On Dismissive Doctors: Dorothy Zbornak Is My Hero

“You need counseling.”
“You should exercise more.”
“You’re a perfectionist.”
“Is someone abusing you?”
“It’s so funny how your legs shake! Why do they do that?”
“It’s all in your head.”

Sound familiar? Like something a doctor or nurse might have said that prevented you from getting a proper diagnosis and appropriate treatment? I bet you have. I know so many women who have had doctors dismiss them while blaming their symptoms on vague and baseless issues: stress, school, family, poor self-esteem, age. It seems to happen more often to women, especially younger women.

When I was 18, I had a doctor scold me because I stated that I had stomach issues but also pointed to my lower abdominal area. “I can’t help you,” he said. “If you don’t know where your problem is.” And he didn’t. I felt like what could have been a teaching moment turned into an excuse for him not to help. It was the beginning of my illness, and I didn’t know how to advocate for myself or how to even explain what was going on. I thought a doctor would work with me to understand what was happening to my body; instead, I was humiliated. Maybe I was mistaken to expect that a doctor is also an educator, someone who helps their patients learn more about their bodies and overall health but I don’t think I was wrong. (One day — years later — I was working at the public library when that very same doctor came to my desk to check out his items. I don’t think he remembered me and I felt so angry at that moment. Not enough to say anything to him but just enough to think to myself: “I HAVE LUPUS! LUPUS, YOU FOOL! AND RAYNAUD’S! AND FIBROMYALGIA! AND SIBO! AND…”)

What I wish I could have done is what Dorothy does in the Golden Girls clip below from a two-part episode called “Sick and Tired.” (The story is based on the experience of Susan Harris, one of the creators and writers of the show.) Dorothy has been suffering from severe, crippling fatigue for a while, going from doctor to doctor, trying to find one who will take her symptoms seriously. Eventually she finds a specialist who cares and listens and is even able to provide her with a diagnosis. At the end of the show, she has a run in with one of the more terrible specialists she’s seen; he had blamed her problems on her age and suggested changing her hair color to feel better about herself.

It’s a funny but moving moment. I know it’s something I wish I could have said. At this point in my life, I’m fortunate to have found a great primary care physician who’s referred me to excellent specialists. If you don’t have a diagnosis yet and have had bad experiences with nurses or doctors, please don’t give up. Take someone who can advocate for you to your appointments, ask friends or doctors you trust for recommendations. If you need to fire a doctor, something that’s so hard to do, write a letter explaining why you’re moving on or don’t (sometimes we don’t have the energy to confront a doctor in this way). It’s never easy! I’ve been fortunate that moving made the decision for me.

But now, if I had to do it, I think I would probably do three things to prepare me for this process: (1) request my records before I fired the doctor so I can see what they have said about my condition and me (that way I’ll know what info my new doctor will see), (2) write a calm and clear letter stating my reasons for letting them go and maybe send a copy to a director, and (3) explain to my new physician the reasons why I decided to find a new doctor and provide them with a written timeline of my symptoms and any treatment I may have had. Writing a letter (2) makes me anxious just thinking about it! So if I’m not brave enough or don’t even care to write a letter or give any kind of explanation when the time comes to say “Later, dude! Thanks for nothing!”, I think at least getting my records and having a conversation with my new physician would still be very helpful.

-md

Short Fiction: Laundry by Maria Deira

I’ve convinced myself that if I do even one more load of laundry I’ll wither away, that my insides will dry up and turn to powder, that my skin will have the soft tackiness of dryer sheets, that I’ll shrink and flatten and smell like pancakes. Really. I know this will happen. I feel it in my gut. I dream it. I know it.

So the hamper overflows, clothing carpets the floors, layers of towels drape over the shower rod and I’m lying on the couch crying my eyes out because I don’t have any clean underwear left.

My mom calls, “I’ve been doing dozens of loads of laundry every week for over thirty years and I’m still here. You stop feeling sorry for yourself, get off the couch, and separate your lights from darks.”

“Well, I can do that much,” I say. “I just can’t stick them in the machine and start it.”

“Do you want me to go over there and do the laundry?”

I don’t say anything.

A couple of hours later she’s shoving towels into my washing machine. “You know this is disgusting, right?” she asks me as I hand her several gray wash cloths. They used to be white.

“I know.”

“And you know your fear is just in your head?”

“Where else would it be?”

“Don’t get smart with me,” she says. “I’m just trying to help.”

“Don’t treat me like a baby. I’m crazy, not dumb.”

She dumps a scoop of detergent in the wash and slams the lid shut. “You’re not crazy, you’re just — you’re just looking at the small things.” She smiles. “You’re over thinking the monotony of daily living. Washing dishes, brushing your teeth, doing the laundry — “

“Taking a crap.”

“Ugh. Don’t say that.”

We’re quiet for a moment.

“It’s only the laundry,” I try to explain. “Everything else, it doesn’t bother me.”

She chuckles, which is odd because my mother isn’t a chuckler. She crosses her arms, holding herself, and starts giggling.

“What?” I say.

“I feel like I’m being tickled. My skin feels all prickly.” She laughs now, gasping to speak. A single happy tear leaks from the outer corner of her left eye. And then it happens. She turns white, her skin becomes flaky, and before I know it my mother is a little mound of white powder on the floor. But the air smells like lavender soap, not pancakes.

I start to cry because it’s my mother. No one wants to see their mother transformed into dust, but there’s nothing I can do it about. How do I undo what’s been done? Oh God, I think, I’ll have to tell my father. And I know he won’t believe me, not until he comes over and sees it for himself, and when he does finally believe it he’ll blame me.

Then I have an even more horrible and selfish thought: it’s too bad she disintegrated so fast because I can’t really say, “I told you so,” can I?

I wipe away my tears, unplug the washing machine and the dryer. I sweep up what remains of my mother and pour her into a wine glass because it’s classier than a juice glass and if you know my mom, you know she’s classy. So I pour her into a wine glass which I place on the windowsill — this way she can see the sunset or at least feel the sunset or something. I get myself a bowl of dry cereal and eat it slowly, waiting for my father to call. I’ll have to figure out what to do about clothes and what to do without a mother.

I’m pouring myself another bowl of cereal when I hear my mother’s voice. I don’t know where it’s coming from, but it’s all around me and inside me and the vibration of her words gives me goosebumps. “Stop feeling sorry for yourself,” she says. “Get out there, go do something. Be something. At least pour some milk on your Cocoa Puffs for Pete’s sake.”

I’m smiling now. I’m thrilled. “I told you so, Mom,” I say as I get up to get some milk. “I told you so!”

——————————–

laundryMaria Deira has lupus, fibromyalgia, sleep disorders, and a long, sad list of other chronic and invisible illnesses. Her fiction has been published in A cappella Zoo, Fiction Southeast, Word Riot, GigaNotoSaurus, and Strange Horizons. Maria is also one of the editors of And Then I Got Sick. You can find more of her work at Writing, Writing, Lupus Fighting

“Laundry” was originally published in Every Day Fiction (2011).

Mixed-Up Monday

Oops! Due to brainfoggery and bad planning, there’s no post for today. However, we’ll be back on schedule this Wednesday!

Upcoming posts include an essay about the unhelpful or unsolicited advice those of us with chronic illnesses seem to regularly receive; a list of books, TV shows, and films that celebrate sisterhood and friendship; and a very short story about laundry.

Poetry: Every Day is Good Friday by Michael Hanson

I watch as your body is pierced over and over.
You watch as I pierce your body over and over,
And over.
You manage your pain,
As best you can,
So others won’t know it,
But sometimes it’s overwhelming.
My son, my son,
why have I forsaken you?

Every day is Good Friday,
With its darkness and pain,
And every day we anticipate
The promised Sunday
When your body will be whole
Again.

This, my son,
I promise,
Your sacrifice, your blood,
Your pain,
Will have purpose.
Forty days, or years,
Or decades,
We do not know the hour,
but soon…

For now we wait,
And learn.
Because of your suffering we question,
We doubt.
Through your suffering we know
Struggle, we grow empathy.
Through your suffering we know
Truth.

———-

Michael profile picMichael Hanson is the parent of a 5-year-old son with Type 1 Diabetes who was diagnosed at 17 months and a 2-year-old daughter. He has Master’s degrees in both English and Library Science and currently works at a public library in the Pacific Northwest. Follow Michael on Twitter: @michaelhanson22

If I Were Healthy

Living with a chronic illness means you are sick more often than you’re not.

You endure some form of dull aching, sharp shooting, stabbing, burning or searing pain, crippling fatigue, unpleasant prescription medication side effects, joint, organ, muscle and soft tissue damage, loss of hair, eyesight, hearing, cognitive function, or some other infliction as a result of a chronic illness on a pretty regular basis.

*Taking a deep breath*

(That was a massive run-on sentence…my apologies)

The list can actually be, and sometimes seem, endless.

So, when you get that one day (or a few if you’re fortunate) where you can do anything at all that you haven’t been able to do in a long time, it’s like you’ve…

Oh, I don’t know…

WON THE LOTTERY!!!

And you run around like a mad person, maybe not on a shopping spree to get that Maybach you always wanted, but catching up on household chores, getting outside to enjoy the weather (whatever it may be), waving, smiling, and chatting like a Magpie on speed to whomever crosses your path, and all because today you have a reprieve from your usual aches and pains and you feel…

ALIVE!!!

Speaking for myself, I can assure you that when I get a good day or two, I keep my composure, put my shoulders back, hold my head up high, pull my belly-button into my spine and step outside.

Keeping my private desire to chase squirrels all over the yard to myself, I calmly carry on with my day as…

If I Were Healthy!

I changed the words to Beyonce’s song “If Were A Boy” to “If I Were Healthy” in an effort to describe what so many living with chronic illnesses wish, strive and pray for on a daily basis: to be healthy.

 

~Today is a Gift that I Choose to Live Thankfully~

FalanyaPictureMy name is Falanya and my blog chronicles the life I’m living right now. Lupus sufferers commonly refer to themselves as “Lupies” and, interestingly enough, this painfully crazy disease can provide some pretty loopy moments. It’s those moments that can lend a little laughter to an otherwise unfunny existence.

 

A Lupie Existence (Falanya’s blog)
 A Lupie Existence on Facebook
Email: aLupieExistence@gmail.com

Blog Spotlight: Disability and Representation, Changing the Cultural Conversation

This is a reprint. Unfortunately, since the original date of publication Rachel Cohen-Rottenberg’s blog Disability and Representation, Changing the Cultural Conversation is no longer available. I was unable to find the essays from which the quotes were pulled but I decided to leave this particular post up on ATIGS as it defines “inspiration porn” and illuminates the history of institionalizing disabled people. -md

I first heard of Rachel Cohen-Rottenberg via writer Rachel Swirsky and, of course, the title of her blog struck my interest. With a Master’s Degree in English and currently working on a second degree in History and Culture with a focus on Disability Studies, Cohen-Rottenberg explores the representation of disability in our culture. She digs deep into our understanding of disability, reveals misconceptions and a general lack of knowledge about its history. For example, in her essay Where Are the Elders with Autism? Reflections Upon Reading Fred Pelka’s What We Have Done, she discusses the institutionalization of disabled people, an issue that has affected her family and a period in our history which has mostly been forgotten.

I have a personal interest in this subject: my great-aunt Sarah, who was autistic and had cerebral palsy, was incarcerated in Massachusetts state institutions for most of her short life and died of tuberculosis in the Foxborough State Hospital in 1934, at the age of 25…. I am always shocked, then, to hear people say that autism is an entirely new condition that didn’t exist in past generations. When I hear such things, I feel as though my great-aunt has been relegated to obscurity a second time.

She goes on to challenge Anne Dachel, an editor for Age of Autism, as “[One] of the people who has been most vocal about the purported impossibility of autistic people existing in large numbers before the current generation…” Dachel “believes autism to be a recent ‘epidemic’ caused by vaccination” because she can’t find middle-aged or elderly people in nursing homes who suffer what is considered severe autism.

Cohen-Rottenberg’s response:

Of course, the idea that someone could go to a nursing home as an elder implies that the person was once a part of a community. It is ironic, then, that Ms. Dachel is looking for people born between 1930 and 1975 — years in which disabled people, far from being integrated into their communities, were ruthlessly segregated from society, denied the right to an education, and consigned to a “disability gulag,” where they underwent enormous suffering, deprivation, and abuse (Pelka 2012, 49).

Another of Cohen-Rottenberg’s essays, which spoke to a truth that I had felt and experienced but could never quite describe, is When Inspiration Porn is Counter-Inspirational.

For those unfamiliar with the genre, inspiration porn consists of the objectification of disabled bodies for the purpose of inspiring able-bodied people. Disabled people are its subject matter, but able-bodied people are its audience. And what should able-bodied people be inspired to do, you ask? It’s simple: they should adjust their attitudes, quit complaining, and go on to achieve great things through hard work and willpower. Of course, the ideology of inspiration porn completely ignores the bigotry, the economic injustice, and the basic human limitations that keep most people from actually being able to do all of those things.

While inspiration porn is used to inspire able-bodied people, it can also be used to encourage chronically ill and/or disabled people. But this sort of encouragement is almost a way to avoid an actual discussion, to listen, or, if used by the chronically ill, a way to mask the really difficult emotions you may be experiencing. “Hang in there!” “You can overcome this!” “Someone else has it worse!” Inspiration porn is everywhere, on every social network, in emails from friends and family, on cards. Those of us with chronic illnesses will recognize these right away. Here is just one example out of thousands:

This is inspiration porn objectifying those with disabilities.

It’s not often that you find such an educated and rational discussion of the way disability is treated and portrayed. Rachel Cohen-Rottenberg’s writing is evocative, provocative, honest, and engaging and there’s always a bit of humor woven into her essays. Her blog posts have helped me understand my own limitations and provided me with a way to discuss the subtle and not so subtle prejudices of those who don’t understand the stigma, implications, and history of what is considered a disability.

It’s unfortunate that her blog and essays are no longer available. However, please read her article Doing Social Justice: 10 Reasons to Give Up Ableist Language or her book Blazing My Trail: Living and Thriving With Autism.

Poetry: Low Tide by Rachel Swirsky

Fear binds
knees to stomach
forehead to feet.
Smothered, dissonant,
familiar paralysis.

Infinitesimal miscalculations
replicating X, should be Y,
should be Z, R, Q, N, should
be the person who
avoids my gaze
in mirrors.

A broken equation,
solution dissolving
into equal parts:
crumpled afternoons,
thirsty riverbeds,
severed strings.

———————–

Rachel Swirsky Rachel Swirsky graduated from the Clarion West Writers Workshop in 2005 and the Iowa Writers Workshop in 2008. She has published more than fifty short stories in magazines and anthologies, and her short fiction has been nominated for the Hugo Award, the Locus Award, the World Fantasy Award, and others. Her work has twice won the Nebula Award. Her second short story collection, HOW THE WORLD BECAME QUIET: MYTHS OF THE PAST, PRESENT AND FUTURE, came out from Subterranean Press in 2013. She only writes poetry occasionally, and is pleased to have a few lines out after taking a break for a few years.

Grand Jeté (the Great Leap) – Nebula Nominee 2015

If You Were a Dinosaur, My Love – Nebula Winner 2014, Hugo and World Fantasy Award nominee

The Lady Who Plucked Red Flowers beneath the Queen’s Window – Nebula winner 2011, Hugo and World Fantasy Award nominee

Eros, Philia, Agape – Hugo nominee

A Memory of Wind – Nebula nominee

Blame It On the Pr-eh-eh-eh-eh-ednisone!

So, just what am I blaming on Prednisone?

Well…so many things!

But I will only mention a few and to start with, these:

Predinose cheeks

See it?

See THEM?

They’re my newly formed chipmunk cheeks and the Hunchback of Notre Dame hump on the back of my neck that I’ve got going on.

Where did they come from?

Well, those lovely additions would be the result of my being on Prednisone, a steroid, for the past 7 years.

You see, Prednisone squashes your immune system in such a way that when my chronic inflammatory disease is flaring, to simply take an extra 2.5 milligrams or more reduces swelling and gives me some blessed pain relief. However, living on Prednisone is a double-edged sword and its side effects are nothing to sneeze at!

If you take a glance at the long list of things that it can do to your body, you’d no doubt wonder why it’s prescribed even at all! But as one of my mother’s rheumatologists told her many years ago, “There’s just nothing else out there like it.”

My journey with steroids began when my rheumatologist prescribed Prednisone for me on a two-week trial basis to see how I would respond to it and, boy, did I respond! I felt so much better after the first few doses that I called up my boss/friend and told her I was coming back to work.

My legs no longer felt as if I were dragging extremely obese children from each limb and I could walk with my head held high on shoulders pushed back – a stance I hadn’t been able to attain in months!

I loved Prednisone!

When the trial was over, my rheumatologist had the information that she needed: my body responded positively to steroids, indicating that I had an auto-immune inflammatory condition.

I have been on steroids ever since and I have personally exhibited the following side-effects that I blame on the Pr-eh-eh-eh-eh-ednisone:

Heightened Aggression

I don’t back down easily in a discussion, heated debate or argument anymore.

It’s like my cut-off switch has been disabled and the fail-safe mechanism that would signal for me to shut up, is no longer operational. As a result, this creates some pretty “interesting” discussions between my mother and me, since she is usually the only other person in the room.

“No, Falanya, I did NOT say that.”

“Yes, you DID!” is my excited reply.

“I’m not crazy, Mom! You said Barney was GRAPE colored!”

“I did not and I will not continue this conversation with you,” she replies.

“He’s purple, Mom. PURPLE!!” I almost scream. But not too loud, because although I might be under the influence of steroids, I’m no dummy. That woman, even while laid up sick in her bed with Lupus, will still manage to slap the fluffiness right out of my chipmunk cheeks with lightning speed.

Gnawing Hunger

Have you ever felt your stomach writhe and cramp in pain as a result of hunger?

Now, let me ask you, have you ever felt this gnawing sensation in your gut with the presence of food?

Let’s say you have just eaten a full course meal with an appetizer and full dessert included. How do you usually feel? I’m willing to wager that you can barely breathe let alone still be hungry, am I right?

Enter Prednisone.

Not only are you still hungry but you are ravenously hungry and like a caveman you scavenge through the refrigerator for a small wildebeest to devour.

I may exaggerate a little, but I lie to you not!

Weird Fat Placement

This side effect goes hand in hand with the gnawing hunger. When you eat like an insatiable animal, sleep hours on end like you’re the King of the forest, you will gain a fat pocket or two and in some less than desirable places.

My cheeks have puffed up a little but I don’t have the distinctive moon face that so many steroid users exhibit (unless I am in some serious denial here) but I do exhibit the Hunchback of Notre Dame’s hump at the base of my neck and across my shoulders.

Mom has had this hump for years due to being on Prednisone for 20+ years, and I used to love petting it and teasing her about it because the glances she shot me were priceless and I’d just laugh and laugh and laugh.

And apparently, little boys and girls, if you laugh at someone else’s deformity, the same deformity will be likely bestowed upon you and having my own hump isn’t anywhere near as funny as it was to tease my mother about hers.

There are so many other serious side effects that Prednisone is responsible for (Osteoporosis, diabetes, glaucoma, depression, high blood pressure, excessive sweating, sleeplessness, etc.) but as you can see, it can be a wonderful blessing and at the same time a horrid curse.

For the moment, as new and weird side effects continue to pop up causing me to become more of a freak of nature, I won’t blame it on the Goose, blame it on the Vodka, blame it on the Henney or blame it on the ‘Tron.

I will look at my pill case and blame it on the Prednisone.

So, as if blogging about my life lived on Prednisone wasn’t enough, I got the crazy idea to re-work the lyrics to Jamie Fox’s song Blame It On The Alcohol and create my own version called Blame It On The Prednisone.

I like to find the funny side of the loopy life I’m currently living to keep myself smiling and hopefully bring a smile to the faces of those who can relate and maybe educate those who cannot.

I hope you enjoy this video as much as I enjoyed putting it together!

~Today is a Gift that I Choose to Live Thankfully~

FalanyaPictureMy name is Falanya and my blog chronicles the life I’m living right now. Lupus sufferers commonly refer to themselves as “Lupies” and, interestingly enough, this painfully crazy disease can provide some pretty loopy moments. It’s those moments that can lend a little laughter to an otherwise unfunny existence.

A Lupie Existence (Falanya’s blog)
 A Lupie Existence on Facebook
Email: aLupieExistence@gmail.com

Pills, Pills, Pills

A few months after my lupus diagnosis, I found myself at the kitchen table overwhelmed and depressed, staring at a row of prescription bottles. Before getting sick, I was always against taking drugs. I rarely took over-the-counter medications, other than ibuprofen for menstrual cramps or Imodium for you-know-what. So on this particular day, seeing the bottles lined up before me, I felt weak. They reminded me that I was sick, that without them I would suffer and struggle. Without the pills, I would be most certainly worse off. Quite simply, I needed these pills to live — not necessarily to keep me alive — but to keep me functioning.

This dependence terrified and angered me.

I write speculative fiction and sometimes my imagination goes wild. When I realized I had to take these meds to stay healthy, my thoughts led to nightmarish scenarios, the kind you’d often see in SF literature and disaster films but with a chronic illness twist. What if there was an apocalypse? Where and how would I get my meds if the earth was a wasteland? Would I desperately have to dig through the rubble of an old pharmacy? Or what if I were transported to another dimension? Would they be able to treat me? What if I found a cure in an alternate universe? Would I then be responsible to bring it to our world if I could make it back? Or what if Doctor Who chose me to be a companion!? [Okay – how cool would it be if the writers of the show actually created a disabled companion?] How would the Doctor deal with a lupie who sleeps a lot and can’t be in the sun? Would he take me only to dark, shadowy planets with temperate climates? Would he try to help me get better and travel to the future (the near future, I hope) for a cure? Is the TARDIS equipped with comfortable beds, ADA compliant toilet seats and shower bars, and a closet full of UV protective clothing?

Aside from those fears, my true feelings were that of anger and helplessness. So on that day, after staring at those ugly orange bottles for too long, I started throwing them one at a time. Some bounced off the carpet, a couple hit the wall which popped the lids off, scattering pills on the floor, shattering the others. What a mess. It was a stupid, immature reaction. I didn’t even think about how much those pills cost until they fell out of the bottles and then I cried. My coping skills pretty much sucked at that time and that response was something I could have controlled. But I felt on the verge of losing it and I needed to act out in some way, to let off some steam, to rebel against the inevitable, to fight it all in some small way. With no one around to witness my foolishness — whiz, bang, pop, crack!

After that, it didn’t take long for me to realize that these pills gave me a better quality of life. They took some of the edge off the pain and provided insulation from lupus flares. Over the years, I’ve been diagnosed with additional illnesses (“Where’s there’s one autoimmune disorder there’s often another!”) which has meant more medication, more pills to count out and organize every week, more visits to the pharmacy where every one knows my name and has my prescriptions ready by the time I reach the counter.

I think part of the anxiety about taking meds is how other people will judge you. They question Western medicine, Big Pharma,  which is fine. But they don’t  always take into account that it’s not all evil corporate practices and lies. These same people might suggest that you aren’t doing enough to stay well, that you are naive if you don’t believe that doctors and pharmacists are pill-pushers, that a placebo or dietary supplement would work just as well. While these are things you might consider, the best thing you can do is to get information that is based on facts and clinical trials. Have an advocate help you research, discuss with your doctors why you need these meds, how they work, what are the side effects. A pharmacist can also provide further information.

For those of us who have been sick for a long time, who have done our research and asked our doctors all those questions, we can’t deny that these medications not only make us feel better but they save our lives. Those medications which have been carefully researched and tested — they work! They don’t always offer a cure,  they might have some weird side effects, or you might have to try several different ones before finding the right fit for you, but at the end of the day they make it easier to manage our illnesses and possibly prevent further damage to our bodies. So don’t stop taking your meds just because others may be critical of your ability to take care of yourself or challenge what your doctors think is best for you. These folks are not doctors or scientists and I bet that most of their information is only anecdotal. [I’ll discuss this “fake medical expertise vs your real illness”in next week’s post You Said the Wrong Thing. Again.]

Over the years, I’ve experienced the benefits of these medications. Evenutally, I came to the realization that my belief that only a weak person would take meds wasn’t anything but pride. I thought that strength meant complete self reliance, stoicism, hiding how awful I felt, not seeking help of any kind, pushing through the pain or fatigue even when I couldn’t. How scared and small-minded I was back then! Those beliefs only led to more pain and suffering and a sense of isolation. I’ve learned that strength isn’t chastising yourself for taking pills or pretending that everything is okay and putting on a brave face for others. Strength comes in knowing when you need help, asking for help, and being open to receive that help.

Almost ten years later, I have to laugh at myself when I remember how I could barely swallow one pill. It took me forever to take all of my pills, one at a time, and some I couldn’t even get down. But along the way I learned some tricks like using a straw to make it easier to swallow or eating something sweet beforehand. Today, the number of pills I take has doubled and I can wash down several pills at once without thinking about it.

I think that’s a pretty neat trick.

————————–

photoMaria Deira has lupus, fibromyalgia, sleep disorders, and a long, sad list of other chronic and invisible illnesses. Her fiction has been published in A cappella Zoo, Fiction Southeast, Word Riot, GigaNotoSaurus, and Strange Horizons. Maria is also one of the editors of And Then I Got Sick. You can find more of her work at Writing, Writing, Lupus Fighting.

Let’s Celebrate Sisterhood!

What can I say about sisters? We’re similar in some ways but we’re also completely different in others. We argue, we fight, we laugh, and we cry. Even if we’re full grown women, when we get together we’re like kids again. And even if we annoy each other or live thousands of miles apart, when one of us is sick or hurting, we worry and try to support each other the best we can.

Although we might have nothing in common, we love each other. Why? We may have specific reasons or examples but usually it’s love without rationale, distinct from the way we love a friend (and sometimes friends are as much of our sisters as our siblings) or our significant other. Whether it’s because we’re connected by DNA or by a shared childhood, this sisterly bond sometimes feels like a mystery to me!

So to celebrate this mystery, this connection and love, I’m sharing my favorite examples of positive sisterhoods in pop culture.

Short Story: “Tiger Mending” by Aimee Bender

Tiger Mending (2003) by Amy Cutler

When a young woman is asked to use her sewing skills to help mend tigers whose backs have split open, her sister, somewhat aimless in life and protective of her older sibling, follows her into deep Malaysia. Each sister is transformed through this experience in her own way. Incredible writing by one of my favorite authors. Aimee Bender has stated that she was inspired by Amy Cutler’s painting Tiger Mending (picture shown, 2003). The story has been published in Bender’s collection The Color Master and in The Best American Non-Required Reading 2005. It was originally published in Black Book, #34, Fall 2004.

TV: Braxton Family Values

Grammy Award winner Toni Braxton suffers from lupus and sits on the board of directors for LupusLA. In this reality TV show, we get to meet her equally talented sisters Traci, Towanda, Trina, and Tamar and their mother Evelyn. As with every group of sisters, they each have their own strong personality which can lead to disagreements, tension, hilarity, and a lot of singing. I love it when they do something out of their norm, like traveling abroad or joining some crazy new fitness program. I also enjoy watching them do what has always been part of their sisterhood: pajama parties and singing. If you have one sister or five (or a lot of aunts), you need to watch! The show airs on WeTV and past seasons are available on Netflix, Amazon Instant Watch, Hulu.

 

Novel: We Have Always Lived in the Castle by Shirley Jackson

Two sisters against the world! You may already be familiar with Shirley Jackson’s short story “The Lottery,” so expect a strange, disturbing tale.

My name is Mary Katherine Blackwood. I am eighteen years old, and I live with my sister Constance. I have often thought that with any luck at all I could have been born a werewolf, because the two middle fingers on both my hands are the same length, but I have had to be content with what I had. I dislike washing myself, and dogs, and noise. I like my sister Constance, and Richard Plantagenet, and Amanita phalloides, the death-cup mushroom. Everyone else in my family is dead.

Animated Film: My Neighbor Totoro

I love this movie! The story is about two young sisters who are drawn closer by the illness of their mother. From the movie description:

Follow the adventures of Satsuki and her four-year-old sister Mei when they move into a new home in the countryside. To their delight, they discover that their new neighbor is a mysterious forest spirit called Totoro — who can be seen only through the eyes of a child. Totoro introduces them to extraordinary characters — including a cat that doubles as a bus! — and takes them on an incredible journey.

Classic Film: Little Women (1949)

This is myLittle Women favorite film version of the classic novel by Louisa May Alcott. Although it may not be as faithful an adaptation as the others, it’s the best at capturing how the sisters interact and each grows into her her own person. As readers and viewers, we all connect to at least one of the girls — Margaret, Jo, Beth, or Amy — and we share their joy and sorrow. Even though we may have read the novel as children, it’s still a lovely read. In this version of the movie, the March sisters are played by Janet Leigh as Margaret, June Allyson as Jo, Elizabeth Taylor as Amy, and Margaret O’Brien as Beth. Marmee is played perfectly by Mary Astor.

Music: The Breeders

Kim and Kelley Deal. Twins. Women who write their own music, play instruments — what’s not to love? Since her time playing bass in the Pixies, I’m still crushing on Kim Deal.

-md