Hearing Loss

My name is Dan. I am here just checking things out. Found The Mighty while searching for info on vasovagal disorder. I have had to syncope incidents in the past year. Not pleasant at all, smashed my head a couple times. Also, I have kidney disease and severe hearing loss as a result of Alport Syndrome.

#Alportsyndrome

The real Helen Keller and Annie Sullivan by Helene Ryles

Helen Keller and I are both Deafblind, deprived of sign language, been misunderstood and had a ton of bullshit said about us, we both engaged in politics and we are both females which just about sums it up as far as our similarities go.

Myths about Helen Keller:
1. Helen Keller knew no language before Ann Sullivan: Helen Keller spoke at age 6 months. She has a perfect description of her illness so therefore it's highly unlikely that it took place as early as is claimed. She must have been at least three. Afterwards she learned various signs from her family's black servants. Due to racial issues they wouldn't have been allowed to punish Helen in the manner that Annie Sullivan did.

2. She describes her illness in her autobiography which would not have been possible if she was 19 months. She was at least

3. Helen was totally deafblind from the start

That's very unlikely. Other deafblind who had meningitis don't lose their sight and hearing all at once. Robert Smithas and Laura Bridgeman didn't.  Laura started with a small vest age of sight which she lost. Robert had some hearing which he then lost.

3. Ann Sullivan just had to give Helen Keller a good hiding and that's all it took.

Sure Annie Sullivan felt the need to enforce discipline to improve Helen's behaviour. But that's certainly NOT how she got through.

What actually happened was that the months of hard work that Annie put in finally paid off so Helen's ability to communicate improved so much that she no longer needed to express herself in violent outbreaks. From what I have read 'the miracle worker'  was a load of ableist and racist crap. The black servants were only there for comic relief when they maintained Helen's language. (Without them Annie would not have managed to accomplish what she did. I read about that and the fact the Kellers were racist in a site that was taken down.)

4. Annie Sullivan was an abled saint who worked miracles.
Annie Sullivan was herself partially sighted and eventually blind.  She also had various mental health issues. In fact if she lived in modern day Canada there may not have been so much of a 'miracle worker' as she was suicidal at times. Most of her mental health issues probably stemmed from PTSD from her stay in the workhouse. It's true to say she was a really hard worker and achieved a lot with Helen Keller. After refusing to take another student for most of her life there was a mention that she wanted to take in a deafblind baby right at the end of her life when she was fully blind with TB. Unfortunately Helen and possibly others put a stop to it. Which is a shame as she achieved so much with Helen Keller she just needs help which is what Samuel Howe had plenty of bringing up Laura Bridgeman.
(To get a better idea of Annie Sullivan read "Beyond the miracle worker" and "Miss Spitfire" ).

5. Helen Keller was taught via a strict oral only approach
No it was more of a full tool box approach. Since she started off with signs before Annie got there. There's no evidence to show Annie Sullivan stopped her from signing. She just didn't use proper sign language herself so taught Helen Keller finger spelling and then tadoma but unlike tadoma of a future era the deafblind manual was used as well.

Despite having a reputation of being something of a spitfire Annie Sullivan had her reason for not wanting to offend Bell but she declined to speak in favour of oralism and chose a school with a soft oralist approach (more like the modern signed Assisted systems or cued speech then the strict no signing at all systems in use at the Clarke oral school that Bell recommended but Annie Sullivan turned down).

6.Helen Keller wasn't political
She was into socialism. As often happens when we get too political we have to face other people displeasure. Our activities are swept under the rug and people aren't so happy which is what happened when Helen Keller became a socialist. A relative even talked about wanting to bend Helen Keller over his knee and that was when she was an adult.

7. Helen Keller supported your modern day cause
I doubt it. I have read a claim that she was for abortion. It's very unlikely since the feminist of Helen Keller's day didn't. Neither was she for disabilities or black issues aside from the odd comment which she got into serious bother with her family over.

8. Helen Keller was too wise to make mistakes
No she wasn't. She supported Alexandra Graham Bell and eugenics. You simply cannot promote eugenics and be for the disabled. It just isn't possible because eugenics is against the disabled.
She was in very dodgy company when it came to Alexandra Graham Bell who was both against the deaf breeding and using sign language and was responsible for Milan which was a very dark patch in history that robbed the Deaf  of their rightful language

9. There wasn't any romance in Helen's life.
She nearly got married to peter Fagan and became Mrs Helen Fagan but her family put a stop to it.  This is quite tragic since there wasn't any good reason to stop the union. After all she had a right to a normal life and it was ableism rather than her deafblind which got in her way.

10. There was only one Helen Keller
No, other deafblind people with acquired deafblindness were also successful. The others just don't get so much of a mention.

Laura Bridgeman was one of the first well known Deafblind people. She was exploited by
Samuel Howe. Howe didn't teach Laura Bridgeman. He hired others to do so.

While Howe claimed to be against slavery and an abolitionist he refused to admit black blind children at the blind school he ran. He was one major poser. Everyone thinks he is the one to originate deaf blind education when he was basically just the middle man. Some other guy decided to set the school up and employed Howe to run it. He had it in mind simply to experiment on Laura and use her as a publicity stunt having people view her like an exhibit. When the quintuplets were treated like that in Canada they had a major problem with it. Many of us disabled people, quite rightly, have a major problem with being seen as inspirational every time we do anything.

Howe started it spewing out complete nonsense about Laura being some sort of saint when she was only human and an unhappy and frustrated human at that. She got lonely, had an eating disorder and as soon as she overgrow her usefulness to Howe he didn't even properly address her support needs. Didn't provide her with the 'nice lady' she had been promised. Like Helen Keller she was also discouraged from marriage which many deaf blind people now do. (Of course not all disabled will find love but more should be done to alert us to what is possible with online and other dating agencies for both regular and single sexed relationships) while Helen enjoyed one full time helper who wasn't answerable to Howe Laura's teachers were and he was deliberately unkind about Laura last teacher when he decided Laura education had finished. The biggest injustice of all though (perpetrated by him and Graham Bell who was another Eugenic git) was to use their influence to put an end to sign language in Deaf Education. It is still debated today when the whole issue is a no brainier. Of course the deaf need sign language starting at babyhood or when a significant hearing loss is detected. Which ever happens first.

Recommend reading:
Books:
The radical lives of Helen Keller www.amazon.co.uk/Radical-Lives-Keller-History-Disability/dp/0814758142
Beyond the miracle worker www.amazon.co.uk/gp/product/B007Y39IYU/ref=dbs_a_def_awm_bibl_vppi_i1
Miss spitfire www.amazon.co.uk/Miss-Spitfire-Reaching-Helen-Keller/dp/1416925422
Websites: (about Helen Keller)

www.smithsonianmag.com/smart-news/three-big-ableist-myths-ab...

thefederalist.com/2019/09/09/helen-keller-believed-eradicati...

Frustrated is an understatement to describe how I feel. Triggered is a close second.

I have been sick since August with what must be some sort of enigma issue because I still have no answers as to what it is. However, everyone seems to agree that none of this is normal. Throughout the time, I have only had 1 to 2 weeks where I was somewhat improved. I've had 14 negative covid tests, 2 negative flu tests, a negative strep test, 2 negative mono tests, etc. I have lost my voice for 2 to 3 weeks at a time now at least 3 times throughout this process (currently in the longest period without a voice) and felt unlike I've ever had in my whole life. I've had body pain (back and neck mainly), a cough, chest heaviness, chills, bad headache, sensitivity to light and sound, head congestion, tingling and numbness increases, body temperature fluctuations, extreme fatigue, memory loss, confusion, weakness overall, change in appetite, hair loss, etc. I have had multiple days where I feel like I can barely eat and just need to spend every moment in bed trying to sleep, which is a whole other issue in itself, given all my sleep issues. I have been given multiple rounds of prednisone, augmentin, & benzonatate and then doxycycline, albuterol, dayquil, nyquil, and cough gels. I've tried all the things I can think of and have found as possible new things to try, been to doctors many times, had to beg for bloodwork that tends to come back totally normal, and just continue to feel so beyond crappy that I barely feel able to function. Last night, I finally decided to go to the hospital because clearly this isn't getting better, and my strength alone is almost nonexistent at this point. I had some bloodwork done to retest for mono, valley fever, and check basic levels. Everything came back before they discharged me except the valley fever. I was told everything came back normal/negative, and I will get a call if the valley fever test is positive within the next couple of days.

My cardiologist had ordered a LOT of bloodwork and a CT of my chest when I saw her at the end of December because none of that had been done. Luckily, my EKG and all the stuff she did to check my heart showed that it hasn't seemed to be impacted. My ENT when I saw them this week did a scope thing that showed her my vocal cords are very swollen, so she wants a CT of my neck and then to have a videostrobscopy done as well. Of course, none of those CTs get to happen in a timely manner. My veins suck and never seem to cooperate so my poor hand is so beyond bruised from them having to use that 3 times this week to try and get the bloodwork done in between the initial order, needing to redo it because there wasn't enough collected, and again having stuff at the hospital.

Unfortunately, I have been thru a great deal of medical trauma at this point to an eventual diagnosis of PTSD. This lack of true answers and solutions is very triggering because I know, as well as continue to be told, that I am doing everything right/possible. I have so many different medical issues at this point that I sometimes question if people truly are diagnosing me correctly or just giving some diagnosis to try and get me out of their offices.

I need my voice as a teacher and just human in general. I need to not feel sick and tired for the majority of my life with seemingly no end to that in sight. I need answers. I can't afford to continue to miss work or cope with everyone around me just looking at me with sad eyes because they feel so bad for me as they are confused, frustrated, and hopeful like me. I need to have the strength to feel functional moreso than I do the majority of the time. There is only so much pushing myself and putting on a brave face that I am "ok" that can happen. It all got old a super long time ago. I am beyond sick and tired of being sick and tired!

Going back to my ENT this week because the hole in my left eardrum hasn’t healed up and it keeps bothering me. My right ear has been bothering me ever since my last ear infection last year. I had to get tubes when I was younger, so I don’t know if it’s time to get them again, but I know I’m definitely going to have to get the hole in the other ear patched up because the last time we did a hearing test I was losing hearing in that ear, but know I’m having problems with my right ear. #earproblems #eartubes #ent #earinfections #HearingLoss #frustration #ChronicInfections

As I watch the ball drop, I always get the chills. The phrase "ball drop" has so many loaded meanings throughout the year for all of us Mightyites. However, I find myself associating it with something different on NYE. The ball dropping is a reminder of needing to drop the self doubt, negative self talk, negative memories that occurred all year, and represents hope that things can only go upwards since the ball has come to its ending point. So, with that said, I wish all of you the best 2023 possible.

A year ago, today, I went to sleep without a thought in the world of how the following day would begin one of the most difficult years of my life.

I went to work feeling fine and ready as I could be to take on the day. Within 5 minutes of my arrival, however, the universe had other plans that altered the remainder of my school year and perhaps the remainder of my life. I do not have a memory of exactly what occurred, but from what I do recall I stood on a chair to write on my whiteboard for the day. The next thing I knew I was on the ground slouched up against my desk with my legs stretched out. I felt like my ankle was twisted and that I'd likely have a headache the rest of the day. Boy was I in for a rude awakening that came the next few days. It was a terrible way to end 34 and ring in 35. I am so thankful for the members of my school family who helped me that day. Because of their calm and collected demeanor I remained calm and didn't think much was wrong but understood that I'd have to go to the hospital anyway.

I don't recall a whole lot about my time at the hospital aside from the knowledge I had a head CT and xrays of my foot/ankle area done. I remember being told I had a sprained ankle and then was given a boot to wear that felt way too clunky for my liking. I know I texted my sister to wish her a happy birthday and to let her know as my emergency contact what I knew of that occurred. Her response was "maybe you shouldn't fall so much." Her words didn't really sting until later, the following day (my birthday) and in the months to come, as I became aware of the breadth of my injuries. It became another justification/confirmation as to why my family was not in my life at that time. There was not a single time after that day that my sister checked on me to see how I was.

I would have felt extremely alone had it not been for my best friend who daily made sure to check on me, let me know I had a shoulder to cry on and listening ear, and someone who would hop on a plane if I said I needed them with very little reservation. A case worker through workman's comp became my angel here on Earth locally. The therapists who entered my life became my additional support system in every possible way they could. Otherwise, it was all me and me alone navigating this new world of mine.

To make what could be an extremely long story shorter, the remainder of this last year of my life has been a rollercoaster with every emotion possible running through my veins. Through the tremendous amounts of physical therapy, vestibular therapy, cognitive therapy, and mental health therapy I have been able to see that my strong resilience can help me navigate anything that comes my way. I definitely shed more tears over the course of the last year than any other in my entire life. I have felt awful more days than tolerable. On and off I have not been able to see a light at the end of this tunnel from hell.

Missing half of a school year, lots of events I had major FOMO about, feeling like a prisoner in my own body, and not knowing much other than day to day functionality was really tough. Throughout the work I've done with my therapist, I was able to work on my PTSD and use EMDR to prepare me as best we could to return to work in July. I took it upon myself one of the first days back to go directly to the spot of the accident and face it. After all, I would have to walk past it every single day, multiple times a day. Since then, I have continued to working on navigating the feelings I have about the entire situation. It has been interesting to see what my viewpoint is now.

While I will never fully be ok that this occurred and obviously wish it didn't, I find myself feeling grateful more and more for the change in perspectives that the accident provided.

I am grateful for being given the time/being forced to truly focus on my wellbeing and only my wellbeing for the first time. I am grateful for learning who the true support system in my life is and having the time to figure that out even if that added excruciating pain during the process. I am grateful for holding strong to the boundaries I had to set throughout the last year and for future years to come with my family on what I will and will not tolerate. I am grateful to be able to be back at work instead of sitting at home just wishing I was there even if it meant being stressed out. (Who knew that I'd actually be grateful for the ability to feel stressed by work chaos?! I am more grateful for the spirit days, assemblies, celebrations of student accomplishments, & wins in sports and/or organizations.) I am grateful for this injury giving me the opportunity to connect with my students in ways I would never have truly been able to understand. I am grateful for hearing aids that have improved my quality of life. I am grateful for the realization of the many times I have stood on a chair, table, etc over the course of my life and career that didn't result in injury. I am grateful for the fact that I will never look at a chair in the same way. I am grateful to be given the gift of another birthday when I know all of this could have resulted in much worse.

Going back to work, navigating the limitations that continue to exist and/or present themselves at inopportune times, in various avenues of my life, & dealing with the dysfunctional family relationships that opened up slightly after the birth of my nephew (the highlight of 35 for sure) has been draining for sure. I live in a permanent state of exhaustion. I am realistic to know that I still have a long way to go in my recovery process and am aware of the fact that the person I was before the accident isn't the person I am now.

I am looking forward to this year coming to an end and starting new. 36 is going to be a much better year for me! It has to be, right?!

I am deafblind Asperger. I was born premature with with an under active thyroid and Asperger syndrome a minor hearing loss was detected age 4 started wearing hearing aids at age 11 and progressed to total deafness age 30. I was only relieved I could stop wearing hearing aids now because they hurt.

I have been self harming epileptic and having mental health problems since teens. Sight problems since 17. I a m happy to be deaf blind Asperger but could do without the additional mental health issues but these things are not up to you in life I have had to learn that the hard way.

I have been yo-yo dieting since my mid 20 when I slimmed down. I will slim then stop skimming. Get overweight and then start slimming again so I know the disadvantages of being over weight . I have tried bulimia too but for whatever reason I simply cannot do it. This is very frustrating but I guess a blessing in disguise since I have heard bulimia is very bad for you.

Problem is since Covid I have taken to comfort eating, and I have a lot less energy which makes losing weight even harder than before and I am yet to have any success even though I am told I should lose weight or at least not donate my too small clothes to charity yet.

I have very severe cochlear otosclerosis with severe to profound hearing loss in both ears and multiple autoimmune and chronic conditions. Since I am using hearing aids on both sides but getting little benefit from one of them due to the severity of the loss and difficulty with speech discrimination too, my doctor wants me to undergo a stapedectomy. I’m pretty nervous to undergo this surgery and would love some feedback about pros and cons and any alternatives I may be missing. Thanks!
#Deafness #autoimmune #MyastheniaGravis #Surgery # chronic illness# sjogren’ssyndrome #POTS #Hearing loss

I'm 64 and I've been plagued with tinnitus for as long as I can remember. I have hearing loss in both ears of the moderate to severe range. My sounds resemble a piercing shrill, the woods alive with crickets and the hum of a diesel tractor outside my window.
Recently I went away for a week to visit my daughter and I was home alone all day with her 2 pets while she and her husband worked. For a week ! It was blissfully quiet. I checked in with my ears a few times when I realized they were silent. Silent !
I live in a 28'camper with my spouse. My daughter's house has a two story vaulted ceiling. The acoustics were amazing.
The first thing I noticed when I returned home to my little camper was the low loud hum in my left ear. Wow it's back just like that.I want to mention I have a variety of stress ills, cptsd, anx,dep..
So what was different at my daughter's house ? Lack of stress, lack of cannabis (I do the medical kind and it works for me), or the acoustics ? I have my shrill whistling back now, going on 5 days straight😤#Tinnitus