Portraits of Care

At the time of sitting for this portrait, Bill was a head and neck surgeon at the University of Nebraska Medical Center. As with many of the professional caregivers Mark has portrayed, the process of sitting for his portrait was novel for Bill. It required Bill to be still and be the subject of an artist’s gaze. In an essay, Bill and his coauthor Dr Virginia Aita wrote that the caregiver portraits “convey in their gaze a visage that implies commitment, sensitivity, and a larger mission toward service to others that each bring to his or her work.”

On viewing his portrait alongside the others in the Portraits of Care collection, Bill stated, “I feel that I am a small piece in a large web as someone in the project, and it has helped me see the vast expanse of those necessary for care.”

Mark and Bill continue to work together. Bill was chair of Mark’s doctoral dissertation committee. Moreover, they both teach a course called “The Art and Science of Medical Decision Making” at the University of Nebraska at Omaha.

Daisy has survived 7 months in a neonatal intensive care unit, dozens of blood transfusions (her first was at 2 weeks old), countless surgeries, and posttransplant lymphoproliferative disease, a cancerous condition requiring 4 months of chemotherapy. In 2006, Daisy had a small bowel, liver, and pancreas transplant at the University of Nebraska Medical Center.

Daisy first met Mark with her mother, Joey, in 2007. Because of his Scottish accent, Daisy decided to nickname him “Shrek.”  She and Joey continue to refer to Mark as Shrek nearly 20 years later. Daisy is now a successful filmmaker in New York.

Judy was in her 70s. In 2000, she had surgery for a squamous cell carcinoma of the mouth. Her initial reaction to participating in having her portrait created by Mark was one of “curiosity.” She consented to take part, saying, “If it can improve things later on, great.”

Judy traveled over 60 miles by bus for her appointments with Mark. Her reaction to and description of sitting for her portrait were very matter of fact. She repeatedly told Mark that an earlier charcoal portrait made her look mean and miserable. But she laughed it off, said that it didn’t matter, and returned to work on this larger, full-length portrait.

Judy hoped her participation and the resultant portraits would help others to understand that many people with cancer are living their lives in a more or less normal fashion. She recognized that viewers of the portrait would want to know her medical history and learn that she is still alive despite it all.

Portraits of Care was a 2-year research study that used the artistic medium of portraiture with the primary objective of better understanding the human dimensions of care that might enhance the patient and caregiver experience. As part of an artist-in-residence program, Mark drew and painted sometimes life-size portraits of patients and caregivers. Patient subjects included both healthy and ill patients from birth to the end of life.

Luke was born by caesarian section. Mark was invited to attend his birth, where he was able to draw and take photographs. This larger-than-life painting depicts the very first moments of Luke’s life.

The picture responds to the most intimate and private of moments and turns it into an opportunity for reflection and engagement.

Sarah is an intensive care unit charge and rapid response nurse. When sitting for her portrait, she was working on the front lines of the Covid-19 pandemic in Nebraska, all the while experiencing major life changes and caring for 4 small children.

Reflecting on the portrait, Sarah said, “I see so many things with that picture. I see struggles, and I see stress. I see that it is sad, but I also see strength with it as well, and perseverance—you know, you overcome it…. I see a lot of that in mine.”

Sarah’s and others’ experiences illuminate the important role the arts can play in helping health care workers overcome uncertainty, embrace vulnerability, and assuage burnout by offering a way to better deal with ambiguity.

Norman Gilbert (1926-2019), Mark's father, acknowledged how the end-of-life drawings of his wife Pat may differ in relation to the other pictures he had made of his wife. He stated: “I think they are separate from [the other work]. I can’t show them to her.… [I] can’t ask her what she thought of them. At one point I did say, there’s no point in doing them because I can’t show her them.”

As a collection, Norman's drawings can help us all consider our relationship to giving and receiving care, our appreciation of health and illness, and our understandings of dementia, death, and dying. These pictures invite people to talk openly about death and bereavement.

This is one of over 30 drawings that Mark’s father, Norman Gilbert (1926-2019), created of his wife of 65 years, Pat, as she lay dying in hospital after a stroke. When asked to consider why he made the drawings, Norman explained, “It is what I do. I mean some people might have read a book…. It didn’t enter my head to take a book. But it did enter my head to take the sketch book.… I could have put on the radio or a television. I didn’t put that on for the whole time.” He continued, “I didn’t think there was anything strange about doing the drawings. It was just something I have spent my life doing.… It actually took my mind off completely what I was doing. One of the doctors did come and saw that I was drawing, and I said, ‘It is alright. It just keeps me sane.’” Norman explained, “when I was doing the drawings, I forgot! I was just drawing Pat again.… I had drawn her thousands of times before.” It was, for him, normal.

“Seeing the Patient” was a collaboration between Mark and pediatric neurologist, Wendy Stewart. The study sought to explore the challenges of raising a child with epilepsy and the role of portraiture in helping clinicians consider the impact of epilepsy not only on the patient but also on family caregivers. When Mark first met Sebastian, along with his parents, he was told that Sebastian was having 40 to 50 seizures a day. Sebastian’s parents spoke of the shock and stress they felt when the seizure began. Moreover, they described the fear that their child is dying.

With his parents’ permission, Mark captured some of Sebastian’s seizures in a series of portraits.

In 1999, Roland thought he had a toothache. It turned out that the pain in his left upper jaw was in fact caused by a malignant cancer of his upper jaw and maxillary sinus (squamous cell carcinoma).

He had surgery, which required removal of his left upper jaw, sinus, cheekbone, nose, palate, and the lower part of his eye socket. A large dental plate (obturator) was used to fill the defect.

Mark and Roland had worked together on many drawings and paintings, including an oil painting of his surgery. During the portrait sessions, Roland discussed frankly how difficult his diagnosis was and his fearful anticipation of the surgery. However, what Roland did not anticipate was the significant anxieties he experienced during his radiotherapy treatment after surgery. His conversations with Mark were dominated by his descriptions of the claustrophobia he suffered during the treatment. The anxiety that this engendered in Roland led this most placid man to become aggressive with the nurses and physicians and left him feeling scared and isolated.

Wanting his story to be told in full, Roland stated that he wished to be painted in his radiotherapy mask. For him, the mask symbolized the most traumatic part of his treatment and his overall experience of illness.

When Mark became artist in residence at the University of Nebraska Medical Center (2006-2008), one of the first patients he worked with was Sebron, who was living with HIV/AIDS and the effects of depression. He, too, was a painter and, as he stated, “a good one at that. I say that not in a boastful way. In fact, most of the people who know me will tell you that I am a very modest fellow. It is necessary to make you see just how important art is to me to get you to see how utterly devastating depression can be. Art is my first love; it is part of my very fiber. I have devoted most of my life to studying and making art.”

Mark and Sebron continued to work with each other on a number of portraits throughout Marks 2-year residency at the University of Nebraska Medical Center.

Mark got to know Beverly and her husband Cecil, who was living with dementia, after they consented to participate in a study at Veterans Memorial Hospital, Halifax, Nova Scotia, in January 2019. Beverly described to Mark that she saw signs of Cecil’s dementia as early as 5 years previously. “When we’d go for a drive, we’d get in the car and he’d say, ‘Now, where are we going?’”

Beverly was a keen artist. When Mark asked Beverly if she had ever painted Cecil herself, she became emotional, saying it would be too upsetting for her to picture Cecil as he is now, yet she seemed happy for Mark to draw him.

Cecil suffered from “sundown syndrome,” which meant he could become agitated, unpredictable, and sometimes aggressive at night, which could be very upsetting for Beverly. She explained, “when the sundown syndrome comes, it’s just a split personality. It’s just unreal.” Reflecting on how she was managing, Beverly said, “I just live in the present, one day at a time…. What happened yesterday is yesterday.  I can’t do anything about it. And what’s happening tomorrow, I have no control [over].  So, if it’s a bad day, I wake up the next day and say, well, today will be a good day.” 

After Cecil died, Mark met Beverly once again. When he asked what she thought of participating, she said, “I’m glad that the pictures were done because I think people have to realize that this is what happens, you know…. The confusion, the sadness of the whole … what happens with this disease.  How everybody is affected.  So, it takes a toll on everybody’s life that cares for their loved one…. As I said, you captured the moment.”

Cecil was 82 when Mark portrayed him. He had been diagnosed with Alzheimer’s disease 3 years before. Cecil and Beverly had 2 middle-aged sons and a daughter. Cecil had been in charge of transportation at the local Sears store for 25 years until retiring. When Mark met him, he had been retired for a further 25 years.

After a period of struggling and an aggressive episode at a family get-together in December 2019, Cecil was moved into a care home. Although this was distressing for Cecil and his family, Beverly felt that she would worry less and might have more time to return to painting, which sustained her own sense of well-being. She reflected, “I was just running on nerves. So, like I said [to her sons] I don’t know how much longer I can do it. I said to the social worker and psychologist that it’s getting to the point that you’re going to have two of us if I don't have help soon. But it’s mixed reactions. It’s a guilty feeling but, yet, it’s a relief…. I know he’s being washed and cared for, and that he’s contented. So that was the big thing.” Beverly visited Cecil 3 times a week.

With the onset of Covid, Beverly was unable to visit Cecil in person but communicated via a tablet computer.

Cecil died in June 2020. He and Beverly were married for 58 years.

At the time of painting, Henry was a 34-year-old forensic mental health nurse working in a behavior modification unit in London. He lived with his wife Gloria and 2-year-old son, Jeremiah.

In 1991, in his native Nigeria, Henry underwent several operations, culminating in the removal of all his right upper jaw and maxillary sinus for what was thought to be a benign tumor. In fact, it was a malignant bone tumor (osteosarcoma). He sought treatment from maxillofacial surgeon lain Hutchison at The Royal London Hospital in the United Kingdom.

He sat with Mark for a series of portraits. When Mark considered working on a larger full-length portrait, Mark suggested that the portrait include Henry’s young son, Jeremiah (Jerry).

Barry is a housekeeping utility worker at Veteran’s Memorial Hospital in Halifax, Nova Scotia. He started working with Mark in April 2019. Barry usually began cleaning the offices and spaces within the Memory Clinic just as Mark was leaving his studio in the evening. Barry often spoke to Mark about the portraits, which he looked at each time he entered to clean the studio. After getting to know Mark and becoming familiar with his work, Barry agreed to participate in the study and sit for his own portraits.

Each time Barry visited the studio, he would sit for an hour or so, allowing Mark to draw him. During the sittings, he described his daily responsibilities working at the hospital, which included carrying out a “full service” in the Memory Clinic offices and the adjacent “Falls” Clinic. He explained that full service required emptying garbage, dusting the vents, and mopping/vacuuming the floors. One of Barry’s major responsibilities was doing “ward checks,” which required emptying garbage and removing soiled material for 4 floors of patient wards directly above the Memory Clinic. Barry carried a pager as he worked to enable him to be called to help with “spills and other accidents” in patient rooms. His shift began at 3:30 pm and ended at 11:30 pm.

Reflecting on the process, Barry stated, “It’s [been] a good experience…. I found it very enjoyable, actually.” When he considered the prospect of his portrait being exhibited, he stated, “I would love to be able to be a fly on the wall” to see and hear how viewers responded to the portraits. He was comfortable that viewers would engage with the portrait in different ways. “I think it’s great. I think ... people have to make their own interpretation.”

Betty is a nurse in the Memory Clinic. When she first met Mark, she had been working in the Memory Clinic “27 years, at least.”

During sittings, Mark and Betty considered the parallels between artistic and medical interactions. Betty stated, “There has to be an emotional connection. Which is hard because on a professional level, many professionals don’t want to be vulnerable.” She recognized that it can be challenging to “connect” with everybody. However, she believed in the fulfillment that can be engendered by “giving of yourself” and seeking that emotional engagement.

As Betty examined her finished portrait, she stated, “I think I look a little saucy. Look at me, holding my arms again. Darn, that’s not very [professional]. So, in nursing, you’re taught body language. If I’m in with a patient, I try to make sure my hands are open.” She also suggested that she looked “vigilant.”

Reflecting on the process of sitting for her portrait, Betty stated, “Well, you’re very good at putting someone at ease. So that was good…. It’s not something I would have done on my own. You know what I mean?” Considering the notion of her portrait being exhibited, she said, “For sure. It was nice to get to participate. I would love to do anything I can towards art as it relates to health. I would be honored to be a part of [the exhibit] for sure…. I think it adds another dimension to our work… It touches on the humanity side of it, right? Sometimes people get so clinical, they forget. And so to keep reminding ourselves of that. That’s why I’m in nursing, is to be that connection and that [person] trying to help.”

Finally, she said, “Older people have such a cool way of looking at things. They’ve lived life. Even if they are living with dementia, they still have jewels that they can impart to you…. And in some ways, dementia frees them from other anxieties they had…. And they then are happier in ways, because they can’t remember what they were worried about.” 

Mark first met Brian and Lindsay in July 2018. Brian was an academic who had just been diagnosed with Alzheimer’s disease by Dr Rockwood at the Memory Clinic. At the time, Brian was 82 years old, and Lindsay was 70.

Mark initially worked with Brian and Lindsay at the Memory Clinic, where they would both sit for drawings. When Lindsay sat for the first time, she apologized, saying, “I don’t know how I am going to do this. I am a fidgeter. I am a terrible fidgeter. I went to a school in England, of course we had to wear uniforms. And I always wriggled, the backside out of my tunics.... Just warning you.” She laughed. When Brian sat for his portrait, it was mostly in silence as he watched Mark work.

As time went by, Mark would visit Brian and Lindsay at their home. Brian seemed a great deal more relaxed than when they met in the hospital. During these home visits, Brian enthusiastically showed Mark paintings of his parents and portraits both he and Lindsay had sat for when they were younger. Brian also collected prints and maps. At times, he found it hard to remember what the pictures were of, or details about how he came to have them.

This portrait depicts the couple in their garden, Lindsay sitting in an Adirondack chair with Brian standing behind her. Reflecting on her portrayal in the picture, Lindsay said, “I need to smile a bit [laughs]…. But then that’s just me.” Both were happy for the portraits to be exhibited. Brian stated, “We were, particularly me, attuned, shall I say, to [having our] portraits … painted.”

Considering the overall experience, Lindsay stated, “I think it’s very valuable … it puts a human aspect into … the research and treatment. And I think that’s a very important part of educating doctors and health care workers and people in general…. I was looking at the [portrait] of the two of us in the garden. You know, there’s no telling which one is the patient. So, it really emphasizes that, this is somewhat invisible … it’s not like somebody has a visible disability. I think that’s important for people to realize. I think it was a privilege to be part of [the study]. I really do. I think it’s opened up ideas to us—or to me, anyway.”

Brian died in July 2023.

Dawson and Emily were introduced to Mark by Emily’s geriatrician, Dr Kenneth Rockwood. At the time, Dawson was 80 years old, and Emily was 78. Emily had been diagnosed with dementia in 2011. Like Mark, Dawson and Emily were born in Glasgow, Scotland, but they moved to Canada 60 years ago. They had 3 children and 5 grandchildren. Mark met them both for the first time in March 2019 when they came for an appointment to see Dr Rockwood. Mark subsequently visited them at their home 8 times over 3 months.

Examining one of her portraits, Emily said, “That looks like my Granny,” but when considering the overall process she stated, “Oh, I have enjoyed it.” They felt their large pastel portrait was like a “snapshot…. All the things on the table have a story attached to them.  And they’re there for a particular reason.”

For Dawson, participation generated several more challenging reflections. He said, “From my point of view, I think [the study] forced me to think—how can I put this properly—almost in a structured way about my relationship with Emily, and her relationship with me, and our collective relationship with the disease. I think the fact that you were there and in absentia, acting as an inter-looker, I found that quite good. When you would go away, way back, at night I would be sitting in my bed thinking it through. And it …  it was a positive experience.” For Dawson, having Mark visit and observe his interactions with Emily, engendered reflections and meanings that may not have occurred otherwise.

Dawson and Emily celebrated their 60th wedding anniversary at the end of 2022.

Emily died on Christmas Eve 2023.

Erin and Michaela worked with Mark over 3 months in 2018. Michaela, Erin’s daughter, started having seizures right around her second birthday. When she was 3, Michaela was also diagnosed with autism. When Erin met with Mark, she talked of how terrifying it was when Michaela started having seizures, as were the trips to the ER. Erin described how she would think Michaela was about to die. At its worst, when Michaela was around 3 years old, she would have up to 50 seizures a day.

Reflecting on how things are now, Erin said, “Now it’s good, back last January she had a vagal nerve stimulator implanted ... so [she] maybe has two [seizures] a week now. Which is fantastic. That is life-changing for us.”

Michaela is a “lover of all things tea party.” She loves food. Erin says that the pills that Michaela currently takes make her hungry all the time. Therefore, Erin says, Michaela is “obsessed with food” and recognizes that this can increase demands on others who have to care for Michaela.  

“That being said, it has been part of her life for so many years…. She is a champ, you know? You never realize the resilience of kids.”

Only one picture in the Portraits of Care at the University of Nebraska Medical Center, Omaha collection depicted a patient and caregiver together. Rob and Mardi were both cancer survivors and consequently both patients and caregivers. They were a married couple who shared the portraiture experience together.

When asked to respond to their portrait, Mardi stated: "The canvas enabled Rob and I to identify the elements that we had simply not been able to see our daily life together. My strong public exterior was overshadowed by a waifish vulnerability and Rob’s face reflected a survivor’s reconciliation of past hardships with the reality of life as it is now. The cancer journey is never over. Rather it is the evolution of a new life with a 'new normal.' It embraces past experiences while being open to new possibilities, cherishing the precious present."

The universality of giving and receiving is exemplified in Rob and Mardi’s portrait. Like them, we all may be called to experience both illness and caregiving at times in our lives.

Mark's mother, Pat, died of a stroke in 2016, 6 years after she was diagnosed with dementia. As his father, Norman Gilbert (1926-2019), kept vigil by her bedside during her last days in hospital, he drew her, as he had so many times before.

What Mark experiences through arts-based research, Norman learned firsthand through lived experience: portraiture can allow artists, sitters, and viewers to engage with illness, recovery, and care in ways that can be transformative, instructive, and healing. Norman’s works transform deeply private experiences into shared comprehensions of love, caregiving, dementia, end of life, and bereavement.

Anthony had his larynx, along with his tongue and lower jaw, removed due to cancer.

Anthony was an enrolled member of the Winnebago tribe of eastern Nebraska. Mark first met Anthony just prior to his tumor resection surgery.

Anthony had initial misgivings at the prospect of sitting for his portrait, citing his traditional belief that being drawn or photographed “toys with someone’s spirits.” However, in the end, he appreciated that the portrait would potentially survive into the future and be able to retell his story as a testament to the struggles he faced as he recovered from his surgery.

Anthony visited Mark’s studio once or twice a week for 6 months.

In a letter he gave Mark, written on completion of his portraits in 2006, Anthony stated: his portraits “would be a testimony of the struggle that would follow to make life livable again with all of these changes.”

Mark witnessed Anthony living with a grace that belied the physical and emotional challenges he faced daily. The bond forged between Mark and Anthony was reinforced by the aesthetic interaction that permitted them to work together to create a portrait that allowed others to enter into a fragment of Anthony’s world. 

Henry was a 54-year-old barrister specializing in personal injury. He lived in London with his wife, Anita. They had 2 children, Andrew and Kate, who are twins. Henry loved cricket and music.

He developed a painless lump in the left side of his palate in 1987, which proved to be a malignant tumor of one of the minor salivary glands (adenoid cystic carcinoma).

Over the succeeding 9 years, Henry underwent 12 major operations with his maxillofacial surgeon, Iain Hutchison, losing his left eye, upper and lower jaws, eye socket, frontal and temporal skull bones, and the bones separating his brain from his mouth and nose. In this single image, we see a man who is severely disfigured as a result of monumental surgery to rid him of his cancer, yet through his attire and disposition, we also see a man with confidence and the spirit to still “perform” as a barrister in court.    

Henry passed away in 2005. His full-length portrait stood on the altar of the church where his funeral took place.

Mark was invited to visit the operating theater to witness Henry De L’s surgery. The resultant paintings of Henry’s head unveiled during surgery are in their own way portraits of Henry. They tell an important part of Henry’s story.

For Mark, the explicit nature of these images was tempered slightly when he began to develop a more aesthetic response to what he was seeing. Under the glare of the surgery lights, Mark saw an explosion of aesthetic values. Some of these macro compositions were so extraordinary that they took on an abstract quality, seemingly beyond our own world and sense of reality.

Jim was in his 50s. In 2002, he had surgery to remove a squamous cell carcinoma from his jaw. During that time, he continued to attend the clinic for related side effects of his treatment, including radiotherapy.

His initial reaction to being asked to sit for his portrait was a mixture of “puzzlement” and “excitement.”

Jim admitted speaking openly about how the portraiture process generated powerful feelings about the journey he had been on since his initial diagnosis of cancer of the jaw. Reflecting on the process, Jim was aware of the part he played in navigating the construction of his own visual narrative. 

The powerful collaborative, interpersonal relationship that evolved between Jim and Mark and the portrait involved a great deal of give-and-take in the project itself. Jim recognized that what he said, did, and felt could manipulate the resultant appearance of his portrait.

Kathryn is a clinical social worker in geriatric medicine at Nova Scotia Health Authority. She is also an affiliated researcher with the Geriatric Medicine Research Department at Dalhouisie University in Halifax. She started working with Mark in October 2018. Kathryn stated that participating in the study helped her “become more aware of ‘the art’ in everyday interactions in [her] social work practice.” She commented on how crucial creativity is when working in the Memory Clinic and in dementia care.

During the initial portrait sitting, she told Mark she’d been working at the hospital since 1993. She moved every few years to a new unit, looking for a team that saw the value social work could provide. She found that team in 2011, joining Dr Kenneth Rockwood in geriatric medicine.

When looking at her completed large pastel portrait, Kathryn said, “Well, I think you captured my essence…. My friends that have seen it, see … my defiance. I guess it’s my boots and my red, home visit, pants when I’m being a superhero. I think it’s a good representation. The way I hold my hand…. I mean you got the essence of my personality, for sure.”

Considering the entire project, and the notion that her portraits would be exhibited, Kathryn said, “I’m actually thrilled about it. But I think I’ve learned a lot through this whole process too…. It’s a big deal, what we do, right? And you capturing it all with our patients is just … it’s important. It’s a special service we provide for people who are disenfranchised."

“No one even sees them. No one cares about them. You do.”

Lawrence and Mark started working together in June 2018. At the time, Lawrence was 91; he met Mark after attending an appointment at the Memory Clinic with subjective memory complaints. Although Lawrence’s test results showed no sign of dementia, his geriatrician asked him to consider participating in the portrait study. Lawrence enjoyed painting with watercolors, which sparked his interest, and he consented to participate. For the next 2 years, Mark and Lawrence met almost every week as they worked together to create numerous artworks of Lawrence. The resultant portraits not only depict his physical journey from living independently to the challenges of recovering from hip surgery after a fall, but also his emotional journey of grieving for his wife and oldest daughter and coming to terms with his increased frailty and greater reliance on the help of others.

For those early portrait sessions, Lawrence was able to drive himself to the clinic to meet with Mark. He was now living alone for the first time. He had just moved back to his home, having stayed with his younger daughter Patricia and her family after the recent death of his wife, Dorothy, and oldest daughter, Penny, to cancer within a few months of each other.

Lawrence and Mark had been working with each other for 9 months when Lawrence’s daughter, Patricia, called to say her father had fallen at home and broken his hip. Initially, Lawrence struggled physically to recover from hip surgery. As is not rare at this age, and despite reasonably good health, Lawrence experienced an early postoperative delirium, compounding his other challenges. Lawrence described how frightening the hallucinations he experienced were and his frustration that nobody took him seriously when he tried to talk about them.

Lawrence felt “despondent” during the early days after the surgery. Although he grew tired of talking at times, he was still happy to be drawn. As he lay in bed, looking fragile and suffering from the effects of his medication, he communicated doubts to Mark. “Why do we go through all this…. What’s the point? Is it going to do any good?... Maybe it’s better to ignore it and just keep going.”

Viewing these drawings later, Lawrence stated, “The one in hospital looks like I was at that particular time.... But I can’t check that because I can’t see myself. It’s good…. It’s not really a portrait, it’s a time capsule.”

After his fall, Lawrence’s recovery and mobility were profoundly compromised. His physical challenges were compounded by pressure sores on his feet, which did not heal. Mark continued to visit Lawrence at home as he struggled to come to terms with his increased frailty and deep frustration at having to rely so much more on others to provide him with his basic needs.

Lawrence would often voice his thoughts on what purpose the portrait study might serve. The last time he met Mark in person, he stated, “I’m quite happy doing [the study], even if I don’t know exactly why. I don’t expect to know anyway. But I know it’s something that’s important. And eventually it’s going to help somebody.” Lawrence also recognized the collaborative nature of their time together, saying, “My energy has got your portrait onto the paper .... It guides your hand.”  Mark and Lawrence were both able to engage with the process, helping each other express, reflect, and find meaning and even healing through the medium of portraiture.

Roger was a former Air Force pilot and was living with amyotrophic lateral sclerosis. He communicated through computer technology that was integrated with his wheelchair. The unforgiving nature of his disease meant that he was not only unable to speak but also lacking in the capacity for self-expression. Tension, however, dissipated once Mark and Roger started working on the drawings and paintings. A purposeful working relationship evolved over time. By drawing Roger, Mark was allowed to be more sensitive and attuned to his expressions.

The silence in which they worked was not an empty void, but a vessel for enhanced awareness and acknowledgment of each other’s presence. The intimacy and sensitivity engendered during their portrait sessions was even more profound without the convenience of easy, verbal interaction. The way they related to one another, either side of the easel, was as immediate, instantaneous, and constructive as any verbal interaction. The resultant images continued this “dialogue,” communicating with the same silent focus within which they were created. 

This painting is by Mark’s late father, Norman Gilbert (1926-2019). The painting portrays Mark’s mother, Pat, after her dementia diagnosis. Norman continued to draw and paint Pat as he had always done over their 60-year marriage. These later drawings and paintings testify to both Pat’s growing frailty and Mark’s parents’ ability, in many ways, to carry on very much as they had done before.

Although Pat’s dementia is not overtly referenced in these pictures, awareness of that context establishes these postdiagnosis paintings as not only a powerful visual record of an artist-sitter or husband-wife relationship, but also a powerful visual testament to an ever-evolving patient-caregiver relationship.

The later pictures of Pat illustrate the fluid roles that we may all be asked to play at some point in our lives when we care for those we love and fall ill ourselves.