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.
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!
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!!
This is a quote from a dear friend of mine who is profoundly Deaf and he is a Professor of ASL at a University in Utah….with that being said….
This is a great blog post by someone on Tumblr, to whom I Subscribe. This is about what it’s like to live with hearing loss (*like I do and many others)..but still try to be functioning in both the Deaf/Hard of Hearing & Hearing worlds. Please feel free to visit & Subscribe to me on: Instagram, Facebook, Tiktok, Twitter & most of all YouTube At: ASLSuzyQ (the SC that I use most is: jewelrymkr)
I have been working on a couple of new song covers in American Sign Language. I thought I’d share them with you as I love to do. This on is the song called “The Story of My Life” by a group called, “One Direction” and if you click on the blue link, it will take you directly to that video.The Story of My Life – ASL
The second one that I have done most recently, is called “A Million Dreams”. It is sung by Hugh Jackman & Michele Williams. It’s a very popular and lovely song from the newest hit movie, “The Greatest Showman”! If you click on the name of this song in the blue link, it will take you again, directly to my You Tube Channel. Please remember to Subscribe to my Channel and you can click the 🛎 bell , if you’d like to be notified when I do new songs in ASL. If you don’t want the notifications, you can still Subscribe, but don’t click on the 🛎 bell, that sends the notifications. Also, please “LIKE” the videos if you enjoyed watching them. Please also “LIKE” the videos if you didn’t enjoy watching! 😂
Here’s the second song in ASL: “A Million Dreams”:
I love American Sign Language 🤟🏼 ! I am a part of the culture and I’ve been since I was 11 years old! I was mildly hard of hearing due to many ruptured eardrums, untreated. (long story-see private posts and just email me for the password. Email me at: ASLSuzyQ@gmail.com)
Hearing or loss of it, is not a handicap and neither is it a weakness or a disability. Deafness is a cultural identity. I have had a tumor (Cholesteatoma) in my right ear since approximately 2014-2015. I didn’t know it was there. My hearing diminished even more until it was completely gone in right ear and moderate/severe loss in left ear. I recently had surgery to remove the Cholesteatoma, but it was very large & now (7-2019), my right ear is closed. But I became moderate Deaf in my right ear and Severe in my left; after a Traumatic brain injury due to a motor vehicle accident in 2002! I am proud to be in a culture of warriors and Deaf historians! The music & words are all a bit mushed together. I miss a lot in verbal conversations. I nod my head and hope for the best. I feel a bit lost sometimes in such instances. I’m so very lucky to know what I do know about the naturally formed language of ASL. I’m fortunate for my experience as an Interpreter at a hospital and at Universities and school settings in the past. Ironic isn’t it, how life can take a turn?
But what does bother me is when people pretend to know ASL, because they know “signs”. The first lesson in ASL is that a sign does not equal a word! A sign equals a concept! I go on YouTube all of the time and I see people acting as though they know the language. They post a song and then post a “tutorial ” and then proceed to teach others incorrect signs and fake ASL; which is PSE at best. But do you know that PSE is not a language? It’s just a mush mash of signs in English word order. So then, you’ve taken a beautiful Language like ASL, and desecrated it! Anyone can do anything they want because it’s the internet. If you want to post songs and such in “Sign Language “, then by all means, feel free. Just write up a bio and explain that you’re just trying or you’re practicing your use of ASL. Say that you’re doing your best or that you are learning the language. But don’t call it ASL, unless it is. Then please do not post a tutorial unless you’re truly sure it’s correct and grammatical ASL. It is just the respectful thing to do. We don’t like our language polluted & then taught incorrectly to others who are vulnerable and learning.
I have a few videos up from the beginning of my YouTube channel that are a bit PSE. When I first started my Youtube channel, I thought I was supposed to sign the songs in English. I thought the words were important for songs. But words are not important. It’s the concepts that are important.
I don’t make tutorials because each person may sign the same song a bit differently. It’s a choice in lots of instances; a choice of which signs for the concepts you want to convey.
Yes, please learn the beautiful language of American Sign Language, ASL! But don’t be arrogant and don’t be a student teaching other students! Let the teachers, native ASL language users, Deaf community & CODA’s teach those who wish to learn! I honestly do not mean to dissuade anyone from making videos and having fun. I only mean to please not make tutorials if you truly don’t know for sure that it’s ASL. Don’t be the “blind leading the blind”! That’s what I’m getting at most of all, I suppose.
Feel free to join my ASLExpress group on Facebook. We are a group of people who love the language of ASL. We enjoy Deaf culture and we share communications and stories in ASL. We are a group of Deaf, HH and Hearing persons who love, use and respect the language. We are a combination of all levels of ASL users; from beginners through native Deaf. We like to teach, learn and make friends.
I also have a page called “ASLSUZYQ”; on Facebook, Instagram, Tiktok & Tumblr! I don’t claim to know it all. I learn new signs everyday! I’m always willing to help and take advice from the Deaf “elders” in ASL! I’m actually taking an online course in ASL gloss for songs. It’s called “Beyond Words” with Rosa Lee Timm! It’s a blast, though due to chronic pain and illnesses, I’m a bit behind. Thanks to the Internet, I can go at my own pace.
Below is my granddaughter &!me (I actually have 3 granddaughters & 1 grandson)! I’m teaching them ASL while they’re small because young minds are like sponges. The littlest ones learn the language so fast!