“I am we, we are a year, we year, we are rest, we rest.” 

In winter 2024, Sop had a severe relapse of myalgic encephalomyelitis, also called chronic fatigue syndrome (ME/CFS), leaving them housebound in South East London.

That summer, in the days leading up to a friend’s birthday celebration, the artist rested carefully so they would be able to attend. The night before, they started taking what was touted as a “magic” pill for insomnia. They didn’t sleep at all and had to miss the party. But in a sleep-deprived haze, they wrote, as they described in a recent interview [1], “a solidarity rant, a kind of letter to other disabled people stuck indoors.” 

When Shape Arts, a UK disability arts organization, approached Sop with a commission, they decided to adapt the essay into a script for We Year, a mixed-media love letter to others living with energy-limiting conditions. The short film premieres at RestFest—a film festival and virtual space by and for the disability community—as part of a program co-organized by The Remote Body, Resting Up Collective, and Ort Gallery. 

With a poetic voiceover and ethereal soundscape, We Year immerses viewers in a chronic illness flare during a sweltering summer, blending decades-old archival footage from when Sop was well enough to move outside freely with recent phone footage shot at home. Shifting between past and present and between interior and exterior, the experience is at once isolating and unifying, claustrophobic and liberating. 

We Year also features 16mm direct animation, a technique that involves drawing and scratching moving images directly onto film stock rather than recording with a camera. Here, Sop used ink to overlay the orange stress bars from their Garmin watch across the entire film—a constant representation of their body that acts as a symbolic barrier between them and the audience. 

The following interview has been edited for length and clarity. 

When did you begin to think of yourself as an artist? 

I always wanted to be an artist. Even as a kid, when I was asked, “What do you want to be?”, I was like, “An artist!” I honestly have never thought about doing anything else. I grew up in the deep countryside, and there wasn’t much access to contemporary culture, although I was obsessed with music and music magazines. There was this teen music magazine called Smash Hits that I loved, and I made collages and scrapbooks of pop stars. When I was 13, I went to a big retrospective of the massive British artist David Hockney, who just died, and it was the first time that I’d seen contemporary art. It blew my mind, and that’s the first time I remember thinking, “Oh, this is something serious that I want to do.” 

What questions or themes does your art usually explore? 

I find it hard to make work that isn’t about my life and the things that I’m dealing with. What I do always ends up being ultra-personal. That’s not something that a lot of people do, necessarily. The act of living as a chronically ill person means that you have to live in the world in a very different way from people who are not chronically ill. Chronic illness is a fertile area for ideas. You’re living the life and thinking about the life at the same time. If you’re an artist or someone who thinks about things in conceptual ways, you can’t help but try and interpret your life into art-making, projects, or ideas. Everything’s interesting. It’s like living life wonky.

As a chronically ill person,  I can’t do a 9 to 5. I can’t necessarily keep to plans, and I can’t always do basic things, like sometimes even look after myself in a normal  way. The agency that I have is to interrogate what this life means and the challenges that it poses and what is interesting about that. What can I say that’s beyond how I would perhaps describe being sick to a stranger? Like, what’s within that? All of the work that I make—even if it looks not about that—is going to be about that.   

And then the other part of it is that I grew up in the field and was a tomboy covered in mud. My understanding of the world was through nature, and now I’m in a flat without a garden. I can see some trees in the park just over there, but quite often, I’m not well enough to go and hang out in the park. I am pretty obsessed with nature and the fact that I can’t get to it. I can’t really have that life currently.  

In your bio, you describe yourself as “a torn and crooked leaf, a root embedded in the dirt, a shoot reaching to the sky.” Would you please elaborate on what this means? 

When I wrote that bio, I was making work about my body being the same as the microbiome in the soil. “A torn and crooked leaf” is being chronically ill. “A root embedded in the dirt” is really what it sounds like, within the context of that specific work. And the “shoot reaching to the sky”—my work deals with pretty hefty emotions, but there’s always hope. My life is not a miserable life; it is hopeful, and I do believe there’s something so crucial in being chronically ill that you absolutely have to keep hope alive. It takes a lot of work to do that and to get there. It’s not easy, but it’s super important. If you have this restricted life, you absolutely have to shoot for the sky. Because time just goes on.  

What does working in crip time [2] look like for you? What are your long-term goals as an artist? 

If you’re truly working in crip time, it’s fairly impossible to have long-term goals. You haven’t really got a choice when you work. You can do your very best to carve out time or space. Currently, I have about a couple of hours in the early morning when I can manage to do something. My afternoons and evenings—I simply can’t make work then. If you have such a limited time to make work, the amount of work you make is going to be low. It will have to meet your capacity, and that doesn’t fit well with current art market production timelines or expectations. Sometimes, you can’t make something for a year because the thing that you should be working on—and the thing that is your work—is your health. That’s your full-time job.  

I deeply believe that making in crip time actually is truthful to the world. We would probably all be better off if we did. Really, it means making work to your capacity, and that can mean a lot of things. You don’t need to be ill to make to your capacity. 

It’s a more authentic timeline of meeting yourself where you’re at, rather than forcing yourself to meet arbitrary or toxic timelines. 

You haven’t chosen to have chronic illness—you’re forced into doing that. And I don’t think that’s a bad thing necessarily. Asking what would I like to do for my long-term goals—I find it very hard to answer because, first of all, I live, like, day to day and, second, when I think about what my long-term goals would be, it’s from the perspective of someone without a disability because I currently cannot see how I would be able to do more than what I’m doing unless I had an enormous amount of more support. 

How did you decide which media to work with for this project? 

Films and writing have always been the two mediums I mostly turn to, and actually they’re the most accessible things for me to do now, being housebound. When I was asked to make the film, I just didn’t have it at all in my means to film new work or leave the house, so I had to kind of figure out how to make a new work out of what I had, which was this personal essay I wrote about being stuck inside in the summer. I made the film throughout another summer of being stuck inside. A lot of chronically ill people turn their camera or phone or whatever onto their surroundings, so I had bits and bobs that I filmed. When I started making films, I would just film tons of different stuff. I had my little Hi8 video camera around the whole time, so I had lots of little clips that I hadn’t used, and I didn’t actually think that I was ever going to use them for anything. But that obviously wasn’t enough, and I didn’t really want to make a film which was just a film inside my house—there’s plenty of films like that. I had a whole bunch of old footage from the 90s. I digitized all of these tapes a few years ago, and they looked so great. A lot of that stuff was filmed out of the house, and then there were funny effects that I filmed which made it into the films. There’s a lot of blobs of color, which are actually motorway lights and ended up being this really nice kind of texture, which floated over and broke up some of the images.  

Hi8 and MiniDVs are the two cameras I was using in the past, so I have footage from both of those. And then there was 16mm direct animation. Each section of the film has a different animation running over it, but the animation is quite transparent, so it’s always there. It’s textural and has multiple meanings. And then I commissioned my friend to make the soundtrack. 

Would you elaborate on the meaning of the title of the film? 

The thing that’s turned me on most about this film is the fact that I can try and get “to year” and “yearing” adopted as a new way of describing spending all this time being sick. I think the word “year” is long enough for people to imagine, “Whoa, you are sick for a whole year. That’s a really long, unbearable time.” But then you make it into “yearing,” and then it could be even less than a year, but it’s probably closer to a year or multiple years. Then I was interested in what would happen if the years were then broken up with periods of being well, with relapses included as well.  

I find it really tiresome to have to explain the last five years of my life. So to not have to say, “Well, I was sick for a couple of years, housebound and bedbound, and then I got well again, and then I had a relapse”—it’s just like, “I was yearing.” I would love for it to become part of the lexicon of chronic illness.  

What does it mean to have “We Year” screened at RestFest? 

There’s this informal network of crip friends who work with each other. Not everyone works together, but we all know each other and there’s really close friendships within this group. They’re all small, crip-led organizations that have been made pretty much for the same purpose, which is remote events, screenings, and workshops. I was just really keen to connect and uplift all of these organizations. We created this program together, and I’m really proud of it. It’s been a lot of work, but it’s really nice making things with your friends. The access intimacy side of it all is real. Creating or programming with your friends is a very accessible way of making because we all understand each other and our capacities. I’ve said capacities a million times. 

You need to coin a new term for that as well. 

Okay, I’ll get on that for next time. 

We Year, through July 12 (if you start watching on June 28); RestFest Film Festival. “I am we, we are a year, we year, we are rest, we rest.” 

[1] “Interview with artist-filmmaker Sop + a Special Screening of their New Film.” RestFest, 2026,
https://restfest.substack.com/p/interview-with-artist-filmmaker-sop. 
[2] In her 2013 book Feminist, Queer, Crip, disability scholar Alison Kafer writes, “Rather than bend disabled bodies and minds to meet the clock, crip time bends the clock to meet disabled bodies and minds.” 

The house sits at the foot of a spring-green mountain, painted over with long cascading strokes of darker green, giving the impression of a verdant and peaceful setting. Contrast this to the brown ridge where the figure is sitting, huddled in a long sleeve jacket, hands tucked into pockets. The ridge is barren except for a single tree that is mostly bare branches with sparse pale-pink leaves.

Matthew Wong was a rising young painter who died of suicide on October 2, 2019. In a moving obituary by the New York Times, his mother explained that Mr. Wong “was on the autism spectrum, had Tourette’s syndrome and had grappled with depression since childhood.” This helps to explain the sense of isolation and longing in the painting, depicted by the solitary figure on a barren ridge, looking back at a house in lush green surroundings. The figure also appears to be physically cold, wrapped in long sleeve coat, hands tucked in pockets, with no skin showing, but is sadly separated from shelter by an icy white distance. This dynamic, amidst a landscape of majestic mountain rising into star-crowded sky, gives a sense of melancholy beauty and loneliness.

The title of the painting, “See you on the Other Side,” can be interpreted in numerous ways. Mr. Wong is known for incorporating mythical elements into his work, so is this the beginning of the hero’s journey? If the tree in the foreground is interpreted as being laden with pale pink flower buds, there is a sense of hope and promise that the figure is leaving home and will return triumphant on the other side. But the tree can also be seen as a representation of fall transitioning into winter, hanging onto a few withered leaves, as the last bright red autumnal leaf blows away. Is the figure heading away from the verdant house and mountain into winter, the season that classically symbolizes death? Does the other side refer to an afterlife? A third interpretation to consider is that the figure is not leaving the house, but actually trying to get there. In this case, on the other side would refer to crossing the vast white expanse where no path is marked and no help is in sight.

View the painting at Museum of Fine Arts Boston ➔

Matthew Wong’s Biography: www.matthewwongfoundation.org/biography
A previous version of this review was published in the NYU Literature, Arts, and Medicine Database.
Web image from www.matthewwongfoundation.org/

At age 18, Frida Kahlo suffered a catastrophic accident that had lifelong consequences. The school bus in which she was a passenger collided with a trolley. Her spinal column was broken in three places, as were her collarbone, two ribs, her right leg and foot. The treatment was to lie on her back for one month, enclosed in a plaster cast. In addition, Kahlo had polio as a child, and one leg was shorter and thinner than the other.

This stunning portrait demands the viewer’s attention. A woman, Frida Kahlo, looms in the foreground, central to the painting, facing the viewer fully frontal, a few tears spilling down her face. She is nude, except for a sheet that is wrapped around her foreshortened lower body, and the widely spaced straps of an upper-body corset. On the one hand, the figure is passive, gazing at us almost without expression, completely still, acceptant of the scattered nails and rigid column that penetrate her body. On the other hand, the beauty of her perfectly formed breasts and well-formed upper body, the eyes that engage the viewer, subtly convey the energy of the figure’s spirit and will. At this point in Kahlo’s life, the painful physical problems that had plagued her on and off for years were becoming unrelenting. Doctors prescribed a variety of orthopedic corsets to support her degenerating spine. The portrait seems to personify pain and simultaneously some level of tolerance for pain.

Many who view the painting are reminded of images of Christ on the cross. Kahlo was certainly long-suffering and represented the physical and emotional aspects of her condition in many of her works (for example, “Tree of Hope” and “Henry Ford Hospital“), but the energy and originality of her personality and artistic vision shine through. For interesting commentary on “The Broken Column,” see Hayden Herrera. Frida Kahlo: The Paintings (New York: Harper Perennial) 2002, pp. 180-183. Also useful is Gannit Ankori’s commentary in her book, Imaging Her Selves: Frida Kahlo’s Poetics of Identity and Fragmentation (Westport, Connecticut and London: Greenwood Press, 2002, pp. 114-119). Ankori points out that the vertical fissure of Kahlo’s body and the fissures in the earth surrounding her evoke violation — consistent with Kahlo’s statement that a metal rod had entered her hip and penetrated her vagina.

Web image from Wiki Commons

Japanese American artist Henry Sugimoto (1900-1990) depicted life in the Arkansas internment camps into which he and his entire family (including wife and child) and many others of Japanese descent were forced, following the Japanese attack on Pearl Harbor in 1941. Sugimoto’s life and painting were profoundly influenced by his incarceration. His subjects changed from landscapes to scenes of camp life and the Japanese emigration/immigration experience; these works often had social and political purpose. This scene is bleak, almost colorless; the sky is cloudy. Barracks stretch on either side of a narrow road in repetitive monotony. Too lone figures are the only people in sight and the only vegetation detectable, besides marsh grass, is the sketchy outline of treetops in the distance. Sugimoto told an interviewer that he used to go to the edge of the camp and try to imagine the Arkansas landscape beyond. 

Nisei Babies in Concentration Camp

Children were born during the 1940s internment of Japanese Americans – life went on. Second generation Japanese (Nisei) who were U.S. citizens by law were incarcerated along with their parents. Perhaps the children in this picture are faceless because Americans were treating people of Japanese descent as one deindividualized and dehumanized entity, to be viewed with suspicion and distrust. This painting juxtaposes helpless infants with military might and barbed wire. Sugimoto uses the term, “concentration camp” in labeling the scene, while the U.S. government called them “relocation camps” (people were relocated from the West Coast to the U.S. interior).

Harsh Canvas: Henry Sugimoto

An earlier version of this review was published in the NYU Literature, Arts, and Medicine Database (Litmed).
Henry Sugimoto’s Self Portrait from Wiki Commons

Unni–Dr Unnikrishnan Pulikkal–was my classmate and dorm-mate during the medical course. He had a keen interest in the arts right from his student days during MBBS, our undergraduate medical course, and was a wonderful painter. He told me about his switch to photography, though he continued to paint and make sculptures and other artistic creations. And In addition to creating art, he has created venues to display art; Unni, who hails from Kodakara in Thrissur district of the southern Indian state of Kerala, has started two museums in his hometown, in close proximity to the town’s hospital.  

The Art Museum of Love is one of the few museums in the world devoted to representations of love in art. When I said I wanted to visit, Unni gave me precise directions about reaching the place; it is located at the Azhakam service road about a kilometer from Kodakara town. The early December afternoon was hot. The climate has become warmer over the last three decades; temperatures over 40 degrees Celsius are now common during the summer. Climate change has hit Kerala hard.  

The art museum is delightfully air conditioned. I interacted with the two ladies managing the reception desk who told me that before I went in, I had to take off my shoes. I liked the design of the museum. Plenty of planning and thought had gone into the layout and the display rooms. The rooms are small and provide you with an intimate experience; the lighting is superb and highlights the exhibits. There are also spaces to sit and relax. You can read and reflect. The display boards provide detailed information about the exhibits, which were tastefully designed.  

Various types of love are addressed. Most of us are very familiar with romantic love. The love of a family, love between siblings and love between parents and their children and love of an extended family and society are also explored. Spiritual love is common in the Indian tradition. I could see a few of Unni’s paintings and photographs on display. Other art forms were also included in the exhibit. There were river stones sculpted by nature and others carved by skilled human hands on display. The driftwood sculptures fascinated me; in Nepal, I had a good friend, Dr Awate, who was fond of collecting driftwood as he hiked the hills of western Nepal. He mentioned that with some tender loving care some of these can become works of art.  

Ancient India had a liberal approach to romance and love. Traditional paintings had strict rules and regulations. Within these boundaries you were free to explore your creativity. Depictions of the Hindu God Krishna were prominent in the museum. Different traditional art forms from South Asia depicting Lord Krishna were on display. Artists consecrated their work to the lord, and Lord Krishna has been depicted in art forms and styles of painting throughout India. The diversity of these art forms makes them an interesting area of study. Tanjore paintings from Tamil Nadu are renowned for their rich colours and extensive use of gold foil. These have more detailed and regal patterns. Madhubani paintings from North Bihar (the Mithila region) use earthy colours and are usually done in geometric patterns with bold outlines (I was gifted a Mithila painting by Darbhanga Medical College in Bihar, India; the painting still hangs in my old office in Nepal). Rajput paintings are known for their opulent colour.  

Pattachitra is a vibrant art form that originates from the holy place of Jagannath Puri, Odisha, in eastern India. It is also extensively practised in West Bengal. Traditional Warli paintings– the Warlis are a tribe in Maharashtra near the border with Gujarat–of Lord Krishna were also on display as were Gond paintings of love.. Looking at these paintings I was struck by the cultural unity within diversity in India.  

The art museum has two floors and also has a section on erotic art that has a warning about the explicit nature of the material on display at the entrance door. Till today the public has been very accepting of this section of the museum. The museum also has a community space at the side where events can be organized. Several events have used this space; for example, the museum held a competition for letters and poems expressing love to be sent to the museum’s postal address, and some of the winning entries were on display. The Art Museum of Love has created Instagrammable objects and locations for selfies and social media postings. The website of the museum (Sneha Museum in Malayalam, the native language of the southern Indian state of Kerala) is https://lovemuseum.life/. The museum is also on various social media. 

I went with Unni to another museum he curates and manages. Photomuse is the museum of photography. Photomuse was inaugurated by Herbert Ascherman Jr., a renowned US photographer who mainly works in black and white and the rare art of platinum photography. He is the mentor and guide of Dr Unni and has contributed several pieces of his work to the Art Museum of Love and to Photomuse. This museum was in operation at a different location for a few years and in early 2024 shifted to a permanent location at Mattathur near Kodakara. The website of the museum, which has multiple features and offerings (including collections mainly devoted to cameras and photo equipment, a journal, programs, and a gallery showcasing various exhibitions previously mounted at the museum, among others), is https://photomuse.in/. During my visit the first gallery was hosting an exhibition titled “Silence & Chaos.” The exhibition had photographs by different photographers, some depicting silence and others depicting chaos. The major gallery hosts cameras and photographic equipment from various generations and time periods. The old pin hole camera, bellows camera, the auto focus film cameras, polaroid camera and SLRs using film are all on display. Each camera has a small descriptive note providing more information about the object. The pride of the collection is the large format Vageshwari cameras that were manufactured in India and were among the best field cameras in the world. My friend Sanjay Mhatre, an architect, had introduced me to large format cameras and these always fascinated me. The extensive collection is also documented online at https://photomuse.in/index.php/collections 

The museum holds exhibitions of photo collections periodically and these can also be accessed online. Photomuse has a good collection of old photographs; the museum has 1,765 antique prints in its collection. There are a few depicting the birth of independent India. I was intrigued by the photo of the old Cochin Forest tramways, which operated from 1907 to 1963 and enabled the transport of wood from the Parambikulam forest to Chalakudy town. The museum also publishes a journal both in print and online at http://journal.photomuse.in/  

The small town of Kodakara near the Thrissur-Ernakulam highway has two museums that are cultural icons and social gathering places. Dr Unni also has created an open-air art gallery on the premises of the hospital he runs in the same location. Unni, through his arts initiatives, reminds us of the close connection between art and medicine. There are several educational institutions around Thrissur and health students can learn about the close interplay between art and medicine at the museum. These museums and galleries have put Kodakara on the international arts map. So, the next time you visit Kerala, which some have called God’s own country, please do plan a trip to Kodakara. The place is not difficult to reach. The museums are open from 10 am to 6 pm Tuesday to Sunday (closed Mondays). In an increasingly bitter and divisive world, come discover the gentle and healing power of the arts and of love!  

Interview with the Uber-Talented Unnikrishnan Pulikkal, MD

Ravi Shankar Aug 6, 2024

Dr. Unni, a medical practitioner and artist, discussed his rural upbringing, passion for painting and photography, founding PhotoMuse, and balancing art with medicine.

One of the most successful patient-artists was Auguste Forestier, hospitalized at Saint-Alban at the age of 27 after placing pebbles on a train track and causing a train to derail.  After his discharge from treatment, Forestier remained at Saint-Alban for the rest of his life, where he worked in the kitchen. He began to create toys for the children of hospital employees using discarded materials, even butcher’s bones.  In this exhibition we see not only a boat created by Forestier from scraps of wood but also a print of Tosquelles proudly holding up one of Forestier’s boats.  

The work of Saint-Alban artists came to the attention of French artist Jean Dubuffet, who, after reading the 1922 book Art of the Insane, had founded the Art Brut (also known as Outsider Art) movement.  Dubuffet’s attempts to collect it were at first greeted with skepticism by Tosquelles.  However, the success of Forestier (eventually he even came to the attention of Picasso) was such that the profits from his work were used to help fund the hospital.   

At its previous venues in Europe (the show originated in Barcelona) a larger number of pieces from Saint-Alban were displayed.  At its US venue, the show has been augmented with work from American asylums, which prove to be a highlight of the exhibition.  Even without a Tosquelles to inspire them, these patients created beautiful and fascinating art.  

We see, for example, a coat made by Myrllen, a schizophrenic patient from Tennessee.  The patient had reportedly worsened in response to such few treatments as were available at the time.  In desperation, she was given discarded rags and threads.  What she produced gives us a window into her condition, with strange words and figures whose meaning was known only to her.  Ironically, after making several such pieces the patient lost her creative impulse and stopped sewing once put on Thorazine, the first antipsychotic medication.   

Another piece, a watercolor entitled “An Antarctic Scenery,” is one of the earliest known American asylum paintings (c. 1816).  The patient-artist, Richard Nisbett, in his paranoid imagination has chosen to depict “a fleet of murtherous Pirates” invading Antarctica. Nisbett was a patient at Pennsylvania Hospital in Philadelphia under the treatment of none other than Benjamin Rush, often considered to be the father of American psychiatry.  

Although the exhibition closes in August, a book (which will be for sale at the Museum and online) is expected to be released in November 2024.  The link to a virtual conversation with the show’s curators is given here:  https://www.youtube.com/watch?v=s9j3fMn0xJA (1 hour 19 minutes).

Francesc Tosquelles is frequently mentioned in The Rebel’s Clinic, by Adam Shatz,  a recent biography of the psychiatrist, Frantz Fanon.

A Tosquelles Glossary from the Barcelona exhibition is also a helpful tool: https://www.cccb.org/en/exhibitions/guide/francesc-tosquelles/237849 

Illustrations: 

Auguste Forestier (1887–1958, France) Untitled (Boat), 1935–1949, Wood, fabric, metal, leather, nail, 29 1/2 x 45 1/4 x 9 1/2 in. Centre Pompidou, Paris, Musée national d’art moderne/Centre de création industrielle, ART BRUT/Gift of Bruno Decharme in 2021, AM 2022-43. 

Romain Vigouroux (active mid-20th century, France), Francesc Tosquelles on the Roof of a Building at the Saint-Alban Psychiatric Hospital, Holding a Sculpture by Auguste Forestier, 1947, Gelatin silver print, 7 x 4 7/8 in Collection Family Ou-Rabah Tosquelles. 

Richard Nisbett (1753 England-1823, United States) An Antarctic Scenery, 1816, watercolor.  Collection of The Library Company of Philadelphia.  

American Folk Art Museum  
Lincoln Square, New York, NY 10023
Folkartmuseum.org

Rearranged by Kathleen Watt is subtitled “An Opera Singer’s Facial Cancer and Life Tranposed.”  At the outset of the book, the author feels on top of the world.  She can hardly believe she has the opportunity, as a member of the Metropolitan Opera Extra Chorus, to share the stage with some of her biggest idols.  She has a wonderful partner and a warm and close family. 

Then, one day, Watt discovers a bump in her mouth.  She is found to have a rare and aggressive oral cancer that is “breathtakingly tailored to obliterate my profession and my raison d’être, never mind my face” (p. 51).  She undergoes multiple reconstructive surgeries, some of which are unsuccessful or become infected.   While she is initially reassured she will be able to sing again in a few months, that goal proves unrealistic.  Watt’s partner is emotionally supportive for years, but even for her there is a limit.  When the author is unable to pull her own weight financially and develops an addiction to alcohol, the relationship unravels. 

The greater part of Rearranged chronicles Watt’s medical ordeals. Previously an active and productive person, she is now at the whim of her doctors’ schedules.  She gives up all hope of performing again. As anyone who has experienced an illness or the illness of a loved one knows, navigating the health care system can easily become a full-time job.   

The book ends optimistically as Watt’s condition stabilizes. She realizes she is lucky to be alive and accepts her “rearranged” looks.  She reconciles herself to a future where she will “henceforth sing mostly for myself “(p. 304), and redefines herself as a writer specializing in the performing arts. 

Rearranged is a book which teaches valuable lessons.  Watt endures extreme hardship, has her dreams shattered, and acquires wisdom that will benefit providers and patients.    

One lesson learned is that unempathic caregivers may compound a patient’s suffering.  “A multi-gigging freelancer with catastrophic coverage at best” (p. 31), the author has a miscommunication with an endodontist and is threatened with a lawsuit for presumed nonpayment.   And when she dares to question another doctor, he snaps at her: “Ha, ha!  I’m not going to teach you surgery” (p. 57).  Fortunately, other providers have a manner that is more conducive to healing: “Because he [the doctor] conveyed neither arrogance nor impatience, his confident command allowed me to trust him easily.  And at that moment, nothing mattered more to my successful outcome” (p. 55), and “Alone among my doctors, he had thought to lament my loss.  A helium cloud filled me at this simple expression of kindness.  Nothing at that moment could have been more restorative” (p.108).    

One can understand how traumatic it must be to have one’s facial features distorted as the result of illness.  For a singer it can be career-ending, not only because she needs to show her face to the public but because the vocal cavity may be damaged.  But, beyond this, because “the face is the single most important organ of human communication” (p.105), the author feels she has lost her identity: “I felt as bereft of myself as I was of my voice…I missed seeing my reflection in the faces of others.  I began to lose track of my own subtexts, and myself” (p.237)    

The author relates a vivid and frightening memory of experiencing post-operative delirium (sometimes called ICU psychosis). When she comes out of surgery and suddenly realizes she cannot talk because she has had a tracheotomy, she pounds on the wall.  She wishes she had had “healthy people to paste accurate information alongside my cockeyed perception, so I could avoid drawing mistaken conclusions from my misperceptions” (p.146).  Instead, she overhears attendants saying “Boy, she’s really out of it” (p. 149) and referring to her as “a royal bitch” (p.140).  At no time does anyone think to help “confirm her sanity, quell her fears” (p. 150).  Hopefully, health care professionals will read this and think about it the next time they see a patient right out of the OR.    

In closing, it bears mentioning that at one point Kathleen Watt consults with surgeon Iain Hutchison in London.  Hutchison is the initiator and sponsor of the Saving Faces Art Project, a series of paintings by artist Mark Gilbert which “portray the faces of patients before, after and in some cases actually during their surgery for injury, deformity or cancer” and whose purpose is to “communicate the strength of spirit which can enable people with facial disfigurements and trauma to lead full and happy lives.” (from https://savingfaces.co.uk/our-mission/art-project/ )  Likewise, the author of Rearranged inspires the reader by her strength of spirit in the face of inconceivable adversity. 

REARRANGED
An Opera Singer’s Facial Cancer And Life Transposed
Heliotrope Books, New York, 2023   
384 pages 

Kathleen Watt’s website: kathleenwatt.com