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As a mostly blind father, not due to diabetes, with a son that has type 1 -- this really hit close to home. I was diagnosed at 16 with retinitis pigmentosa, or
by kolanos 11y ago
As a mostly blind father, not due to diabetes, with a son that has type 1 -- this really hit close to home. I was diagnosed at 16 with retinitis pigmentosa, or RP for short. I am now 33 and have very little sight left, will probably be totally blind in the next ten years. I won't lie, it's been a struggle. The author of this piece describes the experience very well. But like her, I've been able to be a productive software engineer for the past 15 years and hope to continue.
For those who can't imagine anything worse than losing your sight, I can assure you that you're wrong. It's no picnic, but I can imagine much worse predicaments. Not having to look at yourself in the mirror anymore can actually be liberating.
Frankly, the toughest part about being blind is the stigma around it. I've lost jobs because my blindness made people uncomfortable. I've been turned away from job interviews because the interviewer didn't think I could do the job without giving me a chance to prove otherwise. Most people are great about it and are very empathetic. But there's still the occasional person who avoids me like the plague.
As for my type 1 son, I hope I provide enough of a dose of reality for him to stay on top of his blood sugar.
- narrowrail 11y ago>But there's still the occasional person who avoids me like the plague. It's hard for me to believe this, but I don't want to believe you. >For those who can't imagine anything worse than losing your sight I don't think it would be the worst, but I have trouble writing code as it is; don't kid yourself, you're a bad ass. >Not having to look at yourself in the mirror anymore can actually be liberating. I solved this by ignoring the mirror while in the bathroom even though I can see. It just seems to cause vanity. As for your son, I wish you the best. I had a type 1 roommate in college, and he had some 'interesting' episodes that caused me great concern (i.e. failing to maintain awareness of his glucose levels). Keeping active skiing, hiking, and fishing seemed to help him a bunch.
- gentleteblor 11y agoWell said. I've also got RP, though I've still got plenty of day vision left. It makes me glad to hear you're doing well. Were you worried about passing it (RP) on? Apologies if this too personal for HN, I am just curious.