Along the road to Oxford, sort of

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This park isn’t really along the road to Oxford, not in any purposeful way. But it is within the City of Bath, where I am enjoying a couple of days with my daughter in law, Georgina, and my granddaughter, Josie.

Georgie took me here yesterday for a bit of a stroll as I acclimate to the time difference, and in honor of the first day of Summer. The air was fresh and filled with birdsong, which was perfect.

The park is 57 acres of mixed usage, designed by Edward Davis in 1830, and paid for by the wealthy landowners of Bath in the hope that it would provide tourists with another attraction to keep them, and their pounds sterling, coming to town; this, as the popularity of the ancient Roman baths seemed to be losing some of their popularity. The park was opened by Queen Victoria herself when she was only 11 years old and the ceremony was apparently grand and well promoted.

This is the Great Dell
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which is a lovely area along the hillside with a remote, somewhat wild feel to it.

This is the “aerial walkway” of the Great Dell, which was designed to make the trail more accessible while utilizing a steep hillside which was overgrown.
great_dell_finished_007 Unfortunately,
it isn’t completed yet so folks with limited mobility are not able to experience the peace this section of the park offers from the walkway as intended. Sadly, I couldn’t find any reference to a date for planned completion.

However,
osbornejupiters Jupiter’s Head is on the bottom land of the Dell and can be looked up to by one and all. This statue was designed by John Osborne and curiously, was already in its current place when the park designer presented his plan to the city Father’s for approval and funding, suggesting a bit of behind the scenes wheeling and dealing.

I have no idea why Jupiter and it doesn’t say. Perhaps Mr. Osborne felt a kinship which he needed to fully express. It’s an imposing visage, looking down at you, regardless.

Looking across the park one can see such a lovely view as thisimages
and there is a small chapel available for weddings, for those so inclined.

Georgie told me some fun stories of having worked in the children’s park while a teenager. There used to be a carnival type attraction and she found it not only a place to make some money, but a place to make some interesting friends.

Nowadays, there is a climbing structure children-playing-on-a-summers-day-in-royal-victoria-park-bath-spa-d137x0 of rather grand proportions

and a skater’s hill,.Unknown
something I imagine the 11 year old Victoria would have looked longingly upon.

The park is an oasis of green and colorful entertainment in the midst of the sameness of the monotone beige surround which, upon closer inspection, becomes building after building of that locally quarried “Bathstone”,which is actually Oolitic limestone, from the Paleolithic area, known for its honey color.

Beautiful historic buildings to be sure (it’s a genuinely lovely city), but overwhelmingly beige. Golden beige, darker beige, brownish beige. Beige. With laws and fines in place to keep it historically so.
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The beige City of Bath (with a few rosy rooftops)

Thoughts on Three Penny Opera at the National

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George Ikediashi, the Balladeer, with his wondrous baritone voice

I may have been sleep deprived and jet lagged but this colorful, cartoony take on Bertolt Brech’ts Three Penny Opera managed to keep me awake and engaged (except for a brief near narcoleptic moment toward the end of the first act).

Simon Stephens’s new adaptation is pretty much faithful to the text, though he updated several references to the war, Kandahar, modern British politics, and women’s role, thus managing to recycle the play for contemporary audiences.

I always believe it’s the ensemble in a Brecht show which deserves to be singled out first, and this one was extraordinarily good as well as being one of the most genuinely diverse casts I have seen on a stage anywhere in years, right down to the exceptional work of James Beddard, as Mathias, a role not usually given to an actor with cerebral palsy.
imageThis was not publicity stunt but a bit of inspired casting. Mr. Beddard’s sleazy presence in his chair, rolling here and there at crucial moments to add juicy zingers in his unique vocalization style, made the crew of misfits and broken London poor folk all that more intimidating. His, “You know what I said, you fucking cunt!”, to Macheath, who denied he understood him while in jail was brilliant.

George Ikediashi, pictured above, as the Balladeer, opened the show with a measured, gorgeous, full voiced “Mac the Knife”, as the ensemble brought the lean, stark set to stage. Very post dramatic, very Brechtian, quite effective and funny.

My favorite part of the show was the dynamic and beautifully choreographed singing duel/dance between two of Macheath’s women: his “wife” Polly Peachum (played by Rosalie Craig, with a wonderful singing voice) and his scene stealing lover, Lucy Brown (the very talented Debbie Kurup).images
Debbie Kurup, left, as Lucy Brown dominates Rosalie Craig, Polly Peachum

You need a strong actor to carry off Macheath. Someone who can be oily charming, smooth but also scary as hell. Rory Kinnear managed to be charming and smooth but he just didn’t have the presence and undercurrent of evil needed to make Macheath more than just a two dimensional bad boy. images-1
a “pretty death” by a pretty boy

Still, he had a pleasant enough voice to hold his own in the songs and his technique is so good that I just decided to roll with it.

Much more effective as a really nasty shadow figure was the brilliant Nick Holder, who played the cross dressing Mr. Peachum, an under lord who really enjoys torturing people. And Peter de Jersey’s Chief Inspector “Tiger” Brown was equally menacing, while also managing to be genuinely poignant as Macheath’s closeted lover who betrays him in a fit of jealousy after finding out that his own “sweet” daughter, Lucy Brown, has been one of Mac’s many grateful conquests.
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Nick Holder as Mr. Peachum, left, with the scene stealing Peter de Jersey, as Chief Inspector Tiger Brown

Also excellent was Sharon Small as Jenny Diver.images-4
Pirate Jenny shares her side of the story, betrayal and all

Simon Stephens’s did what a few other adaptors have done, which is give the Pirate Jenny song to Polly Peachum in the first act. While Ms. Craig sang it beautifully, I really wanted to hear Jenny herself sing her own story. Those lyrics help set up her character and give us insight into her internal mind. By giving the Pirate Jenny song to Polly, we don’t get to actually meet Jenny until act two, and sure, the back story is ultimately fed to us, but something is missing through this approach. Let the woman have her own story, male script adaptor!

The band was motley and in fine form throughout. They moved seamlessly in and out of the action, filling out the numbers, and providing a Weimer sounding cabaret touch which I believe Mr. Weill would have been happy with. The costumes were colorful and very cartoonish, while a bit too “new purchase but distressed” in an effort to make them look ravaged and poor.

All in all, it was an enjoyable evening of quality theatre done by professionals who truly know their craft, presented in the upmarket Olivier Theatre, a space not necessarily Brechtian, but suited to many uses and one hell of a venue. I found the production a wonderful thing to experience. I look forward to bringing some of that energy home with me.

Jet lag, lost luggage and high tea, oh my!

Left Salem by car at 8:00 am, made it to PDX in excellent time. As I waited in the looooooong line to check in I decided to put my two travel guides and my vitamins/medications bag into my checked bag because they were weighing me down. Bad idea.

Why? Because, when they weighed my suitcase it weighed 53 pounds, which is three pounds over.
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offending suitcase

Which, after opening the bag and removing said travel guides and vitamins/medications (while disgruntled fellow passengers waited impatiently and signaled their unhappiness with my stupidity) was the very weight differential at fault. So I put them back into my already stuffed daypack so that I could enjoy schlepping that bag and my computer bag through airport after airport.

Aside: I usually travel lightly, often with only a carry on. But working out my Oxford attire alongside my trekking in Ireland gear (boots, poles, down bag, waterproof gear, hat, gloves, etc) so that it would all fit in one bag was a challenge. One bag: two very different needs. Still, I was pleased when I was able to mix and match and make it all work. One bag. One heavy, ugly bag, but one bag.

Portland flight on Alaska was a breeze. Barely 30 minutes in the air, which flew by fast because I was seated next to an amazing woman on her way to her 20th high school reunion and she had packed a lot into those twenty years.

Twice divorced, first, from a man with whom she had a child, who then decided he had always been a woman and transitioned. She stuck it out for a long time but things were too challenging for all of them and they divorced. Still, friends, they seem to be co-parenting with love and equanimity.

Her second marriage, only two years, was with a woman. A well known chef who shall remain nameless because she isn’t “out”. But that marriage was plagued with passion, drama, power struggles, more passion, deep love, and more drama. It sounded somewhat familiar to me so we laughed wryly in that way that kindred spirits often do.

And then we were touching down.

SeaTac was a race. airport-seatac Less than an hour from main terminal to the South Satellite where I was switching to British Airways, those heavy bags reminding me every moment of why I had tried to put then in my checked luggage.

The flight was packed. I was in the very last row. Yes, that dreaded very last row where your seat doesn’t go back far enough to relax and you’re going to be stuck in it for 10 hours.

British Airways has the kindness to give you free movies so I binged, watching The Dutch Girl (in honor of my Alaska seat mate and something I am honestly to tired right now in my jet lagged state to remember.

I chatted a bit with the gentleman from India who was seated next to me and then he slept and I read. They fed us, they watered us. I got up several times, apologizing for waking the nice man, just so I could do yoga stretches in the back next to the toilets.

Finally, London arrived:
aerial london

It took nearly two hours to get through the border check. Such lines! So many people coming into England. Finally made it through and headed, like a zombie, to collect my bag so that I could clear customs.

No bag. I waited. No bag. I waited some more, in denial. No bag.

I trudged exhaustedly to the desk to report my bag missing, where they told me they’d been trying to call me to tell me they knew it was missing but my phone wasn’t working.

So, I made my way, with less to haul (“always look on the bright side of life”, cue Monty Python here”) to my hotel, where I connected with my step-daughter, Georgie, who said, “We have reservations for high tea at the AquaShard”. So I took a shower, put back on my travel fragrant clothes, and away we went. high tea Georgie and Nyla do high tea

Heading for the National Theatre next for Three Penny Opera, NOT wearing the tasteful black dress I’d packed for such things, but my good old denim jeans and tee shirt. Very Brechtian, I’ve decided.

Lore’ Lixenberg’s Salute to Bees

This will be stimulating. Lore’ Lixenberg, singing Hans Eisler’s “Hollywood Elegies” and the world premiere of newly commissioned settings by composers Niels Ronsholdt and Richard Thomas, based on translations by Tom Kuhn (who will also be facilitating a session roundtable with Tony Kushner and the rest of us) and David Constantine.

Here is a little taste of Ms. Lixenberg, mezzo-soprano, having fun.

Why, how, Oxford now? The academic answer to the question put before me

I share the following, created by request, for those of you who wondered.

Candidate Narrative: I am a 60 year old woman with disabilities
nyla Nyla McCarthy
and like Bertolt Brecht’s most significant collaborator, Margarete Steffin (and unlike the upper middle class Brecht himself), I was born into poverty and the working class.

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Margarete Steffin, Brecht’s often overlooked co-creator

I have devoted more than 40 of my years to a radical pedagogy that cultivates political instincts, promoting social activism in my fellow actors, as well as within my students, promoting transgressive cultural shifts within the professional and bureaucratic arenas.

In my early years, I experimented with puppets, movement, multi-media theatre and performance art, incorporating independent auditory semiotics for the purpose of eliciting political awareness within a framework of audience participation.

The Puppet Farms, co-created in the mid 1970’s with my then partner,  Guignol Master Gabriel Ponti, was designed around this dialectic model.
ponti puppets Gabriel Ponti exploring the message

We facilitated audience engagement in locations as diverse as the Oregon Country Fair, the San Francisco wharfs, the nationally acclaimed Woodmen of the World (WOW) hall and the 1975 National Convention of the Vietnam Veterans against the War.

During the 1980’s, coming to understand that an alternative performance dimension need not require text exclusively to be viewed as relevant, I chose to collaborate with a group of professionals curious to explore the possibilities found within integrating practical and theoretical training.

This resulted in the critically lauded Actor’s Production Company (ProdCo) of Portland, Oregon. centenary wilbur (Centenary Wilbur Church, home of the the Actor’s Production Company ProdCo), the late, great Peter Fornara, Artistic Director)

ProdCo experimented with fusing classically structured text with elements of Brechtian dialectic, Delsarte’ movement and Meisner technique  to create a fully immersive theatre experience.

The notion of performance for us at that time meant a furtherance of the idea of ensemble, created via the interactions that take place within the theatre itself, from the arrival of the first spectator, through the introduction of each member of the cast,  not concluding until the last person leaves the theater.

The success of this experimentation was most evident through our productions of Friedrich Karl Waechter’s anarchistic portrayal of education in School for Clowns;
school for clowns from left, Gary Cole, Marla Kauffman, Nyla McCarthy, David Owens (1978)

Steve Gooch’s critical analysis of the male dominant class system and colonization portrayed within his powerful Female Transport was followed by David Rabe’s scathing indictment of the sexualization of innocence In the Boom Boom Room.

Nyla McCarthy, Laurel Nagode boom boom room
boom boom Chrissy Nyla McCarthy, Chrissy (1978)

boom boom duo from left,
Laurel Nagode, Nyla McCarthy (1978)

and among the cartoonish characterizations of power and politics represented within Elizabeth 1 created by Paul Foster, founder of La Mama Theatre Collective, New York’s early avant garde’ cabaret.
Elizabeth 1
Left, Nyla McCarthy as Lazarus Tucker, the Money Lender. With Laurel Nagode, center, and Jan Carothers, right.
Elizabeth 1, ProdCo (1979)

There were several theatre’s in Portland, Oregon offering a focus on plot and character driven method acting throughout the 80’s, allowing me to continue to hone my more traditional craft and technique. Among the most memorable: Carrie in Lillian Hellman’s Toys in the Attic, directed by Alana Beth Lipp 601712_10201390822361991_1724166841_n
Vana O’Brien and Nyla McCarthy (1987)

Kathleen Scott in Ted Tally’s Terra Nova, Rebecca Adams, Director (1986) and Patient Griselda in Caryl Churchill’s Top Girls (1985)
top girls PT Nyla McCarthy
at the dinner party, Top Girls, directed by Linda Janke

Susan in David Rabe’s Plenty, Rebecca Adams, Director
plenty poster Nyla McCarthy, 1985
all at Artist Repertory Theatre (now a LORT theatre);

Maire in the hauntingly beautiful Translations by Brian Friel, John Zagone, Director
Translations
Joe Cronin and Nyla McCarthy, Translations, 1985

at Portland Civic Theatre’s Summer Repertory
and the seemingly innocent Felicity Cunningham of Tom Stoppard’s hilarious The Real Inspector Hound, directed by Steve Smith (1983).
* * * * *
I also earned my Actor’s Equity card during this period and brought to life both Lysistrata, James Cox, Director
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from left, Ross Huffman-Kerr, Nyla McCarthy

and Iocasta for the Northwest Classic Greek Theatre Company, Keith Scales, Director as well as Catherine in Larry Shue’s The Foreigner for the Willamette Repertory Theatre, now Portland Center Stage, directed by Brenda Nause.

It was worth almost getting shot by the Portland Police, who had received a call regarding an “armed body of transients marching across the Burnside Bridge toward downtown” to get this still photo during the poster shoot of God Rest Ye Merry Gentleman, an original Portland Labor Players script about the Wobblies, written and directed by Melinda Pittman
Labor Players
Nyla McCarthy hiding out, third from the right, back row, (1978)

I enjoyed portraying the female lead, Betty, in director Gus Van Sant’s award winning debut film about poet Walt Curtis, unrequited gay love and poverty, Mala Noche.

(1985)

Then it’s the 90’s and I am co-creating Cygnet Productions with Louanne Moldovan. We design a small collaborative theatre committed to literary pursuits and social justice, where our lean and solid production of the Bertolt Brecht cabaret, In Dark Times, plays to sold out audiences. Then, Susan Sontag’s The Way We Live Now, directed by Louanne  brings audiences nightly to tears.
In Dark times posterin dark times cast Ted Roisum, Nyla McCarthy, Keith Scales (1991)

However, during this same time I began to switch my energies from performance and direction into an infiltration of the social service system, committed to manifesting progressive social change while emancipating the most oppressed of the oppressed: the disabled, particularly individuals with intellectual and developmental disabilities.

Through donning my daily character “The Bureaucrat”,
I become successful at convincing leaders within the government of the State of Oregon to put me in charge of the statewide training and abuse prevention program serving the elderly and individuals with disabilities receiving state funded services. head shot from emcee pic
Nyla McCarthy, the Bureaucrat as Emcee of the Connecting Communities Conference, Portland, Oregon (2012)

Influenced heavily by Brecht’s Lehrstuck “learning plays” model, I create a comprehensive abuse education and prevention training program, travelling across the state of Oregon, engaging and empowering citizens via open forums, to envision more direct and creative ways of designing curriculum and social marketing campaigns aimed at reporting and eliminating abuse.
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My forums, like the Lehrstuck themselves, were pedagogically designed to provoke emancipatory political discussion and analysis. My goal was for these events to culminate in spectator/participants offering up solutions to the cultural and systemic problems of abuse experienced by those perceived as not having, and indeed, NOT having, power.

I further employed the learning plays model while working directly with my peer group, individuals with disabilities, and with members of their support networks, to distinguish social from asocial behaviors while identifying acts of abuse, whether psychological, economic or physical.
abuse woman

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I was mostly happy and quite successful in this arena for nearly 15 years, supported quietly by leaders as committed to social empowerment as I was. The program I created was received enthusiastically by the people, heralded as “a model program, innovative and impactful” on the national level and resulted in videos, multi-media educational campaigns and model books including scripts.

I also authored a variety of trainings during these years, including the facilitative curriculum, Reaching Within, an analysis of ethics and inter-cultural equity for professionals; the video training series, The Choices We Make, focused on power, choice and covert oppression within the social service system by those in control and a national model Abuse Investigators Core Competencies Training Institute.

They were exciting, creative years in which I successfully married my art, my values, and the needs identified by the citizens of Oregon, all while working somewhat rogue within the bureaucratic State system. Throughout that decade and a half, I succeeded in being a meaningful resource to hundreds of marginalized individuals by facilitating the acquisition of ideologies and skillsets designed to demand and support Self Determination, resulting in a strengthening of their collective voice.

This expanded into national level activism until, without warning, a negative, economically driven shift occurred within the State of Oregon’s governing hierarchy. Good people doing good work fled or were driven from their positions. I was deemed too revolutionary for this new order. My popular and successful program was abruptly terminated and the citizen empowerment materials were literally destroyed.
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The creative home turned institution. The dream is gone

People across the state protested in outrage. I soon resigned in disgust and protest.

Which brings me to today.

I am returning to the performing and literary arts as a much richer, more astute, determined advocate.
feb 2016 nyla Nyla McCarthy, 2016

I am convinced (having experienced it) that the power to question and destabilize the spectator’s construction of identity, as well as of the social structure itself, lies within the power of performance.

My lifelong experiences, combined with an increasing awareness that feminist theory, queer theory, and postcolonial theatre scholarship (which is a relatively emergent field) are evolving lead me to believe we MUST demand the inclusion of a greater analysis of the social and economic impact of disability into our intersectional analysis, while indeed, we must also work for a greater inclusion of artists with disabilities themselves into our work.Dark-Horse-Snakebite-2015-700x455
Dark Horse Theatre, Snakebite, modeling how to do it

In conclusion, it is apparent that theatre, film and performance, including that which has heretofore been defined as Brechtian or dialectic in nature, has colluded, however unconsciously, in the ongoing marginalization of the very populations I have worked to empower: people with disabilities, the elderly and those living in poverty. One need only conduct a sober international field study of theatres, scripts, those movies generating big box office and the electronic media to see the truth of this.

I welcome the opportunity to join with colleagues at St. Hugh’s College in Oxford this summer to explore and generate collaboration toward a further, more meaningful, inclusion. The performance aesthetic demands it. Thank you for the invitation.

In solidarity I remain.

Coincidence? What would Brecht Say?

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Is it a coincidence that Simon Stephens’ gritty new adaptation of Brecht’s Three Penny Opera is playing at the National Theatre, London at the same time that Mr. Stephens and a group of fellows will be addressing my peer cohort at Oxford about the saliency of recycling Brecht for today’s audiences?

I doubt it, but I don’t much care either way. I’m jazzed about getting to see this production
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and then collaborating with my Oxford posse on future possibilities.

Oh, and well done National Theatre. Casting an actor with a disability in a role not specifically calling for such is inclusive and a smart thing to do.
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Good step in the right direction.

Visit link below to read review. Sorry, but you’ll have to copy and paste in your browser. I can’t seem to make the link active. It’s worth the extra little step–it’s a good read.

http://www.timeout.com/london/theatre/the-threepenny-opera-1

St. Hugh’s College, aka “The Nutcracker Suite”

Who was St. Hugh? I had to look him up.

Turns out he’s was a 13th century Bishop, originally Hugh of Avalon, who, at the time of the reformation, was the second best known English saint after Thomas Becket.

Hugh stood up to King Henry II and declared his independence from him, even though it was the King who had established him in his Carthusian Charterhouse as prior. Henry apparently had done this as partial penance for the murder of Becket. Hugh, clearly good with those emotional types, managed to stay alive and do good work for the rest of his life, for which he was ultimately canonized.

St. Hugh is the patron saint of sick children, sick people, shoemakers (why not?) and swans.
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He is also a direct ancestor of good old Elizabeth Wordsworth, niece of poet William Wordsworth, and the founder of the college. Elizabeth, who had herself been educated at home since Oxford was not a terribly accessible place for women in those days, wished to create an institution of learning for women “who find the charges of the present Halls at Oxford and Cambridge (even the most moderate) beyond their means”.

In 1866, after inheriting money from her father, Bishop of London, she set up the school.
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The wonderful woman in her prime.

St. Hugh’s College is now considered one of the more beautiful among the Oxford constituent colleges, having fourteen and one half acres of beautiful garden and landscape.
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All of which I am looking forward to seeing.

Interestingly, at the outbreak of World War II, St. Hugh’s College was requisitioned by the military for use as a hospital for head injuries. It was known by locals and doctor’s on site as “the Nutcracker Suite”. Nice.
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The Nutcracker Suite going about cracking those nuts

(Being a survivor of a traumatic head injury, I find the coincidence of heading there myself rather intriguing).

And now, from their own marketing materials: “St Hugh’s is unusual amongst Oxford colleges in guaranteeing undergraduates accommodation on site for all years of their course”.
st hughs front

I am finding that to be true since more than half of my courses will be held there. As a result, I also will be “accommodated” there, sleeping in a 150 year old private dorm room, sharing a shower and bathrooms with my peers and hoping to soak up some of the same kind of inspirations that fueled the dreams of
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Aung San Suu Kyi, Nobel Prize Winner and alumnus extraordinaire, who was accommodated there before me.

St. Hugh’s, I’m happy to meet you.

Me Before You, a trope of crap

It seems “Me Before You” is raising a sea of voices. I think that’s good. I’ve read several, including a recent one from Allegra Keys, who writes eloquently. She mentions she can’t address what it’s like to think about life pre-disability so can’t comment on the “wanting to be dead” aspect of the protagonist.

Well, I can.

I haven’t read the book nor am I likely to see the film after having seen those mediocre trailers. I have limited time; Hollywood dreck is something which doesn’t fit into it.

But I can speak to the truth of wishing I were dead following a disabling accident. This is going to be a longer post so tune out now if you choose. If you stay, thanks for coming along for the ride.

I was 13. I began to rouse from a coma in which people were discussing me as if I were already dead. I realized that I couldn’t move, couldn’t open my eyes, couldn’t speak. I didn’t even yet get that I was hooked up to four different tubes.
coma 1
(someone else’s unfortunate experience, no pix of mine)

But I could hear what they were saying and it wasn’t good.

“Poor thing. Maybe it’s better if she just passes over”, someone, a nurse? was saying. “She’ll never be the same. She’s probably got brain damage. I heard the doctor say that she’ll likely be severely retarded after this”.

Those were confusing words and I drifted in and out for days, fragments just like that coming into my consciousness.

“Nyla, can you hear me? Please blink your eyes if you can.”

Man, I fought like hell to blink my eyes. I fought like hell to get back inside my body any way that I could. I struggled and struggled to remember how to do it. How do you blink your eyes? Why can’t I open my mouth? What is wrong with me?

Shapes moved past me. Energy forces came and went. I heard my mother’s voice once though the fog asking, “how much longer”?

Somehow, some way, at some lost point in time, I opened an eye. Barely, then fell back into the mist from the effort of doing so. But my mother and father were beside and had seen it. They screamed for the nurses, who came, checked me, and told them perhaps they’d imagined it. But I knew that I’d done it. I’d come partly back and I was determined to do it again.
coma 2
It feels just like this.

Flash forward two months. I am at last home. I have a Frankenstein scar, a wide ditch, actually, which runs ( mercifully), just behind my hairline (though I am still bald with mere stubble growing in).

I have a drain implanted in the back of my skull which is basically just linen sticking out, oozing (to prevent infection from riddling my brain). It must be changed daily: an excruciating process which makes me cry as it is dragged, skin sticking to it, out of my head, day after day, until finally my skull is numb there forever. I am officially a numbskull. Smile.

I then must wear a customized, army green, fiberglass helmet underneath my pitiful wig in order to protect my head because HALF of my forehead is missing. My forehead just dents inward. I spend hours staring at my brain pulsing beneath the thin membrane of skin which shelters it from the outside world. I find that amazing as well as frightening.

I speak like someone who has had a stroke. Words come in strange configurations. I think I’m making sense as these thoughts come out of my mouth but the look on people’s faces let me know that I am not. My brain is rewiring itself slowly and sometimes, apparently, the wires cross.

I literally have to re-train my body to shit. It took a doctor to help because I just couldn’t remember how to push and I kept ending up with impacted bowels.

Now, I am lucky and I know it. I did relearn how to walk, how to talk (though I still have a kind of verbal dyslexia when I am too fatigued), yes, even how to shit.

After a second brain surgery, they removed the last of the bone fragments from the tissue and screwed a plate into my forehead, closing that pulsing mystery.

Though I spent half a year in special education being ignored with the rest of my peers, I made it out of there. Some of my friends did not (and I vowed then to fight for them, my friends in that corner classroom hell, and I have).

But remember, I was only 13.

I had just had my first periods before the accident and they stopped completely. Without my hair I looked like a boy, albeit with a hideous Frankenstein scar from ear to ear. One I didn’t believe my hair could possibly ever cover.

No one wanted to be my friend. I developed permanent gran mal seizures as a result of the trauma, causing me to occasionally black out, lose control of my bladder, or worse, my bowels and limbs.

I was’t allowed to participate in extra curricular activities because they were afraid another impact would do me in. I couldn’t eat my lunch in the cafeteria with the other kids because they were afraid if I was jostled too soon too hard I would, indeed, become more “brain damaged”.

My family was thrown into deep poverty due to the costs of my hospital stays, two brain surgeries, specialists, equipment needs, etc, and my friends, we had been poor before. Dad’s mill job didn’t have sufficient insurance to cover such a catastrophic event for his step daughter. No one helped them.

I hated myself and I hated my life. I couldn’t see it ever getting any better. I was a freak, I was ugly. I believed no one would ever love me.

I wanted to die.

Once, in a fit of hysteria, my mother screamed at me, “This is all your fault, this poverty we live in! If it wasn’t for you we’d be fine. I wish you’d died.”

“I wish I had, too.” I screamed back, hurting deeply but refusing to show the grief. Anger had more power. “I wish I was dead!”

And then, I realized that it was true. I wished I was dead. images

So, I do not find it hard to understand how someone whose life has been dramatically changed might feel that way. How they might think that being dead would be preferable to living. How they might fall into a void of depression which, even when it lifts, leave them imagining death as a better alternative.

Yet, I didn’t ultimately choose to die. Sorry, Hollywood!

I wasn’t rich and I didn’t fall in love with my carer yet still choose to off myself, and the system isn’t making big bucks out of my “tragedy” while negatively feeding public perceptions about what it means to become disabled when you began as an able bodied, or temporarily able bodied person. I lived.

Just like those of you who are reading this. Just like all of my friends with disabilities are doing. Just like the people I don’t know who have disabilities, or do not have disabilities, are doing. We are all living our lives to the best of our ability.

And you know something else? I’m glad I chose to live.

I think I’m a much better human than I might have been as a result of my experience. And as a bonus, I discovered theatre. I even got to share the stage with muppets. Bigger smile.bodywise Nyla McCarthy with muppets.
Children’s Theater Network and Kaiser Permanente in partnership with their touring health education program, Professor Bodywise’s Traveling Menagerie. 1986

Still, I can, and do, understand wanting to be dead when your life has fundamentally altered course from where you thought it might be headed. Especially as you grapple with the lack of meaningful inclusion and accommodation which exists in our world for people with disabilities, or confront the biases, prejudices, pity and dearth of real opportunities.

But, and this is a big but, I think making noise and fighting for rights and showing what talents and skills we possess while living and loving and laughing and growing is a much better choice than death.

So there, Hollywood. I hope you are listening.