My Hardening Skin Is Turning Me Into A Doll | SHAKE MY BEAUTY

SHIRLEY ALVAREZ: I’m a doll made of flesh and bone. The ‘Tragic Doll’, that is what I call myself. That is my persona. That is the way that I express myself. SHIRLEY ALVAREZ: I think my lowest point in life was probably when I was a child, I think, as soon as I was diagnosed. COMM: At just 9 years old, Shirley was diagnosed with a rare condition known as scleroderma. SHIRLEY ALVAREZ: The progression was so fast, it happened in a matter of weeks. SHIRLEY ALVAREZ: It’s a very complex disease but it’s an autoimmune disease that affects the connective tissues and it makes the skin very hard, like stone from the inside out. SHIRLEY ALVAREZ: I started showing symptoms when I was about the age of 9. SHIRLEY ALVAREZ: After a couple of weeks, we found out it was scleroderma. TIFFANY ALVAREZ: We are always together, you know, since growing up. TIFFANY ALVAREZ: She’s always been like dancing and always been like a ball of energy. SHIRLEY ALVAREZ: I went from walking to using a walker and then a couple of months, using a wheelchair. SHIRLEY ALVAREZ: I remember sitting in a chair, I was very exhausted and I looked at myself in front of a mirror and I asked, ‘Why me?’ Like, ‘Why is this happening?’ Like, ‘What did I do to deserve this?’ And I just felt pity for myself and after few minutes I was like, ‘You know what? I am going to snap out of it.’ SHIRLEY ALVAREZ: And from that day forward I changed my mentality and I just decided to think positively and just go with it and make the most out of it every day, which is what I have done until today. COMM: Not letting her condition get the better of her, Shirley discovered her love of music, art and fashion as a way to express herself. SHIRLEY ALVAREZ: It’s true. I like a lot of black. When I was about 16 years old, I discovered Goth. SHIRLEY ALVAREZ: It matched my style. It matched my personality. SHIRLEY ALVAREZ: I look at fashion as an art form. I like to express myself with fashion. It taught me a lot with my confidence. I didn’t think I could dance or move that same way again. But I decided to embrace my limitations, even use my chair as a prop and I began dancing with my sister without any fear. COMM: Shirley also created a character for herself to help her own and celebrate her differences. SHIRLEY ALVAREZ: So the reason why I started the concept of the Tragic Doll was because I wanted to give myself a persona to be creative with. SHIRLEY ALVAREZ: I always felt like I was trapped. You know my spirit, my soul was trapped in a foreign body and so I thought a doll was the best concept of expressing how I feel living with scleroderma. SHIRLEY ALVAREZ:  I might be a little fragile looking, I might have porcelain-like skin but I feel like there’s this immense strength within myself and I want to try to project that. SHIRLEY ALVAREZ: I think I have gone through the worst in my life that anything else is just microscopic. SHIRLEY ALVAREZ: Your perspective is what really counts the most and I always try to either, you know, be positive or add some humour in my life. TIFFANY ALVAREZ: She is the reason why my life is so interesting. She is the reason why I love to dance. She is the reason why I am into fashion. You know she influenced me a lot with all these things. She is a wild thing, she is rebellious and she is an amazing person. SHIRLEY ALVAREZ: I think when you have pain then it’s only going to build character, it’s going to build your strength, I think. SHIRLEY ALVAREZ: Life will never be perfect. It will never be a perfect path. SHIRLEY ALVAREZ: Over the years, I think the tragic doll helped me find a way to be more confident in my own skin and accepting that there is alternative beauty. I mean its showing people a different kind of beauty and seeing beyond that.

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