A short intro for new readers: I am a 24 year old woman and I became visually impaired between the age of 10 and 14. Due to my eye-condition (Stargardt’s Disease) I have lost my central vision to the point the doctors told me I had a vision of 5% left. Life is full of challenges but I try to keep a positive attitude. I like to share my thoughts, ideas and experiences with you so I asked Steemers what would be interesting to tell about from my perspective.
Reading guide
In answering all of your questions, I came to realize that it became a pretty long post. So I’ve decided to split it up in 4 or 5 posts just to keep it fun (instead of having to read a dreadfully long post all at once). Some questions were hard to answer shortly, I’ve tried it but I’ve also decided to do an extended version on some themes because there is just so much to tell. I marked the questions with an * at the end to indicate that I will be doing a separate/extended post on those themes. Lastly, I hope you enjoy reading my answers. I did not wrote this post as a whole story so you can also skip to the questions that you think are interesting without having to miss something like a core storyline.
So, let’s get started!!
Me om my race bike, wiehoo!
What impact does my visual impairment have on my relationships in general? Family/boyfriend?*
Friends and family are very important in life itself and luckily for me I am blessed with a big family. Although I have a hereditary eye-condition, I am the only one in my whole family who’s got it (that is part of the reason why it took the doctors so long to figure out what I had). My family is very committed to me (if that is the right word, I’m not sure). They are all willing to help me if I need it and they will go through great lengths if they had to. It’s so nice to have such a loving family. For example, it happened once that I was riding my bicycle heading home and I was not aware of a big intersection being under construction. I panicked and I could not see other cyclists (whom I could secretly follow). It is my family that gives me the courage and ‘safety net’ to just go outside because I know that I could always count on them (and call them to safe me in those situations).
I also have a boyfriend with whom I’ve been together with for over 5.5 years. He has always treated me like a normal person, as anyone should. And he never pitied me, as nobody should. My visual impairment is not a big of a deal in our relationship, though, at the same time it is. We like to be active and we do all sorts of activities together, also the ones that look impossible but my boyfriend makes it happen because he watches over me. He gives me the courage and confidence to just do it and not be afraid. And I will trust him ‘blindly’ in that. For example, he bought me a race bike so that we could cycle together. An activity that is quite impressive with my bad vision haha. (I am always alert and not reckless, just so you know).
Do I get mad for losing my vision?
I can only remember crying a lot on the day I was diagnosed. I’ve probably cried in the following days after but that period of time became a bit blurry to me. People asked me then (and they still do sometimes) if I don’t wonder why I got visually impaired, like why did it happen to me? What did I do to deserve this? Well, I never thought of it like that nor will I ever do since it is just a fact of life. I sometimes say I won the lottery, just not the one with all the money. (My eye-condition is hereditary and only if both parents carry the specific gene, after that there is still a chance that 1 out of 4 children actually has the eye-condition… I have 1 brother and 2 sisters (normal sighted), so like I said, I won the lottery haha). Of course there are days that my impairment bothers me more than other days. You can’t just always be ‘not bothered’ about it. As long as the unhappy, frustrated, and sad days are in the very minority, then you will just be fine. Over the years there were times I struggled with my impairment, often due to certain events/phases in my life that were very confronting. So I sought professional help. In the end, I never got actually really mad about it. It is easier said than done but there is no use in getting myself down.
Can I sketch? For example, sketching a photograph without studying it?
Mmm, good question. I can sketch/draw, but not realistically looking things (with the right proportions etc). I am not sure if I am not able to actually sketch because of my bad vision or because I am one of those people who just cannot sketch haha. But… If I do have to sketch a picture without studying it, it will suck. If I sleep, eat, shower and life together with the picture, it might look something like the photograph. I think I would sketch the picture more based on my imagination than what the actual picture looked like. For example, if I remember that there was a tree in the left corner, I would just draw a tree (and not the tree) in that corner.
Are my others senses better? Can I taste better?
Haha, I don’t think I can taste any better. But I looked into this subject. Turns out that it is not so black and white. I found this video that explains it very well and it is quite interesting. Look on youtube for --> Heighten Your Senses By Simulating Blindness!)
As for me, I don’t think I can hear any better, as in superhero hearing, since I am not completely or (yet?) legally blind. I do think I rely on my hearing more than normal sighted people. When hearing sounds I quickly know what it is and where it came from. For example, when I am bicycling (on my normal bike) I hear what type of car is coming (big, small, bus, truck etc). Unfortunately, electric cars are tricky since you hear them quite late in their arrival. And as for walking in the dark in the middle of the night… no problem, I know exactly where all my furniture is. And besides furniture, I walk based on my cognition, meaning that if I remember earlier that all my shoes are still on the ground, I know where not to walk.
Thank you for reading, I appreciate it! If you have are interested in things you did not read here today, feel free to ask me anything!