Hello!
So, something that I dreamed of doing with this channel is introduce people to what it
means to be DeafBlind.
Now, because it's new to me you are getting a kind of like, crash course in DeafBlindness,
as I get a crash course in DeafBlindness, and I'm making these videos kind of as I'm
learning.
So, they're very 'on the go'.
And something that I've really been struggling with since the onset of my hearing loss has
been socializing.
So today, I want to talk about some of the ways I've been dealing with this.
First, I did what everyone does when they are dealing with a sensory loss, and that
was to isolate myself.
I had just moved here to NJ so I didn't really know anybody.
So, going to events where I wasn't going to be able to see or hear people was truly terrifying
to me.
And I think I started to venture out sometime in August or September when I started to work
with an orientation and mobility instructor, who taught me how to cross streets safely
and get around with my new hearing loss.
And most of the social activities for a while I did with a friend of mine, who took ASL
with me last summer.
Shout out, by the way!
Because she's fantastic.
She's been a great support helping me socialize again.
And the last couple of months I've really been working on expanding my tiny social circle.
Now, I'll be honest, I do still have some anxiety when I do go certain places.
These places tend to be when there's going to be limited hearing potential for me.
So, if I go to an amusement park, or if I go to the beach, or something where there
is very low lighting, or difficult lighting, and there is poor hearing quality.
The anxiety only gets upped when I'm going with people who don't know American Sign Language
because my fallback communication isn't there, so that means I might have to rely on Print-on-Palm
or POP.
So, for me the hardest part of learning how to be DeafBlind has been navigating these
social settings and accommodating for myself.
Something I knew how to do as a blind person but not necessarily with the dual sensory
loss.
And, I'm not going to say that everyone is always going to be super accommodating, because
not all people are accommodating in all situations.
So, this week, I went outside of my comfort zone, and went to a friend's birthday party.
And where we were all going to go out for ice cream, and then go to a bowling alley.
Now, I know, that my friends are always willing to help me and are willing to accommodate
for me, but I also know that this is a birthday party where people might get drunk, where
there will be a lot of noise, where I wasn't going to be able to hear anything.
And, right now I still get very overwhelmed and very agitated if I am not able to keep
up with what's going on, and I'm still prone to having panic attacks in specific situations.
And...
I kind of thought bowling might be one of them.
So, I decided that for ice cream I was going to be fine and just go with my friends, and
that for the second half I was going to seek out an SSP (or support service provider) to
go bowling with me and act as a communication support.
They know ASL so even though I couldn't hear, because the music and noise was overwhelming
my hearing aids, you know, I had an ASL person there to support me and help me communicate
with my friends, to tell me what the bowling scores were, to tell me who was up next, when
my turn was, who was doing what, what the group next to us was doing.
Just all of that little bit of information, my SSP was there to support me and to give
me that information.
I was really able to be present and there for my friend's birthday party, in a way that
I found meaningful, and I had fun!
And I'm so happy that I went!
When we experience a loss in a sense, or sudden onset of disability, you know, it's not a
marathon, it's not a sprint.
It's slowly increasing our ability to do things.
Now, I've managed to get to a point where I can maintain some, a lot of my work skills.
So, I can go into work settings, meetings and stuff like that.
And that's great for me.
And where the things that have lagged behind for me is really socializing.
And...
You know what, that's ok.
If you are supporting somebody who is going through a sensory loss, and you are noticing,
"Oh, that's weird.
They're really good in this one area but they're still really anxious in this other area."
You know what, that happens.
There is going to be an uneven amount of confidence, because you can't work on everything all at
once.
For me the big deal was getting back to employment, so of course that's what I worked on first.
Where-as socializing took a backseat.
So, you know what, if you are supporting somebody, be that support person for them.
If they say, "Hey this might be too much for me."
Don't push too hard.
If you think that they really can handle it, say, "You know what, I'm going to go with
you, we'll be there together."
Try to make it comfortable.
But don't push them.
Because eventually, it all evens out and it does get better!
I hope you liked this video!
Please remember to subscribe, like on Facebook, follow on Twitter.
All that jazz.
And I will see you later.
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