[nfb-db] New and introducing myself

Thu Jul 12 12:24:29 UTC 2012

HI marsha.
Yes, it can be very isolating at times. Blindness cuts you off from
driving, but deafness cuts you off from people. That's not to say that
it has to be that way, but for me at least, social situations have
become such a struggle that I'm now basically a person who spends a
lot of time reading and other activities that don't involve using my
hearing.
I understand what you mean about losing your hearing and it scaring
the crap out of you. Mine is slowly going, and it was earlier this
year when I first realized I could no longer hear birds. As I love the
sound of birds, especially in the spring, this hit me hard. Although I
had a career in music before I officially embarked on my current
career in rehabilitation and I very much enjoyed doing this, not
hearing birds anymore and not being able to hear other sounds was more
difficult for me. I guess because I opted to give up playing live
music and producing it, the situation with not being able to hear was
one that was forced on me. And, yes, I'd love to have that hearing
back, but I look at it like I do death. I have to grieve for it and
move on. This is slightly different though I suppose, since everyone
else can hear birds and other noises that I can't. I still like it
when people tell me when they can hear things so that I have the
information and can picture in my head what it may sound like.
I know that a lot of people consider getting cochlear implants and
that most who have gone through portions of their life with decent
hearing seem to have the most success, but I don't have time for
sitting around and all that for several months. My life, even with the
dual disability, is way too busy. Also, I live several hundred miles
from my family, so the time period following the CI surgery would be
an issue for me, since I wouldn't have anyone to help me through that.
My understanding from talking to others is that the first couple of
weeks require one to have a lot of help. I don't have anyone in my
life who is willing to do that. I still will probably have to go
through it at some point, and I'm already preparing for that day, but
I'm dreading it. I have a huge digital library of sound effects that
I've collected from various sources over the past few  years mainly
for this reason. So that when I do get a CI, I can retrain myself to
understand what certain noises sound like all over again very quickly.
I'd say that 90% of everything I've learned in life I've learned on my
own. My knowledge of technology, my values, and everything else have
been formed through my experiences and thoughts. This CI thing  will
be no different. I don't like that, but I've accepted that this is how
it is going to be and that if I have to face things alone, so be it.
No matter what happens, whether I become fully deaf or not, I still
have a brain and the ability to think clearly. I'm still my own
person, and nothing can take that away from me. I suppose that's one
thing losing my hearing has taught me. Yes, it sucks, in a major way,
but I'm grateful for what I still do have because I am having to
endure that experience.
Anyway, that's all for now. I appologize for the lengthy email! Off to
work I go now.

Scott

On 7/11/12, Marsha Drenth <marsha.drenth at gmail.com> wrote:
> Scott,
>
> I am very much like you. If I can't hear you, its my fault, not theirs.
> Nope
> sorry wasn't at your technology presentation. There is always so much going
> on at convention, its hard to say what I want to go to and then what my
> state requires me to go to. Its very nice to meet you.
>
> I am glad to hear that I am not the only one who deals with this stuff, it
> can be very lonely at times. I honestly hate my ears for betraying me. I
> remember a time when I took my hearing for granted, listening to loud
> music,
> noise never bothered me. Now I only wish I could have different ears. It
> scares the crap out of me to think that one day I won't be able to hear,
> there are so many things I love to listen to. Its not fair. I do go through
> the why me stuff at times.
>
> Marsha
>
>
> -----Original Message-----
> From: nfb-db-bounces at nfbnet.org [mailto:nfb-db-bounces at nfbnet.org] On
> Behalf
> Of Scott Davert
> Sent: Wednesday, July 11, 2012 12:31 PM
> To: NFB Deaf-Blind Division Mailing List
> Subject: Re: [nfb-db] New and introducing myself
>
> Hello Marsha, and a warm welcome to you.
> I certainly can relate to a lot of your struggles, I had many of the
> same at convention. If it hadn't been for the support of a few
> understanding people with normal hearing, I would have been lost as
> well. The hotel reminds me of a large parking garage, very open an and
> full of echos. Not what you'd call a user friendly environment for
> those who are hearing impaired. Then again, 99% of the world isn't, so
> the best we can do is try to adapt to the world around us.  To help
> offset the hearing loss, I gave my FM to a couple of the vendors that
> I spoke with and also to some of the presenters /committee presidents
> who ran meetings. This helped some, but I then couldn't really hear
> what was going on around me either. I could have asked them to pass
> the FM around, but having blind people do that, myself being one I
> know, is rather challenging in such a setting. Also, I often feel like
> a burden for having to ask people to do that. But those who attempt to
> accomodate me make me feel like less of one, and I'm just as entitled
> to the info as anyone else, so I try to advocate for the use of it.
> I'm not always successful because I feel like I have to be too polite,
> but that's my struggle for now.
> Were you at my presentation on deaf-blindness and technology? I know
> someone had an FM system which I wore, but I never knew whose FM
> system it was.
> I'll send another email shortly introducing myself, as I have not done
> so even though I've been on this mailing list for nearly a year. It's
> been so inactive that I didn't find it worthy of being done.
>
> Nice to meet you on the list!
> Scott
>
> On 7/11/12, Marsha Drenth <marsha.drenth at gmail.com> wrote:
>> Hello all,
>>
>>
>>
>> I just subscribed to the list. Recently I went to the national
>> convention,
>> but was unable to get to the social.
>>
>>
>>
>> Just a quick intro, I 'm Marsha. I live in Philadelphia PA with my Seeing
>> Eye dog and husband. Hubby and I have been married for 3 years now. My
>> guide
>> Emma, is a 6 and half year old GSD, who will most likely be retired soon.
>> Emma has had a number of health and stress issues lately. I am a full
>> time
>> student at Temple University trying to get my degree in social work. I am
>> considered a junior and have two long years left. I am totally blind with
> a
>> moderate to severe hearing loss. I also have balance problems that
>> accompany
>> the hearing loss. Currently I use hearing aids with an FM system, but I
>> still can't hear all that I need to with that amount of equipment.
>> Traveling
>> is the hardest by far, as I can not hear traffic, and get lost very
> easily.
>>
>>
>>
>>
>> I discovered in 2007 that I was losing my hearing, and since then I have
>> lost more and more. The ENT thinks that I have Meniere's. I have been
>> totally blind for a number of years, and have dealt with the social
> aspects
>> of that. I just find being hearing impaired is very hard. I spend so much
>> energy trying to hear what people say to me, or where I am at, or
>> traffic,
>> and the list goes on. If I could have ear transplants I would be first in
>> line. Like for example at the national convention, it was like a hearing
>> nightmare. I used the FM receivers the ameture radio division had out for
>> loan, and for the first time I was able to hear all of the speakers. But
> if
>> someone was sitting next to me I could not hear them. I got lost so many
>> times in the big room that general session took place. Talking to anyone
> in
>> the exhibit hall was almost impossible to hear what they said back to me.
>> Lots of times, people would say something, and I would pretend I heard
>> them.
>> If my husband had not been there to tell me what people said, or help me
>> get
>> around, I could have not done it.
>>
>>
>>
>> How do you all do it? Sorry for sounding stupid or lame. I know everyone
>> has
>> way worse problems than I, so my complaints, are not really that, but I
>> needing to get tips and tricks. Why I didn't sign up for this email list
>> before now, I am not sure. Some of you might recognize me, I am the
>> moderator of the NAGDU email list.
>>
>>
>>
>> A good friend recommended that I join, so thank you to her for that.
>>
>>
>>
>> Thank you,
>>
>> Marsha
>>
>>
>>
>>
>
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