I believe it's very brave to have this disease and still try to make the most of it. It takes a lot of courage. It's not that obvious to live by yourself, when you depend on other people to do most anything for you. You need nurses to bathe and dress you. Different assistants come in at different hours to cook your meals and help you eat. You need a driver to take you out and someone to do your laundry and clean your house.
Assistants can make phone calls for you, write letters, type your emails. They listen to you and become friendly with you. It's very personal to work as an assistant and it's hard to separate work from home. Because you care. Because you feel for them. Because they become part of your life.
It were 4 hectic months. Tough, both mentally and physically. You can't help but worry when no assistance is provided, that the person you are looking after is okay. It takes its toll.
But in the end, the person you look after, will still have the disease. You go home to your family and you are happy you are independent. But are we as independent as we believe? Don't we rely on other people for many things? Nobody can live a life without the help of others. I'm grateful for the help people offer me. I tell them. I'm not used to people helping me, so if they do, I feel awkward and try to make sure I don't owe them. I don't take advantage of the people helping me, on the contrary.
I did like to work as a personal assistant and I might do it again. I would try to keep more distance though. After all, it's a job and you get paid and the person you take care off is still your boss.
Together with all the people out there with Friedreich's Ataxia, I hope a cure will be found.
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