My Deaf Journey


I was mild HOH growing up. At first my teachers had me sit at front of the class.  When I entered upper elelmentary,  I was given a hearing test at school and ended up having to undergo 5 ear surgeries, starting at age 5. Like many parents, mine just wanted to “fix” me. Most of my hearing loss in the beginning, was from reoccurring ruptured eardrums, repeated head trauma and abuse.

As a preschool age little girl,  I remember being curled up in a ball, in a chair or in my bed, rocking and crying uncontrollably because the pressure in my ear was so painful. I had horrible ear infections, one after another constantly. My mother would look at me as a 4 year old child and tell me “don’t worry, once your eardrums rupture, you will feel better”. Of course, this is true; but why not get help for me right away?  Why not take me to get help before the ear infections get to the point of rupturing my eardrums? Once the school nurses detected a hearing problem in elementary school, then I was taken to an ear, nose and throat Doctor. I had numerous Myringotomies (ear tube surgeries) between the ages of 7 and 12 years old.

When I was 11 years old, I met a Deaf family. They taught me so much about Deaf language/culture/history & community.  They took me to their residential Deaf school, Deaf football games and to Deaf events. I learned my first ASL vocabulary from that Deaf family. I was at their home constantly because they let me babysit and I became immersed in Deaf community and culture.  I had to learn quickly because they were a full ASL family.  Later on, I became an ASL Interpreter after I graduated college. I was a hospital/medical and educational Interpreter. I also interpreted for my Alma Mater & did that for several years. I continued working as a University classroom Interpreter, part time, even after becoming a Mother.

In 2002, I was in a catastrophic car accident. I suffered multiple injuries/surgeries & a traumatic Traumatic Brain injury (TBI). My hearing & vision declined. I diagnosed with a Convergence insufficiency in my eyes, halo vision and Extreme Dry Eye syndrome (because my eyelids don’t close 100% due to the head trauma & stroke). I got special glasses with prisms in them. I also had to get a pacemaker because my brain would not tell my heart what to do. It was at that time that I got my 1st set of hearing aids.

As time went on, my hearing declined more .  In 2014-2016, I had repeated double ear  infections again.  I lost more hearing. Later in 2019 -May, I went in for new hearing aids and they found an auditory tumor called “Cholesteatoma” (Information regarding Cholesteatoma & information regarding Cholesteatoma ). It had “eaten away” at my 3 ear bones/ossicular chain and mastoid bone. My eardrum was torn badly. I lost most of the hearing in my right ear and there’s severe loss in the left. I was also diagnosed with Tympanosclerosis (Information regarding Tympanosclerosis) or hardening of the eardrum. *{There’s more information about this below}.

I’ve been communicating with ASL & have been a part of the Deaf community since 1973! During college, I used to go every Thursday evening to the D.A.D. (Detroit Association of Deaf) bowling events. I had a Deaf boyfriend for quite awhile during those years & hung out in the dorms with my 16 Best friends; who happened to also be the Deaf students. We had so much fun and got into a tiny bit of fun trouble! Lol…

Later, I joined 2 ASL drama groups; after moving in 1982 to Arizona. In one group, “Silent Impressions Productions”, we had costumes & choreography. Tickets were sold & people paid money to see our show “Nights on Broadway ASL”, at Arizona State University. I was also in a Christian ASL Drama group at the ASU Neumann Center. We did ASL Christian song covers & Interpretive dance. That group was called “Silent Praise”.

I had originally moved there in order to work with Deaf PRE-school children! We taught the children during the day & in evenings, weekly; we taught their parents/families ASL. I KISSFIST (love) that job! After a year & half, I missed my friends & my home & so I returned to Midwest!

After coming back home, I did a little modeling & went back to Interpreting at my Alma Mater. I married & had 2 baby daughters. Fast forward to 1991, & I had to take my baby daughters & myself to a domestic violence shelter because I had been abused again for the past 8 years. As long as I felt that my daughters were safe, I stayed in the home. Once I saw my ex husband, kick our dog in front of our daughter, I knew it was time to leave that marriage. No matter how scary it may be “out there in the world as a single Mom working full time”- it was more scary to stay & continue on that way.

After I served him with divorce papers, I was offered a job within 3 days, as a school district interpreter! It was my dream job! Then later, I got a job (to get better health insurance) at a University hospital. I was a secretarial & clerical “float”. I learned 500 people jobs and worked all over the hospital wherever needed. I also wore a pager and was called to interpret all over the hospital. I got to keep interpreting for the school district on 1/2 day Weds. & on Fridays.

In approximately 1994, I made a new friend. She is Deaf & she introduced me to her two daughters & to her friends, who are also a part of the Deaf community. My daughters became good friends with her kids! She and I are still good friends today in 2020.

I had started a “Sign language club” at my daughters’ elementary school. I did it for my friend , her daughters & my own kids too. I also interpreted for her daughters’ IEP’s.

In 1997- our Sign language club “Silent Impressions”(yes…named after my old choreography/ASL group in AZ), was invited to Madonna University (& other venues) to put on a little ASL performance. It was a great time in my life! I was given an award from the school district, called “Volunteers in public schools Award- (VIPS award)”. It was for my volunteer work. I had been the elementary schools’ jump rope team coach. But I also helped: in classrooms, during field trips, in the the library & initiated & ran the Sign Language club. I was honored, but my reward was not that; it was giving inclusiveness to my friend. It was also about educating our children & many others & giving them a good experience along the way, in their lives.

I Re-married & finally to my soul mate, in 1997. We have been happily married for 23 1/2 years. But in 2002, we were involved in a catastrophic car accident. A man drove through a red light. Luckily, my husband only got a few bruises. I was hurt badly & unconscious for 30 minutes. I suffered a TBI, 11 surgeries (along with multiple painful diagnostic tests) & many injuries. These included more hearing loss & vision lowered due to Convergence insufficiency & halo vision. I ended up with 9 years of PT/OT and 3 years of brain injury rehabilitation. I got my first pair of Analog hearing aids, from my ENT & audiologist. Lastly, I had a stroke, a heart attack and a pacemaker! I was diagnosed in 2007, with the most painful nerve autoimmune illness known to mankind, “RSD aka CRPS” (#47 out of 50 on the McGill pain scale). The RSD/CRPS led me to several other connected & painful health issues (EDS-4, Chiari, Gastroparesis, S.I.B.O., Dysautonomia/POTS, Atrial fibrillation & Sick Sinus Syndrome (a heart condition) . I had to go on disability & have been living with mobility aids, including leg braces (AFO’s), loft-strand crutches, a walker & wheelchair etc.

But nothing has been as scary to me as the diagnosis I received after my hearing started declining more and more from 2014 to 2019. I actually was Hard of Hearing and I did fine with ASL and hearing aids. Yes, I can speak but I prefer ASL. I was diagnosed with an auditory/brain tumor called “Cholesteatoma”. It destroyed my 3 hearing bones and my inner ear. I had to have a Tympanomastoidectomy with oscillar chain & Mastoid bone cut & cleaned-out. I did receive a prosthetic Anvil (Incus) earbone also. But I was also diagnosed with “Tympanosclerosis”(Information about Tympanosclerosis & Hearing loss). This means that my eardrums are hardening & will continue. With this diagnosis, added scar tissue & the tumor (which has a 50% chance to return); my hearing will continue to decline. For now, my right ear has severe mixed hearing loss and Left is high moderate/severe sensory neural hearing loss. I also have pulsating Tinnitus. I received new Signia hearing aids in May 2019 and they are a tool. But since the auditory tumor surgery 7-26-19, I identify as Deaf instead of HoH. I belong to Michigan Association of the Deaf & a few online Deaf groups.

I have my own Facebook group called “ASLExpress” & a Facebook page called “ASL SuzyQ”, where I advocate and share Deaf history, culture and ASL. I also have My YouTube Channel @ASLSuzyQ and My Instagram @ASLSuzyQwhere I share Deaf memes, ASL songs & other fun stuff, including Deaf experiences & stories. *Then there is my TikTok page where it is just all in good fun! My TikTok Channel/Page

Link to “This Is Me” in ASL by Keala Settles (from Greatest Showman)

This was me a year or more after the
catastrophic car accident in 2002

This is me, post-op, after my auditory
surgery 2019-July
This T-shirt was a gift from the parents of kids
This is me at my “Silent Praise” group

A newspaper article honoring me for the
VIPS Award

My class with me at Deaf pre-school

Accessibility A Legal Right


Hey Everyone!

This is a great article from Rikki Poynter and it hits home with me, too! Many of my friends who live with either Deafness/Hearing loss &/or disabilities requiring the use of wheelchair,walker or cane etc, may feel a connection to the stress that Rikki Poynter shares in this article.

Some of us are feeling also the stress of not have accessibility to proper medical care for our high impact chronic pain illnesses. This has been constant since the CDC Guidelines were implemented in 2016, without any pain physicians present at the discussions.

I wanted to share this article because I can feel for her experience and so many people don’t “get it”. Here’s the article: http://www.rikkipoynter.com/articles/event-accessibility

For information or questions regarding the ADA or “Americans With Disabilities Act”, please visit: Link to the ADA website

You can follow Rikki Poynter at Twitter, Instagram and Youtube at: https://www.youtube.com/user/rikkipoynter

And on Twitter:
Rikki Poynter on Twitter
(Check out Rikki Poynter on Twitter: I’m deaf and disabled and, you know, stuff. YouTuber & Public Speaker | #NoMoreCRAPtions | PATREON: https://t.co/BsMiMuxDF5 | rikkipoynter@gmail.com)

Link to Rikki Poynter on Instagram

Just a Photo of me with my purple glitter aids
Me with my family in town, on a Summer day
PEASE FEEL FREE TO FOLLOW ME ON SOCIAL MEDIA:
TWITTER:
1) http://www.twitter.com/ASLSuzyQ
2) http://www.twitter.com/ppl_inpainunite
3) http://www.twitter.com/RASEforCRPS
4) http://www.twitter.com/DeafNDizzy
FACEBOOK:
1) http://www.facebook.com/ASLSuzyQ
2) http://www.facebook.com/RASEforCRPS
3)
http://www.facebook.com/peopleinpainunite
TIKTOK:
1) http://www.tiktok.com/asl_suzyq
*(2nd account is: http://www.tiktok.com/asl_suzyq2
INSTAGRAM: http://www.instagram.com/ASLSuzyQ
TUMBLR: http://www.tumblr.com/ASLSuzyQ
MY BLOG: “Tears of Truth”: @tearsoftruth.com or http://www.wordpress.com/tearsoftruth
SNAPCHAT: http://www.Snapchat.com/jewelrymkr ( or Jewelrymkr )

Cholesteatoma, Deafness And ASL


Have you always wanted to learn American Sign Language, but didn’t know where to start?

Well, the best place to learn all of the rules, parameters and the full language, is from a certified, Deaf ASL professor. You should do that if you are able to at all. You should also try to find a Deaf community to hang out with and go to Deaf events. Most of the communities are so amazing and we welcome all levels of ASL. We are excited for you to learn and happy to help. If you want to do that, but you don’t have the money or the venue to take those special classes; the next best place to start, is by heading over to YouTube.

There are several great places online where you can get started learning for no cost. Lifeprint.com is just one example, Handspeak.com is another, but first I wanted to let you know that I do have some “ASL Basics- Vocabulary” lessons at my YouTube channel :

My YouTube Channel @ASLSuzyQ

The important thing is that you don’t just learn vocabulary, although that’s a great place to start. You need to learn about the language, culture, community and its history! I do have several videos that are a little bit about each of these things. I have one video about “How to get a Sign Name”. There are other videos that include “Deaf President Now” movement in the 1980’s. Also the Sign Language community that was living in Martha’s Vinyard, Massachusetts; in the early 18th century until 1952.

I’ve been using ASL since I was 11 years old. I was babysitting and hung out with a Deaf family of 6. I grew up mildly Hard of Hearing due to recurrent ear infections and numerous ruptured ear drums with scarring. I always had to sit in the front of the class because I couldn’t hear well. Later, when my elementary school performed hearing tests, they informed my parents that I needed tubes in my ears because I wasn’t hearing well. I had multiple operations from ages 7 through 12 or 13 years. However, I did not get hearing aids until much later.

I went to Deaf school events, such football games at MSD (Michigan school for Deaf). I fit right in and felt comfortable. I later went to college and a group of 16 Deaf students in the dorms, were my best friends. We watched “General Hospital” with closed captioned. We went dancing and had some great times together!

Later on, I took a break for a year and a half & went to work at a school in Arizona with Deaf preschoolers. I loved that job. I was ecstatic to find out that I’d beaten out several other candidates for that position because of my skills. I also worked at a Deaf relay center called ADARA or “Arizona Deaf Assistance Referral Association” while I was living in Scottsdale.

After working there for about a year and a half, I went back home to finish my degree in Sign language studies & Interpreting. I then got hired as an educational interpreter for a school district and stayed on Interpreting for my Alma Mater. I got married, had two daughters and 8 years later I became a single mom.

I needed to take care of my girls and I immediately got a full time job with full benefits at the University hospital. I was a “Secretarial float” & wore a pager so that I could be notified when Deaf clients/patients needed me to Interpret for them. I loved my job. At that same time, I was an Interpreter at a school district nearby. I also volunteered as a pro tactile interpreter for Deaf/Blind medical screening events a few times each year.

I continued attending workshops at my Alma Mater and one in particular stands out in my memory. I met an amazingly intelligent and kind man who impacted the rest of my life, in a good way! His name is Art Roehrig and he was a Deaf/Blind guest speaker at one of my most memorable workshops. He told stories about how he’d grown up at a residential Deaf school and discovered that he had Ushers Syndrome, when he was a teen. He shared jokes and told us all about how he was living independently. He was a public speaking and later worked at and then retired from Gallaudet University. I still email with my long time friend, Art.

Back in 2002, I was involved in an Catastrophic car accident. A man ran through a red light and I suffered multiple injuries, surgeries and a Traumatic brain injury. I went through 11 surgeries up until now, and 3 years of TBI (brain injury) rehabilitation. I am left with many medical issues, including several high pain chronic illnesses, chronic pain, a stroke, heart attack and I received a permanent dual chamber pacemaker. Since the car accident, I’ve had vision issues, such as “halo vision” and a Convergence Insufficiency. Also, due to the TBI, my hearing declined even more. Prisms were placed in my eyeglasses for quite awhile and I was fitted with two hearing aids for mild.

My hearing declined over the years and the past 4-5 years it was rapidly declining more. I was waiting until my husband retired this past year, to be fitted with new hearing aids. They’re so expensive ($6,000.00), so I had to wait until we got new insurance, that would help with the cost.

When I went for the hearing test, they were concerned because my bilateral hearing loss had very much worsened. The right side was also now a mixed hearing loss and not only sensory-neural. The ENT ordered a CT scan & later in May 2019, I was diagnosed with an auditory tumor, called a Cholesteatoma. I had a very scary & difficult brain/inner ear surgery on July 26, 2019. I got two new & improved digital hearing aids. But they’ve been nothing but trouble with one thing or another since I got them! We had to pay $1,500.00 of the cost plus $150.00 for the ear molds (which now both have split on me and I’ve only had them for a few months). I’m ready to give up on them.

My hearing bones, eardrum & Mastoid were all diseased from the tumor. I received a Tympanoplasty, a Mastoidectomy (called a Tympanomastoidectomy) & a titanium Anvil, a prosthetic ear-bone. I’ve had Vertigo, a tingling, droopy top, right lip & my tongue has no sensation or taste on the right side, since that surgery this Summer. Oh… and I’m Deaf in my right ear and Moderate/severe HoH in my left ear. The deafness isn’t my problem. The fact that I have to live a lifelong battle with a reoccurring tumor, (that’s like a cancer in the way that it grows into the brain & can kill you. Also in the way it can repeatedly grow back); that is my problem! I have to go back in Spring 2020, for another of the same surgery, possibly. The micro Neuro-Otologist surgeon, told me “to be prepared”. This thing is the “Never ending story”. An endless battle that results in multiple painful & scary surgeries and deafness. But as I said, deafness is not the problem. I’ve been part of the Deaf community since age 11. It’s the lifelong battle with more pain & surgeries on top of the current pain…..that is the major issue for me.

If you’d like to follow me in social media, I will leave the links for you, below:

1) http://www.instagram.com/ASLSuzyQ

2) http://www.facebook.com/ASLSuzyQ

3) http://www.twitter.com//ASLSuzyQ

4) http://www.youtube.com/ASLSuzyQ

5) http://www.tiktok.com/asl_suzyq

6) http://www.facebook.com/groups/ASLExpress (*This one is an ASL info, & help group)

My new Hearing aids:

New Card Helps Deaf Communicate With Police


Hello

So I found this interesting article and I thought some of my fellow Deaf/Hoh persons might want to read about it. The link is below and it’s about a card for Deaf/Hoh individuals to have & use when trying to communicate with the authorities. This article is from Minnesota. I hope you enjoy reading it!

www.google.com/amp/s/patch.com/minnesota/northfield/amp/27492735/new-card-helps-deaf-drivers-communicate-minn-police

The Lion King -ASL


Hello Luvs!

I thought you might enjoy a bit of something light, to cheer you. If you’re like me, the “Lion King” was my favorite of all Disney movies. I have here, “The Circle of Life” in American Sign Language-(ASL), from that Movie! I also have below, “Can You Feel The Love Tonight”? In ASL….I hope you enjoy! *Please “Like”& “Subscribe” on my YouTube videos & “click the little bell 🛎. This way you’ll be notified when I post a new ASL cover song video, to my YouTube channel. I’m trying hard to grow my audience. Thank you so much!! Here’s the direct link to watch ” The Circle of Life” In American Sign Language: “Circle of Life” ASL

Just for your information, at the beginning, of “Circle of Life”, I Sign “look over there! Look over there”… then I name several wild animals, such as: Lion, tigers, giraffe, elephant, antelope, hyena etc. Then I show them all coming forward as they did for Simba when they presented him at Pride Rock. Then I sign “we all must protest against the Lion named Scar. We will win & there will be peace again!!” (This is what I’m signing in parts where there is just music). Then I’m signing the song itself, to the best of my abilities.

Secondly, I have also done the song “Can You Feel The Love Tonight?” In ASL. Here’s the direct link to that song done in American Sign Language: “Can you Feel The Love Tonight?” ASL

I hope you enjoy these because they gave me pleasure to make it! Thank you so much for following “Tears of Truth”. Thank you also for Subscribing to my YouTube channel!

Silent World


September marks the beginning of Deaf Awareness Month 2019. In light of this, I will be bringing you a few blog posts during this month, about the subjects of deafness, Deaf vs. deaf, ASL, Deaf history & Deaf culture, etc.

Today, I want to take a moment to truly introduce another part of my “story” to all of you. Most of you know much about me already. You also know a lot about my pain journey already, if you’ve been following this blog at all. But you may not know much information about some other aspects of my journey. You might have seen my songs done in ASL (American Sign Language) at my YouTube channel: ASLSuzyQ .

I’ve been married for 23.5 years to my soul-mate & the Love of my life, Craig. He’s been an Elementary school teacher for 40 years now & is retired as of June 2018. We have 2 daughters who are married and 3 granddaughters & 1 grandson: Olivia-6yrs, McKenzie-5yrs. & Kiera-3 yrs & Bryce-9 months. I am high Moderate Hard of Hearing (on left) & (mostly) Deaf (on right). I had been HoH (Hard of Hearing) since 2002. But in May 2019, I was diagnosed with an auditory tumor, called “Cholesteatoma”. Which turned out to actually be a rare disease because it often times comes back. It has caused pretty much total silence in my right ear. The Cholesteatoma (More information about Cholesteatoma ) had diseased my eardrum, hearing bones & mastoid by the time it was discovered & removed surgically on 7-26-19.

In short, I will tell you that I started out in life, totally hearing. By age 11, I had so much scar tissue in my ears L>R, from multiple ruptured eardrums, that I had a mild hearing loss. I babysat for a Deaf family with 6 Deaf children. My friend, Judy W. & I babysat as a team. I was fascinated to be able to talk without speaking. I was excited about learning ASL. These kids went to a residential school & they taught me colors, numbers, finger-spelling and everyday conversational signs. We played games like “Monopoly” and we played “school” & “house” etc.

I received ASL books for each holiday and I learned all that I could on my own. I went to college, then it was the only 4-year Sign Language studies/Interpreting program. After my 3rd year, my Aunt (who lived in AZ) called to tell me that she saw a job opening for an “Assistant Teacher” at a Deaf preschool. The requirements stated that a “college degree was required”. But I’d tested out of my first two college ASL classes & I practically lived in the dorm with 16 Deaf friends. We did everything together and I was just accepted lovingly by them. I’d been already Interpreting for the college classes at my own College, & I was doing Deaf/Blind medical Interpreting. So I flew 2,000 miles and applied for the job. I was so very excited to get the job, over others who had their degrees already. I worked at the Deaf school and I found a wonderful church youth group where I was involved in Interpreting for weekly church services. I also got involved in a an ASL drama (with choreography) group, called “Silent Impressions Productions”. We put on beautiful productions of ASL /choreographed songs & dances with gorgeous costumes. People paid $10 each, to come to our production at ASU. I was in “Nights on Broadway”, “One”(from Chorus Line) & “Hello Dolly”! It was such great fun! I was also in an ASL & Interpretive dance Christian group, called “Silent Praise”!

I had the best 2 years of my younger life ! It was such fun! I did miss home & my friends. I also needed & wanted to go back & finish my degree!

I came back home & finished college. Afterwards I was so excited to land a job as a school district Interpreter by day and as a University, “night classes” Interpreter, at my Alma Mater. I later married and had two children. At that time, with 2 small young children, I just Interpreted the night classes for several years. I continued with the medical Interpreting for Deaf/Blind.

I was in An abusive marriage and after 8 years, I got the courage to get my 2 baby girls & myself out! We went to a domestic violence shelter. I was so proud that My babies & I left on a Saturday early evening; & by Monday afternoon I had a full time job as a professional Interpreter for a school district. I Interpreted for the High school, Middle school & Elementary school.

So to speed things up a bit…. I divorced & re-married 7 or 8 years later. In the meantime I was offered a job with much more money & great medical benefits. I would be a Secretarial “float” (meaning that I had to learn everyone’s jobs so that I could cover for them). I had to learn 500 Drs schedules. I was also assigned to be the research secretary for a well known lung transplant doctor. I wore a pager and was paged multiple times weekly; if not daily, to interpret for Deaf patients who came into the hospital for either an appointment or to the ER.

One night that I particularly remember, I got called from home after I’d already gone home; to interpret for a Deaf patient. He was in the emergency room having a heart attack. I had to be precise in telling the doctors exactly how the patient was feeling. It was then, that I realized Just how very important an Interpreters job really is.

All was going well until the end of Summer in 2002. I was with my husband at a Summer art fair on a lazy Weekend day. During the drive home, we were going through a green light when another person, a man, went through a red light and crashed into our minivan. We were “T-boned”! It was classified as a “catastrophic” accident. My kids were not in the car! I thank God for that always! My husband was not hurt, but he was bruised up a bit.

Unfortunately, I was unconscious and ended up having multiple injuries and many surgeries. All in all, I also acquired several high impact chronic pain illnesses. Some of these include: Systemic RSD/CRPS, Polyneuropathy in Collagen Vascular Disease (aka EDS Type 4/heart & vascular), Degenerative Disc, Disease with multiple herniated & bulging discs at C5,6,7 & L4,5 & S-1 (along with spinal stenosis), Dysautonomia/POTs, Gastroparesis & more, including Cholesteatoma now as well. There’s more but I won’t bore you with all of that! I will add that I suffered a TBI that gave me lowered vision (prisms & convergence insufficiency) & hearing loss (I acquired 2 hearing aids in 2002-3 after the MVA). The TBI was such that I required brain injury rehab for 3 years.

After the Cholesteatoma & Surgery, I now identify as “Deaf/HoH”. The reason for this change (from HoH), is because now I can hear pretty much nothing in my right ear. The left ear is moderate/severe hearing loss. I’ve received two new Signia hearing aids & I’ll be re-tested again in December ’19.

I’ve stayed a strong advocate for Deaf/HoH. I fight oppression, audism & ableism alongside the Deaf community. Please feel free to follow me on Instagram ASLSuzyQ Instagram , Twitter ASLSuzyQ Twitter, Facebook My ASLSuzyQ Facebook Artist/video creator page and my Facebook group ASL Express Facebook group and YouTube My ASLSuzyQ YouTube channel . My ASL group on Facebook is called “ASL Express”. We express ourselves using ASL & with this group, I try to bridge the gap between Hearing, Deaf & Hard of Hearing worlds. I try to expose beginners to Deaf history, Deaf culture & Deaf community. For the more advanced and/or native and/or ASL fluent; we have a comfortable place to share & hang out online!

September is Deaf Awareness Month (short 2 1/2 min video)

Fear Instead Of Trust


Hello Luvs,

Sorry I’ve been quiet for a little while. I recently went to get new hearing aids. I was so excited to get new ones after 10 + years with my old Rextons. I was awaiting new insurance after my husband retired.

I went to see the audiologist & afterwards she asked if I’d be willing to see the nurse practitioner. I agreed, & afterwards they told me that I needed a CT scan because my hearing had declined so much more on the right side. They set up an appointment with their ENT Dr., the day after we returned from visiting our daughter, son in law & grand babies. I was a bit curious as to WHY they were telling me to come the day after I got home? I would be in pain and exhausted. But it never entered my mind what I would find out next!

So, when we were in Texas, I got an email message telling me that my CT results were available in the hospital’s portal. I know there’s a disclaimer stating that “you can find out things about the gender of your baby, HIV or other illnesses, even cancer”. In other words, do not look if you don’t want to know until you’re sitting with a Doctor.

But I’ve been through a car accident, deafness, multiple chronic pain illnesses & approximately 9 surgeries just since that accident. I can handle it, right? It can’t be bad if they already put it in the portal…can it?

It’s not bad…. it’s worse than that. I’ve never been so terrified in my entire life! I don’t even know how to verbalize my fear this time. There’s no way around it. I can’t go over or under it. I am being forced to go through it. I’ve been diagnosed with a Cholesteatoma. If you see the #cholestatoma or #cholesteatomasucks on Instagram, it looks like a horror movie. I’m not kidding! It’s really terrifying and people get these horrible skull base surgeries. Facial nerves, worsening deafness and brains are involved.

I found out that I have to have my hair shaved on the right side above my ear. My mastoid bone is affected; as are the 3 bones needed for any hearing. My skull will be drilled and after a 3-4+ hour surgery and more pain on top of my full body RSD/CRPS & other high pain illnesses; it has a 50% chance of coming back!

Anyways, I’ll write another post after I process what will happen tomorrow morning 6-10-19. I’m seeing a skull base/neuro/ear surgeon at 8:30 am tomorrow/Monday morning. I’ll get my questions answered, I hope? Will he be kind and compassionate? Will he help my post-op pain?

I saw my pain Dr. this past Thursday. I also saw my GP this week. The GP was so kind and first time ever, she gave me a hug. My pain Dr has turned from Dr Jekyll to Mr. Hyde over the past year. I’ve never failed a drug test or run out of meds early! I’ve never done anything wrong, yet he’s treated me less than human now for months! Before he’d even accept me as a new patient; he ordered me to stop taking my “quick acting” pain medication. It was something I’d been taking for 13 years (*my former Dr. of 12 years had prescribed it, but then one day he just vanished. That’s when I was forced to find a new Dr.).

In July 2018; he told me he was stopping my long acting pain medication… “that day”! No tapering just stopping it! I did not cry or get upset but I asked “why”? He told me “it’s illegal now and if I help you, I won’t be able to help all of those other people “!

I got him to listen a tiny bit because I reminded him of my stroke and heart attack in the past. He decided to give me one more month. He then said in a nasty tone that he was doing that “to get me psychologically ready”! Really?? It has zero to do with my psychological status and everything to do with high impact chronic pain. Of course he “covered himself” by offering me a different, long acting medication that I cannot take because of issues with Gastroparesis & not being able to metabolize a long acting oral medication. My GI Dr wrote him a letter & told him just that! The pain doctor just said, “This is bullshit! His medical license isn’t any better than mine! If he wants you to have that pain medication, let him prescribe it”! Well, of course He’s a GI doctor and he can’t!

I had my other physicians telling me that “it was unethical for my pain Dr to taper me so quickly!” They said it should have been 10% lowered at a time! But nobody was there to save me and I had to accept it and try my best to move on & keep going. I did it myself when I was told to get off of the quick acting medication. My body physically did not feel well for awhile but I never once craved it or wanted it in my mind- not ever! Then I got off of that long acting medication and once again, I did it myself! You’d think my pain Dr would respect me just a little. But instead, he’s treated me in a demeaning, disrespectful manner ever since last year in March of 2018.

I told my pain doctor that I’m going to have to have this really scary skull surgery soon. That I’m seeing a neuro/skull base/ear surgeon. He was so cold, uncaring & horrible that I truly cannot believe he’s a physician! He told me that I shouldn’t behave like I’m “too afraid” or the surgeon may refuse to take my case! That’s insane if you ask me! What high impact chronic pain patient, headed for hair shaving, painful head surgery wouldn’t be afraid? I’m literally frozen with fear inside! But I’m strong, resilient and I’ve been a survivor through childhood abuse, horrible teen years with my kids, abusive marriages and a catastrophic car accident. Since the car accident, there have been 9 surgeries, 2 pacemakers and several metal screws and implants embedded into my body.

I can do this! Right? Can I do this? Do I have a choice? What did I do that’s so terrible in my life? I have tried my best to be a good person & to help others. I’ve been a Chemo-angel since 2005. I’ve written countless letters, made numerous videos and I’ve met with & spoken to legislators regarding this fake opioid crisis! This horrible and torturous pain crisis that’s killing innocent people everywhere.

Now comes the big question, what happens with my post-op pain care? My pain Dr told me if he was my anesthesiologist, he wouldn’t give after care post-op meds because of “risk for complications”! Gosh… I’ll bet if it was his skull being drilled, he’d be asking for some pain relief medication? He acted like I was getting a hangnail removed! Anyone else who I’ve told, says “oh my goodness, that sounds scary!”

So, my friends, here we are on the eve prior to the appointment when I’ll get all of my questions answered, I hope! What do I ask? How do I ask it? Will I be judged? Will I be too complicated and will he “run”? Will he really not help me just because I’m afraid? I’m not acting out hysterically. I’m not crying in front of the Drs. But I’m deeply scared and I’m having horror flick, bloody, stabbing nightmares! I don’t even know the surgery date as if this post. But I’m pretty sure I’ll know by the time most of you read this.

I promise to let you know when it will happen. If anything happens to me, please don’t forget me, OK? I love so many of you. I’ve seen so many of my friends in pain pass away over the past few years…it’s sad and I miss them a lot (Connie, Cyndi “Maw”, Theresa, Gwen Barbara, and Dawn Anderson most recently).

I’m not being morbid, I promise I’m just afraid. I feel less strong as I get older now. I’m 57 years old and was just looking forward to enjoying retirement with my soul-mate; my husband. He retired last June and we’ve had one thing after another come up. I’d really like to take a breath and enjoy some period of time in my life, for a change. We have 4 darling grandchildren. I just want to hug them, love them and enjoy them as much as possible. Will I ever get to do that now?

Oh…. & last but not least, I told my father about this upcoming surgery. I told him that “I wanted my mom more than ever right now” (she died in 2002). He told me that through her cancer etc., there were many times she “needed things“(he was telling me that I wasn’t there for her)! Well, I’ll just share with you all that I tried prior to my catastrophic car accident, to be there for her. I showed up at the hospital even after being told “she didn’t want me there”. I got there and I was told to leave. I was the only person allowed by the nurses, to sit with her in PRE-Op for 2 hours. We had 2 hours of alone time and it was once in my life that we got along & she wanted me around, it seemed? It was very nice, actually. But then the entire duration of the surgery, I was bullied, mocked, disrespected and literally treated like scum under a sink, by my Aunt, my 2 brothers and my dad.

Please pray for me so that I can be strong like I used to be and like I usually am. I need strength and . I’m terribly frightened tonight as my fate lies in the hands of a stranger that I will meet in 7 hours or so. I have heard & seen many horror stories of pain patients like me, being denied proper post-Op pain management. That fear is probably my biggest fear of all, or in the top 3!

Oh yes, I almost forgot to tell you what my Pain Doc said before I left his office on Thursday. He told me he was “OK with me getting the 3 days of post operative pain control from the surgeon”. He told me to “not accept the post-op meds if they just give me Tylenol with codeine, because that would be like a baby aspirin for me”!

In 2013, I had a full pectoral rebuild and new pacemaker. My cardiologist was wonderful to me! Things are so different now! Im feeling like the powers that be, the government just want persons like me to be gone and out of the way. But I’m still a human being. I want to live. I want to travel even a little. I want to be a grandmother.

I promise to write a quick post as soon as I process and know what’s happening & when the surgery will be.

Thank you in advance, for any and all prayers, positive thoughts & energy sent my way.

As I await my upcoming appointment I would love to be able to sleep. But when I’m really afraid, my GI tract takes over. It’s as though I’m on “auto pilot”. I get overwhelming stomach nausea and flu-like symptoms. THATS how fearful I am feeling. I’ve tried to control it but it’s a combination of PTSD, Dysautonomia & a highly over active “fight or flight response’.

In conclusion, I have a final request: Now is NOT the time to tell me a horror stories regarding any of your past head, skull or brain surgeries. When I recover, I promise…..then I will be glad to listen, help and share etc. Also, it’s such a shame in these days of crazy & draconian policies, that we all have fear instead of trust in the entire “system”.

Sending you love and light!

The Nightmares of Pain Refugees


Hello Luvs,

I was deeply touched by 2 stories that I’m about to share with you! I’d like to personally say “thank you” to Sheri Owen & Maria Higgenbothem. They are the 1st and then the 2nd chronic pain patients in the video below. I want to thank them for their bravery and their candidness.

Sheri had a level-7, spinal fusion and did not receive any pain care in the hospital after her surgery; outside of the normal regimen that she’s been on for years at home.

Secondly, we have Maria Higinbotham, who went on “Nightly news with Lester Holt and Kate Snow. What’s happening to the Chronic Pain community is torturous and wrong! It’s inhumane and I would’ve never thought this would be happening in the United States of America in 2019. It’s almost like the old practice of eugenics. As if they want us to be gone? So that we’re not a burden on society anymore? This is so morally wrong! Please go to http://www.Videoyourpain.com.

Share your pain story with our legislators, politicians, government, doctors, and pharmacists. Let’s share these painful stories with the world and command that this torture be stopped!

I’ve put the two videos together for your convenience and to CC for the Deaf and Hard of Hearing communities/audiences.

Also, I’d like to add that there are several advocates & groups who trying so hard to do all that they can to help the pain community! I thank you all from the bottom of my heart.

Here’s the link to the original “Nightly News” piece on NBC. (Lastly, there are two news media outlets that are listening to us. Fox News and NBC now have their ears and attention turned to the pain community. Let’s tell them everything that’s happening. Talk to Lester Holt, Kate Snow at NBC & Greg Gutfeld at Fox News. Go to Twitter and find them by putting their name in the search bar. Talk to them! Tell everyone you’re story of under treated and/or untreated pain. They are now listening and we need their help and their voices!

I’d like to say a special “thank you” to David Weiland for posting the video in CIAAG Facebook group.

Here’s the Link to the Facebook Page for “Nightly News” with Lester- NBC Holt

This is the “Chronic Illness & Awareness Advocacy Group (CIAAG) and Non-Profit .org 501(c)(3), Founded & run by Lauren DeLuca & Jayne Flanders: Here’s the link to “CIAAG” Chronic illness awareness and advocacy group on Facebook

Here is the online link to the CIAAG website at www.ciaag.net

Here also are the links to listen to Dr Kline, MD, at Jonelle Elgaway’s Show on Conspiracies Against Wellness Network (CAW): You Tube page for CAW

Here are the links to the C-50 states group page run by Valorie Hawk: Link to Coalition of State Leaders Group C-50

Please everyone try your best to come together and let’s fix this problem! Because it’s a huge problem, a national emergency and a humanitarian crisis.

Here are two more links to a couple of great videos about #1: several pain patients stories of torture: The Link to “Fight for Our Lives”, a short Video that I made regarding this opioid hysteria & untreated pain crisis and #2 is a video about Suboxone. Link to my video, ”Pain, Politics & Suboxone” (It’s a good drug if you’re an addict but has a very low analgesic effect on chronic pain. Not a good choice for persons living with chronic pain illnesses)

Thank you for reading and please share!

ASL Learner Mistakes


Hello Luvs,

Here’s a short video that is about some of the most common mistakes that people who are learning ASL- American Sign Language make. I hope you enjoy!

ASL Learner Mistakes https://youtu.be/CHRkPKa5iRU via @YouTube #asl #americansignlanguage #asllearningmistakes #aslmistakes #deafculture #deafcommunity #hh #hoh

Part of Two Worlds


Hello Luvs,

Many of my “regular” readers may remember that I am “Hard of hearing”. Hearing people usually use the term “hearing impaired”. We prefer to be called “Hard of hearing”. Mostly because we don’t feel that we are broken or “impaired”. Technically it means that Im not totally “medically possible 100% deaf”. I can hear a few various pitches, frequencies and sounds. With my hearing aids in, I can hear a little bit during a “one on one” conversation. But add in background noise and people who mumble or talk very fast; and then it’s nearly impossible. Next, add the situation of trying to “listen” to several people at once, in a crowded room or restaurant? Lastly, there are those with facial hair all around their mouth and lips. They are the group for me, who have the most frustrating lips to read! Then again, it’s not really like “reading”. Because it’s more like piecing together bits and pieces of a puzzle & then trying to “fill in the missing pieces”.

In case you’re not familiar with my hearing loss journey; I’ll recap just a little bit for you. When I was a child, I had recurring ear infections. During those times, I could often be found literally rocking my body back & forth, while curled up in the fetal position. My memories start as young as age 3 years. It was always pure hell while I was living with horrible ear infections. When I complained to my parents about the excruciating 😖 throbbing Pain in my ear (or ears), my mother would always say same thing. She’d tell me “Once your eardrum ruptures, the pressure will go away and you will feel better!” Well, it did feel better after the pressure was gone. But each time that happened it caused scar tissue to form in my ear drums. It also caused mild hearing loss as I was growing up. I remember asking the teachers if I could sit closer to the board to try and hear them better. Therefore my audiologist (in 2002) & ENT Dr. felt that I’ve had mild hearing loss since I was a child. I had tubes put in my ears when I was about 7 or 8 years old. They were surgically placed multiple times and for several years.

Later in 2002, I was a passenger in a car driven by my husband. We were just driving along through a green light when we were hit by a car running through a red light. It was considered a “catastrophic accident”. I acquired a TBI (traumatic brain injury) and had multiple injuries and 9 surgeries. I went to brain injury rehab for 3 years & had 9 years of PT/OT, balance therapy and speech therapy. I acquired a pacemaker, glasses with prisms (for lowered vision), 2 screws in my left shoulder and 2 hearing aids. I also got a wheelchair, a seated wheeled walker, a motorized scooter, loft strand crutches, a cane and several other helping aides for activities of daily living.

I won’t bore you with all of the chronic pain illnesses that came out of that accident. That’s not what this post is all about. But I also acquired a bi-lateral sensory neural hearing loss in both of my ears L>R (but currently (2019), it’s R>L & it’s a mixed hearing loss). Along with the many medical issues, I also acquired lower vision. I saw a Neuro-Othamoligist, who put prisms in my glasses to try and correct some of it. The prisms really bothered me. Today I just have a very strong prescription for eye glasses. Everything has a bit of a halo effect.

It’s ironic and very awesome that prior to that MVA (motor vehicle accident), I had been an ASL Interpreter. I worked at a Deaf preschool and then I interpreted for a school district. In the end, I was a medical Interpreter at a University hospital. I even did volunteer work doing medical interpreting for Deaf/Blind at free medical screening events. I had gone through a 4 year SLS/Interpreting program and finished with a 3.8 gpa.

Back in the 1980’s when I went to college, I practically lived at the dorms with my 16 Deaf friends. We watched CC “General Hospital” daily at 3:00 pm. We even tried to schedule our classes around it! It was a social hour. I’d been learning ASL since age 11 & even “tested out” of the first fingerspelling class.

The Deaf community accepted me and they were kind to me. At that time I went to Deaf bowling every Thursday with DAD club. I had a Deaf boyfriend whose sister was a cheerleader at MSD & we went to all of the football games and even the homecoming dance! Me and my group of college friends, who happened to be Deaf, used to go out dancing on Friday nights. One time my friends & I were on our way to a dance club and we got pulled over for a slight bit of speeding. We were all packed in the back of a mini van signing with each other. One of my friends told me to “talk to the officer”. I was terrified and I told him “No way! I’m afraid! Since I’m with you guys, I don’t want to talk to him either!” We all laughed as the officer just let us go with a handwritten warning on a piece of paper. That was a fun and I felt included.

Just to back track a little, I started learning ASL at age 11. My best friend & I babysat for a Deaf family who lived next door to her. The parents and 6 children were Deaf. The children went to the Lutheran School for Deaf at that time! They included me in many Deaf social activities and I learned the language & received my sign name from them. First we played games and I learned colors, numbers, family signs, days of week and more!

I’ve always felt accepted by the Deaf community. I always respected the language, ASL. How ironic then, that I lost a moderate-severe percentage of my hearing & was already prepared with the tools I needed!

I’ve lost touch with some of my old friends from DAD (Deaf Association of Detroit). But I still have a some close friends from the past, who are Deaf. I still feel a part of the community. I’d like to become even more involved again! But living with several high pain chronic illnesses makes it difficult to get out due to persistent pain.

I’ve found my own ways to reconnect and to feel not so “in-between” two worlds. I get to teach ASL vocabulary with the Deaf Socials on their Instagram and Facebook pages. I love & look forward to each new vocabulary list they give to me for teaching! I truly enjoy doing that and doing song covers to ASL on my Youtube channel: My YouTube channel at: ASLSuzyQ . I also post to my Instagram A link to my ASL Instagram and Twitter A link to my ASL Twitter with the same name. I do this for fun and as a volunteer and advocate for Deaf Awareness.

Lastly, I used to love being a part of two ASL performance groups during the 80’s, when I lived in Arizona & worked at a Deaf preschool. One group was called “Silent Impressions productions”. We performed in choreography and ASL to broadway show tunes and in costumes! We put in shows at ASU and it was so much fun! The other group to which I belonged, was called “Silent Praise”. We performed Christian songs while others did lyrical dances. We did that at the ASU Neumann center. It was such a fun time in my life. My friends and I also interpreted for our church community at St. Theresa’s Catholic Church in Scottsdale, AZ.

After reminiscing in this post, I feel so grateful that I had already been involved with the Deaf community & had many years of experience with ASL, before I became more (*I was mild HoH since elementary school) Hard of Hearing. As ironic as it seems, it’s not all that crazy. I had a mild hearing loss and then it worsened due to the TBI.

I mostly seem to write about chronic pain illnesses. I’ve been writing about the rights of chronic pain patients to have access to much needed opioid pain medications. We need these medications because without them, people like me wouldn’t even be able to do the small amount of activities that we try to do. I was forcibly tapered from my long acting pain meds after doing pretty well on them for almost 14 years! Now I sit in my recliner for approximately16 hours daily. I try to get up, put I make up and do some online activities every few days. But my life is not the same with so much less help for the pain.

Although I still want to continue advocating in that area, I’m doing more & more advocating for Deaf awareness, inclusion and preservation of ASL. I thought I’d put my hearing loss story and ASL history here in my blog too. I’ve written a few posts about Deafness and trying to live in “two worlds”. But I’ve never explained the details of how I became who I am today. I’m a survivor of long time childhood abuse, domestic violence and then a catastrophic car accident. I’m not a “victim” but I am a “fighter and a survivor”! Don’t ever give up!!

I have a Facebook page at: Link to my ASLSUZYQ Facebook page

I have a Facebook group called “ASLExpress” at:Link to join Facebook group ASL Express

Lastly, I have an ASL group for allowing people to post ASL covers in a safe place, called “ASL Song” at: Link to ASL Song Facebook group

“Silent Impressions Productions” & I’m 2nd left
Me Interpreting at church before MVA
Me Interpreting a Song in “Silent Praise@ group

Me working at Deaf preschool
I was in newspaper when I taught elementary kids

My hearing aids