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Calling all disabled BLers!

xtcgrrrl

xtcgrrrl

Bluelight Crew
Joined
Aug 20, 2013
Messages
2,903
Location
New Jersey
Hi all, let me start out by saying that I’m profoundly Deaf. (If anyone wants to ask questions about this, I am an open book!) I was just wondering how many other BLers have a physical disability? I’m aware that mental illness can be considered a disability, and a great number of us (myself included) may have been diagnosed with something having to do with that. But my question here is, how many of you are PHYSICALLY disabled? Wheelchair users? Chronic illness havers? Missing a whole-ass sense, like me? I would really like to know, and maybe compare notes. For example, my own progressive hearing loss, which started at birth, really fucked me up in the head. Imagine realizing at a young age that you will eventually become completely deaf or blind, something like that will definitely have a negative psychological impact. It’s part of why I have mental illnesses, and part of why I began using drugs. Does anyone else have a similar story?
 
@xtcgrrrl were you born deaf or did it happen later? Do you have tinnitus?

I've had rather severe tinnitus since I was a child, slowly but surely it's getting worse and my hearing is slowly deteriorating. I can still hear OK now but it's likely I will need hearing aids in another 10 or 15 years.
 
As far as we know, I was born hearing, but the hearing loss began shortly after birth, and by the time I was 3-4 it was noticeable. My mom initially thought I was ignoring her on purpose when she called for me because my baby sister had just been born and she thought I was acting out due to jealousy. But then she realized I put music boxes up to my ear and I sat really close to the tv. She took me to an audiologist, and I already had a moderate hearing loss at that time (there are 5 classifications: slight, mild, moderate, severe and profound.)

We have no idea what caused the hearing loss, and, at the time, had no idea how far it would progress. There was some slight hope that it would eventually level off and I’d be left with some useable hearing, but my rate of loss took a sharp dip when I hit puberty and has continued at the rate of approximately 5 db a year. I currently have a 110 db loss and probably will become “stone deaf” in a few years (no remaining useable hearing, hearing aids will be useless to me.)

I do experience tinnitus, and always have. It can be annoying, but I’m used to it. Interestingly enough, certain drugs that I’ve taken in the past will increase the tinnitus. For example, if I take a “bellringer” hit of crack, I get INSANE tinnitus that doesn’t go away until a very long time after no crack use! I sincerely wonder why this is…
 
Snafu in the Void said:
I've had rather severe tinnitus since I was a child, slowly but surely it's getting worse and my hearing is slowly deteriorating. I can still hear OK now but it's likely I will need hearing aids in another 10 or 15 years.
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Do you know why this is? Were you exposed to overly loud sounds or something?
 
Snafu in the Void said:
Just genetic/neurological. Started when I was like 6 well before I ever listened to music. I started having difficulty with hearing tests soon after.
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I’m partially deaf in my left ear from playing electric guitar in middle school. I have a left shoulder that dislocates and is damaged from oxygen deprivation when I slept too long on one side from Valium. I also suffer from PTSD and undiagnosed ADHD.
 
Interesting! They think my loss is probably genetic too, only because they haven’t come up with a better reason. I was tested for the common gene for deafness, CX26, and…nope! But there’s a ton of lesser genes that could be the culprit. Who even knows; I would have to have my ENTIRE genome mapped out to even just rule that out as a possibility. But no other family members are deaf, not even my 3 children, and both of their parents are deaf.

My dad thinks it’s 3 mile island, lol.
 
BK38 said:
I’m partially deaf in my left ear from playing electric guitar in middle school. I have a left shoulder that dislocates and is damaged from oxygen deprivation when I slept too long on one side from Valium. I also suffer from PTSD and undiagnosed ADHD.
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I did not know that was possible, to be so heavily asleep from Valium! That’s shocking to me…I tend to think of Valium as a “lesser” benzo.

I have ADHD too! And so does ex and all 3 kids, arghhhh…I suspect my bf has it as well but he just laughs at me and says “what’s with all the labels anyway” lol
 
xtcgrrrl said:
I did not know that was possible, to be so heavily asleep from Valium! That’s shocking to me…I tend to think of Valium as a “lesser” benzo.

I have ADHD too! And so does ex and all 3 kids, arghhhh…I suspect my bf has it as well but he just laughs at me and says “what’s with all the labels anyway” lol
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I can relate totally
 
I also have this weird neurological thing, I forgot the medical term for it but it's more common in people with tinnitus. About once per week I randomly have a very sudden and very loud ringing (different than normal tinnitus) in my ear accompanied by a sudden complete deafness in one ear. It's a bit startling, but luckily my hearing returns within 30 sec. It's odd.
 
xtcgrrrl said:
Do you know why this is? Were you exposed to overly loud sounds or something?
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I have tinnitus as well. In my case it was caused by overly loud noises since I worked as a machinist much of my life. I will need a hearing aid eventually. I struggle to hear conversations in a crowded place already. It's weird how tinnitus is something you tune out but when you think about it, you suddenly hear it very loudly.

Anyway, can we add people with chronic pain issues who are not actually disabled to the thread? I have chronic issues with my neck, but I was able to continue working until retirement. There is still much work to do, but I am actually planning for the eventual time when my pot use becomes daily.
 
xtcgrrrl said:
For example, if I take a “bellringer” hit of crack, I get INSANE tinnitus that doesn’t go away until a very long time after no crack use! I sincerely wonder why this is…
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It could be related to blood pressure?
But most likely some odd neurological changes that we don’t fully understand.
I would be very curious to hear how the auditory psychedelic DiPT affects you.
 
I have a severe digestive disease that has almost killed me more than 7 times in the past 10 years. It has deprived me of life, human connection, opportunity, and any chance at normalcy. Dealing with it has definitely made me mentally ill and I would even say neurodivergent at this point, since the almost nonstop trauma of nearly dying, or living under the threat that it could happen again at any time, has surely been brain damaging. It's made worse by the fact that I live alone and am trapped by financial limitations from making the necessary changes I need to make to start feeling whole again. Every time I get ill I have to dig deep inside myself and find the grit to take care of myself, even though I can barely function. These circumstances have made me a quasi-hermit and outsider. I haven't felt in sync with the day to day human world for years now and I'm not sure how to reintegrate. I feel invisible.

One thing I'm doing right now is studying a health sciences degree through online university. It has been hard but very rewarding. My hope is that education unlocks some doors for me, but I'm not sure at this point if I could even hold a regular job. I was previously self-employed practicing Chinese medicine, and had about 1000 clients who were in and out. It was rewarding work, but draining if you have an illness that sucks your life force, especially when you are providing care to so many people. Now I don't know what I'm doing... just school and trying to survive off gigs here and there.

Being chronically ill or disabled sucks. I see some of the hard-earned benefits of my life path, but it's not something I would chose for myself or anyone really. We all just want to feel connection and love, but being sick all the time really makes that hard. I've grown accustomed to rarely having my human needs met. I am hoping that I can make some meaningful changes in the coming years because I can't imagine this way of life continuing much longer. I feel like a bug trapped in amber. At the same time, I acknowledge that I am participating in a well-worn human archetype... the wounded, the hermit, the wise recluse, suffering/insight, hell vs awakening, etc. I feel very connected to all the sick people who currently or historically lived in abject anguish while unknowingly (or knowingly) doing profound spiritual work.

What is this all leading up to? I have no idea.
 
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Hey @xtcgrrrl, as a person who labelled/identified/referred to themselves as “disabled” may I ask how you feel about people using terms like “differently abled” rather than “disabled”? I’m old enough to remember when “disabled” replaced “handicapped” and it seems there is a similar shift in language going on.

Although “disabled” is still very much well understood ordinary language I see pressure everywhere from publishing “style guides” to job advertisements specifying, preferring or labelling things “differently abled” .

Do you see this as PC-speak? Does it matter? Is is it helpful? Or does it actually erase and minimise the very real challenges that people such as yourself might face in the world?
 
Atomic_Decay said:
Hey @xtcgrrrl, as a person who labelled/identified/referred to themselves as “disabled” may I ask how you feel about people using terms like “differently abled” rather than “disabled”? I’m old enough to remember when “disabled” replaced “handicapped” and it seems there is a similar shift in language going on.

Although “disabled” is still very much well understood ordinary language I see pressure everywhere from publishing “style guides” to job advertisements specifying, preferring or labelling things “differently abled” .

Do you see this as PC-speak? Does it matter? Is is it helpful? Or does it actually erase and minimise the very real challenges that people such as yourself might face in the world?
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Differently abled Is the most P C
 
neversickanymore said:
@Snafu in the Void.. would you mind shaving your outer ear canal hairs.. just with a normal outer ear canal hair trimmer and report back on any effects on your tinnitus. They grow back quickly and you should have no lasting effects once they are grown back.
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Is there a safe technique to do that, lol? Sounds sort of dangerous.
 
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