chronic illness

Artist’s portals to elsewhere

Artist Amy J. Dyck sits amid her work “Bed Desk,” one of the pieces in her solo exhibit, Portals to Elsewhere, which opened at the Zack Gallery last month. (photo by Byron Dauncey)

The art of Amy J. Dyck is surreal and enigmatic. Her solo show Portals to Elsewhere opened on Aug. 25 at the Zack Gallery. Like any portal, it allows a viewer a glimpse into the artist’s sophisticated and contradictory inner world.

“I loved drawing when I was young,” Dyck said in an interview with the Independent. “I liked little details: earrings, shoelaces. It was easy, like a game. Then I had a son and, like every young mother, I was always tired. Creating art at that point stopped just being fun. I needed to concentrate, to find time for my art, to figure out whether I wanted to spend that time. That was when I became a real artist.”

That wasn’t the only time life challenged her. “I wanted to be a designer,” she said. “I started at design school but, after one year, I became too sick and had to drop out.”

But she never abandoned learning – she taught herself, read textbooks and took occasional classes. And she never stopped creating – paintings and drawings, mixed-media collages and soft sculptures, ceramics and wood installations dominated her life, as she juggled being an artist with her non-artistic jobs, family and chronic illness.

Multilayered and metaphorical, Dyck’s collages and sculptures could be seen as a self-portrait of an artist battling a chronic disability.

“I’m often sick and can’t move much,” she said. “Sometimes, I spend several months in bed. That’s why I make soft sculptures. It’s easier when I’m in bed and can’t go to my studio. I have to be flexible with my materials and techniques to accommodate my illness.”

Despite the hardships associated with her ill health, Dyck’s works don’t display any bitterness or resentment. Instead, the artist is on a journey of self-discovery.

“I have to learn how to live in a body that’s broken,” she explained. “That’s what my art is about. My soft pieces are something I want to wrap around myself, to counteract my anxiety.”

All the sculptures on display at the gallery present complex knots of fabric, pipes stuffed with soft fillings. Combined with ceramic elements, leather, wood, feathers and other materials, these ouroboros reflect the artist’s struggles and her determination to live as fully as she can. Her philosophical piece “Blame Mosquito” is a fur ball with half a dozen ceramic hands coming out of it, pointing in all directions. “When I was young,” she recalled, “there was a traumatic event in my life. I blamed everyone – like those fingers pointing everywhere – until I realized that I myself carried some of the blame. That’s why one of the hands points back at me.”

“Yellow Polka-dot Tail” also has sharp, dark spikes coming out of the soft, colourful tangle and pointing everywhere. “Those spikes are like my anger. They help me feel powerful,” she said.

Another piece, “Wing Head,” introduces a strange single wing decorating the sculpture’s head. “The wing is not functional,” she said. “Just like parts of my body. It is a possibility of flight, an idea, not a reality.”

Dyck explores a body that doesn’t work well by creating allegorical figures with faulty anatomy, with the wrong number of fingers on a hand or mangled joints or tiny wings in the wrong places. “I’m processing my disability through symbolism,” she said.

She uses second-hand materials for her sculptures. “I buy old clothing at thrift stores or internet marketplaces. The leather came from our old couch. My kids helped me dismantle it and cut out the pieces I could use,” she said.

photo - “Wing Head” by Amy J. Dyck can be seen at the Zack Gallery until Oct. 1 — “Wing Head” by Amy J. Dyck can be seen at the Zack Gallery until Oct. 1. *(photo by Byron Dauncey)*

The theme of a body disrupted, of limbs disconnected, continues in her painting-like mixed-media collages. Many of them have images of open doors, windows or arches. “They are my portals to elsewhere,” she said. “When I’m in bed, when I can’t move, I look out of my window and imagine myself out there. I like being outdoors.”

The images are uncomfortable and deformed, but there is optimism, a strange equilibrium of what might be considered ugly and beautiful. Body parts surrounded by butterflies. Too many hands counterbalanced by birds and ghosts, black and white charcoal drawings incorporating splashes of real gold. All of them speak of a deep need to understand our own bodies, how they work and why they sometimes don’t. The style of the artist is unique and instantly recognizable, and that is what Dyck teaches aspiring artists – she offers classes at community centres and retirement homes. “I try to teach my students how to find their own voices,” she said.

One of the most interesting examples of Dyck’s art is an installation called “Bed Desk.” Dyck explained its etymology.

“I promised the gallery a sculptural installation, but then I became very sick and couldn’t leave my bed,” she said. “My husband is a builder. He made those wooden stands that surround the circular space and act as frames for my drawings. He also made me a bed desk where I could draw while in bed, but I could only create pieces of the same shape and size as the desk surface. I channeled my longing to move, to feel strong into those drawings. The figures I drew are broken, like me, but they move, they grow, they adapt and evolve. The installation was funded by a Canada Council for the Arts grant. When you step into its circle to view the drawings, you enter your own portal to elsewhere.”

Dyck’s show will be at the Zack Gallery until Oct. 1. To learn more about the artist and her work, visit her website, amyjdyck.com.

Olga Livshin is a Vancouver freelance writer. She can be reached at [email protected].

Beautiful life despite illness

Rachel Goldman and her husband, Geoff McLennan. (photo by Avi Dhillon)

Rachel Goldman is this year’s Courage to Come Back Award winner in the medical category. She couldn’t be there in person at the Vancouver Convention Centre June 9, but she did accept the honour virtually.

After introducing herself, Goldman said, “Forty months. Forty months! That’s 1,216 days or 29,200 hours. That’s the total amount of time I have spent secluded from the world, due to COVID. Can you even imagine? So, here I am, speaking before 1,700 of you, sharing my story. It’s a surreal and humbling experience, but one that I am striving to embrace with courage and gratitude.”

Goldman explained what it has been like to have been born with CVID, common variable immune deficiency.

“For 40 years, I have caught and recovered from thousands of illnesses – lived through years of isolation and endured the roller coaster that is chronic illness,” she said.

“A common cold is never just a cold. It’s a sinus infection that leads to intravenous antibiotics. It’s a kidney infection that leads to weeks or months in an isolated hospital room. It’s my body triggering anaphylaxis to the antibodies being infused into me. Challenging? Absolutely.

“Not being able to be with you tonight to receive this amazing award in person is just one more of these challenges. I have my incredible father [Paul Goldman] there to accept this award on my behalf. Now, due to his attendance in my place, we will have to stay apart for at least 72 hours in hopes of minimizing my infection risk.

“Life altering? Most definitely,” she said.

“What it hasn’t done is stopped me from doing the best I can to live my life within the realm of what I can make possible, not what seems impossible.”

Goldman and her husband, Geoff McLennan, live in New Westminster and have two young children. A typical day for her starts at 6 a.m. to get their kids ready to go to Vancouver Talmud Torah.

“Once they leave, I am pretty exhausted, so I have to go back to bed and lie down for a couple hours,” she told the Independent. “I try to get outside every day and go for walks around our neighbourhood. With the weather becoming nicer, sometimes I will see a friend very distanced outside on our patio. I get my kids’ stuff ready for the next day for school … try to exercise and rest. I often write and usually have lots of doctors’ appointments, for the most part, over the phone or via Zoom. Then I get ready for my kids to come home. We try to have a normal evening of homework, dinner, bedtime and then time with my husband. Then rest again.”

That’s if she’s feeling OK. “If I am unwell,” she said, “then antibiotics and the meds I have to take to ensure I don’t have an allergic reaction to the meds keeps me mostly in bed. The meds make me feel very ill.

“If the infection is severe, then the antibiotics will require hospitalization, either inpatient or day treatment, to be delivered intravenously through a PICC [peripherally inserted central catheter] line.

“In terms of treatment,” she said, “I give myself weekly subcutaneous intravenous immunoglobulin infusions, which I infuse into my stomach through four needles.”

Because of her health, Goldman, a sports radio and television producer, had to stop working in 2017. She also has had to adapt how she volunteers at VTT, something she loved doing in-person. Unable to go into the school anymore, she said, “I have spent a lot of time volunteering virtually and helping out at home. I think I have become a master at cutting out projects for the school.

“Our Jewish community has been integral to our family,” she said. “Our children’s school has been the one constant in their life when everything else has been very chaotic. We travel 45 minutes each direction every day to bring our kids into Vancouver to attend VTT. We are eternally grateful for the love, support and kindness that the Vancouver Jewish community and Vancouver Talmud Torah has shown our family. They have lifted us up when things couldn’t have been more difficult. In turn, my kids could not feel safer, more well-loved and more connected with the Vancouver Jewish community.”

Goldman is a lifetime member of CHW, formerly known as Canadian Hadassah-WIZO, and has been a supporter of Jewish Federation of Greater Vancouver’s Choices event. In her younger days, she attended VTT and went through the entire Young Judaea summer camp system.

Her parents, Paul and Claudia Goldman, are also involved in the local and national Jewish communities. Her mother has been a volunteer with CHW for four decades, in many capacities, including becoming a national president and its lead representative internationally. Her father has served on synagogue boards and as a member of the Federation task force that led to the establishment of the Richmond Jewish Day School; as well, he has been involved with the Centre for Israel and Jewish Affairs and its predecessor, the Canada-Israel Committee, including as a member of CIJA’s national board.

During the pandemic, said Rachel Goldman, “The only way I could maintain close contact with my parents and my extended family was for them to limit their own activities in compliance with my specialist’s immunological protocols in order to protect me from potential infection. Those precautions are only now being partially loosened by my specialists.

“I had to home-school my two kids for 22 months during the pandemic as per my medical team’s instructions,” she said. “The kids only returned to full in-person schooling in March of 2022.

“If anyone goes into a high-risk environment or is exposed to anyone with COVID, then there is an isolation period of at least 72 hours, as has happened since the gala.

“I am still not able to attend anything at my kids’ school, their birthday parties, dance recitals, etc., any situation that occurs indoors,” she said. “Also, I am not able to travel via commercial airlines currently, which is very difficult since my sister [Naomi] and her family made aliyah eight years ago.”

Goldman wears a mask anytime she leaves her home, which is rarely, unless she is outside with her kids.

“If anyone in the house is sick, masks go on and I am double-masked,” she said. “If anyone is COVID positive, as happened in the last week, I have to leave the house for an extended period of time and we will have to isolate. I have not been inside in public since the beginning of the pandemic outside of medical appointments. I am just starting to have very distanced visits with a few friends now that the weather is getting better. Outside is the best and safest place for me.”

Her immediate family only recently started to take their masks off and, if they go into crowded places, they continue to mask.

Goldman has been to Israel twice for treatment, most recently in January 2020, after two years of constant hospitalizations for infections that stemmed from a sinus surgery she had in the hope of reducing infections. She said her medical team concluded “that the complexity of my condition required highly specialized expertise to determine a plan for continuing treatment, but none was available in Canada…. I conducted an intensive investigation for the relevant expertise, both in the U.S. and internationally, and determined that my best choice was Jerusalem’s Hadassah Hospital. I chose Hadassah because of its reputation as one of the world’s best research hospitals and, in particular, its multidisciplinary approach to diagnosis and treatment.”

Unfortunately, the medical tests – including many not typically available in Canada, as well as a complete set of genome sequencing and genetic testing – were interrupted by COVID. Goldman was urged to return home immediately. “At the time, they did not divulge why but, as time progressed, it became clear that the reason was due to the start of the COVID-19 pandemic,” she said.

Next steps for Goldman would involve establishing a new baseline. Because her current treatment includes the introduction of immunoglobulins extracted from the blood cells of others to boost her immune system, she said many of the tests that look at antibodies give false readings, as they aren’t interpreting her own system. “As a result,” she said, “it will be necessary to take me off all medications in a closely monitored hospital setting to be able to zero in on precisely what is going on with my immune system, in order to determine the best course of treatment going forward.”

The risk of doing this during COVID – and an increase in other respiratory diseases being treated in hospitals – has been too high and Goldman’s medical team is not comfortable with her flying on a commercial flight.

“I am now in the process of working towards re-setting a timetable with Hadassah to continue the process that was interrupted in 2020,” she said. “The logistics are complicated, but I am hopeful that I’ll have some clarity on that very soon so I can restart this process in the hopes of regaining some of my life and freedom back.”

It had been five years that Goldman’s aunt had been wanting to nominate Goldman for a Courage to Come Back Award.

“Finally, while hospitalized over the winter holidays, I agreed,” said Goldman. “I got the call from [chair] Lorne Segal and the Courage to Come Back Awards about winning a few months later … right before my kids’ spring break. I was shocked at first because this was the first time I had ever shared anything about my illness publicly. Even people closest to me didn’t really know the details and extent of my health condition.

“I didn’t realize that the way in which I have dealt with my health condition was something to be celebrated. Once I started thinking about it some more, I was truly humbled and very grateful to be recognized. I realized that this process, for me, was really about giving me a voice and the ability to hopefully help and inspire others with complex chronic medical conditions who are suffering in silence.

“By getting my voice back, it has allowed me to do more than just survive,” she said. “I decided that courage is absolutely something to be celebrated. I want to show my kids that, despite all of the obstacles being thrown at me and our family, we can rise above it all and have a beautiful life.”

Belief in God gives strength

Author Cheri Tannenbaum gives a talk about her book, A Woman of Few Words. (photo from Gefen Publishing House)

“Happiness is a choice,” writes Cheri Tannenbaum in her book Woman of Few Words: My Creative Journey with Dystonia (Gefen Publishing House, 2019).

No one would blame Tannenbaum for not being happy, for staying in bed, for giving up. But that’s not who she is. “From the first day of my illness to this very day,” she writes, “I wake up each morning, say Modeh Ani (the prayer said upon waking in the morning), push myself out of bed, and consciously and deliberately choose life.”

Born in Edmonton, Tannenbaum is the oldest child of Samuel (z”l) and Frances Belzberg; the family moved to Vancouver when she was 16. With refreshing honesty, Tannenbaum shares her struggles with anorexia, but also some of the ways in which she was a “happy, fun-loving, gregarious, outgoing flower child” when she was in her teens. She writes about how she became religious, and it is her strong belief in God that has buoyed her since she became ill with dystonia at the age of 20, the first sign of which was that her “handwriting suddenly became totally illegible.” As well, her voice became monotonic, and other symptoms appeared, including severe difficulties in walking and, eventually, speaking, a symptom that, very much later in life, was remedied, as the unexpected result of medication intended for another purpose.

Woman of Few Words details Tannenbaum’s life with dystonia, which, according to the Dystonia Medical Research Foundation, which was founded by her parents, “is characterized by involuntary muscle contractions and spasms.” She openly talks about the time she attempted suicide and the difficulties she had in having children. She offers thoughts on living with the illness and lessons she has learned, as well as several pages on dystonia and many inspirational quotes from various sources.

Tannenbaum has a bachelor’s in psychology and a master’s in human development. She has followed her passion – art – in more than one creative direction. She has a long-lasting marriage, three children, grandchildren, and family and friends who care about her, and she has lived in several places in the world, making her home in Efrat, Israel. As she writes, “Dystonia is not my essence, nor does it define me.” It does, however, present many challenges.

“If I didn’t have the belief that there is an all-loving, all-powerful G-d who runs the world and has a master plan, then all challenges are just random; things that happen are just occurrences coming from nowhere…. Most probably, those challenges would feel meaningless and purposeless,” she told the Independent.

Tannenbaum responds to every reader who sends her a note. “The notes I have gotten have been extremely positive, telling me how I have helped them or given them a different perspective, etc.”

She said, “If I were to have gotten only one response that I have touched one person’s soul then I have accomplished what I set out to do – baruch Hashem, I have gotten more than one.”

Tannenbaum’s mother shared some of the ways in which her daughter’s illness affected the family.

“Cheri’s illness was slow in showing itself so, at first, her tripping or falling or dropping things was almost a joke for her siblings,” said Belzberg, who has three other children. “I took her to our family doctor, who said it was just teen angst, then that it was physiological, so she saw a psychiatrist, who said she was fine, so back to the GP.

“As her condition became worse, I began shopping for different kinds of medical advice locally and even to Scripps Clinic in California, and still no answers.

“In the meantime,” said Belzberg, “Cheri met Harvey, married and moved to Los Angeles … and her condition worsened.”

Belzberg said it took almost five years for them to get a diagnosis and a name for her daughter’s condition: dystonia muscular deformans. “There were, at that time, three known patients,” said Belzberg. “Today, we have several hundred on this continent alone.”

With no known patients and no known treatment or cure, Belzberg said, “My husband mobilized with the help of two doctors from UCLA [University of California, Los Angeles], Dr. John Menkes and Dr. Charles Markham; we gathered about five or six known neurologists from across the U.S. and began to do research. Meetings were set up for every two weeks and both my husband and I monitored the meetings between the experts … with the whole purpose of finding everything there was to know about the disease and how to treat it.

“Word got out that this was being addressed and there was more interest from within the research community,” she said. “We got a grant from the NIH [National Institutes of Health], plus our own … financial support, to establish ourselves, and began a series of research conferences with different doctors with different specialties. That was almost 40 years ago and, this June, there will be the Samuel Belzberg 6th International Dystonia Symposium in Dublin, Ireland, the latest in our international annual meetings.

“Through our persistence, as parents, we have created an international research body with a large patient list and researchers waiting to have their grants financed,” said Belzberg. “We also – as parents and ones who are crucially and emotionally involved – started our own scientific board and monitored them ourselves. We set a precedent – no other research board that we know of allows lay people to actually participate, verbally, in the discussions as they ponder their findings.”

Belzberg noted that funding is always a concern because dystonia “is not a well-known disease or a recognizable name, though we fall in the category of MS [multiple sclerosis] and Parkinson’s.”

Asked what advice she would have for a parent of a child with a chronic illness, Belzberg said, “Every family has to deal with their own crises emotionally, spiritually, within their own strengths, and persist in finding answers. Chronic illnesses can be very wearing both for the patient and the family, so it takes a great deal of tolerance and understanding on the part of each to make it through the day.”

For someone who just found out they have a chronic illness, Tannenbaum said, “I would first give them a big hug and sit with them, hold their hands and just listen to them vent – how they feel about the diagnosis, their anger, their fear, their hopelessness, their ‘why me?’

“When they would be ready to hear me, I would tell them that there is a G-d, master of the universe, who loves you more than anyone else loves you in the whole wide world. Everything G-d does is for the good, even though I know it doesn’t feel that way right now. This is a test that G-d knows you can pass; otherwise, He wouldn’t have given it to you…. This is an opportunity for you to grow and to bring out your hidden potential and strengths that you never knew existed within you. Through this test, you can create miracles. Through this test, you can bring good and G-d into the world. Depending on your attitude and perspective, you will be able to help and change other people’s lives. This test is bringing you farther along to fulfilling the potential that only you can do.”

Not defined by illness

A scene from Semicolon: The Adventures of Ostomy Girl. (photo from Vancouver Jewish Film Festival)

The photo of Dana Marshall-Bernstein being hugged by her mother, Cari Marshall, captures the love at the heart of Semicolon: The Adventures of Ostomy Girl.

When the documentary was filmed, Dana was 25. She had been dealing with severe Crohn’s disease since she was 4 years old. With less than four inches of intestine left after numerous surgeries, she receives all her nutrition intravenously. At age 16, she had her first ostomy – surgery to make an opening in the body so that body waste can be discharged. Poop jokes flourish in the family, one of the many ways in which they cope, and the brief Ostomy Girl cartoon that is included in the film shows the sheer strength of will this young woman possesses.

Over the months of filming, Dana – who lives with her parents in Las Vegas – is in and out of Cleveland Clinic in Ohio, where she is treated by some seemingly amazing doctors, skill- and personality-wise, such as Dr. Feza Remzi. Her health gets worse and she finally makes the decision she understandably has resisted for so long – to be put on the transplant list for a small intestine.

At times, Dana seems younger than her years, so vulnerable; at other moments, her literal life-and-death concerns add years. Somehow, with the help of her parents – especially her mother, but also her father, Ed – Dana has led a relatively full life, as normally as possible. Somehow, she still has her sense of humor. Somehow, she has the courage and the energy to try and help others, through awareness and fundraising events for Cleveland Clinic and the Crohn’s and Colitis Foundation of America.

Semicolon screens at the Vancouver Jewish Film Festival (vjff.org) on Nov. 10, 3:30 p.m.