self-destructive to be speaking in a way that posits the patient on both sides of an internal civil war. In my opinion, it constructs a dialogue in which we are both our own invading enemy and defending army. And while with many illnesses this may actually be the physiological case, I think mentally positioning our body and internal systems as arch antagonists can only do more harm to ourselves.

Similarly, this vernacular makes having illness into an event, or worse an expedition. One definition of “to conquer” is literally “to climb a mountain successfully” and I cannot help but compare the scenario to scaling Mount Everest, since that has always felt like the epitome of toxic masculinity to me: the needless risking of life to defeat a natural wonder. The word choice implies a finality, a need to define the relationship in terms of “win” or “lose,” when illness rarely works like that. I believe that the language conveys an active discomfort with a more feminine approach of not needing to “conquer” or “defeat” illness, but instead being able to exist in tandem. Not only does it not give credit to the process, but it completely negates the life of the living, breathing person, the give and take they experience actually living with an illness.

On that note, for all of the ways that this vocabulary and those who use it claim to be life-affirming, it in fact often makes for an unreal and romanticized image of disease, solely about the climactic act of succumbing. “Warriors,” “fighters,” “survivors;” making the story of someone with disease into a Hollywood epic takes it out of the norm, out of everyday life. When we make sick people into heroines or heroes, tragic or not, it becomes typical when we die because that was what we were expected to do: fight and die.

We were never allowed to be average, we were never allowed to be, exist, have, or simply live. Oddly enough, people with illness are not referred to as “warriors” for doing laundry, nor are cancer patients “fighters” for going grocery shopping. These heroic metaphors only persist in the public sphere, where ableism reigns supreme. The language is incredibly patronizing and simply puts more of a burden on the sick person to be or fill the role of something for the healthy person. It is akin to calling people with physical disabilities “brave” or “inspiring.” We do not exist in our daily lives to be your inspiration, to be your warrior. This type of language belongs in a patriarchal society in which sick bodies are fetishized by healthy bodies and privilege goes unchecked.

I believe that our community of the sick and ill can and should hold a higher standard to ourselves and others. In speaking of disease, instead of focusing our attention on the finite moment of death, we need to shift into a place where we view and speak of it as a long-term relationship with life. Instead of our immediate thought being of people “dying of X,” it should be more of people “living with X.” That is a more feminist, and healthier way to talk and live with illness. You do not need to conquer it, you can, dare I say have to, learn to live with it.

We need to rewire our minds to cohabitate with disease. It is terrifying to realize that science and medicine, fields that have always stood for truth and certainty, can sometimes not have all of the answers to our pain. It is even more terrifying to comprehend your own life as not easily definable as safe, in the clear, or out of danger, despite medicine’s best efforts. However, as hard as that is to make acceptable for ourselves, we live in a world full of people who do not understand or respect illness, much less undefined illness.

People outside of disease, and even many within it, want to live with the linguistically curated fantasy of a definable solution instead of the reality of life with illness, hence the ignorant, machismo diction. Calling us warriors and fighters thus seems the inverse of victim blaming; it allows those privileged enough to have their health to mentally clear a path of victory for their own survival should they ever fall victim to our similar misfortune. So while this place of uncertainty is perhaps the most uncomfortable a human being can be in in regards to their life, if we can learn to be in it, I think embracing that feminine vulnerability would make for a much healthier relationship with illness.

Follow this journey on Siobhan Hebron.

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Why I Love My Dogs and Cancer Sucks

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Cancer has affected all of us in some way — here’s one way it has affected me.

If you know me or even if you just follow me on any social media site, then you know I am, well, obsessed with my dogs Lyla, Ziggy, Jovi and Lennox, and post way too many pictures of them. If you don’t know me then just imagine all the pictures new parents post of their kids and multiply it by 10… million.

I love dogs, I love my dogs, I love your dogs, I just love dogs. They bring joy into my life, and they have an unconditional love that knows no bounds. So when they are taken from us it hurts.

If you are not an “animal person” or even a “dog person” you probably don’t understand this fully. Trust me on this one.

These two guys are “my guys” — they are Lyla MuffinFace and Ziggy, both my BAEs. I just can’t get enough of them. They are the bestest friends, they sleep together, play together, eat together. They share a food dish, a kennel, the couch, and my lap, and get lots of petting from me.

two cute dogs cuddling

I don’t care what people think — I am a 32-year-old married man who dresses them up for Halloween, Christmas cards and West Virginia games.

They are basically two furry children of mine.

Then there is Len and Jovi, my wife’s dogs that have become mine as well. They are the opposite of Lyla and Ziggy, in where Lyla and Ziggy are a combined 35 pounds soaking wet, Len and Jovi are 60 pounds-plus a piece, but they act like big ole lap dogs.

And yes I dress them up, too.

Someone had the audacity to ask me, “Why do you post so many pictures of your dogs?” The nerve, right? (Just kidding). But the question really got me thinking. “Why do I post so many pictures?”

A shrink would probably have a field day with this.

Well, after thinking about it honestly, now I understand why I love these guys so much, and it coincides along with one of the many reasons why cancer sucks.

When I was 9 years old I was at the town pool enjoying a some very intense tetherball games (no cherry-bombing, of course) when I was paged to the front desk. My parents, who just got back from vacation, called to talk to me to let me know they had a surprise for me they’d brought back, and to come home ASAP. I hopped on my bike and flew home.

When I got home, I went into our downstairs room. What greeted me there was the best friend I had never met before — a golden brown Wheaton Terrier puppy.

As you can see from the above photo, I was shocked and thrilled. I was never a kid who constantly wished for a dog, so this surprise was well, a surprise. From that day forward we were inseparable.

When naming her I took a very modest approach and named her Jamie, after myself…

Jamie was a great dog but an even better companion, especially for me. I went to grammar school up the street from my house so my mom wrote me a note to go home for lunch every day, and I would go home and walk Jamie.

When I got home I would take her outside and play games with her in the backyard. We tried playing football, but it never worked. I would throw her the ball and chase after her until she would inevitably get overexcited, hear a noise and take off. The next hour or two would then be spent searching for her, praying she’d come back.

I remember promising everything under the sun as long as she came back, and she always did.

Jamie loved car rides like most dogs do, but for a kid like me, I loved watching her get so excited just by us saying the word C-A-R. I would always ask my dad if “Jamie could come” wherever we went. I specifically  remember she would always come with us on our weekend trips to Blockbuster, and as we would get close she would start barking and freaking out. I thought it was amazing.

As I grew older our bond grew stronger. She would stay by me on the couch and follow me around the house. She was always by my side. The exception was she always slept in her crate. As dog owners who crate train their dogs know, their crate becomes their home, their escape. Jamie was no different. At night she would lay down and rest there.

When I started high school, instead of walking to school I was taking the bus. My morning routine for the better half of three years was waking up, walking Jamie, eating breakfast and getting ready for school. But it was the next part of my day I will never forget.

Every single day Jamie would follow me down the stairs, I’d kiss her on the nose and then I’d walk out the door. She would race up the stairs to the couch that overlooked the street and she would watch me as I walked to the bus stop. When I would get off the bus and walk home, she’d be in the same spot on the couch (the spot that’s still called “Jamie’s Spot” by our family) and the morning routine would be reversed — race down the stairs, greet me at the door and lick my face off.

Jamie was a relatively healthy dog, with her biggest issue being allergies on her paws, so as you could imagine I was not prepared for what happened next.

It was April, I was 15 years old. One night Jamie was acting weird. I remember that night she slept in my room, something she rarely did. I can still hear her deep panting that night, like someone was cutting off her air. Her eyes were very glossy and glazed.

We had called and made a vet appointment for the next day.

The next morning, Jamie followed our same routine, except (I’ll never forget) when I started down the stairs I turned around and heard Jamie whimper.

She wanted to come down the stairs but she just couldn’t, and I could see the sadness and pain in her eyes. I walked up to the stairs, kissed her on the nose, told her I loved her and left for school.

That would be the last time I would ever see my best friend.

Jamie passed away that day from cancer caused by a mammary tumor at the young age of 6.

I remember the phone call when my parents explained to me how much pain she was in and that before she was put to sleep I could come see her. But they warned me she wouldn’t look like the dog I was used to seeing because of the drugs they had given her, etc.

I chose not to see her. I wanted my last memory with Jamie to be that kiss goodbye. I told her I loved her, and the look in her eye told me the same thing.

When I got home I remember getting on my bike, riding to the basketball courts and just shooting for hours, not wanting to go back to my house because she wouldn’t be there. That’s the day basketball became an escape for me, and still is.

Jamie left us less than a month before my 16th birthday, when I would get my permit. My biggest regret, if that’s the right word, is that I missed out on ever being able to take Jamie on a car ride.

More than 15 years later I still keep her Jamie’s license in my wallet, with my license, so she is always with me when I ride in the car.

That is why I will always love my dogs and why cancer sucks.

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I Guess My Dog Doesn’t Detect Cancer

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A story of love and forgiveness.

Two months ago I was diagnosed with large B cell non-Hodgkin’s lymphoma. It manifested as a large mass in my abdomen that caused me pain for weeks before I knew what was happening.

My diligent doctor ordered a round of tests, including the scan that found the mass. My friends and family expressed concern and offered their advice. My manager was patient and understanding when I left work early due to the intense, distracting pain.

Through all of this my 6-year-old dog, Gambit, said nothing.

He didn’t smell me with worry  —  only his usual curiosity. At no point did he bark or growl at my abdomen. There were no attempts to alert me to my growing cancer or even to dial 911 from my cell phone while I slept.

Dog Cartoon

Me and Gambit on a typical walk in our New Orleans neighborhood. Notice how he sits calmly, ignoring my lymphoma (illustration by Rob Hudak).

Some dogs accurately detect cancer more than 95 percent of the time — “better than some lab tests” (Cohen and Bonifield, CNN). My dog, however, sometimes struggles to find the treat on the floor in front of him. I point to it repeatedly, but his confusion simply grows.

I’m not asking Gambit to find drugs or bombs. He doesn’t need to pull babies from burning buildings or discover children in wells. I only ask that he paw anxiously at my abdomen, perhaps with an insistent whine or whimper. But no.

I’d be remiss to ignore the possibility that Gambit discovered my cancer months ago and simply chose not to tell me. Perhaps he didn’t want to cause me anxiety. It’s possible he made an executive decision to let me live out my days in peace, free of chemo and doctors’ visits. Although I don’t agree with that decision, I appreciate that he was trying to do the right thing.

I told him he was a good boy.

I started my second round of chemo today. When I came home Gambit greeted me the way he did yesterday and the day before that. His tail wagged, he rolled onto his side for belly rubs, and I told him he was a good boy. He acted, consciously or otherwise, like nothing was wrong.

collage of cute dog

I’ve come to accept that Gambit isn’t a rescue or a miracle dog, but I love him all the same. Earlier I told him to “sit,” and when he did, I rewarded him with a treat. For now that will have to do.

This post originally appeared on Medium.

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John McCain Has Brain Cancer, Office Says

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Arizona Senator John McCain, the 2008 Republican presidential nominee, has been diagnosed with brain cancer, his office announced in a statement from Mayo Clinic on Wednesday night.

Following a routine procedure last Friday to remove a blood clot above his left eye at Mayo Clinic Hospital in Phoenix, “subsequent tissue pathology revealed that a primary brain tumor known as a glioblastoma was associated with the blood clot.”

According to the statement:

The Senator and his family are reviewing further treatment options with his Mayo Clinic care team. Treatment options may include a combination of chemotherapy and radiation… The Senator’s doctors say he is recovering from his surgery ‘amazingly well’ and his underlying health is excellent.

McCain, 80, was re-elected to a sixth term in November. Upon hearing this news, members from both parties took to Twitter to offer support.

“John McCain is an American hero & one of the bravest fighters I’ve ever known,” tweeted former President Barack Obama. “Cancer doesn’t know what it’s up against. Give it hell, John.”

Meghan McCain, the Senator’s daughter, also shared a powerful tribute to her dad:

Her post read:

The news of my father’s illness has affected every one of us in the McCain family. My grandmother, mother, brothers, sister and I have all endured the shock of the news, and now we live with the anxiety about what comes next. It is an experience familiar to us, given my father’s previous battle with cancer — and it is familiar to countless American families whose loved ones are also stricken with the tragedy of disease and the inevitability of age. If we could ask anything of anyone now, it would be the prayers of those of you who understand this all too well. We would be so grateful for them.

It won’t surprise you to learn that in all this, the one of us who is most confident and calm is my father. He is the toughest person I know. The cruelest enemy could not break him. The aggressions of political life could not bend him. So he is meeting this challenge as he has every other. Cancer may afflict him in many ways: but it will not make him surrender. Nothing ever has.

My love for my father is boundless, and like any daughter, I cannot and do not wish to be in a world without him. I have faith that those days remain far away. Yet even in this moment, my fears for him are overwhelmed by one thing above all: gratitude for our years together, and the years still to come. He is a warrior at dusk, one of the greatest Americans of our age, and the worthy heir to his father’s and grandfather’s name. But to me he is something more. He is my strength, my example, my refuge, my confidante, my teacher, my rock, my hero — my dad.

Photo via Facebook – John McCain

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How Cancer Has Opened More Doors for Me Than Encephalitis

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Cancer has become a bit of a trump card for me. I think it’s because most people immediately know not only what it is, but also how serious it is. My other conditions tend to be rare and difficult to pronounce, but cancer is simple. People don’t need to know what type I had, they just need to know I had it.

In the last three years, I’ve had two major life-threatening conditions: meningoencephalitis and epithelioid sarcoma. Some would argue one is more important than the other. I would counter that they affect me in different ways.

The cancer means I’m at constant risk of recurrence; at any moment, a new tumor could start to grow. It puts me at risk for the rest of my life (though the chance of recurrence is greatly diminished after the first five years). In the most crude sense, it changed my body from one with two thumbs to one with one-and-a-half thumbs.

It meant I had to relearn to do many things, and I had to come to terms with what some could argue is disfigurement.

The meningoencephalitis (or a combination of meningitis and encephalitis) fundamentally changed the way my brain and body works. It’s a bit like a factory reset, where some of the data got mistranslated. I’ve had to come to terms with a brain and body that no longer does everything it used to.

Everything in my life was changed.

Strangely enough, most people are more willing to accept the consequences of my cancer rather than the consequences of my encephalitis, despite both being life-threatening and both most likely impacting me for the rest of my life.

Cancer has opened more doors for me than my encephalitis ever did. Part of it is education, the other part is physical.

Cancer is known and publicized; encephalitis isn’t. When you look at me, you can easily see the effect of the cancer on my body: part of my hand is literally missing.

From the outside, the encephalitis is quite well hidden. It’s not immediately noticeable that my body is weak or that my pain high. From the outside, you can’t see my brain or the changes in it.

With cancer, I’m suddenly an inspiration. I give hope to others, and I’m a beacon of resilience and determination. But all those qualities were there and witnessed before I had cancer.

At university, there are suddenly hoards of people offering assistance, wanting to help me with everything. I’m constantly asked about my “journey” or “battle.” Sometimes it feels like the encephalitis never happened. It’s as if the only health struggle people are interested in are the last six months of my life, and not the years preceding it.

Generally, I counter the new interest with information — information about my cancer, but also everything else I am dealing with. It’s an opportunity to make others more aware of invisible disability.

It’s a bit like some terrible advertising slogan: they come for the cancer, but stay for the encephalitis.

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Thinkstock photo by Antonio Guillem

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What Being Diagnosed With Cancer Was Like for Me

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This is for or those of you who are wondering what it’s like to be diagnosed with cancer — such as whether your reaction was “normal,” or what might happen if your worst fears come true after your biopsy.

Of course, I am only sharing my point of view here. I am in no way saying this is how everyone feels when they are diagnosed with cancer. The main thing I want to stress is please do not fret if your reaction is “normal” or not. Nothing about being diagnosed with cancer is “normal.”

Being Told I Don’t Have Cancer

After my biopsy I was told, “Don’t worry, it’s definitely not cancer!” Of course, at 21 (back in 2006), I hadn’t for one second thought it would be. My doctors originally thought it was eczema, so I thought it would be some sort of skin condition or ear problem. I’d never even heard of getting cancer in the ear, so I was shocked they’d even mentioned it.

I’m not quite sure what I thought was wrong with me, to be honest. When I look back now, I try to think about what was going through my head. I just wanted the pain to end. I didn’t really think about what could be causing it, just what might end it. Maybe it was an age thing. At 21, do you really think about what could be wrong?

My mum was recovering from breast cancer and was due to have her reconstructive surgery in the autumn (this was all happening in the spring/summer for me). I remember saying I was surprised they had even mentioned cancer. She had said she wasn’t and was wondering if it might be. I was just frustrated she was being negative. Of course, now I know that once you’ve been diagnosed with cancer, your outlook on illnesses can change. And something unexplainable can at times mean cancer.

So, I pushed it to the back of my mind, because they’d said it definitely wasn’t cancer. So I was OK, right?

It’s Cancer

I remember the day I was told it was cancer very clearly. Well, I remember nothing else about that day. But I remember the waiting room. I remember it was hot, stuffy and full of people. It was August, and people were anxiously waiting for appointments. I looked at Mum and my boyfriend (now husband) and said we’d be here a while.

That’s not what happened, though. I was called in within five to 10 minutes. That’s never a good sign really, is it? Being called in to see your doctor when the waiting room is still full of people. I think that’s the moment I realized it was going to be bad news. I still didn’t think cancer. But I knew it wasn’t good.

My regular consultant was on holiday, so I had a young stand-in I had never met before. He seemed anxious and restless himself, which didn’t help. He sat us down and began to explain that unfortunately, they’d gotten it wrong. That after further tests they had now realized it was cancer. A very, very rare and slow growing one.

A lot of the rest is a blur. I remember bits and pieces, though. I remember telling myself not to cry. And I didn’t. Not for a long time. I told myself whatever I did, I shouldn’t cry. I didn’t really say anything. I sat as he told us about an excellent ear specialist he knew in Oxford who would really look after me that he really wanted me to see. My mum asked questions, good ones. I remember they were good. I don’t remember what they were. I remember being exponentially grateful she was there, asking the questions.

As we left the hospital and walked outside, I was quiet and didn’t really know what to do, think or say. I was so pleased that both Mum and my other half were there with me, so I didn’t have to tell them. I didn’t want to tell anyone. I asked my mum to call my dad and sister to tell them. I can’t remember if I spoke to them, too, or not. I just remember not wanting to be the one to tell people. I think I was worried I would cry. That’d I’d have to accept this was real if I said it out loud, you know?

Of course, this isn’t the only time I have been diagnosed with cancer. Because this cancer metastasized, so I was told about that. A few times. And each time I reacted differently.

A Recurrence (or Three)

In 2011, five years after my original diagnosis and treatment, I was still having regular check-ups with my team. I had this weird feeling something wasn’t right. I had read up about how my type of cancer often spreads, and I was worried that maybe they hadn’t gotten all of it the first time. They never got a clear margin, you see. After a few conversations and a clear head and neck scan, my oncologist suggested a chest scan. The results of this showed quite a few nodules in my lungs.

This time I was almost expecting the news. I am not sure why, but I just had this feeling something wasn’t right. So I wasn’t really shocked when they said that. What I did find harder was being told about the surgery I’d need to remove them, and how invasive that would be. I went into autopilot, though, just getting on with it. This mode of doing what you need to do can be common among cancer patients, and can sometimes lead to a bit of a burnout once treatment has ended. Some then have anxiety, depression and PTSD. I really encourage anyone who is nearing the end of their treatment after being on autopilot throughout seeks counseling to help the transition to your new “normal.”

Again…

A few years later, I started panicking again that I had more. I remember speaking to someone at Macmillan in the UK and explaining that I needed to try and get fit again to get my lungs back into shape because I was worried I had more. I wasn’t really being followed up with on my lungs, so my original oncologist arranged another scan in 2015. Yes, more nodules.

Again, I wasn’t surprised this time. And we had some other treatment options, which was good. I was happy to avoid a huge surgery again. I had a procedure in January of 2016 called radiofrequency ablation (or RFA). It wasn’t very invasive and I was only in one night. I was, however, in tremendous pain. And afterwards, I had to cough up all the dead cancer cells, and any others that got in the way. So it was actually a fairly traumatic experience.

And Again…

I was now on three monthly scans. I’d always had a few years’ break between each recurrence. So when I went for a scan in September, I didn’t think I’d have any cancer. I thought all would be clear and I’d have a few years clear so I could get on with life for a bit. I knew I would probably get more, but not yet. And then I was told there was a nodule.

This time I cried. Not in with my doctor, but outside, afterwards. I cried and said to my husband that it wasn’t fair. I was devastated.

Being Diagnosed With Cancer

So you see, I have reacted a number of different ways each time I was diagnosed with cancer. I truly believe there is no “normal” and that each person and situation is different. Some people expect it, others are completely shocked. And we all deal with shock differently, too.

If you are worried about how someone close to you has reacted to being diagnosed with cancer, you can ring Macmillan Cancer Support (in the UK) who can help you. In truth, though, it’s an incredibly personal experience, and we all process differently.

I hope this has given you some insight into what it is like to be diagnosed with cancer. What it was like for me, at least. Was it different for you? I’d love to know about your reactions. There is no wrong answer to this, only our truth, and I say own it.

Follow this journey on CatBurchmore.com.

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