My Story: From Interpreter for the Deaf, to Hearing Impaired in 10 seconds!

My Story: From Interpreter for the Deaf, to Hearing Impaired in 10 seconds!

By Suzanne Burnett Stewart

Back in 1999, I left my career as an Interpreter for the Deaf and had to go on disability. I was approved on my first attempt and that doesn’t happen often.

Suzanne Burnett Stewart

When I was set to go to the appointment with the physicians from the SSDI, they called the day prior to my appointment and spoke to my husband. They told him that they received my team of physician’s reports. They let him know that I did not have to attend that appointment because they said “Suzanne is the worst case of childhood trauma/abuse that we’ve seen in the past 36 years.  We don’t want her to have to tell her story to even one more person.”  I was approved and then things got medically worse from there.

In 2002, I was in the car with my husband, on our way to have a little dinner out alone together & a man ran through a red light.  Within seconds, our lives changed forever!

I was unconscious for about 20 – 30 minutes, I am told. I awakened a couple of times in the ambulance and again at the hospital. But I have no other memories of that day except for extreme pain and hearing my own screams during the X-ray exams.

I was really lucky that my husband was unhurt and that the kids were not in the car. I spent the next 3 years in daily brain injury rehabilitation.  Also, I spent the following 8 1/2 years in Physical and Occupational Therapy along with going through approximately 8 or 9 surgeries.  I had knee surgeries, open shoulder surgery including 2 screws in my left shoulder, 2 torn rotator cuffs and then Adhesive Capsulitis. There were mouth, jaw and left facial surgeries, along with 2 pacemakers and total pectoral reconstruction.  I endured many hours of MRI’s and other more invasive tests.

After the pacemaker, I had to undergo the painful, barbaric and old CT Arthrograms in both shoulders and both of my knees. I can no longer have an MRI due to the pacemaker.  As far as aids for daily living, I ended up with 2 AFO’s (ankle foot orthotic braces for foot drop), a shoulder brace (for nerve damage, pain & winged scapula) for very painful Long Thoracic Nerve Neuropathy, wrist brace (R), 2 forearm/hand/wrist braces for night time, a wheelchair, seated walker, motorized scooter, forearm crutches and a cane. All of which are still used today intermittently, depending on the activity.

In 2003, I got a pacemaker because I’d been fainting constantly. I was found to have a heart issue called “Sick Sinus Node Syndrome”, along with Dysautonomia, POTS (Postural Orthostatic Tachycardia Syndrome) and Prinzmetal Angina. Later in 2005, I had a heart attack. They found it to be a very real heart attack, but it was caused from something called “Broken heart Syndrome”. For this I won’t go into details, but I was also diagnosed with Atrial Fibrillation and was put on blood thinners. Then in 2006, I suffered a CVA or a stroke due to the A-fib. I was put on a higher dosage of the blood thinners.

Then in 2007, I had right foot surgery and came out with worse pain than before I went in. I was told that I had RSD/CRPS or “Complex Regional Pain Syndrome” in my right foot at my 6 week, post-op check up. I couldn’t believe it!  After I read up on the disease, I decided to get a second opinion. The foot/ankle Orthopedic Dr. agreed with that diagnosis and he sent me directly back to the pain clinic.  I had first gone to the pain clinic for:  cervical and lumbar herniated/bulging discs, Degenerative Disc disease, Scoliosis, Long Thoracic Nerve Neuropathy, PolyNeuropathy In Collagen Vascular disease (*which is really the same as EDS type IV-Vascular) & Chiari I etc.,right after that car accident. I went through epidural nerve blocks, trigger point injections and much more.

The pain clinic saw me for those first several years but later turned me over to my G.P., because I was a patient with true high pain issues but not a candidate for an SCS (spinal cord stimulator) or an intrathecal pain pump because it was determined that I have C.I.D. or “Combined Immune Deficiency Disease”. I can contract an infection in my spine more easily than the average person and/or become paralyzed. I was put on pain medication that I had tried to refuse several times; because I was afraid of it at first. Sometimes we are afraid of the unknown and I’d never had pain medication prior to that time except for during my C-Sections. I received a letter from the pain clinic’s, Pain Psychologist, stating that “I do not have an addictive personality”. I took the pain medications and after many many attempts with bad side effects, swelling, vomiting, fainting etc.; we finally found some pain medication that helps me and it lowers my chronic & CRPS pain.

Luckily, the auto insurance paid for drivers to take me to and from the TBI rehab and all of my numerous medical appointments. I suffered a Traumatic Brain Injury and had to endure several of those long Neuro-Psych testing sessions for years. They always ended with the same comments, which were:  “short term memory is in the toilet, problem solving difficulties, emotional difficulties (because I cry more easily), concentration is very low “, and more.

Nothing has improved very much, in those areas since that time.  As far as the TBI goes; I’ve just learned to live with it and adapt. At the time of the car accident, I was in the middle of reading the 5th “Harry Potter” book. I could not & cannot read those books any longer. When I put down a book and go back to start reading it again; I find that I’ve forgotten everything I had already read. I do best with articles and short stories now and that’s just how it is and how I’ve had to adapt. The TBI or Brain Injury Rehabilitation center did not cure me, but did teach me how to adapt and live with my brain injury. Nobody who meets me can tell that anything like that is wrong with me. But the persons around me often or those who live with me can clearly see the differences from before the MVA and now.  I cannot remember movies and can see the same movie several times.  If you tell me something today, I won’t remember it next week and probably not tomorrow. I cannot remember anything short term, unless I write it down. I don’t remember appointments or some other information that I’m told.  I feel very bad when I meet new friends, especially online “friends”.  When people have similar names, I get confused and feel embarrassed. They’ll say “remember me, from —?” But I truly don’t and I feel so bad. But if I feel comfortable, I just tell them about my TBI and ask for clarification. It’s sad because even new physicians will say “Well, at least you look good”! Or they’ll put on their report that “patient doesn’t look sickly”. What a stupid thing to put on a Dr.’s report!  I have recently been diagnosed with Gastroparesis and you can’t see it!  Suppose a person has a heart &/or lung condition, you would not “SEE” that and they might appear to be “not sickly”.  It is what’s happening on the inside, that is important.

The brain injury has caused several of my medical problems/issues as well. I was evidently born with “Arnold Chiari Malformation I” because they found it on the MRI’s s/p the MVA. But it was “sleeping”, they told me; and after the accident, it was “awakened”.  Since then,  it’s been difficult to hold my head up for long periods of time without pain and weakness. I get something called “Chiari Migraines” in back of my head and neck; which are very painful and cause nausea and at times vomiting.  I also have eye/vision problems due to the TBI, including: a Convergence Insufficiency, lowered vision,  extreme dry eyes and Nystagmus. The Convergence Insufficiency means that my eyes won’t work together as a team and get fatigued easily. The other issues are self explanatory, except the Nystagmus. It means that my eyes sometimes shake a bit, when looking to the right, left, upwards and downwards without moving my head. I’ve had punctal plugs put in my eyes several times and had prisms in my glasses s/p the MVA for a couple of years.

Suzanne signing

I went to University and graduated with honors in Sign Language Studies/Interpreting.  I worked for a local school district’s Hearing impaired program and at a Major University hospital as an Interpreter for the Deaf; prior to my TBI & other injuiries. I went from being an Interpreter for the Deaf, to a Hearing Impaired person with 2 hearing aids. Prior to the TBI, I remembered phone numbers and other data.  Now I depend on my smart phone, using:  Google, reminders, Notepad and “Siri” on a daily basis, along with the Calendar features.

I try to be a person who uses “Hope” as a verb. That is my slogan, as I’d said in one of my other articles. You must “do” something in order to help yourself “Keep Hope Alive”. This is a venue for me to hopefully help as many other chronic pain patients as possible. I try to be as positive as I’m able to be. But on any given day, I can feel negativity creep in as some of you do. I know we can all have that happen. It’s what we do with that negativity that matters. We can lash out at others like my ill mother did. Or we can take the negative thoughts and throw them out the window as far away from us as possible!!  Sure, there are those darker days, but like a Phoenix, we must rise up against this monster called “Chronic Pain”.

Suzanne suffers from full body CRPS and has lived in chronic pain since 1999. Before being disabled by chronic pain, she was an Interpreter for the Deaf at University of Michigan Hospitals and for several school districts, working with children.  Today she is a patient Health Advocate, guest writer, blogger and fundraiser for RSDSA and an Ambassador for U.S. Pain Foundation and creates Advocacy videos, and writes in her own blog “Tears of Truth” (suzydukettes.wordpress.com).

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Authored by: Suzanne Stewart

There are 14 comments for this article
  1. Jean Price at 5:02 am

    Cherlymarie…thanks for your kind remarks. I hope the tears were healing, I think they are one of nature’s biggest blessings, not a sign of weakness…but rather a needed release! I also think tears are one of the best anti-ulcer medicines and stress relievers for us all!! I understand about feeling like you’re getting weaker, and losing ground. And I’m so sorry this is where you are now too. Sometimes we would even settle for a plateau of our pain…just to not have to look at the reality of being more incapacitated with pain than we are in the present.

    For me, especially in the beginning, I kept “waiting” to get better, frustrated that my best efforts weren’t helping and sometimes made me feel worse! Then, one day I realized this was my new norm! Although that was so hard to face, it also,was freeing in that I could start using my energy to figure out how to live this new life a little better…maybe get some small joys to help keep me going. Getting through this gracefully isn’t the goal…a dear friend reminded me, one day. Just getting through it anyway you can IS what counts! And she also told me I didn’t always have to be strong bearing up to all these losses…it was,okay to take some “wallow” time and be flattened, then I could pick up and start on what was the biggest hurdle. Owning that this is awful, and that we are doing a good job cooing and surviving is so important. It’s finding our own affirmation and it’s TRUE! I hope this may somehow help you, Cherylmarie. Having our stories, like you have, and our experiences can often lift someone else… can help remind us we are still worthy people, even with pain! And we are! Each of us is our personal best…and it helps to focus on what we’re doing right…instead of wondering what we’re doing wrong that isn’t helping! I wish you comfort and joy, and the heart peace of knowing you’re a terrific person, and your internal strength can help you through all this.

  2. Cherylmarie at 7:45 pm

    Jean and suzanne, reading your comments has brought a flood of tears. Yes I have had huge struggles, could write a book. But when I read your story, I felt like why I’m I getting weaker as time goes on, not stronger. I feel as time goes on I get more stress, more worn down. I want to be the strong person I used to be. Suzanne you are an inspiration to me for what you have been through and you should write a book! Jean, you always have great comments. Thanks for the kind words.

  3. Angelica Heavner at 2:04 pm

    Suzanne, its interesting that they call yours short term memory problems. My daughter was missed diagnosed thru school as ADHD and learning disability. Come to find out she has short term amnesia and always has. She also has some comprehension issues. She does sticky notes all over the house to help remember things, and repetition is the key. She has gotten her Associates degree and now working on her bachelor’s.
    Deaf Gator, my daughter is hearing impaired. That is the term she prefers because she does have some hearing but is losing hers. They don’t know when she will but until then it is for her impaired not lost.

  4. Suzanne Stewart at 7:43 pm

    1. Leah Salby- a): I’m sorry, I reread my story/article (which is just a 1/4 of what’s actually happened. It would’ve been too much & too long). But where in my story did I say that I wasn’t given any pain medications after any of my 8 or 9 surgeries? I most definitely did get and took pain meds after each of My surgeries. b): I went to 5,6,7 shoulder Dr’s who all kept telling me that I had “2 torn rotator cuffs & even after and during intense PT/OT; I still got Adhesive capsulitis (which is “Frozen Shoulders”). I finally was sent to a Neurologist and to Cleveland clinic orthopedics. I was told the same thing, but more! I finally was listened to for two other painful issues that weren’t taken seriously by all of the other Dr’s! I was found to have an 8 inch span of broken Right Long Thoracic Nerve damage; with winged Scapula. Also For that entire year that I was complaining of a “Nerve zing” down my left arm also s/p that MVA,, I finally was vindicated when the Orthopedic Dr at Cleveland Clinic said that my left biceps tendon had ruptured in the car accident. Nobody would listen to me bcz of the numerous injuries. So that Dr said that it had unattached from the bone and it regrew wrongly for a whole year. I had to have open shoulder surgery where they drilled into the bone and had to unattach and reattach my left biceps tendon with 2- titanium screws. It was a very painful surgery that could’ve been prevented or at least done easier had anyone listened to me for that entire post accident year!!(***One Dr. Prior to my trip to Cleveland clinic, actually said to me “What part of “I CANT HELP YOU!!Don’t you understand??IS IT YOUR BRAIN INJURY?”… Oh My Gosh! My driver was in tears, that Dr’s own office clerks felt badly and I was bawling!***C): I tried TENS too & didn’t like it much. It didn’t help much. D): I have EDS TYPE -4 Vascular -aka Ehlers Danlos Syndrome with hypermobilty in my shoulders especially. I have “Polyneuropathy in Collagen Vascular Disease”, which is really similar & a connective tissue disease. E): I was injured by a man who ran a red light and our car was t-boned and totaled! I was unconscious for 30 minutes. I was under the care of one of the best brain injury Dr and I was sent inpatient for a long time via ambulance and was hospitalized by a Trauma Dr….. F): You should’ve gone inpatient with the injuries you described and being hit by a car. They’d have done many tests and set your shoulder, given you pain help and they’d have given or issued you whatever aids they thought you needed. G): as far as attorneys, yes I had a contingency attorney. My case was against the insurance co. of the driver of the car that hit me. I never went to trial, they settled out of court. I had too many multiple injuries, surgeries, a traumatic brain injury and 8-9 surgeries ahead of me; with permanent nerve damage, loss of vision and hearing and then I had a heart attack and a stroke. They didn’t want to go to court! My PMR Dr, who’s also a TBI specialist, issued me my motorized scooter, 2 fitted AFO’s or plastic braces molded to my own legs because of the foot drop/ nerve damage, 2 forearm crutches, wheelchair, cane, 4 pronged cane, seated walker, drivers to take me to appts. For several years until I could go through driver rehabilitation & pass. I got 2 shoulder braces, & an ice bucket with hose after my open shoulder surgery. H): I do count my blessings and those are: God, my husband/caregiver & soulmate, my two daughters and their husbands and our 3 Baby granddaughters! Other than that, I have no family and I was approved for SSDI in the beginning for: PTSD-C , battered woman’s syndrome, & CKDII. I was called by them “the worst case of childhood trauma & abuse they’d seen in 36 yrs!” I was starved, poisoned with Ipecac, beat as a young child and up until I moved out at age 20! I had guns pulled out on me, pointed at me and was locked in my room. There’s too much more and that’s a book in and of itself. I): I went to College, graduated with honors, & I was deemed unable to work and now I depend on my SSDI and my husband and have been unable to work since first 1999, for which I was approved for the above and then my health only got worse after that car acc in 2002!
    2. Cheryl Marie- Thank you and I admire you for your kind heart and empathy. Please don’t diminish your own pain or think your pain isn’t as bad as another’s. Whatever your worst pain is, that’s your own worst pain. Your worst is your worst. It’s just as bad as my worst pain is for me. It’s true that some of us get way more piled up “bad stuff” and it’s hard…but there’s always someone worse off than me and some much better off than me! Thank you for your kindness.
    3. HJ – I guess I don’t understand? Except for the fact that healthy or ill persons, all have to find ways to deal with aging and the changes with our bodies and minds whether we are in pain or healthy. Like my favorite self written slogan says “HOPE is a Verb and we must DO something in order to have Hope and positivity”!
    4. Deaf Gator- I am and have been a part of the Deaf community since I was 11 years old! I was a hearing interpreter and tested out of my first two college classes. I interpreted for a university and a university hospital. I also worked with Deaf PRE-schoolers and taught ASL to their parents and the kids. I lost some of my hearing from constant ear infections growing up in an abusive home. My parents would tell me, as I was a PRE-schooler rocking to soothe myself from ear infection pain, “don’t worry, once your eardrum bursts, the pressure will then be gone. Then due to the brain injury , I became “hearing impaired” ! I don’t see hearing impairment as a Disability in any way! I say that my “hearing ability is impaired”. My other issues/losses: chronic pain & “severe systemic /full body RSD/CRPS”, Knees, lower back, neck, shoulder, feet, hands etc. & all of the other medical issues with Dysautonomia/POTS, Coronary Spasms, a pacemaker, Chiari migraines, multiple herniated & bulging discs, Atrial Fibrillation, polyneuropathy in Collagen Vascular disease, EDS-4, Rheumatoid Arthritis & Osteoarthritis….and the list just goes on and these are my disabilities; along with the after effects of the CVA/stroke, heart attack and more!! Sooo I don’t see the moderate loss of my hearing to be a disabling condition but that my hearing is impaired, that is true. I’m not Deaf. I’m a very lucky person in that I read lips well and I’m fluent in ASL…but from the TBI, Im not as quick or good as I was and obviously am unable to interpret any longer.
    5. Marsha Reiner- thank you so much for your kind words. I will keep you in my prayers as well. We can pray for each other. I am very tired of the pain, but I refuse to give up.
    6. Jean Price- I agree that we all have our own worst. I tell my support groups this as well. When people hear my whole story, not just the snippet here; many react as some have here. Growing up in an abusive home, not just abusive but…well you can read about it. Then to get married and be dx with “battered woman’s syndrome”, get divorced. Then to be single mom with two toddlers, no child support, no family, no help and then to get in a car accident that took my life away as I knew it forever. The first several years were full of horribly painful tests, multiple surgeries, a stroke, a heart attack and a pacemaker. Then to lose a teen and bear that loss … the silver lining was to find love finally, my soul mate and Get married now 20 yrs ago! To get that teen Back, 9 years later was one of the happiest Days of my life also. So…yes..,I’ve had a bit More than my fair share of abuse, loss & Injuries..but we do all have our own “worsts” I agree with you on that! But some have much more “worst” than others. But then again, there’s always persons worse off and better off …..it goes both ways.
    7. Kathy C.- I’m so sorry for your partner and I will keep you both in my prayers. Thank you for your kind words. I also notice that since my long time GP has been gone, since 2014 Dec., it’s been so hard to find a Dr. Who will truly allow me to share all of my difficult pain & other issues. They want me to share only one thing at a time.
    8. Cheri Furr- thank you for your kind words. I can’t say anything about myself adapting. I have no other choice, yet I’d be miserable & stay miserable along with everyone who lives with me or around me. Dr’s saying the silly and downright dumb things they say, is atrocious! Saying in my health record on my last visit “she’s well nourished and does not look sickly”!! What’s wrong with that?? I was inpatient with Anorexia 3 times (due to being starved and poisoned growing up, I was afraid of food for a long time. I voluntarily got help.).. But their were people inpatient for Anorexia, starving and they weighed 300lbs!! It’s not what the outside looks like!! I have a Gastroparesis now & am unable to eat much more than potatoes, crackers, carbs etc…. so even though I’m on Opioids for high pain illnesses & am followed by a reputable pain Dr. And I’m unable to eat much protein or veggies etc,..but she/they say “well you she looks healthy”!!! Uggghh why can’t they remember the packet of typed pages that I gave them at my 1st appt.? I gave her/them my list of allergies, illnesses, (650 meds I can’t have due to long QT syndrome in my heart)!… surgeries and more!!! It upsets me greatly!
    9. HJ- I’m so sorry I’ve never heard of an auditory processing disorder. I’m so sorry that I can’t help you . Good luck to you, I hope someone knows and can help.

  5. I.M. Suffrain at 5:57 pm

    No doubt, you have many health conditions Suzanne Stewart. I can only sympathize with you, truly. It is nice to know that physicians can now SEE your/our pain! “At least you don,t look sickly”! Utterly rediculous statement. This type”thinking and evaluating” a chronic pain patient by a physician IS part of the serious problem chronic pain patients always contend with. We don’t have to crawl in to a facility to be agony. I must say with just two back surgeries that put me in the “failed surgery syndrome”, I have been overcome with pain for 20 years. I am still able to work as I have been self employed for 30 years. I suppose being self employed may? make me try to work a little harder?. Regardless, I would have been finished with the work world 20 years ago if it were not for my pain management specialist. I WILL be finished with the work world in about two months as I am being reduced on my opioid medication every month until I am prescribed 80% Less than I have been for the last 5 years. Previous to the last 5 years, I was being prescribed 8 times more of the same medication then, than I will be in about 2 months. I took myself down by 60 milligrams medication per day to reach 100 mgs per day. I feared of the bodies progressive toleranance to opioid medication would place me in the position of insufficient medication prescribed in accordance with the physicians education telling them not, to prescribe me any higher dosage to ease the pain. Wasted effort for 5 years. Needles suffering. Gonna get worse. It WILL cause good people to take their own lives. As a matter of fact, it already has. A good friend of mine told me today that a friend of his of whom I am aquainted, took his life shortly after Christmas, 2016. I was talking with the old friend today, who also has been in chronic pain for about 20 years. I will not go into what health conditions he is inflicted with, but I understand why, he needs opioid medication. As one chronic pain patient to another, I understand. The aquantence that took his life was a multi decade chronic pain patient. Not being too specific but, he had broken both hips at one point reguiring extensive surgery, had broken bones, soft tissue, and a suffered from a painful disease. Several different conditions that did cause chronic. disabling, pain. Yes, he sought help years ago and had been a chronic pain patient at one of the local pain management specialist but, unfortunately he had been dismissed from the facility due to being in so much suffering pain that the doctors……wife, who admits and discharges patients WITHOUT a physician license had discharged the man not too long ago. My od friend told me that the deceased man had done what people do when quickly denied medication and has no resources left. He could NOT get help from either of our two E.R’s in the small city we live in. He could NOT be prescribed any medication from ANY local or out of town doctor due to fear of license loss because he was asking for something to help him with his agonizing pain. He could not get any other specialist to “admit” him to treatment, (due to assasanation of his character from previous doctors “wife”?) No doubt the man could be visibly assesed both physically and mentally to be highly disressed to say the LEAST! As a last resort, I am told that he reported to one of our two “killer” local hospitals, proceeded to an empty room, lied in an empty bed and aked or most likely BEGGED for help. He was sent to a psychological center for evaluation. Don’t know if he received AYTHING for his agonizing pain. He was evaluated for a short period of time at the psychological facility and discharged WITOUT any avenue of escape from his agonizing pain and dark corner he had retreated to…..in his mind. I am repeating what my good friend told me about this poor, unmercifully treated man that had a history of chronic pain. At one point, not sure exactly where,(which facility) he was told he was a “just” drug addict in the MOST NEGATIVE manner anyone could treat another human being that was asking, no, begging, for help with his absolutely understandable agonizing pain. After dichargement from the psychological evaluation with -0- MERCY being shown to this man from ANY facility in this town. He took the only avenue of escape he could arrive at to escape what he KNEW was to be agony for the rest of his life. He had already been treated for chronic pain for years. Does anyone, DID anyone, a professional in health care OR psychological care help him? No………He discharged a gun where he knew would relieve him of his ongoing nightmare. What of the pain management “wife” that discharged him? Any repercussion? No, not yet. WILL there be ANY repercussion? I know which pain management center and of the doctors “wife” that has a no mercy streak! I was a patient there a long…..time…..ago.TDo I understand how the man was treated there? ABSOLUTELY! To what extent is she allowed to practice medicine? I do not know the deceased, personally but, I know who he was. More important and to the point, I know the type people he was. A person desperately, quietly, until he could NOT ebdure the pain any longer traveled the ONLY path left to escape……the pain. I hate so bad to hear this today because I know it is not the first incident like this that has happened and it will NOT be the last.I was devistated to hear this true story from an friend that happened so close to home. I feel so sad for the man and his family. I don’t know if he had family near or not. This type incident is so unnecessary. He was heartlessly treated. Unmercifully. No compassion or even an attempt to understand him. This is not true though. The authorities DO know the pain good people are experiencing. They DO know it is unnecessary. They DO know how and what they have instructed, forced, even the “pain specialists” to do and how to “deal” with the “addicts”. I AM sorry to have to bear this incident but, it happened REAL close to home. It’ll happen again and aga………….and ag…….and………..

  6. HJ at 4:40 pm

    I’m wondering if anyone here could help me better understand my situation. I tend not to think of myself as someone who has difficulty hearing, but it’s just that I’ve had troubles for so long that it just is.

    My question requires some background, I think:

    As a child, I had a speech impediment and went through speech therapy. I also had very, very severe allergies, and I would get hives inside of my ears (talk about miserable!) and my ear canals feel like they swell. My pediatrician even said that it wouldn’t be a bad idea for me to learn sign language (because of my allergies). I lived in a small town so resources were limited and my parents’ financial resources were limited. I learned my name… but… I think the lessons were stopped.

    So, literally, it’s just… how it is.

    As an adult, I run into difficulties at meetings. I described this to a psychologist once. I HEAR, but sounds kind of run together. I’m busy mentally making sense of what I’ve heard and the conversation has moved on. I used to take notes for meetings but was horribly embarrassed. I’d omit things I couldn’t make sense of, and I would MISS that something was a joke, because it was said deadpan, and I was too busy trying to make SENSE of what I was hearing to perceive the spirit in which it was said.

    So, the psychologist said it sounded like I had an auditory processing disorder. I wonder if I do. I am sure I have hearing loss (as well?). I have eustachian tube disorder and my troubles are terrible during ragweed season when I can feel discomfort in my ears, but this “hearing loss” seems to be year-round now and I find myself wondering if I may have an auditory processing disorder.

    Is anyone familiar with this? If so, are there parts of my experience that sound like auditory processing disorder? Are there different types of auditory processing disorders and is there somewhere I could learn about it?

    Lots of questions, but it’s not the type of thing my primary care doctor could help with. Everytime I’ve seen an ENT, it’s been for some other SPECIFIC acute issue so I’d never thought to ask. I worked at an audiologist’s office… before I EVER heard of an auditory processing disorder and when I really wouldn’t have identified as someone with hearing loss (back to “It’s always been this way.”)

    Thanks!

  7. BL at 2:32 pm

    Leah Salby, if you need a wheelchair or other devices, ask your doctor to write you a prescription for them. Medicare pays for things like this.

  8. Cheri Furr at 12:02 pm

    I am truly sorry for others who have made comments here about their own traumatic injuries and lack of proper care. I am inspired and amazed, though, by your remarkable story. No one should have to endure what you have. It is very gratifying for me to hear that you have learned to adapt to some of your injuries and their effects. I cannot believe that some doctors are stupid enough to say that someone “looks good.” They, of all people, should know that many illnesses are invisible. That’s the judgment we all expect from our friends and family, who don’t understand at all. But doctors and nurses SHOULD! I have had CRPS for 17 years. Most of my neighbors and friends have just disappeared from my life. I know a lot of them don’t believe or try to understand that CRPS is a serious, very painful disease. I am lucky enough to only have it from my right hipbone down through the joint and inner right leg and foot. I suffer from horrible brain fog, though, and diabetes. I’m sure it’s a combination of the disease, my medication and my age. I called my sister to tell her about a movie I had just seen. She exclaimed, exasperated, “Don’t you even remember I just took you to see thar movie last year when I was there?!!” Obviously I didn’t. I can barely remember what my husband told me five minutes ago! It kills me that the next step is for them to say “Don’t you remember this part?” Someone can give you a hundred hints or reminders, but if you can’t remember, then you just can’t. Five more hints won’t help us. Don’t they understand we are embarrassed and exasperated more with OURSELVES than they are with us? I’d love to remember that I remembered their name, how old their children are, or even the instructions a doctor just gave me. But I can’t. It has to be written down, and I too rely on a lot of help from my smart phone. Thank God we have THEM, and at least they don’t judge us! The other people in the chronic pain community are the only ones that truly understand and empathize, as I do with you. You have given me hope that I can be positive about my life if you can, after all that you have been through.

  9. Kathy C at 11:44 am

    Suzzanne,
    You are an amazing woman, a real Survivor. The Hearing Impaired issue is one of these things we kind of though we had an explanation for, and also assumed that “Science” had improved the perceptions and understanding of how it affects people. I found that was not the case.
    My Partner is a Vietnam Veteran, before we got together, he developed diabetes, and went to the VA for treatment. He had gotten used to faking it with his hearing, and mostly he can get away with it, unless there is any kind of background noise. As his hearing got worse, I read that one in five men his age have problems,and that number climbs with Diabetes, Age, and Military Service.
    He got treatment from the VA for the Diabetes, yet something was off. He appeared to miss some some key components. He was also in denial, about the hearing loss, he was “getting by,” people especially men avoid rather than deal with health issues, as if what you don’t know can’t hurt you. I think that many “Healthcare” Providers including the VA and Clinics that deal mostly with low income people use this combination of denial and fear to essentially deny care, give patients the “Bums Rush” so they get them out quickly, while keeping up the appearance of providing healthcare. The problem they sought care for is ignored, while the previous issue is the only one they acknowledge.
    For example he was a Diabetes patient, so they have a Checklist for that Condition, they don’t even acknowledge that he can’t hear well enough to follow the instructions. They ignore it and continue the Diabetes routine. They rely on the patients embarrassment, denial and even procrastination, to avoid anything comprehensive. This is beyond hearing loss, i have seen it with everything from cognitive issues, heart conditions, to cancer.
    I even started accompanying him to appointments and somehow, at each one the hearing loss was ignored or avoided, he seemed to be embarrassed to even bring it up. After several of these “Appointments” we walked out of the Clinic realizing hey had never answered the question, they had deflected it, or changed the subject.
    As time passed by and he waited for another appointment, the hearing loss got worse, I had no idea at the time that as this postponement meant that he was now unable to process language the same as a hearing person. He made assumptions that many people do. Things like if it was really a problem the Doctor would have mentioned it. Over the 3 years it took to finally get a hearing test, his faking it led to even more problems.

    Finally with his Physician as we did the diabetes checklist it was fairly obvious he was having difficulty even hearing the questions, as I essentially repeated the questions the Doctor asked him, louder when he did not hear it the first time. This Doctor ignored the hearing loss, even though it was really obvious. Previously they had set him in a room with a TV for “Diabetes Education.” he could not hear the presentation, and the difficulty even asking for them to increase the volume was too embarrassing for him. He was utterly incapable of knowing what he was missing.
    After so many of these bums rush appointments, I told him this time we are getting a hearing test. I did not want to embarrass him or put him on the spot, which is why we were unable to get the test for years. There was now way to subtly ask for the test. The time I was determined to get the referral or schedule it. The Doctor changed the subject 3 times. He had no intention of acknowledging the problem or answering the question. There has got to be some kind of reverse incentive, where they have a time constraint or they are not supposed to provide a referral. They use the same technique to avoid pain issues too.
    Due to this postponement, we still have not gotten an appointment with an Audiologist. I had to write my Congressman to get the Hearing Aids, yet they sit in a drawer. The hearing loss went undiagnosed for long enough to make the Hearing Aids virtually useless. The Congressman was very proud of himself of providing the hearing Aids, he did not bother to follow up. One of the PR people at the VA Clinic made it sound as if this fixed the problem. It is too late now, since they never followed up with he Audiologist, and they put this off for at least 4 Years, he is on his own. Incapable of understanding what he can’t hear.
    Often when we discuss the pain issues, and we realize how much obstruction there is to treatment, we know that there are a lot of issues there. They obfuscated pain issues, and Physician are afraid to even diagnose pain conditions. It isn’t just pain, they do this with a lot of other conditions too. The hearing loss should be a no brainer, yet the Doctors pretended there was no problem and made it worse. One in Five men his age have a problem, yet they don’t screen for it. This make me wonder how many returning injured veterans have hearing loss.
    I used to spend a lot of time around Seniors, who had hearing issues. The problems with interpretation of speech seemed obvious, yet their Physicians didn’t bother to address the problem. One woman in her 70’s would interpret things in a very odd way, inserting her own words into a conversion. Often she would have a rather pornographic interpretation of a simple statement. I would respond with “What kind of a woman do you think I am” and we would laugh as I explained what I had really said. These situations were humorous, but they aren’t always.
    My partner was arrested essentially because he did no hear a Police officer. The police officer lied and claimed he had “Confessed” to seven felonies. He could not even hear the lawyer or explain the situation. This went to Trial, and I was a Witness. The look of disgust on the Juries face was intense as i was on the Stand. The DA had avoided speaking to me until 5 minutes before the trial. I almost felt sorry for the DA as he tried a Perry Mason ambush in Court. A Mentally Disturbed woman had made a false allegation about him. This is where hearing loss can lead. It is so frustrating, because he doesn’t know what he can’t hear. The VA dropped the ball. It is to late to fix this now. 4 or 5 years ago, we could have done something with the help of an Audiologist.
    When we are in public like a restaurant or wherever I have to repeat questions for him. Often we get the Dirty Looks, in situations. It breaks my heart sometimes. He used to be an Electrical Contractor, but he hearing loss has made one of the most important part of the Job, communicating with clients nearly impossible. His Mother passed away a couple of years ago due to Alzheimer’s. One of the first first indicators was her refusal to wear her hearing aids. She went further and further into her own world, she stopped engaging with her family, and everything around her. She would watch a movie with no sound, and never say anything. The two conditions fed each other, hearing Loss, and Alzheimers. The hearing loss and isolation, inability to communicate put her in her own world for years.
    I still wonder how no one picked up on it. There seems to be a correlation with this isolation, and inability to participate in a conversation. Researchers have described this, and according to research there is a connection, yet Physicians are oblivious. He now misses out on so much. It is difficult to navigate social events, so we don’t go anymore. Sometimes he will misinterpret part of conversation, and I find myself covering for him. There are no “Resources” no where to turn for how to navigate this. I am on my own dealing with this. He appears to be disinterested or apathetic. Just like the Pain debacle, this is one more area where Science and Medicine have failed us. There are times when I have to yell, raise my voice to explain things. A movie plot or what condiment he wants for his dinner. His family is in denial and to shy to bring it up. His former friends thought it was rude to mention any of this. Worst of all his Physicians used his denial to avoid addressing this when it would have helped. there are a lot of things that are just too difficult to do anymore. It is exhausting sometimes to communicate with him. Sometime I have him repeat things back to me, to be sure he understands. We get those looks too, when we are out in public. Ignorant people who this in a rude way.
    I can’t begin to imagine the struggles you have faced. The pain can be all consuming but the hearing loss, is isolating too. I get angry sometimes when people treat my partner as if he is stupid because he can’t hear well. Our Society has become a dark and ugly place where our issues are used against us, a chink in our Armour, that they seek to exploit.

  10. Jean Price at 11:30 am

    Cherylmarie….you’re so rght, it’s hard not to compare sometimes! I think we often do this as a “backdoor” way to count our blessings! Plus, we KNOW how hard it is for us…and can’t bear to think of added pain and struggles! Yet, it doesn’t really make sense to do this….because we are each individuals with different lives and different situations…and different tolerances. Plus, there is a point that pain is just PAIN…like when we talk about how hot it is outside.. over a certain temperature, it’s all the same! We’re all miserable!!

    A wise and dear friend once told me “Pain is not a competition…if it’s yours, then it’s the worst ever!” And I’ve found there is truth in this, having seen it from both sides…from those I felt had it “worse” than I…and from those who told me they “shouldn’t” complain to me after all I’ve been through! I agree it seems Susanne has had way more than her share of struggles…yet if you’re reading this, my guess is you have ALSO carried a big load and been over burdened with pain in life. I suppose in the end, we can truthfully just say the same we are comforted by when others say it to us…”I can’t imagine how hard this is for you!!” And that says a lot, especially coming from someone who also lives with pain.

  11. Marsha Reiner at 9:37 am

    I am so sorry for everything you have gone through. When I start feeling sorry for myself, I read about someone who is much worse than I am. I pray that you get some kind of relief. Many gentle hugs…

  12. Deaf Gator at 8:39 am

    Please be advised that the term, “hearing impaired” is unacceptable. Here is the explanation:

    The term “Hearing Impaired” is a technically accurate term much preferred by hearing people, largely because they view it as politically correct. In the mainstream society, to boldly state one’s disability (e.g., deaf, blind, etc.) is somewhat rude and impolite. To their way of thinking, it is far better to soften the harsh reality by using the word “impaired” along with “visual”, “hearing”, and so on. “Hearing-impaired” is a well-meaning word that is much-resented by deaf and hard of hearing people. This term was popular in the 70s and 80s, however, now is used mostly by doctors, audiologists and other people who are mainly interested in our ears “not working.”

    While it’s true that their hearing is not perfect, that doesn’t make them impaired as people. Most would prefer to be called Deaf, Hard of Hearing or deaf when the need arises to refer to their hearing status, but not as a primary way to identify them as people (where their hearing status is not significant).

    We are deaf, and not people with impairments (obstacles) in life!

    Hope that you and your people respect by refusing to use the outdated and offensive term. Hearing loss is more acceptable for everyone who is not just deaf.

    http://nad.org/issues/american-sign-language/community-and-culture-faq

  13. HJ at 8:35 am

    I deal with grief associated with my losses. When I saw “losses,” I mean: things I can’t do anymore that I used to do or enjoy, situations that present me with challenges that I feel I used to be able to overcome easily, problems with thinking or memory, financial challenges associated with my health… geez, even my ability to have a SIMPLE relationship with a doctor (I show up, have no issues, nothing complex to discuss and that’s IT — those days are long gone and I now have to decide what’s most important for me to discuss with the doctor).

    I think the hardest losses are the cognitive ones, because they’re so linked to my identity and sense of self!

    When I think about it, I suppose there’s this picture of this “ideal self” that I just don’t live up to anymore. I think healthy people have the same problem but with someone who’s ill… I think the problem is amplified by our losses. In my mind, this “ideal self” doesn’t forget things… she doesn’t make mistakes… she has a perfectly clean living space… keeps in contact with ALL her friends… is the perfect (insert role/expectation… mother, sister, friend…)

    I don’t know how to allow myself the “room” to account for the effects that aging, daily demands, stress… whatever normal people face over time that shapes their identities and abilities. That “ideal” person is someone who’s probably in her 20’s (when I got sick). As I get older, my expectations of myself still are “stuck” by this frozen image of the “perfect me” who “never got sick” and “never gets old.” Talk about unrealistic expectations!

    I have to learn to be gentle with myself and allow myself to grieve, too. These losses are real, and my emotions are valid.

  14. Cherylmarie at 3:36 am

    Your amazing . I felt like such a wimp! When I read your story and compared it to mine. I know we are not supposed to compare struggles, my pain and challenges are different from yours but you been through so much and have a positive attitude. I really admire you!!