How?

Hi, I’m here again. I don’t really have any ‘big deal’ subject for today… I just wanted to chat a little bit. I mean, I’ve been thinking about the everyday chores we do and I was wondering how is it for you with Stargardt.
I know probably not many people – or none at all – who reads this blog, is someone with Stargardt’s disease, but I think it’s important to write to them – to us.
How is your everyday life? Do you still drive? Or have you lost that right already? Or maybe you even never got the chance to do it, and probably – and unfortunately – never will. Do you go grocery shopping? Do you go alone? Does anyone help you? Do you have kids? How is it to have kids in this condition and situation in your life? Do you kids have the disease? Did you plan on having kids or they just came, and turned out to also have Stargardt’s disease? How do you feel? Guilty?
And to you who haven’t had any kids yet, would you like to have them? Do you think you can take care of them in your situation? Do you think you shouldn’t have kids because you are afraid they might have the same condition? Did you know you can check that before having kids?
I’ve been raising way too many questions in my head. Lately most of them about kids. You know. I’m not planning anything, but I’d like to know the possibilities and options and I’d like o head about it, from people struggling with the same thoughts or even from people who are living it right now.
But I also think… Do you have a job? What do you do? Do you like what you do? Or you only do it because it’s the only thing you feel like you can do to make some money to survive, considering the probably – I don’t know really if there are many – few options available for people like you – like me – to work with?
Do you take uber? Taxi? Bus? Do you walk? Do you have someone to drive you when you need? Some people (as if having this disease wasn’t enough to make life hard) don’t just have the disease, they don’t have the money to pay for a good transportation option. Some of them don’t even have the money or the chance to find out why they can’t see like the other people because they can’t even go to a doctor, especially a specialist. They’re so expensive. And it’s understandable, I mean, the tests and the equipment are so expensive for them (or hospitals) to purchase. So they need to pay for that. But some people have no idea of what even IS Stargardt’s disease, and that they’ve got it.
How can we live in a world like this?
I’m very angry right now. I can barely help myself… And that is because I can still see enough to work at something I like, but not enough to drive anymore. And I’m angry because I can still have nice things with the work I do, and I can go out and enjoy my life a little bit, knowing what my ‘problem’ is. Sometimes I even try to forget. But how about the people who don’t even know anything about their problem? THEIR STARGADRT? How about that? They don’t even know what they’ve got – or not – to have the chance to try to forget. Do you understand what I’m trying to say?
I can’t help ME in all my condition allows me to do, how can I help the other person? How can you help yourself? How can we help each other? And now I mean not only the people with this disease but NORMAL individuals, even though they might not even have a clue this disease existed before or even if we explain it to them and even if they read about it, they still might not understand how it works.
But I’m asking you, Stargardt or Stargardt-less people… How should we help each other to make our lives easier and our everyday life more compassionate and happy?
I don’t want to be angry about it all the time… Help me.

 

-M.

 

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