As a mother, I can't see everything about my child！
Retinitis pigmentosa
Retinitis pigmentosa.
It is a progressive genetic eye disease with no known cure. The initial symptoms are night blindness, followed by loss of vision and vision, and eventually blindness.
I have no peripheral vision, so I can only see the middle part of my visual field, which is called tubular visual field in medicine. If you take two rolls of paper and put them over your eyes, the visual horizon is roughly what I see. Of course, the line between black and white is not so clear. When the light is good, I can see more, but as the disease progresses, I gradually lose everything...
I am 28 years old. My current binocular vision is 0.6 and my central field of vision is 5 degrees in dark environment (less than 180 degrees for normal people). I just became a baby mother this year. Although I look like a normal person from the outside, I am suffering a lot from the trouble this disease brings to my life and the changes in my psychological character caused by it.
For example, in a meeting, I accidentally drop my pen on the floor. It might be right at my feet, but I have to search for it for a long time. While I was searching, people around me might say, "Hey, isn't it right over there?" But I open my eyes so wide that I can't see...
For example, I often knock over the cup in order to clip food on the dinner, often found that the chopsticks stretched out with a grain of rice...
For example, in a small shop to buy things, I picked the good ask the owner how much money, but it happened that she drew a number with her hand, I looked at her face, can not see her hand is in her chest or beside, more can not see her marked out what number, had to excuse too expensive to leave...
For example, it's important and urgent to go to another office to see a colleague, trip over a wire, and drag the scanner from the desk to the floor...
For example, it was raining yesterday. I went to my friend's house to play. When I entered the house, her parents said that the umbrella should be put over there.
...
In this way, I am more and more resistant to going out alone, resistance to dealing with outsiders, always act like a naive child, so as not to appear so abrupt when the above situation occurs...
Sometimes I think it's because I look so normal. In fact, I've always thought I was normal, so I didn't want anyone to find out that I wasn't normal. I didn't want to explain why I was so slow, why I kept kicking garbage cans, fire hydrants, plastic signs that said "Be careful if you slip"...
Today, to do a 100-day banquet for the daughter, relatives and friends have come to congratulate, the scene is noisy, other people separated by three or five meters and I say hello, I can not find each other's eyes...... My husband wants to take me to thank his colleagues and friends for a toast at the table. He will introduce me one by one, but I don't know if the person he is introducing is the one I am looking at... Oh, how embarrassing... Later, I sat down to eat in silence, occasionally touching the back of the chair while holding the baby, leading to people asking if I don't usually carry babies...
I want to be a good mother.
But when I hold her, I look into her eyes and I don't see her mouth.
In the future, how WILL I send her to school, how will I attend the parents' meeting, how will I accompany her to grow up......
Okay, I know I'm lucky, lucky to have what I have.
I now belong to occasionally not strong, I will be fine.
About the Creator
Christmas is Not Always “Beer and Skittles”
If you find the holiday season challenging, you’re not alone. I have never been a big fan of Christmas. I have always found it a bit pretentious. It is a time for kids, really. I have not had kids in my life, so the "children's influence" around this time of year doesn’t occur.
By Calvin London23 days ago in Psyche
From Surviving to Living: When Rest Becomes an Act of Courage
When Survival Becomes a Lifestyle — And You Forget How to Live There is a quiet shift that happens when survival lasts too long. At first, it’s temporary. You tell yourself, “I just need to get through this phase.” Then weeks become months. Months become years. And without realizing it, survival stops being a response — it becomes a lifestyle. You don’t notice the moment it happens. There’s no clear breaking point. Just a gradual narrowing of life. Your goals become smaller. Your dreams become practical. Your emotions become controlled, managed, muted. You stop asking what brings you joy and start asking what is necessary. What is efficient. What is acceptable. And slowly, living turns into managing. The Hidden Cost of Constant Coping When someone lives in survival mode for too long, their nervous system adapts. It learns to stay alert. It learns to expect pressure. It learns that rest is risky and stillness is unsafe. So even when external threats disappear, the body doesn’t get the message. This is why many people feel exhausted without knowing why. Why calm moments feel uncomfortable. Why success doesn’t bring satisfaction. Why peace feels strangely empty. It’s not because something is missing. It’s because your system was never taught how to receive ease. You learned how to endure. Not how to enjoy. Why Letting Go Feels Harder Than Holding On Letting go sounds simple in theory. But for someone who survived by holding everything together, letting go feels like failure. You weren’t rewarded for resting. You were rewarded for coping. For staying strong. For not needing too much. So your identity formed around function, not feeling. This is why slowing down can trigger anxiety. Why saying “I can’t” feels shameful. Why doing less feels like becoming less. Your worth became linked to effort. And effort became constant. Healing Is Not Becoming Softer — It’s Becoming Safer Healing from long-term survival is not about becoming fragile. It’s about becoming safe. Safe enough to pause without panic. Safe enough to feel without rushing to fix. Safe enough to rest without preparing for collapse. This kind of healing doesn’t happen through motivation or discipline. It happens through permission. Permission to stop performing strength. Permission to disappoint expectations — including your own. Permission to exist without proving anything. At first, this feels unnatural. Because survival trained you to believe that safety must be earned. But safety is not earned. It is allowed. Relearning What Living Actually Feels Like Living is not dramatic. It doesn’t always feel exciting or intense. Sometimes, living feels quiet. Neutral. Ordinary. And for someone used to survival, that can feel unsettling. But calm is not emptiness. It is space. Space to notice yourself again. Space to feel preferences instead of obligations. Space to choose, not react. You don’t suddenly become a new person. You simply return to parts of yourself that were postponed. A Different Measure of Progress Progress is often measured by how much you do. How fast you move. How productive you appear. But healing progress looks different. It looks like stopping before burnout instead of after. Like resting before you collapse. Like saying “enough” without explaining yourself. It looks like choosing sustainability over intensity. Truth over performance. Presence over pressure. This kind of progress is quiet. And because it’s quiet, it’s often overlooked. But it is real. A Closing Truth If survival shaped you, it’s not your fault. You adapted the way you had to. But you are not meant to live your entire life in adaptation mode. You are allowed to soften without losing strength. To rest without guilt. To live without constantly preparing for impact. You don’t need to become more. You need to feel safe enough to be. And that shift — from surviving to living — is not weakness. It is the most honest form of courage there is.
By Med Abdeljabbar4 days ago in Psyche
Comments
There are no comments for this story
Be the first to respond and start the conversation.