Above is a 37 second update from my appointment today 6-10-19. Thank you for the outpouring of love ❤️ and support! You’re the Best followers/fans/friends ever!!
**ADDENDUM: SURGERY WILL BE JULY 26, 2019** they scheduled it today…. JUST WANTED TO UPDATE YOU ALL… sending peace, hope, love & Light…
Feel free to email me: firstname.lastname@example.org
Heres my Instagram post today too:
So I saw the Skull base/neuro/Ear surgeon today. I will be having the tumor removed soon. I will have a Tympanoplasty(they’ll reconstruct my eardrum using a “disc” made from cartledge & Skull fascia. This is to prevent this from returning. The 3 little bones needed for hearing are diseased. I’ll be getting possibly prosthetic bones? Also I’ll be having a “Mastoidectomy”! Removal of the diseased part of the mastoid bone. It may make my HOH/ “hearing”worse or same but must do this because if it gets into the brain it can kill me! It’s really scary! Many times people hear nothing afterwards, many times people get extreme dry mouth from damage to salivary glands during surgery. Many people get worse “white noise” or pulsating in ear after surgery. Many people get a strange taste for months or forever. They try to not injure the facial nerves by doing EMG during entire surgery, but it can happen… I’m honestly not scared of the white noise or pulsating or worse/same HoH —but I’m frightened of the brain surgery part. They say they’ll be conservative with my hair being cut but still a 2 finger radius around my ear will be cut… just wanted to update everyone. It will be in 2 months because it’s very slow growing tumor and may have been there my whole life?? But it takes time to get the 4 Drs clearances that I need and also his schedule is booked until then. Now I’m happy to have my Summer but still scared because I now have too much time to be thinking about it all!
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’ve decided to share this here with you. It took all I had, to do this song (3 1/2 minutes). I’m being quickly tapered from my LA/ER pain medication.*I had been a medical & educational Interpreter for the Deaf before my car accident in 2002. I have been through a lot as have
Many of you! This song and ASL (American Sign Language) mean so much to me. This song is called “Overcomer” by Mandisa. I think whether you know ASL or not, this song will give you chills. It does me!
I hope today is a low pain day for you and/or your loved one(s) living with chronic pain.
I am Hard of hearing now since the TBI & I had been an Interpreter for the Deaf; prior to the car accident that caused all of this pain & these chronic illnesses.
I thought that you might enjoy seeing this this song performed in ASL, or “American Sign Language” & sung by Shawn Mendes. It’s called “It Isn’t In My Blood.” I feel like this song is exactly how I live my life, especially now. Then I thought about it more and realized that this is how many of us live our lives. We are People living with tremendous amounts of Chronic Pain day after day. This song is about not giving up. it’s also about how we reach out and ask for help but sometimes it feels like nobody’s listening. This is especially true right now, during these difficult times for chronic pain patients who need opioids to help give them some semblance of a life.
This song talks about how it just isn’t in me to give up or just lie down and do nothing. We all need to reach out and ask for help sometimes. We are fighters and we are survivors.
I just thought that this was an appropriate song for Chronic Pain survivors. I really like the lyrics to this song & I hope you enjoy it.
Thank you for following me and my blog “Tears of Truth”! If you’d like to follow my YouTube channel that has a large variety of full songs done in American Sign Language; the Link is here: Suzanne’s You Tube channel “ASLSuzyQ” Please support me, if you do enjoy it; by subscribing to my ASL channel. As I mentioned before, there’s a large variety of songs, from Country to Pop, and from Christian contemporary to Broadway musicals. Thank you so much again. Have a low pain day!
The movie “The Greatest Showman” is a great movie! The music is beautiful. After seeing this movie (the 1st movie I’ve seen in over a year), I had to come home and gloss the song “This is Me” and then sign it & post it ChanneYoutube.com/ASLSuzyQ. I am Hard of Hearing and I can hear and feel the music but the words get “mushed” together. So I learn the words and then gloss it into ASL and then I sign it. I am part of the Deaf and Hearing community and have been learning ASL since I was 11 years old.
Here is a very special song in American Sign Language. It’s the song from the above movie, & it’s called “This is Me.” If you enjoy my ASL videos, please Subscribe to my YouTube Channel. Again it’s at: Youtube.com/ASLSuzyQ…Thank you for visiting and watching.