Hi readers…

Snow day duex!

Being DeafBlind can be an amazing experience, as well as a challenge!

Progressive is the word commonly associated with most conditions, especially those who are DeafBlind.

I’m not going candy-coat this: DeafBlind persons will experience vision loss, period. Whether slow or fast, it depends on unknown factors that I, obviously don’t know about!

I have many DeafBlind friends who grew up being able to see quite well, even being able to operate heavy machinery, drive a car or read university textbooks without a magnifier. Yet now these friends may have blurry vision, tunnel vision (look thru two paper towel tubes for 3 hours, try to carry on a visual conversation, go ahead, I dare you!), some can see better from far away, others have no vision at all.

Now, these friends can still operate heavy machinery, with support or specific devices added. They can read university level books with a magnifier, or braille device. With technology bounding so fast, most things are online, taking a masters level course is piece of cake!

About rate of loss; as I said it can be slow or fast. Slow decline allows a person to become accustomed. But a rapid loss is a total different kettle of fish…

In 2003, I was contracted to work with a man who went to bed one spring night being Deaf and woke up unable to see the face of his wife of 45 years! lifelong partner. It was sudden, without warning!

I heard, from my boss, that that morning was chaos in that bedroom a d kitchen! Things got broken, dishes, clocks, hearts, doors, pictures… The wife, also Deaf, tried very hard to help, to understand, to help him understand. For a while at least…

The man did have support, but not a intervenor. Who, as you know, works with DeafBlind individuals, providing visual and auditory support, providing coping strategies and ways to be as independent as possible.

Both the husband and wife died many many years ago. The wife went first, let me say that when he understood his wife had died, it was a moment of pure heartache and sadness. For everyone in the room.

I have two more stories to tell about this extreme vision loss, however, the onus of the blogs is not about the tragedy but about intervenors. In this situation above, the man did not have an intervenor, who could have supported him with ASL and visual information, things that he took for granted.

While it is unknown if an intervenor could have eased the chaos of that first week, I doubt it, but over time, he would have benefited.

Thank you for reading.