In 2015 Jamila was on a mission to finish her Ph.D., while dancing, running, swimming, doing yoga and being happy. She was studying about Sufi rituals and Muslim women’s agency through embodied experiences of Sufi rituals in South Africa. She wanted to understand how divine experiences such as closeness to God could actually be experienced as an embodied selfhood expression. Complex and beautiful! Searching for God through the body and the body movement in ritual praxis.
In early 2015, while she was living in England, she developed a complex neuralgia and muscle condition due to an intestinal bacteria infection. At the time, the symptoms were muscle pain, chronic fatigue, stiffness, difficulty sleeping and problems with mental processes ("fibro-fog") – such as memory and concentration. She didn’t tell anyone because she was in the last stages of her thesis, so she kept going. Until she couldn’t anymore.
In November 2015 her condition aggravated and she became bedbound for six months, unable to walk, to eat or to engage in any other activity without help. From a professional dancer to a professional vegetable... No one could tell what was wrong with her.
She saw five neurologists, four rheumatologists, ten different physiotherapists, two nutritionists, through both private (self-funded) and NHS. Some doctors said she had fibromyalgia, chronic fatigue syndrome, post-viral fatigue, post-traumatic syndrome, POTS, etc.... She gave up her Ph.D., she lost her job, she couldn’t dance anymore, her family lost their savings, she was unable to travel back to see her family, her partner sold everything he could to help, and life was chaos.
After a year and a half without a diagnosis and much suffering, she was finally tested positive for chronic Lyme disease. Lyme is caused by Borrelia burgdorferi and transmitted by scapularis, the deer tick, and causes symptoms such as aches, muscle and nerve pain, and neurological dysfunction.
There are many controversies and media awareness surrounding this condition. Lyme masquerades or mimic other illness making it extremely difficult to detect. Infectious diseases specialists consider Lyme to be the ‘new great imitator’ (Fallon, Vaccaro, Romano, & Clemente, 2006: 122) because it mimics illnesses such as syphilis, chlamydia, and is often misdiagnosed as fibromyalgia or chronic fatigue syndrome.
Secondly, the polemics around false results from serological tests show that this is partly to do with the reliability of the tests themselves, and how tick saliva can interfere with and suppress the immune system (Andrade, Teixeira, Barral, & Barral-Netto, 2005). It is common for patients to receive false-negative test results (Strieker & Lautin, 2003) raising questions of authenticity or veracity about this condition.
Thirdly, there is misinformation regarding Lyme disease as a chronic condition. Medical doctors Kemperman, Bakken, and Kravitz (2008) suggest that on one hand chronic Lyme is over-diagnosed and sometimes over-treated, but on the other hand they also advise that doctors should provide genuine care anyway.
After initiating a Lyme protocol, she was able to finally finish her thesis. Another financial crisis hit Jamila’s Lyme journey. After being treated with six different antibiotics, ozone therapy, infra-red, hyperbaric machine, cryotherapy, herbal and alternative medicine supplements, she is still unable to function properly due nerve damage, constant pain in both muscles and visceral organs.
Still, she didn’t give up. She wrote a postdoctoral research proposal to study embodied healing process of infected Lyme patients in the UK. She got the attention of one University but she is unable to start working due to the severity of her pain. The acknowledgment of Lyme needs to be accepted with all sincerity, respect, and responsibility to the reality of the patient condition.
This is the first time she appeals to social media for help. Stem cell therapy in Germany is the last recourse Jamila is willing to try to help her in her debilitating condition and hopefully allow her to return to normal life.
This is Jamila's message to all who would kindly fund her treatment:
"This Lyme incarnation was born a chaotic body and process of pain. Yet, it stimulates the inner power and energies. For all my suffering and for what still has to come, I thank those I know and those I do not know, I send you my positive energy. The human being is essentially a being who needs to be loved and be happy. These actions promote not only an acceleration of energy cleansing in relation to me but when you help one, you are helping yourself and the rest of the Universe. Because we are all connected. The process of inner healing happens when we are prepared, without fear, open what awaits us, humbly thanking every day for the beauty of being here and now".
Helps us to bring Jamila back on stage, back to life and dancing.