Outsiders in London
All photographs: copyright © Milan Svanderlik - London - UK
CAROLE PYKE (# 17)
Born in London, England
Father born in Jamaica / Mother in Guyana
Ethnic heritage / Father: Jamaican / Mother: Guyanese
Carole is an only child born in London to a Jamaican father, an electrician, working for British Telecom, and a Guyanese mother, a midwifery sister. The family lived in Brockley where Carole recalls a happy childhood. John Stainer Primary School in Brockley was Carole’s first encounter with the classroom and she enjoyed it greatly. Sedgehill Secondary School in Catford was her next stop, by which time it was clear that Carole was heading for the top stream - highly intelligent, eager to learn and a consistently high achiever. As a teenager, Carole was not only academic but very sporty too - she was more interested in sport than in boys. “I wanted to be a Maths and PE teacher, a rather unconventional combination.” Carole tried her hand at lots of sports including gymnastics, the 100m relay and the high jump. She also played volleyball, netball and tennis too and she was ILEA (Inner London Education Authority) Tennis Champion in both singles and doubles.
Carole contemplated university but opted instead for work experience first. She got a job at Fire Brigade Headquarters and when the GLC set up its Sports Development Unit, it seemed like the ideal job, both challenging and stimulating, until Mrs Thatcher abolished the GLC, that is. Carole then moved on to work for the Sports Council and became a Regional Officer, promoting sport and distributing grant aid but also writing as a freelancer for a Caribbean sports publication.
At the age of 29, Carole embarked on her delayed university education, enrolling as a mature student at London Guildhall University; she opted for a Marketing with Communications course which suited her intellect and inclinations perfectly. “As a part of the course,” Carole says, “I managed to spend three months in a PR Agency in New York, an experience which was to serve me well later on, when running my own consultancy business.” Even more extraordinary was the three months she spent at the University of Amsterdam, where she undertook a study of European Sexual Cultures - it was the only course with no classroom work, just lots of visits to sex establishments! Looking back, Carole recalls: “My eyes were truly opened. I felt that I had been living in a box all of my life and, suddenly, someone took the lid off. It was a truly enlightening and unforgettable experience and has provided many amusing tales to recount over the dinner table.” On a darker note, Carole had to witness her mother succumb to breast cancer at the early age of 51, an experience which cast a long, dark shadow over her own life and her graduation. “My mother was a sort of a safety net to me; once she was gone, I felt very much alone and it felt like I had no-one to share my loss with; being an only child made it even worse.”
Carole continued her studies, undertaking a Master’s Degree at the University of Westminster, and commenced a career as a freelancer in the fields of marketing and public relations. All was going swimmingly when, quite suddenly, at the age of 38 her life changed for ever. Carole discovered some bald patches in her hair and, after a series of visits to the doctor and a scalp biopsy, she was diagnosed with Discoid Lupus Erythematosus (DLE is an auto-immune condition where the immune system starts to attack the body’s own tissues). This variation of the condition mainly affects the skin: “I used to get inflammation of my fingers and the pain was so great that I was unable to dress myself, hold anything, or even use a computer keyboard.” Then, in the light of Carole’s development of additional symptoms, she was diagnosed with full-blown Systemic Lupus Erythematosus. “The battles within my body were raging and I was grateful for occasional spells of relative wellness. There were periods of my journey with Lupus that were almost manageable: I got fatigued, of course, but during the good times, I felt really well and the days seemed bright and sunny again.”
Unfortunately, these periods of remission did not last. “One day”, Carole says, “I developed a numbness in my left leg and by the time I got to hospital, I had lost all the reflexes in that leg; then the right leg joined the party, an indication that my nerves were being attacked and were dying off.” The options before her were either life in a wheelchair or nine months of chemotherapy which might reverse the damage. Though the chemotherapy was a nightmare that seemed almost never-ending, the treatment did succeed in arresting the march of the disease.
“I have now lived with Lupus for over 12 years. The condition strikes without warning and when it does, normal life becomes almost impossible. I have been in and out of hospitals, casualty units, and ambulances so many times that I can no longer remember the number.” Carole works as a freelancer so, theoretically, she has some flexibility but as every freelancer will know only too well, if one is in the middle of a project, or immersed in planning one, unpredictable ill-health is something that causes enormous difficulties.
Carole has agreed to be part of this project because she feels she is a living example of how a joyful, active life, both personal and professional, can be turned totally upside down by the sudden onset of disease or a serious medical condition. “One week, you are living a normal, fulfilling existence; the next week things change and you feel like you are an outsider.” Carole goes on to observe: “It feels sometimes as if life’s train has left the station and, though I have my first-class ticket, it has left without me.”
Carole is reminded of the difficulties that living with a chronic condition brings each time she encounters a flight of stairs; getting up and down is often a challenge and, of course, there is nowhere in the world that is not full of steps and stairs, not to mention non-functioning lifts. “Lupus is an invisible disability outwardly: I mostly look like a fit and healthy person, so I frequently don’t get the understanding and assistance I need.” Carole adds: “On good days, I get through; on a bad day, it feels like I’m living in almost a parallel world.”
With her adoptive sister, Ola, Carole now runs a consultancy business called Eélan Media: “It’s a marketing agency with a passion for hugs, stories, transforming businesses and celebrating success,” says Carole; “We work with businesses to help them develop their brand online, create communities and develop profitable relationships with their customers.”
Carole describes herself as “Bald, Bold and Bodacious” and she certainly is all of these, a larger than life character who radiates a love of life, while carrying on her battle with Lupus, the enemy within - when it strikes, the condition turns Carole into an outsider, something she certainly wouldn’t be otherwise, and something she never expected to be.
Interview Date: 22nd June 2013
Updated: 7th July 2013
All was going swimmingly for Carole: highly educated and sporty, she had a flourishing business career; then, quite suddenly, at the age of 38, her life changed for ever. Carole discovered some bald patches in her hair and, after a series of visits to the doctor and a scalp biopsy, she was eventually diagnosed with full-blown Systemic Lupus Erythematosus, an auto-immune condition where the immune system starts to attack the body’s own tissues. Describing herself as “Bald, Bold and Bodacious”, Carole is certainly all of these, despite having to carry on her battle with Lupus, the enemy within. But when it strikes, as it usually does without warning, her condition turns Carole into an outsider, something she certainly wouldn’t be otherwise, and something she never expected to be.
Photography: London 2nd June 2013