I felt reflective after class last week. We introduced HIV in our Global Health lectures. In our discussion about the auto immune disease and its impact on the CD4 T cells, all I could think about was my little sister Millie. She has a Severe Combined Immune Deficiency (SCID), which is a primary immunodeficiency in which there is a combined absence of T-lymphocyte and B-lymphocyte function. Both HIV and SCID cause extreme vulnerabilities and leave people extremely susceptible to very serious infections.
I often try and forget about how serious SCID is for my sister. She wasn’t diagnosed until she was five and I will always remember the words of the doctor reverberating around the room as he said “she was lucky to have made it this far.” Chicken Pox almost killed her. Now she has several weekly immunoglobulin transfusions. This treatment doesn’t stimulate Millie’s immune system, it is just a replacement and is something that she will have to have for the rest of her life alongside four other medications that she takes daily. Her doses were administered intravenously but now my mum is trained so Millie can sit in the comfort of her favourite pink fluffy bean bag, watching Eastenders, in her cow onesie and receive her infusion subcutaneously. She always has two little “alien” bumps on her stomach from the injections. Despite best efforts, Millie still spends a lot of time confined inside four walls at Sheffield Children’s Hospital. She calls it her second home. The Flu forced her to spend four months in hospital over Christmas last year. A common cold keeps her in bed for weeks. Countless holidays have been cancelled due to Millie not being well enough to go.
After class the other day, I felt a pang of guilt. I’m here in South Africa and Swaziland, places that Millie will probably never visit due to risk of transmission and the fact that she can’t have many vaccines. So I decided to FaceTime her and catch up. Millie answered quickly and had to rush off to dance class. I started being sentimental and Millie told me to get off the phone to her and go and make the most of the trip. That’s the thing about Millie that I love the most: she encourages me to do everything and live every second for the both of us. I rarely see her down and she takes each day in her stride. Her bright rosey cheeks and warm smile are infectious, and she loves dancing.
Dancing is her escape. It reminded me of a video we watched in Visual Literacy called “If only for a second” that the Mimi Foundation made. The beautiful video focuses on cancer patients having a carefree moment even if just for one second. That is what dancing is for Millie. Sometimes she finds it difficult to regularly attend classes; fatigue is one of the main symptoms of her illness. Whenever she can, she puts on music loudly and we will jump around our living room until we can’t dance anymore. Last night in KaShoba, I was with the five children outside dancing and jumping around, trying to forget about my stomach cramps. It reminded me of being with my sisters at home. Despite the fact that I was in a rural village in Eswatini with people I had never met before, dancing and singing always helps me feel carefree.
The whole journey to KaShoba was filled with moments like this. Filling up the tank at an Engen Matata petrol station, we had a real throwback moment. Sean Kingston and Justin Bieber’s Eenie Meenie was blasting, and everyone inside the van was jumping as well as the six gas station attendants outside the vehicle. In that moment, everyone was having fun and just experiencing the moment. This happened again at Mrs Mkoko’s mother’s house. As we were going to leave, we started playing music and everyone danced again. Twenty or so people who were all from different worlds united in a moment of careless fun.
This got me thinking about the power of dance and music. Medicine is needed to physically make someone better but sometimes treatments come with side-effects and worry. Every person, whether they are healthy or not, needs moments to let loose, forget their worries, and just live. Dance and music is that medicine for me and from what I’ve seen over the past few days, it is a medicine that needs no instructions and works in any language or culture. That is the real beauty of it.