Lety M’s husband and 28-year old son Junior had already died from Huntington’s Disease. Janet, her 26-year old daughter, was now in the final stages of the disease.
At first it appeared my assignment would be to make a memorial for “Junior,” her son. But quickly it became apparent that Lety – at home and at work – was surrounded by people who jealously avoided acknowledging her tremendous reserves of courage. Here Lety ruminates about the cards she’s been dealt: passing along the gene for Huntington’s Disease and the healing powers of her Dreamscape photomontage —
“When all this started, I ask: So many husbands in this world, why my husband? So many families, why both my kids? I went into a kind of a depression, mad at the world. I ask God. He didn’t answer. I thought there was no God, or God doesn’t love me or what happened? Sometimes I just get sentimental and Ok, I say, God don’t give you more than what you can take. I accept it now; to take care of his angels.
Sometime I look at the picture when I take my daughter to bed. The Virgin Guadeloupe – it’s like an inspiration to give myself courage. I look at it and say that’s what I have to do, to take care of her and be positive. I show my daughter the burro – look at the burro, this is how I am watching over you and your brother Junior.
I really don’t feel like an angel. Sometimes I don’t want to be here to take care of her. I want to go out and when I go out, I feel bad. To put everything in balance, I remember I’m running out of time to watch her. Junior was gone already at 28; Janet is 25 and getting worse and worse. After she’s gone, probably I will be gone too. To take care of his angel, God keeps me healthy but after that I hope and pray to God that I have a long healthy life – not too long – but good enough to enjoy myself.
If He want me to be happy, I’ll be happy. If He decide to take me from Earth, that’s fine. At least I don’t have no worries anymore. When I working in the bakery, a lot of people they say God has something good for you after. I’d appreciate what’s beautiful before I lose them – not afterwards. I’m not taking care of them because of something good for me.
I was thinking, I don’t know what I’m going to do with the free time but God, He got everything ready and prepared.”