Being normal

“Every child, adolescent and young adult wants to be ‘normal’. Every kid wants to be picked for a team, or take part in a race. You don’t necessarily want to win, coming midfield would be fine, but you really don’t want to come in last! I used to come last, every time. It’s difficult to be ‘normal’ when you have a chronic illness or terminal disease. I didn’t want to be seen as the ‘sick girl’ or even the girl with the ‘blue lips’. I loathed the way people used to look at me; eyes full of pity. I didn’t want their pity; I wanted them to see me as ‘normal’, as an equal,” these are the opening words of Tina B in the latest International Children’s Palliative Care Network (ICPCN) blog

Tina is a young South African woman who was born with congenital heart disease and Pulmonary Hypertension. Tina spent the majority of her teenage years trying to be normal despite being left exhausted and gasping for air from any kind of physical activity. In her twenties she was reduced to being on oxygen for 90% of the day and sleeping for 18 to 20 hours. Tina shared, “this constant quest to be accepted by society is not a new one, but it is that much more acute for people like us, who are sick and just want to do the sort of things others take for granted. Mundane things like being able to wash and dry your own hair, be able to go grocery shopping, not to have to fight with tubes to get dressed, have the energy to go to lunch with some friends. These are the things that the world sees as ‘normal’, everyday life. But for us, those are the things we look forward to.”

After a long 2 and a half year wait, Tina received a lifesaving transplant. “Being sick, especially with a terminal disease, is far from fun. In fact it’s hard and tiring and day after day of feeling dreadful. But isn’t that, along with all your other amazing gifts, what make you the incredible person you are?  If you weren’t sick you probably wouldn’t appreciate doing the inane things in life or really understand how precious life is and how much you are truly loved,” said Tina. She is now leading a normal life and has taken part in her very first Cape Cycle Tour. To read ‘Being normal’ by Tina B, click here.