Categories
Art Disability intersectionality racism

Patiently Brown: Misadventures in the medical system # 1

I am always being told what to do.

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! 

Or

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? 

Sore feet?

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

Barbara Hepworth, Hospitals, 1947-49

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? 

Patiently Brown, Kaushalya Bannerji, 2019

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.

https://www.wellesleyinstitute.com/wp-content/uploads/2012/02/Colour-Coded-Health-Care.pdf

https://medium.com/@isabellarosario/viral-tweet-highlights-disbelief-of-black-womens-pain-by-doctors-11107fbbcd89

https://www.vice.com/en_ca/article/wjzynb/after-the-white-doctor-tirade-doctors-of-colour-discuss-racism-on-the-job

Categories
Art Bell's Palsy Disability

Ringing the Bell on Facial Palsy

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.