I am what I am
Glenda Froyland
Glenda became deaf due to Meniere's disease. The attacks left her ill and debilitated, but worse they caused almost total hearing loss in both ears. She became isolated and frustrated. This is the story of her journey from the world of hearing into the isolation of deafness and back. Since receiving Cochlear implants she has much to be thankful for.
mailto: iwfroy@mackay.net.auThe cause of my deafness was Meniere's disease. While Mum says I had strange dizzy turns in my pre-teenage years, I definitely remember the first attack being in 1981 when I was 23. Over the next few years these attacks became frequent until I experienced them, on average, at least 4 times a week.
During an attack I could not help myself.
My condition had become chronic. Prior to an attack I noticed Tinnitus increased and I would experience quick eye movements or flickers. Meniere's attacks confined me to bed. They were characterized by intense vertigo, loss and distortion of hearing, dizziness, vomiting and severe sweats. They often occurred at night during sleep. Each time they lasted a few hours and sometimes longer and during an attack I could not help myself. If I went to the bathroom I stayed there for a couple of hours; on the floor with a bucket, until it subsided enough for me to 'stagger' back to bed. All sense of orientation went and I became confused and unable to speak. Any movement of my head increased the vertigo, and therefore the nausea, so I tried to keep very still. After the initial vertigo and vomiting settled I would need to sleep before I could again speak, move my head or walk around.
In the early stages of the disease my hearing was affected but when an attack passed it returned to normal. However, as the attacks became more frequent my hearing worsened and permanent hearing loss was evident. Initially only my right side was affected, but later this became bilateral.
My disease was confirmed as Menieres by a test which required my ear drum to be pierced and hooked up to a machine which did 'whatever'. I was put on Stemitil and fluid tablets as well as a strict salt free diet. This meant I had to cook all my own food including bread as salt is in almost everything. I was closely monitored by a specialist in Brisbane with regular check ups but when he passed away, I went to another. After he did all the necessary tests AGAIN he agreed I did have Menieres and at the time said I was the sickest person from this disease he had ever seen, especially when he took into consideration my age. However, this specialist was my saviour because his treatment gave me back some quality of life.
At this stage I knew I had bilateral Menieres but there was no test available to prove which ear was making me sick the most. In December 1992 my specialist performed a right ear Endolymphatic Sac operation. Since the ultimate risk of this procedure is total deafness, he chose my right ear because the hearing had gone completely. But alas, the operation was not successful - I remained very sick.
In March 1993 he tried again this time on my left ear. By now I was so sick I didn't care about the risk of losing my only hearing. I just wanted relief. But still no success.
I knew I was likely to be deaf for the rest of my life.
In October 1993 a Cochleotomy was performed on my right ear. At last success. This operation gave me back some quality of life, but I always knew these procedures were only killing the symptoms and the disease was now 'silently' aggressive within me. I knew it was likely I would remain profoundly deaf in both ears for the rest of my life.
During this period I became a patient of Queensland Hearing and subsequently was fitted with my first hearing aid. Because I was already profoundly deaf in my right ear it was only viable to wear one in my left ear. Over the next 10 years or so I referred to my hearing aid as one of my most loyal friends. I was so dependent on it and it rarely let me down. Sadly, this companionship was not to last, faltering as my hearing deteriorated and it became evident it was no longer giving me any benefit.
As the hearing in my left ear slowly degenerated over many years it allowed me to adjust to hearing loss without realising it. In January 2006 at my regular check-up in Brisbane I had only, in layman's terms, 20% hearing left. I was really struggling in the hearing world by this stage and was advised it was time for me to change specialists. He recommended I go to someone who dealt with Cochlear Implants so I could be monitored for suitability. By March 2006, only two months later, it was obvious I needed to make this appointment urgently as my residual hearing was deteriorating rapidly.
I was struggling.
By now I was desperate. There were many things I could no longer enjoy or do. Although I could hear when someone spoke it was merely a garbled sound. I was struggling to recognise a word here or a part of a word there; continually lip-reading, and watching body language to try to understand speech.
to be changed. Work colleagues took my phone calls and wrote messages to me. If the students, teachers or colleagues did not speak clearly and directly to me with good articulation, I could not communicate with them and this meant I couldn't help them. Working in the classrooms was extremely difficult due to the noisy environment. If the lesson subject was unfamiliar to me, I couldn't hear enough to support the students. I no longer attended workplace meetings but my colleagues kept me informed of matters I needed to know about. When shopping, I continually had to explain to people I had a hearing disability so that I didn't come across as a very rude, ignorant person.I became increasingly dependent on my husband.
I was silently grieving and felt a huge burden on my family. Living was making me tired.
At home I had to change my routines. I could not leave the bathroom when the taps were running in case I got side-tracked and forgot I had turned them on. There was no point in setting the oven timer for I could not hear it when it buzzed. It was difficult to talk with loved ones because I could not follow family conversations and be 'part' of the unit. Increasingly, I felt isolated and had become very dependent on my husband. He filled me in on topics he knew I would be interested in. When we went out he made sure I had support when ordering meals or getting served. At the end of each day I was tired out from struggling to concentrate; being in 'alert' mode all day. I came home from work absolutely exhausted. During this period I was silently grieving for my independence and feeling a huge burden on my family.
In May 2006 my hearing once again was tested prior to an appointment with my new ENT surgeon, one who specialized in Cochlear Implants. The results showed that since January my hearing had dropped a further 20dB. My speech discrimination had dropped from 82% to only 37% because my hearing had dropped to less than 10%. I could no longer hear consonants but could hear vowels and distinguish between short and long vowel sounds. I could also tell how many syllables there were in a given word. I was getting by with this little bit of hearing coupled with watching body language and gestures and very competent lip-reading.
When I arrived at my surgeon for the initial appointment I was greeted with a very cheery, "You are deaf!" as he had already examined my results from Queensland Hearing. Upon confirmation that the results of my CT scan were excellent for a Cochlear Implant, the ball quickly started rolling.
I underwent the other necessary assessments for a Cochlear Implant throughout June and July it was confirmed I was a successful candidate. Despite the fact that a Cochlear Implant would destroy any residual hearing, we decided my better left ear should be implanted because my right ear had been profoundly deaf for over 20 years and this could affect the outcome of a Cochlear Implant.
I had the operation on 17th August 2006. The operation itself went very well and I was discharged from hospital the next day. However, after a few days the pain and discomfort increased. By the time the stitches were removed my whole head was painful with stabbing pains piercing into the left side and down my neck. This was alarming because I had expected only minor discomfort. Within the next couple of days the nerves on the left side of my face were visibly affected so I went straight to my local GP. I was given the required scripts to treat the symptoms and am pleased to report that over the next month or so my nerves returned to normal although the stabbing pain only subsided gradually.
My husband kicked his right leg in the air to get my attention.
Living in a world of silence during this period wasn't a great burden for me. To get my attention Ian my husband kicked his right leg up in the air. We had to have a real chuckle about this. No matter what obstacles, there was always a way to communicate if we persisted. I spent many hours communicating to family and friends via email and MSN.
31st August 2006 was switch-on day. I was excited by the prospect of hearing again mixed with feelings of anxiousness and nervousness about what was ahead. After reading all the literature I didn't know if I was going to hear anything that you would classify as speech or just a heap of garbled noises. Ian, our two daughters and my parents came to support me through this time.
Ian came in with me for the initial mapping. All of the 22 electrodes were mapped on day one and was a whole new process to get accustomed to. Once the electrodes were mapped my parents and daughters joined us for switch-on. Was I going to hear sounds like Mickey Mouse or Daffy Duck speaking to me? I was still in quite a bit of pain and was also secretly questioning whether I was ready for this next part of my journey.
Glenda, with Mischelle, visiting Cochlear Headquarters
Switch on proved SO exciting. I will always remember. It was absolutely amazing to hear voices again and to be able to understand speech. I could understand my audiologist speaking to me straight away and it sounded quite normal. But then I spoke myself. Surely I didn't sound that bad was all I could think. After the audiologist made a few adjustments the sound of my own speech improved. But by nightfall my hearing had dropped off fast and once again had become quite useless. I could not wait for day two mapping. Over the next couple of months I travelled to Brisbane for mapping sessions, initially on a weekly basis dropping off to fortnightly.
Many changes were happening with my lifestyle and day to day living. I clearly remember the first time I went to the bathroom after switch on and I came out to tell my husband: "You know running water makes a psssssssss sound!" I could now understand someone talking to me from behind without lip reading. I was constantly asking people around me: "What is that noise?" After a few weeks I started using the phone. Birds! I thought I was hearing ALL birds before the implant but I soon realised I was only hearing certain pitched birds. Because computers came in while I was deaf I didn't know they made sounds and I now heard the keyboard tap, tap, tap as I typed.
One evening I was working on the computer, while Ian watched TV about 5 metres away from me. I heard him make a rude noise. I immediately turned to him and said, "Excuse you!" He got the biggest shock exclaiming, "Did you hear that!" realising he now had to be more careful of his p's and q's. I also started enjoying some TV shows which was really wonderful.
I remember thinking the one thing I definitely would not miss was Ian's new way of getting my attention saying: "Can you hear me?" before he started speaking. He was so accustomed to having a deaf wife but this was really annoying.
Because I wasn't getting any feedback when I was deaf I used to speak very loudly, but now I was speaking softly and everyone commented on it.
Was I being greedy wanting a second implant?
My work environment at the school is very noisy, and speech comes from all directions around me in the classroom. My audiologist explained all the pros and cons of being a bi-lateral Cochlear Implant recipient. After consideration, and the required tests, I was approved for a bi-lateral implant. This was a difficult decision and I have to admit I had reservations. Since my right ear had been profoundly deaf for over twenty years I knew that rehabilitation would probably be a long, windy road. But I also hoped that eventually I would always have hearing if one processor malfunctioned. I also questioned: "Was I being greedy wanting a second implant when I now had hearing again?"
Decision final! I came to the conclusion I had the strength to handle this so on the 24th May 2007 I had my right ear implanted. Everything went to plan and I am very pleased I had next to NO pain after this operation. Hooray! With my head once again bandaged up I headed home.
June 7th 2007 was switch on day and along with my husband, my sister and brother-in-law also shared this wonderful day with me.
To my amazement, and that of the CI team, I was able to understand speech immediately. This is truly unbelievable taking into account, as I have said before, that I was profoundly deaf in this ear for over 20 years. This ear was no longer just a place to put earrings on. Initially all voices sounded very girlish and at a higher pitch than my first implant. Men loved it when I told them this!
At the completion of my 3 months of mapping my hearing stabilised. I had hearing tests to ascertain the success, of firstly the new right implant by itself, and then bi-lateral. Within a VERY noisy testing environment I hear approximately 30% better by being bi-lateral.
Ian says I am a new woman. It is so wonderful to have my independence back. I am so thankful for many things over the past year.
Recently we attended a family wedding and it was one of the most enjoyable weekends I can remember in a long time. With the band playing in the background at the reception I put my processors on the auto-sensitivity program. I could hear with far more ease than most of the 'normal' hearing people. Some noisy environments can still be difficult to hear in but my ability is far superior compared to only one implant.
Life in general is wonderful.
Life in general is wonderful at work, home and socially. I am an independent person once again actively participating in life with very few challenges. Sounds are clearer and with more depth. It is amazing to hear from all directions and know where the sound comes from. I hear people call me from quite a distance even if they're behind me. WOW! I am starting to appreciate music once again although this is only songs and tunes I was familiar with before losing my hearing. Country and Western music is the most enjoyable. I no longer come home fatigued after a day out at work or socially.
Many people over the years, and still to this day, say: "But you don't look deaf." This comment always amuses me. What does a deaf person look like? If they said, you don't sound like a deaf person I would understand it because I was post-lingually deafened and my speech is good.
I have not got a clue what you are saying but I hope this smile is fitting for the situation
There are so many people that I must give thanks to - my GP Dr John Mackintosh, my surgeon Dr Bell-Allen; my audiologist Karen Pedley; the CI team within Queensland Hearing (now called Attune); my family and friends and work colleagues just to name a few, but above all, I give thanks everyday to God who is in control of all things, and last but not least my husband. Ian has been the most patient, supportive and caring husband I could have wished for. For a few years I was so dependent on him. Ian got to really understand my polite, deaf smile - in other words my face was saying 'I have not got a clue what you are saying but I hope this smile is fitting for the situation'. When we returned home from gatherings with family and friends he filled me in on topics he believed I would want to know.
It's been said that when people lose their sight, their other senses become sharper, adapting to the loss of the one sense by expanding others. That's what has happened in my life. My hearing loss has helped me develop in ways I'm sure I wouldn't have and has forced me to stretch and strengthen 'muscles' I wouldn't necessarily have exercised. My lip-reading skills were very well developed and that is what I relied on for communication (already this skill is declining now that I don't rely on it as much). I understand I still have certain limitations as I am still completely deaf when I am not wearing the processors although I am determined not to allow this to dictate to me what I can and can't do.
It is because of my life experiences that I am ecstatic to be part of the Cochlear Awareness Network. I look forward to the challenges and rewards I anticipate this venture will generate as I spread the good news educating the wider community at various speaking engagements about Cochlear Implants, supporting implant recipients and those considering an implant while sharing my personal experience. Visiting the Cochlear headquarters recently for training has made me truly appreciate and understand the hours of labour and expertise that goes into this superior Australian invention. It was one of those days and experiences when you go home and talk 'ten to the dozen' because you are just on so much of a high. One never knows what doors will be opened next.
"I am what I am ……… and I consider myself a very blessed person."
Glenda is 50 years young, married to Ian and has three grown up children. She works as a teacher aide at a State High School splitting her time between the office and classroom where she provides support for learning within the Special Education Unit. Glenda and Ian are also primary producers of sugar cane. Glenda can be contacted via email and is available as a guest speaker to clubs and groups.
Other stories by Glenda
- A life less ordinary. Walderston & Valley Advertiser Aug-08
- One in six Australians live in Silence. Mackay & Serena Mid-week Aug-08
- Glenda's Story Platypus Press Aug-08