Another contribution from me to Ronovan Writes’ weekly haiku challenge. This week’s words were “mad” and “sane”. The haiku’s form provides structure. Our minds provide the creativity! The link is here: https://ronovanwrites.com/2020/12/14/ronovan-writes-weekly-haiku-poetry-prompt-challenge-336-mad-and-sane/. As a person with fibromyalgia and chronic conditions, I am always heartened to see the work of others like him who push through their circumstances to find humour and creativity. Girl, it’s not easy, as the women always say on the streets of Havana!
I have had mad thoughts before the loss of hopeful drove me sane. Why now?
Covid’s mad scatter burrows through hearts and people. Shadow of sane selves.
Sane dreaming gets me through. The mad call it lucid. Art, words, tune, rhythm.
Many people living with chronic illness, worry, and pain, experience insomnia. In fact, even children can experience it. It is a very insidious problem, and with the current state of affairs, I suspect that more people are staying awake than before. Paradoxically, even those with chronic fatigue or fibromyalgia, may be unable to sleep, although they feel exhausted. Sometimes, after exertion, whether cleaning or shopping or laundry or even walks for pleasure, pain and fatigue hit like a ton of bricks. But at night, sleep can be elusive. Since I was a reader long before the internet, I often enjoyed reading at night. I still do. There is something magical about immersions in other worlds, while the world outside of oneself is sleeping and relaxed.
In Mexico and Cuba, the nights would be punctuated by rogue roosters, all of who seemed to suffer from insomnia, and never waited for dawn to start their proclamations! In fact, I began to wonder if the rooster- crowing- at- dawn trope was actually a myth. Or was it that ages ago, cities and countrysides were not as lit up throughout the nights, encouraging roosters to sleep?
Reading however is a great escape, if one can concentrate enough to enjoy it! I continue reading at night especially when I can’t sleep. With the closure of bookstores and my aversion to online shopping, the high-price of new novels, I have found online resources at the public library to be a great resource. I first realized that online reading was helpful in travelling, as so much weight was taken up by my books. But with the pandemic, I have resorted to online mysteries, biographies and children’s literature. Sadly, the last category is the weakest and a lot of stuff online for kids is really repetitive and badly written. Illustrated books for younger kids show a total reliance on cartoon culture and a lack of visual imagination.
The other night, while waiting for sleep, I went back to the haiku, a favourite form of poetry. After reading a few contemporary ones, I decided to try my hand at some after a long time. Here, they are.
No much up to writing lately, and they say a picture is worth a thousand words.
5 Septembers ago, the equinox gave me the gift of a new face. I was afflicted with a virus called Bell’s Palsy. It changed my life. We are all judged on first appearances. I used to be excruciatingly self-conscious after my face became paralysed. Even today, eating in front of people is an embarrassment. Self-esteem is a’ thing’, as they say, and for myself and many others with facial disfigurement/paralysis it is very easy to be judged and pigeonholed, leaving our self-worth hugely destroyed.
I mention this because medical science doesn’t even know how to treat/help viruses that are already here. Let alone one that was supposedly released/found in humans a year ago. In the midst of this pandemic, my pre-existing conditions are acting up too. And corona counts are surging where we are., though nowhere close to the U.S. India, Brazil or Mexican rates.
I’m too exhausted by, and weary of, words. Pandemic fatigue, citizenship reduced to disposability, rumours of electoral– and beyond– violence, in the southern neighbour; hundreds if not thousands living around us in parks in the advent of winter, climate catastrophes, and plague profits/prophets abound. 38 million people will die from hunger in India alone due to government private sector mishandling of public health measures and food security. In Canada unemployment is hitting 30 percent with little relief in site. Lockdowns without food are useless.
Below, I share some of my newer creations, tinged by both personal grief, and grief for the suffering wrought by governmental /corporate responses to human suffering on a scale unmatched in peace time. Seems more like piece time–those who can will grab what they want and the rest of us will get the pieces. Don’t need horror stories for Halloween this year.! We’re living it. I’ll let Jay Gould’s Daughter have the last word. After all, who better to bemoan dignity for the working peoples of the world than another old-times tycoon’s daughter!
I am sharing this piece in honour of May, Fibromyalgia month. May 12th is Fibromyalgia Awareness Day. This is a victory for those of us who have been diagnosed with this illness, which has gone through many medical iterations before finally and most recently being considered an illness of the central nervous system. Which makes a great deal of sense to me as a patient for over two decades!
In the times of the new coronavirus, COVID19, it would do us well to pay attention to the struggle and suffering of people who also have illnesses of undetermined nature that catastrophically affect their quality of life, including their abilities to earn, learn, work, and parent, as the issues of the virus we face now are showing us widely.
Sufferers of Fibromyalgia, Myalgic Encephalitis, and chronic Lyme, are the least understood, properly treated, and most maligned patients of chronic illness, precisely because experts have not been able to agree on the criteria for clinical diagnosis and the existence of chronic Lyme is seen to be a hoax by many medical types, simply because they do not understand it. In this way,the experiences associated with certain types of illness are more akin to be disparaged, controversial, patient-blaming and uncertain.
I have experienced musculo-skeletal approaches, pyschological (it’s all in your head/hysteria—mainly from female therapists!), been advised to drop out of university and become unemployed, by other professional women and been refused services employing touch at a fibromyalgia clinic by a racist physiotherapist who massaged all the white women in the rehab group. That was the last time I have gone to any group rehab referral. I have included the words of another Fibromyalgia patient, Emily, from her website at the end of this piece. If you read it, you will see it’s a tremendous amount of stress to be left to navigate on one’s own.
COVID19 needs to be well understood and we will see numerous causative explanations, attempts at treatment, and medical interventions. We will need to understand mutation, immunity, re-infection and long term impacts on the central nervous system if cytokine storms are indeed the response to severe or fatal infection. That’s a lot of new research! That’s probably because approximately half of COVID19 patients are men. This makes it unlike ME and Fibromyalgia which are seen as overwhelmingly female cohorts. And like Lyme disease which is also experienced by the population as a whole, the master narrative of COVID19, is most likely going to be one which utterly disregards the lived experience of patients and leaves people’s lives, finances, and self-esteem in tatters.
None of the descriptors or symptoms are meant to stand in for professional medical advice. They are merely descriptions of symptoms experienced by fibro patients and have been collected together. I also include some my own poetry and art on living with chronic illness.
is late. 40 minutes of shuffling and squirming while fatigue and lassitude course through my inflamed veins
then hailed, oh great goddess of the white robe, i come to make my obeisance. I offer you whole realms of symptoms, libations of bloodwork, i clean your floor with my tears
Yawning, you glance away, anything but that imagined malady, the hypochondriac sitting in your office, marring your chandeliered wellness center.
centering into the distance, at the cuboard away from the patient’s head, you begin to plan the day, your kids, your chores, your pills. You think there is no help. You say so, with your body, your unmet eyes, your screen like shield that distances from that voice that pleads for understanding and help.
Nothing is real. Not the non-diagnosis, not the diagnosis that is a non-diagnosis. not the deep scarlet of your secrets spurting into the purple, green, yellow, blue. pollock’s abstractions contained and solid in the not-real.
I come armed with lover/witness, research, anecdotes, reports, book titles.
No one is interested. I return broken into smaller pieces. Who will know the name of what i have become?Kaushalya Bannerji, 2018
Fibromyalgia is a syndrome with many symptoms. Each individual with Fibromyalgia will have some of the symptoms. A few people will have all of the symptoms, but not everyone with Fibro has the same symptoms or even has symptoms all of the time. Also, symptoms may vary from day to day, year to year, or even minute to minute for each person coping with Fibromyalgia and other common coexisting conditions as well. How confusing is that? Well, it gets even more confusing! Fibromyalgia patients have reported more than 200 symptoms that I have been collecting in a list for quite some time. Additionally, these symptoms are not meant to diagnose! My purpose in compiling them is to help people be more aware of what people with Fibromyalgia may be dealing with at any given moment and to help people with Fibro track symptoms, so that you have as much information as possible for your doctor to help you.
Informational Purposes Only – the content offered in this list is for informational and educational purposes only. This list of symptoms is not intended to be a substitute for medical advice, diagnosis or treatment. Please contact your doctor or professional healthcare provider for assistance with medical advice, treatment, and diagnosis.
Activity level decreased to less than 50% of pre-illness activity level
Cold hands and feet (extremities)
Delayed reaction to physical activity or stressful events
Dryness of eyes and/or mouth
Family member(s) with Fibromyalgia
Fatigue, made worse by physical exertion or stress
Feeling cold often
Feeling hot often
Low blood pressure (below 110/70)
Low body temperature (below 97.6)
Poor circulation in hands/feet
Recurrent flu-like illness
Shortness of breath with little or no exertion
Severe nasal allergies (new or worsening allergies)
Sweats 25.Symptoms worsened by air travel 26.Symptoms worsened by stress27.Symptoms worsened by temperature changes 28.Tender or swollen lymph nodes, especially in neck and underarms 29.Tremor or trembling 30.Unexplained weight gain or loss
“Growing” pains that don’t go away once you are done growing
Inflamed Rib Cartilage
Lumpy, tender breasts
Muscle spasms 41. Muscle twitching
Pain that ranges from moderate to severe
Pain that moves around the body
Paralysis or severe weakness of an arm or leg
Restless Leg Syndrome
Scalp Pain (like hair being pulled out)
Tender points or trigger points
“Voodoo Doll” Poking Sensation in random places
Feeling spaced out
Inability to think clearly
Numbness or tingling sensations
Photophobia (sensitivity to light)
Sensation that you might faint 63. Syncope (fainting)
Tinnitus (ringing in one or both ears) 65. Vertigo or dizziness EQUILIBRIUM/PERCEPTION
Bumping into things
Difficulty judging distances (when driving, etc.)
Directional disorientation 71. Dropping things frequently
Feeling spatially disoriented
Frequent tripping or stumbling
Not seeing what you’re looking at
Poor balance and coordination
Alertness/energy best late at night
Altered sleep/wake schedule
Difficulty falling asleep
Difficulty staying asleep
Extreme alertness or energy levels late at night
Falling asleep at random and sometimes dangerous moments
Light or broken sleep pattern
Muscle spasms/twitches at night
Sleep starts or falling sensations
Tossing and turning 93. Un-refreshing or non-restorative sleep
Vivid or disturbing dreams/nightmares
Blind spots in vision
Eye pain 97. Difficulty switching focus from one thing to another
Frequent changes in ability to see well
Night driving difficulty
Occasional Blurry vision
Poor night vision
Rapidly worsening vision
Becoming lost in familiar locations when driving
Confusion 106. Difficulty expressing ideas in words
Difficulty following conversation (especially if background noise present)
Difficulty following directions while driving
Difficulty following oral instructions
Difficulty following written instructions
Difficulty making decisions
Difficulty moving your mouth to speak
Difficulty paying attention
Difficulty putting ideas together to form a complete picture
Difficulty putting tasks or things in proper sequence
Difficulty recognizing faces
Difficulty speaking known words
Difficulty remembering names of objects
Difficulty remembering names of people
Difficulty understanding what you read
Difficulty with long-term memory
Difficulty with simple calculations
Difficulty with short-term memory
Easily distracted during a task
Feeling too disoriented to drive
Forgetting how to do routine things
Impaired ability to concentrate
Inability to recognize familiar surroundings
Losing track in the middle of a task (remembering what to do next)
Losing your train of thought in the middle of a sentence
Loss of ability to distinguish some colors
Short term memory impairment
Staring into space trying to think
Switching left and right
Transposition (reversal) of numbers, words and/or letters when you speak
Transposition (reversal) of numbers, words and/or letters when you write
Using the wrong word
Abrupt and/or unpredictable mood swings
Anxiety or fear when there is no obvious cause
Attacks of uncontrollable rage
Feeling helpless and/or hopeless
Inability to enjoy previously enjoyed activities
Tendency to cry easily
Irritable bowel syndrome
Stomachache 175. Vomiting
Weight gain 177. Weight loss
Decreased libido (sex drive)
Endometriosis 180. Frequent urination
Menstrual problems 183. Painful urination or bladder pain
Pelvic pain 185. Prostate pain
Urinary frequency 187. Worsening of premenstrual syndrome (PMS)
Allodynia (hypersensitive to touch)
Alteration of taste, smell, and/or hearing 191. Odor sensitivity
Sensitivity to chemicals in cleaning products, perfumes, etc. 193. Sensitivities to foods
Sensitivity to light
Sensitivity to mold
Sensitivity to noise
Sensitivity to odors
Sensitivity to yeast (getting yeast infections frequently on skin, etc.)
Sensitivity to pressure changes, temperature & humidity
I’ve been having a hard time with this solo-self-isolation. All members of my family are thousands of miles away, experiencing their own lockdowns. Music, books, cleaning, and cooking are losing their charms after the 2 weeks I’ve been doing this! And I fear there will be weeks more.
As a person with disabilities that make life unpredictable at the best of times, getting sicker and sicker has already meant losing my social life, long before this coronavirus even hit.
People do not call you if you’ve cancelled at the last minute, or don’t even have the words to articulate what you’re feeling after a while. Causation is tiring to constantly explain or reason out, when you have fibromyalgia, chronic fatigue, active arthritis, and bell’s palsy. As such, navigating this time with the few good friends I have is crucial.
Trying to figure out the every “why” of my body’s reaction had me going to doctors for years with questions to which they did not have answers. Things have changed a great deal in ideas about fibromyalgia and ME or chronic fatigue syndrome since I was first diagnosed in 1998.
But the symptoms have not. In fact, they’ve gotten much worse. And sadly, I suspect as a woman of colour, I have probably not gotten the help I might have. I know very clearly that privilege and hierarchy play a huge role in accessing adequate healthcare. The best health care I ever recieved was when I was a law student, and the words engendered respect in doctors! However, that feels like another lifetime ago.
Being in this situation has meant that all systems are go! Both the physical activity of carrying on solo life and disinfection under self-isolation, and the emotional stress can be a trigger to increased pain, fatigue and brain fog.
The protocols of this COVID 19 time are alienating and isolating. Staying strong means breathing, eating twice a day whether one’s hungry or not, going out on the balcony for air a few times a day, and walks, weather permitting. Staying hydrated. Getting vitamins. And listeneing to some other beautiful soloists!
Staying strong means listening to some beautiful jazz in an impromptu concert by piano maestro Chucho Valdes!
Staying strong means listening to the wondrous voice of the great Nusrat Fateh Ali Khan.
Staying strong means listening to the intricate and soothing ragas of Indian classical music and Pandit Bhimsen Joshi.
Staying strong means listening to the beautiful cello solos of the imimitable and compassionate Yo Yo Ma!
Staying strong means listening to the latest piece from Chilean Popular artist, Ana Tijoux
Staying strong means listening to the wonderful contemporary Cuban-Mexican singer-songwriter, Leiden!
Staying strong means clanging pots and pans with my neighbours to honour our health care workers, and all those working and risking their health and lives— so people like me, and the elderly, who are most vulnerable — can stay home.
Staying strong means signing petitions against homelessness, hunger, lack of basic human rights, and drinking water on First Nations lands, not only in the time of the Corona virus, but for all time.
Staying strong means demanding those who rule us are accountable in making domestic policy that is fair, equitable and just for the most vulnerable in our society!
Staying strong means supporting alternatives to our current way of cruelty, I mean, life, under profit and the cash nexus.
I wish all of you a safe and well time during these uncertain and dystopian days. May you be surrounded by the love you need!
For those of us with disabilities and compromised immunity, the coronavirus contagion is loaded with particular fear. Like the elderly, our bodies are already dealing with underlying issues, some of which are already being treated for, and some for which there is no reliable big pharma treatment but sometimes symptomatic help. Over the last six weeks, being a news junkie, I have read both fact and fiction, been inundated with both hope and fear.
But today, I realized again my place in the world. As the prime minister of the country I live in, pleaded for social distancing and self-isolation, he never mentioned people like us, with disabilities that already make accessing healthcare a massive issue. He spoke of grandparents and health care workers, but those of us who were not wanted before this pandemic must be careful, because we are not even on the social radar.
This is why so many people are blithely going about their day as usual, not realizing that being possibly asymptomatic, can affect those next to you, whose health histories and disabilities you know nothing about. Clearly the problems we face in places like Canada are quite different than in the former “3rd world”.
But not really. Consider that more than eighty First Nations Reservations are without running water and potable water, at a time when all public health experts agree we cannot wash our hands and bodies too much. Consider the price of fresh food— greens and fruits, eggs, meat, milk and water in our Northern Communities. Communities where money can always be found to exploit, but never to help.
Consider that in a country with land and wealth and climate extremes, we have thousands of homeless people. Just two blocks from where I am isolated, hundreds of women have come to use social services for poor and homeless women and trans-women. These women are already suffering poverty, inadequate housing, and nutrition, and are absolutely on their own when in comes to mental health, as poor people seem to be these days.
Consider that for 2 weeks I went to 14 inner city big box and other stores and was able to come home with a carton of eggs, 1 litre of milk and a box of tea. Friends have had to help me gather supplies for the lockdown, as the combination of illnesses i suffer from made it impossble for me to continue going on my Sisyphean quest for food and hygiene products for more than two weeks. Now more than ever we must echo Marx’s observation that “Man (sic) is a social animal”. Without the solidarity and kindness of other humans, I would not have coped alone.
Capitalism is coming apart at the seams. Rent, taxes, consumption, travel, transportation, medical systems, everything is in flux. We are held hostage by a few billionaires that would rather see us die, than provide basic medical equipment and supplies without profit. The buying and selling of stocks and commodities is still continuing apace, bailed out by those governments with the most to lose when it all comes crashing down.
Anxiety is a factor in this pandemic, precisely because everything is so nebulous and uncertain. Mental health workers who actually care for their patients are arranging for phone and Skype check-ins. This too is so important for many of us. I was advised to order some medications in a bigger supply, but already hypertension medications are experiencing supply chain issues as those with insurance have been able to get 6 month supplies.
Finally, friends have come through with phone calls, and FB chats, singalongs and virtual socializing. Love is also in the air.
But let us not lose sight of those of us, who have added susceptibility and dismiss them/ourselves as paranoics or hypochondriacs. The very absence of statements about our value to our country— to all countries , shows me that people should take this seriously, because we persons with disabilities too, would love to live and thrive in a post- COVID 19 world, rather than be victims of social ethos in which eugenicist culls by virus are going to be “the final solution”.
The United Nations has declared February 20th as World Social Justice day. In this era, social justice is like a carrot dangling before humanity while the vast majority of us are being beaten with sticks. So, social justice is an aspirational desire, a desire to remediate the wrongs of past times and current ways of ruling. I hope every single day, to see signs of positive and crucial social change.
In the area of women’s rights, even as we expand our notions of “femininity” and “masculinity” to include non-biologically sexed people, there is so much to do. Women and trans-women who are the victims of violence all over the world, are really at the bottom of the barrel. Our lives are de facto worthless, if we are Indigenous, South Asian, of African descent, East Asian, even more so.
This is so evident when we examine murder statistics (flawed and manipulated, though statistical data may be) from Mexico ( 2,795 in 2017), India (between 8000-5000 dowry deaths per year), South Africa (2930 in 2017-18 ), Spain ( over one thousand women killed in 8 years), Australia ( approximately 52 women per year) and the United States (approximately 1600 in 2018 ) and Canada (118 in 11 months in 2018, or 1 murder every 2.5 days ). In Cuba, pressure from local women’s organizations and activists is pushing for statistics on violence against women and a new integrated law of gender violence that will allow the state and the social services sector to keep track of violence aginst women. 2016 saw about 50 women murdered by male partners and intimates.
Rape statistics and/ or lack of, are also horrifying. In India, over 300, 000 are reported to police, leaving another 3 million unreported annually, as experts have pointed out, due to social and familial stigma, rape and sexual assault are the most under-reported crimes. In Mexico, thousands of women are violated daily with a reported rape rate of 12.6 per 100, 000 and about 3 million reported rapes in the 2010-2015 period.
As we are well aware, rape and sexually motivated violence is the least reported, with official figures representing approximately 10% of actual cases globally. Biased and misogynist legal systems and law enforcement in every country in the world, makes sure that it will remain that way. In Canada, one in three women experiences some kind of partner assault in her lifetime. The violence against women of Indigenous descent has reached horrific proportions, a genocidal violence that is rooted in the making invisible of native cultures and nations.
Discussing women’s wages, social and economic opportunities and acquisitive power, we see that the gender gap prevails here as well throughout the world. I have seen how the gap in wages translates in housing vulnerability for women at even higher rates than for men, in one example. Disproportionately, women also shoulder child rearing and housing costs as well as actual child-care.
In terms of other social justice issues, and there are so many— racism and imperialism rank among the highest impactful issues on the planet. In North America and Europe, racism saves employers, corporations and states trillions of dollars in historical and current under/unemployment, substandard housing and education. Racism makes huge profits for war industries, law enforcement related industries and municipal developers, furnishing companies that supply concentration camps and public and private prisons, and has fostered generations of white supremacist involvement in armed foreces and armed law enforcement.
It is almost incomprehensible the ways in which “othering” and inferiorizing the lives of billions of people for the profit of a few white men and their families— global oligarchs— shapes our world view through the media and social networks. As many have argued the intersection of oppressions by race and gender as well as social class, account for the ways our very lives are shaped and the type of opportunities that may be afforded to us.
If we add disability to the mix, poverty is an almost constant factor in the lives of people with serious and or chronic health conditions, as employment seems the last place in our lives where we might expect accomodation, though we live in capitalist societies that measure all our worth in terms of what we “do” (read, earn) occupationally.
Even the left plays into this bourgeois meritocracy. That is why, we so rarely see images of disabled people speaking about the complexity of their lives or political belliefs. They ( by which I mean, we), are relegated to speaking only about “disability”. Having an affiliation to paid, and well-paid employment at that, certainly gives “privilege” to those who are able-bodied but within our own social class.
These horrific underlying social inequalities shape every aspect of our lives. Women, not safe in their homes, or on the streets, live in a state of permanent alert that starts when we are little children. People of colour, indigenous people, colonized communities and nations, are constantly prevented from lifting the yoke of subjugation that presses down on our human capacity and potential.
Social Justice Day is a day to take stock of all the work we have done in our countries and globally, while confronting the fact that we have barely begun to tackle the enormous overarching issues that literally, shape, and delimit our lives.
I’ll leave you with a poem from a writer whose words echoed in my head and got me through the cult-like environment of law school so many years ago. Chrystos is a Menominee lesbian poet whose work addresses our real lives. Instead of growing up on the reservation, she was reared in the city around Black, Latino, Asian, and White people, and identifies herself as an Urban Indian.
MAYBE WE SHOULDN’T MEET
IF THERE ARE NO THIRD WORLD WOMEN HERE
How can you miss our brown & golden
a thin red scream
in this sea of pink
But we’re here
meeting & didn’t contact the Black Lesbians or G.A.L.A. or Gay American Indians or the Disabled Women’s Coalition or Gay Asians or anyone I know
You’re the ones who don’t print your signs in Spanish or Chinese or any way but how you talk
You’re the ones standing three feet away from a Black woman saying
There are no Third World women here
Do you think we are Martians
All those workshops on racism won’t help you open your eyes & see how you don’t even see us
How can we come to your meetings ifwe are invisible
Don’t look at me with guilt Don’t apologize Don’t struggle with the problem of racism like algebra
Don’t write a paper on it for me to read or hold a meeting in
which you discuss what to do to get us to come to your
time & your place
We’re not your problems to understand & trivialize
We don’t line up in your filing cabinets under “R” for rights
Don t make the racist assumption that the issue of racism
Like many people with poorly understood disabilities and conditions, I have heard every possible advice that people’s grandmothers, parents, aunts, doctors, naturopaths, second cousins, and their neighbours might possibly have to offer.
Headache. Oh, just do this, and it will go away. My aunt/doctor/grandmother used to have them. but after they did this one thing, they went away forever!
Endometriosis/Adenomyosis. Oh poor you, your period’s hurting you, huh? I never had that problem, but my best friend in high school had wicked cramps. She used to get to stay off school! She loved it!
Yes, I did my naturopathic training in a clearing in the forest. All the fairies and elves sang and danced in a circle after i was intiated. That’s why I don’t have a certificate, see, fairies don’t give them.
Anyway. Basically, you take off your underpants and then we’ll have you squat over an aromatic fire heaped with herbs that will cleanse your yoni, and enter into your womb, purifying it and getting rid of the growths very gently (read over numerous sessions at $150/session).
Yes, I’m aware this is unusual, but it’s often when we’re excruciating pain-either mental or physical- that we’re willing to take risks! That’s why I’ve been trained as well by a Mayan shaman!
You’re in severe chronic pain? Try to verbalize what that might sound like! (Sobbing and groaning). Good, good. Now direct that healing sound to the spot that hurts most. You know, you might be paralysed facially because you need to learn how to express yourself differently. This is a teaching!
Arthritis. Why dont you try drinking a shot of rum every morning on an empty stomach that had garlic steeping in it for a month? My mother/gardener/veterinarian does that and she swears by it!
Why don’t you try doing weights and conditioning the joints that hurt? Because they hurt too much to hold the weights, obviously! Have you tried skating? It really strengthens the ankles!
Have you tried drinking green tea at 4 hour intervals? It will burn fat and decrease inflammation! While turning me into more of a raving insomniac than I already am?
If you wear shoes with lumpy gel points, it’s like a constant massage on your feet as you walk. Totally cleared up my grandmother’s foot pain, you must try it!
Having fatigue and inflammation? My guru and I drink our own pee and we’ve found it worked wonders for our wellness and skin issues. Have you considered it? You must start low and slow, you know!
Then there are the doctors
These are the people we generally trust to be able to help, guide and minister to us in some of the most terrible and bewildering times of our lives. If you are a person who doesn’t go to the doctor much, perhaps you have a friendly and benign relationshp with them. But, if you have complex and unclear multi-systemic issues, going to the doctor can provide you with the same laundry list of offerings as those above—except these ones come with warnings and side effects as long as your arm.
Got a headache? Try every kind of migraine abortificient whether the side effects are well-known or not. Take Gravol for the nausea. If you have chronic nausea, you can take Ginger Gravol!
Swollen arthritic joints ? Try Lyrica and gabapentin which will help with the nerve pain caused by discs compressing onto your nerve and pinching it.
Chronic pain? Have you tried trazadone, tramadol, fentenyl patches, hydro-morphone? And then they bemoan the opiod crisis.
Feeling depressed? Try paxil, effexor, celexa, amitriptyline, etc, etc, and if you feel even more anxious than you can have Xanax. If the rebound anxiety from the Xanax unexpectedly kicks you in the butt then you can pop an Ativan. If the Ativan doesn’t do the trick than you can have a long acting clonazepam or klonopin as it’s sometimes known!
Have you been offered medicines/ treatments, where the prescribing doctor reassures you, oh we don’t really know how it works yet, but I’m sure you’ll be fine?
All of these interventions and remedies purport to bring some relief and ease to me and people like me. I have been offered every one and many others, and have even tried some, which benefited me for short periods. But I have come to realize through the experience of being ill and my frequent interaction with the medical system, that all these enigmas of blood, flesh, nerves, bone which are me— are always complicated by that MEness, because my brown skin, non-Anglo name, and gender and sexuality are as much factors in my health care— along with class and percieved class status— as in everyone else’s. How could it not be otherwise?
We are ourselves engaged in multiple and sometimes overlapping constellations of social relations wherever and who ever we are.
They are bound to be the foundation through which other relationships are built, in particular the reciept of goods and services, of which health care unfortunately is one.
Health care ought to be a basic human right administered by and carried out by those who fully understand the human in human rights.
But until that day comes, we are doomed to vie for human status in front of the masters (whether they be male or female or non-binary or trans) of our health care— encased in our bodies with their telling tales of burning hands and feet, flu-like symptom, chronic and sudden fatigue, disabling insomnia, erupting skin, sudden weight loss or gain. Encased in our bodies with their headaches and paralysis, their swollen knees and aching hips, stiff necks, and even stiffer upper lips!
If you are interested in this topic, I’ll be following up in future posts from time to time!
I’ll leave you with some good and much needed discussions about the multiple evils plaguing our health care systems in both the U.S. and Canada.
It’s been four years since I lost my face. The one I was born with. The one in my school photos and in the pre-selfie days of social photos.
I have a new one, it’s true. The eye squinting and tight, the neck muscles straining beisde the affected ear. The grimacing smile, the half-kiss.
I loved to joke and smile and laugh— but now laughter is literally, painful— my smile looks like a grimace, and my attempts to dress up, take into account the state of my face. My voice has changed, speaking becomes tiring, and I sometimes slur my words when overtired or stressed. The headaches are frequent.
I rarely look in the mirror, and reading the accounts of many Bell’s sufferers, very few of us do. I have not only entered my mid-life, but the the invisible life afforded to women of a certain age and appearance.
Learning to live with intrusive stares and comments over the past few years has been a life-changer. i have learned a lot about cultural responses to facial disfigurement and disability. In Canada, people stare but rarely comment, except to ask if i have had a stroke.
British reserve and colonial coldness generally merge, even in the medical profession. When I went to the Emergency Room, I do remember the doctor telling me that our former Prime Minister Jean Chretien and late Quebecois politician, Rene Levesque, had suffered Bell’s Palsy. Not particularly sympathetic or encouraging words for a relatively young woman, even one who is not white. But I see that my non-whiteness has afforded me a level of medical care far below white women of my education and social status.
In contrast, Mexico showed me a different approach to disability— many strangers came to speak to me about Bell’s Palsy, many people reassured me that things would get better, and in a land of stress and poverty, many people had familiarity with bell’s palsy. In a way, it was a relief to be there during the height of my disfigurement. A much kinder environment.
I heard many compliments as my face began to lose the excessive tightness and paralysis, all of which encouraged a mind /body harrmony in the spirit of “getting better”. And indeed, my time in Mexico showed me the resilience of the human body and mind.
A second untreated relapse during a bizarre surgical experience, has resulted in permanent sykenisis. This is a condition of overactive muscles and nerves, where the healing of the previously damaged area has led to “crossed wires”. The solution to pain and tightness is then relaxation of overactive nerves and muscles, not the regeneration of nerves which is the first stage of healing from Bell’s Palsy. About 10-15 percent of people with Bell’s Palsy sustain permanent damage and synkinesis.
Bell’s Palsy has been linked to chronic Lyme disease in the 21st century, but before that, it’s aetiology was rather vague. Often affecting pregnant women, women in labour, small infants, and people experiencing extremely high stress, it’s becoming discussed more and more on Lyme websites and boards. Some famous celebrities have had the more common form of Bell’s— that experienced by 85-90 percent of the afflicted who experience spontaneous healing and regeneration of the seventh facial nerve.
This is the first time I have written about any aspect of my disabilities. And it is an important one, because in our superficial world, we are rarely given a second chance on our appearances. And when such an ethos is fueled by the discriminations of race, sexuality, etc. it is important to face the situation “head on”.
By calling out discrimination based on disability, we begin to envision a world where our faces are as beautiful as our hearts— not our looks.