A SIMPLE hug means more to Dianne Lang than the “space-age medicine” she is taking to keep her alive. Because the rare form of cancer that has destroyed her immune system also means that Lang cannot be touched.
Lang’s form of blood cancer, Primary Mannin Binding Lectin Deficiency and Secondary Humeral Deficiency, is so rare that doctors are yet to find another patient in Africa suffering from the disease.
When Lang receives treatment however, nurses are able to touch her, albeit with gloves, and that little act of humanity makes treatment day a good day.
“I am undead today,” says Lang in the way she explains a condition that goes way beyond normal.
“But tomorrow I go to hospital and because my nurses will also wear sterile clothing and we will all be in the isolation unit, this means that I can get a hug. It will be a better day tomorrow.
“Going to the hospital for treatment is the only place I go anymore.
“The nurses are like my family. They are the only other people I ever see. “When I die I hope one of them will be there to hold my hand,” she says of the dedicated team, who tend to her physical needs as well as her basic human need to be touched.
It is Sister Erika Bond, and her team of nurses, who look after Lang when she goes for treatment at Netcare Greenacres Hospital every two weeks. It is Netcare Greenacres that receives the blood cells of 10 000 people – blood cells that provide her with a temporary immune system.
“I have no immunity. Where someone with HIV/Aids can build up their immune system, I don’t have the building blocks. That is why I need the help of 10 000 other people, twice a month, to give me a semblance of an immune system.
“This is the only thing that keeps me alive. Being alive is my new normal. It is no longer about being healthy,” Lang says.
Bond, who manages the hospital’s day clinic, says Lang is very special to her team.
“She has been coming to us for her treatment for almost four years now.
“The one thing that you won’t learn in nursing school is how to really care for your patient. You cannot divorce that deep sense of caring for your patient as a human being and the medicine from each other.
“We try to practice patient-centred care and I do believe that this is where we make a difference,” she says.
Despite being very busy with patients who come for day procedures in three theatres at the hospital, Bond says there are times the human touch are the most healing things a nurse can do.
“Being a nurse is in my genes. Caring for someone comes from a place very deep inside you. A patient is much more than a diagnosis.
“People crave caring. They want love. Even though they are strangers when they arrive, we try to make a difference in their lives,” she says.
Life has been tough for Lang, who in 2004 received the Clarins/Fairlady Most Dynamic Woman Award and an SA Hero award from former president Thabo Mbeki, for her work with vulnerable children.
Because she has no immune system, she is required to live in a sterile bubble – as even a common cold could kill her.
Lang has to “fish” for her medication when couriers arrive with a delivery at her door.
Using a fishing rod, she lowers her house keys to her caregiver, who then opens the door to receive the medicine.
While Lang stays isolated in her bedroom, her caregiver takes care of the household duties with the pair never interacting.
“For me the bravest decision every day is to stay alive. Every morning I wake up and make a choice. No, wait, the first few minutes I am a bit sorry that I woke up again,” Lang says.
“But then I ask myself: Do you want to die today? Or do you want to live. At the moment the only control I have left is the decision not to kill myself.
“People tell me I don’t look ill, but if your blood is messed up you are finished. It is like a beautiful petrol-model car filled with diesel. It will never go anywhere,” she says.
“It is the most terrible fate in the world to end up with a rare disease. In order to survive you must become your own detective.”
Lang’s detective work has helped her to track down 218 other people worldwide, who share her disease.
Through a support group, she discovered that the only way doctors can heal her, is to create a new immune system using genetic therapy.
But Lang does not have the money to explore this option.
For Lang finding a new mission in life is what ultimately keeps her going. Recently, she spearheaded a campaign to have apartheid hitman, Eugene de Kock, released from prison.
“I felt a great sense of relief when he was released,” she says.
“De Kock was imprisoned for the crimes of a whole government but nobody wanted to help me get him out,” she says.
“I sent him a letter and I received one back, written in beautiful handwriting with a fountain pen. The letter said: ‘I am a lost cause. Don’t waste your time on me’.”
But Lang, in need of a purpose, took up the challenge.
Her latest mission is to help people heal by telling their stories.
“I can only choose to live today. As long as I can contribute, I will have a purpose. I want to create a place where people can feel they are worthy.”