Out of the Silence
Fiona was born hearing to a hearing mother and deaf father. She never identified with the Deaf Community and never expected to lose her own hearing. Fiona tells about her struggle into deafness and how she nearly lost herself in the process.
This is her story.
Fiona Ali 2009
Download a copy of Fiona's story
Download a copy of Fiona's story (A4) Warning: This is a large file.
This is a story of hearing loss. How should the story begin? In the beginning or once upon a time.... Well this is no fairy tale but there is a very happy ending - so far.
In order to fully understand the essence of this story it is necessary to delve into the past. I was born in Scotland on the 14th November 1969, the first child to my mother, Elizabeth, and father, Albert. My early childhood was spent in my parents' home town of Alexandria which is not far from the city of Glasgow.
When I was four years old our family relocated north to Inverness, in the Highlands. My sister Aileen was two and our brother David was born a year later. I remember moving to our new house and it was very exciting. I still think of Inverness as my home town even though I now live about as far away as you can get from there, on the other side of the world in Dunedin, NZ!!
My life at this time consisted of growing up, going to school, having friends, all the essential ingredients for a happy childhood. We were a happy family. At home I played out the back of our house, rode my bike, and together with all the others kids in the neighbourhood, ran around and caused mischief no doubt!! Holidays and weekends were spent at our caravan in Rosemarkie, a small village by the beach, about 20km from Inverness.
I was a very normal, ordinary and content wee girl. There was only one thing that set our family apart; my father was deaf. Within the family Dad's hearing loss always seemed to be something quite separate. When I look back I realise we were never really part of that and it surprises me, that although we had a profoundly deaf father, we never learned sign language.
He was a social worker for the Deaf and quite involved in the Deaf community but it was his work and generally we were not included. However, on occasion I did spend some time with him while he was in the Deaf community, allowing me a brief insight to the Deaf world - a culture quite separate from the hearing world, the world which I would desperately try to cling on to in years to come.
To us, my dad's deafness was just his job.
I guess being around Dad as a deaf person, but never totally embracing it, shaped the way I thought of myself in later years. As I moved into my teenage years, things changed with my Dad leaving. Mum was totally devastated and us kids bewildered as to what went wrong. Those years were not the best and changed the relationships between us all forever. My high school years were full of teenage angst and rebellion (just ask my poor mother!!). Throughout this time I cannot recall experiencing any hearing difficulties so when the deterioration began I was somewhat surprised.
I met my husband, Shokit, at my best friends' 18th birthday party. He had come with my friend's brother. I was 17 years old and he was 21, an older man!! His name originates in Pakistan and with my youthful ignorance, when we were introduced, I managed to totally embarrass myself (the culprit being one too many glasses of cider and absolutely nothing to do with any hearing loss!!). Upon being told his name across a crowded room, I asked repeatedly, (or should I say shouted) "What's your real name?" He sat there politely, not getting cross but no doubt thinking, "who is this crazy woman!!??"
An unfortunate start to our relationship which could have destroyed any chance of getting together. However it did give me an excuse to approach him later to apologise. He had been glancing across the room in my direction and the butterflies were doing somersaults in my stomach!!
Immediately after the party we started dating. We were young and in love, full of enthusiasm, intensity and adoration for each other. An every day, normal couple. Shokit returned to Aberdeen where he was at university and we would talk on the phone for hours and we always did the bit at the end of the call...."you hang up....no you hang up......" never wanting the moment to end and having to finish the call. (I'm sure we must have talked complete drivel.)
As you get older you and look back to your youth with that touch of dreamy nostalgia, it's easy to desire that time again to be young and carefree (and I'm not saying I wouldn't!!). When I lost the ability to use the telephone this is what I remembered I would find myself longing to be able to make those calls again.
Leaving Inverness to attend college in Edinburgh in 1988 was my first taste of independence. Still I had no real noticeable signs of hearing loss though the deterioration had quietly begun without my knowledge.
Student life was a lot of fun (with a bit of study thrown in and an overdraft!!). The freedom of being away from home for the first time was scary and exhilarating, I was a big girl now!! Just as I was settling into this new life I began to realise all was not quite right. My college friends and I would be out in a busy bar, coffee shop or student canteen and I would miss bits of the conversation or answer questions wrongly. Occasionally I would lose track in lectures (no, not because I'd fallen asleep!!) and I found myself asking people to repeat themselves more and more often.
I clearly remember being out with a group of friends and someone asked me a question. Shokit was with me and I replied "no we're not engaged". Everyone just looked at me as if to say "what is she talking about??!!" I had been asked what would I like to drink?? The embarrassment was huge.
Embarrassing incidents became more frequent.
Incidents like this became more and more frequent. It was mainly in social settings with groups of people and rather than worrying too much I put it down to background noise. Things like telephone conversations were manageable but I still made mistakes. It may sound contradictory but it didn't really register that I wasn't hearing properly. I guess I thought I was having a few too many "blond moments" you know, getting a bit ditzy from time to time (or at least this is what I kidded myself).
The duration of my college course was three years and over that period there was a decrease in my hearing, small it may have been but not insignificant. I was classified as having a mild hearing loss which was annoying but didn't really impede me to a great extent. Or at least I tried to live my life without letting it be too much of a hindrance and I made it through college!!
I graduated with a diploma in Hotel Catering and Institutional Management - in hindsight not the wisest of career paths to have chosen. I had not really considered the notion that my hearing could or would decrease any further.
My first job after college was brilliant and even came with a title! Junior Assistant Manager no less!! Translation - poncing around the hotel in a suit with a bunch of keys! Well, it was a wee bit more than that. It was a very busy 75 bedroom Hotel in the Highlands of Scotland. I lived in the staff quarters which was interesting because I was the only female!! My door was firmly locked at night and I discovered that men can be truly disgusting creatures in the bathroom!! I managed to convince the housekeeping department to allow me my own bathroom on one of the floors, on the promise that I would keep it clean and not tell the blokes.
Initially, learning the ropes was a lot of fun. I had to work in all the departments, basically wherever and whenever I was needed. I assisted organising and hosting a couple of weddings and thought I'd found my calling! I would become a Functions Manager and host amazing and wonderful events!! I loved the atmosphere of the hotel - the camaraderie among the staff. We would often sit down together after service for a drink and a smoke.
Running the restaurant was (bl**dy) hard work but gave me a lot of satisfaction. It was here an incident really signalled the onset of the downward spiral and eventual extinction of my hearing. A member of staff was acting up and p**sed off at me about the roster or something. She knew I couldn't hear that well especially from behind and began calling me names while standing at my back. I only realised when one of the girls in front of me couldn't hold her laughter in and later confessed it had been happening for a while. It may sound trivial but I was gutted. I knew with certainty that my hearing was failing me. The thought of being an object of ridicule was devastating. It could have been because they didn't like me much but the fact of the matter is if my hearing was 100% the staff would not have been able to take advantage in the way they did. I had done the very same thing to my poor old Dad! Was this karma.... When I was a teenager my friends and I would think it positively hilarious when in the car with my Dad we could get away with all the swear words we could think of and he wouldn't blink an eye (unless of course he could see us in the mirror because he is an excellent lip reader!!! SORRY DAD)!
Eventually, it became too difficult for me to function effectively in the hotel environment. Simple tasks like taking an order in the restaurant required extra effort and led to much embarrassment over mistaken orders! No one wants fish when they've ordered steak!! When the telephone rang I would wait and wait for someone else to answer it, which is not possible when you are the only one covering reception at 11 o'clock at night!!! To cut a long story short, I decided to leave.
I moved to the south of England where Shokit was working. I took a job as Manager of a garden centre café thinking the quieter setting would be an improvement on the busy, noisy hotel. Well I was wrong. The same mistakes occurred and more! I had to stop my denial and admit to myself I couldn't do this anymore - there was something wrong with me! I discovered I could not refer to myself as "deaf". I was NOT a deaf person. For me to describe myself as being deaf conjured up all the wrong images. Something in my head would just not admit it.
Finally, after a fair bit of soul searching, I resigned myself to the fact I would not be working in the hospitality industry again (at management level) and knew it was time for a change of direction. But what? The logical step was to return to Inverness and contemplate my next move.
I had to change jobs.
I would describe myself as a "people person" so I set about trying to find a job which would suit this description. I joined the team at the resource centre in a residential hospital in Inverness catering for adults with intellectual disabilities. Here I found a job which was extremely fulfilling. Much of the communication with the ladies and gentlemen who lived in the unit was non-verbal. Many of them had very little spoken language and communicated through signs and gestures, eye contact and touch. This suited me down to the ground. I developed a close relationship with the residents and still think of them often.
The medical professionals I worked with, nurses and occupational therapists, were understanding of my hearing difficulties and it was never an issue. I could have quite happily stayed working here forever but life has a way of changing direction without asking you first. Call it what you like: fate, destiny or divine intervention!
Shokit and I had been together for seven years (with a few ups and downs but that's a whole other story!!!) We were married in November, 1993. As the actual day grew closer there were all the customary checks to ensure there were no hitches. I did not have pre-wedding jitters in the usual sense but was getting somewhat panicky about fluffing my lines! As the registrar carried out the service asking me to repeat after her I could hardly breathe because I was concentrating so hard on making sure I heard and correctly repeated what she said. Once it was all over I let out a huge sigh of relief, I had not duffed it up!!! (or agreed to obey or anything like that!!)
We settled in to married life. Our first baby, a beautiful girl Yasmin was born in March 1994. Now I had my own little family and we were blissfully happy. This is such as amazing time in a person's life. To experience birth and knowing you have created this beautiful little creature. My marriage was strong and we grew so close with the arrival of Yasmin. She was a perfect baby with big, big brown eyes and a smile that totally melted her father's heart.
We moved back to England where Shokit was still working and lived in a small village in a lovely rented cottage. He left at 6 in the morning and returned at 6pm which left me at home with the baby all day on my own. As any first time mum knows this can be an extremely lonely time. After all the euphoria and the high of the birth, all the attention and excitement that a new baby creates then suddenly I came crashing back down to earth with a huge thud (usually around 3 o'clock in the morning!!)
My feelings of isolation were compounded by my decreasing hearing. Telephone conversations were kept short and sweet but I would try to avoid them or pass it on to Shokit. Meeting new people and striking up conversation was difficult, though not impossible. At this stage, audiologically speaking, I still had a relatively minor hearing loss. It wasn't all doom and gloom (yet!!).I could simply turn the volume up on the TV or the phone. I found I was lipreading, although not consciously, my brain was doing it all by itself out of necessity.
Being at home with a small baby was easy. I could use monitors (which had flashing lights) when she was in the other room and the rest of the time when she was with me I could see what she was up to. It becomes instinctive the bond between mother and child. I seemed to be able to anticipate her next move. I would wake in the night just before she did, and most of the time before Shokit heard her cry too. Though usually he managed to sleep through anyway (a definite case of selective hearing!) some mornings he would exclaim "the baby slept all night!!" NOT!!! I had been up for 3 hours!
When Yasmin was about 8 months old we moved again. It was the nature of Shokit's job as a construction manager, and his company would move him to where the work was. This was likely to be our future and this was not how we wanted to live, shifting about all the time, especially now we had Yasmin so we began to explore different options.
A new life - on the other side of the world
Upon discovering an immigration company and attending seminars we were hooked - this was it! We decided to pack up and head off on a big adventure and move to New Zealand! It was such a romantic notion the three of us venturing out into the world to start a new life - it was very exciting and totally bl**dy terrifying at the same time. Considering neither of us had ever been to New Zealand this decision was either very brave or incredibly foolhardy! But sometimes you just have to bite the bullet, so to speak, and go with what your gut tells you - and mine was saying this would work.
The hardest part was leaving the people; our families and friends. I convinced myself it wasn't too big a deal - it wasn't goodbye forever but I will always feel guilty about leaving my family. It hurts my heart even now that we are so far away but I needed to go live my life with MY family. It did cross my mind briefly "what if my hearing gets worse?" But since we were embarking on this new life I had no time or inclination to worry so simply dismissed it to the back of my mind.
We left London on Valentine's day in 1996 with a lot of excitement and a soupcon of trepidation. Upon our arrival in Auckland Shokit searched for a job and Yasmin and I wandered up and down Queen Street. (I had to test out the kiwi shopping and cafe scene!)
Within a fortnight he had secured a position with a Project Management company who wanted him in Dunedin. Out came the map. "Where's Dunedin?"......."oh, way down there". It was a good job offer so OK we'll go there!
Dunedin is a beautiful place, the Edinburgh of the South! We had no idea of the strong Scottish heritage and connections so felt quite at home immediately. We settled into life with relative ease though once again I was at home all day alone with Yasmin. Only this time it was just me - I did not know another single soul. I would almost pounce on Shokit as he came through the door in the evening! I loved my time with Yasmin but a girl needs adult conversation and coffee!! Not to be defeated I gave myself a kick up the bum and got us out the door going to every play group, play centre and kindy I could find. Yasmin and I started to cultivate friendships (some of which are still going strong today) and Shokit was doing the same at work. It was fun getting to know the Kiwi's, though the accent kind of stumped me for a while! There are a great many similarities between NZ and Britain but also a lot of subtle differences. Certainly in Dunedin we had the added advantage of being Scottish! It was a great starting point for conversation EVERYONE has a granny or auntie or relative of some sort from Scotland!!
We had only been in New Zealand a few months when it occurred to me I seemed to be struggling more than usual. So I had a hearing test and there had been quite a significant drop. Ah bugger it's getting worse!!! I began making so many mistakes on the telephone it was ludicrous I still answered it. I could be having a conversation thinking I was talking to one friend only to discover later that it had been someone completely different. In the end I though "sod this" (I may have used stronger language than that!!) NO more telephone.
Most of us do not realise how much we value something until it is taken away from us. Losing the ability to use the phone was not just losing the simple physical task or convenience of making or receiving calls but more about losing my independence. Shokit had the role of my "social secretary" thrust upon him (whether he liked it or not!) and he did it for many years.
Being a social person I was continually asking him to phone so and so!! I was fortunate in that I had meet some lovely people and if I wanted company or to make arrangements I simply turned up on their doorstep unannounced. They didn't seem to mind too much. Face to face became the only way I could communicate but it was time consuming affording me very little spontaneity.
Enter baby number two, a boy this time, Rahan, born in April 1997. He was such a happy smiling wee guy who was awake ALL the time!! Yasmin was having so much fun being big sister and I was in heaven. Two little people, a very loving husband, living in a great city and we had just bought our first home. This was life! It was full and happy and I kind of forgot about my hearing (or lack of it) for a time, slapping on my brave face...I could cope, it's no big deal.
It could have been a lot worse.
Over the years I have tried to be philosophical about my impairment and attempted to keep it all in perspective, looking at the big picture. It could have been a hell of a lot worse. Up to this time in my life I had succeeded in remaining reasonably positive.
I now had a fax machine which meant I could keep in touch with friends more easily and also make my OWN arrangements with those who also had access to a fax. I would still phone and talk to Mum and the UK family, but it wasn't a conversation - just me blabbering away from my end (they could very well not have been listening just holding the phone with me going blah, blah, blah!!!)
I used the subtitles or captions when watching television. This gave me the words of the dialogue at the bottom of the screen allowing me to follow the content of the program. Unfortunately, in the 90's in NZ, there were only a handful of captioned programs. (This has changed in recent years the service has improved vastly and covers the majority of programs.)
I'm 100% sure I could actually hear Yasmin cry when she was a baby but I cannot say the same for Rahan. Everything became so visual. For example: if I could see he was crying I would think I could hear him too. There were times when Shokit had to alert me to noises the children were making. This did nothing for my state of mind concerning my deafness and my positive attitude began to disappear. I saw my loss as a weakness, a fault. I was a terrible Mum I didn't even know when my baby was crying. I hated myself and yet still could not admit I was on the road to becoming profoundly deaf. I believed I should remain firmly in the hearing world and this set me up for huge disappointment and feelings of failure.
I meet a lot of people through my children and while this was fantastic it was also extremely difficult. I was, by this time relying, to a large degree on lipreading and visual cues. If I had to ask someone to repeat their name more than twice I would then just pretend to get it rather than appear stupid. (Then not know their name for years as I was too embarrassed to ask again!)
I was becoming quite paranoid about the way others saw me or how I perceived they saw me. I did not wish to appear odd or unintelligent yet couldn't say up front "I'm deaf - could you please speak clearly". Why could I not do this?? Why did I feel so embarrassed about something that was no fault of my own?
Life was busy and full with two little people and baby number three made his appearance in May 1999, another boy Kasam.(of course Yasmin was devastated she had longed for a sister!!) Again I was blissfully happy. I was good at this, my maternal instinct just kicked in. Kasam was such a cutie and a very content wee man. This time there is no doubt in my mind I could not hear any baby sounds, much to my distress. I would put my hand on his chest or back and could FEEL the gorgeous little noises a baby makes. However, with three small children to care for, my focus had totally shifted to them and there was little time for introspection. My hearing, or lack of it, simply took a back seat. I carried on as normal trying to be "normal", living in the hearing world and not letting it be an issue, pretending I was no different - in complete denial that anything was wrong or that any action needed to be taken.
In Scotland we had enjoyed going to the movies, something we just didn't do here because:
- Lack of babysitters and
- would be a waste of time since I wouldn't hear it anyway!
Next best thing was to hire a video. I had a caption reader connected to the video recorder but it only worked if the movie had the captions added (not very many did). If not, then we would watch it and pause every 5 minutes for Shokit to fill me in on the plot - the result being it took us a LONG time to watch the movie!!!
In social settings I couldn't really cope and fumbled my way through by lipreading, coupled with a certain amount of guesswork. If I managed to get the first few words of a sentence it was possible to guess the rest - but more often I got it wrong than right.
I was good at hiding my ineptitude and would cover it up by being loud and talking nonsense (still quite good at that, open the mouth and out it all comes!!!). Another coping mechanism was to simply nod in agreement and hope for the best!! No doubt highly ineffective and possibly a bit risky depending who I was talking to!! In many situations I would hide myself behind Shokit. I began to actually physically fear having conversations with people unknown to me. I was so nervous and uptight, my insides churning away like mad. Occasionally, when in conversation with people, if I had been unable to lipread a question and I asked for it to be repeated they would direct it at Shokit (or whoever was with me) instead. This produced feelings of both rage and relief! Relief that the pressure was off - I no longer had to "listen" to the question and provide a relevant answer. The rage came from thinking "HELLO I'm standing right here". My disability was invisible but was I?? If someone told a joke I might manage to lipread the first line. I NEVER got the punch line but would laugh anyway when everyone else did.
In many respects this behaviour sent the wrong message. How then was anyone to know the extent of my hearing loss or just how much I was struggling when it appeared that I was understanding everything?
The deterioration that had begun about 8 years previously had been in phases.
- To begin with speech sounds had started to become unclear. One of the easiest ways to describe this was although I could hear someone was talking I couldn't comprehend. It was as though they were talking in a foreign language. If the volume was increased, rather than help sounds became too distorted.
- Then the clarity and distinction of sounds slowly disappeared. In a group setting I could distinguish individual voices, without looking, but not what they were saying. This ability also disappeared and I could no longer tell who was talking or what they said without looking and lipreading.
- The next phase was any sound that I had left was reduced to an unidentifiable noise.
- Then eventually that disappeared to pretty much no sound at all.
During this time I suffered from Tinnitus, which is noises in the ear or head. The medical profession are still debating the cause but it is likely that in the absence of sound being 'heard' the brain compensates by producing its own. The noises I had were varied. For example; a ringing or low continuous tone; rushing water or howling wind. Sometimes it was quiet, sometimes very loud. Sometimes it lasted for a few minutes but it could also last all day. I trained myself to ignore this which is really all anyone can do.
Daily life was exhausting.
Daily life was exhausting. Caring for children is a demanding job at the best of times, add to that I had to maintain a state of heightened awareness of our physical surroundings all day long. Not being able to hear all the environmental sounds required me to be constantly alert. For example; I couldn't hear the door bell and did not enjoy being home alone at night.
I found it impossible to relax. I always needed to know where the children were. I could possibly hear the loud noises they made but would not be able to identify if it was a happy sound or not. I would have to constantly investigate. My eyes not my ears were doing all my listening. The concentration needed to lipread is draining and the frustration I felt was immense. You can't peel potatoes and lipread a small child around your ankles at the same time. Daily tasks took twice as long having to physically stop what I was doing to answer a question.
While it was an ongoing battle for me to understand my children through lipreading they all adapted with ease, for them it had never been any other way and they learned very quickly how to attract my attention. Kasam especially found his own way of alerting me when he wanted to talk. He would grab my chin and turn my face towards him. However there was never any warning this was about to happen and I could be doing anything and the hand would appear and suddenly I'd be looking at his lovely wee face!!! It was quite comical and he still does it!!
The fact that Mum couldn't hear well (I used to tell them my ears didn't work!) did not seem to faze them. In a sense the deafness actually brought me closer to them because we communicated in other ways; through eye contact, facial expressions and touch. We developed our own language, signs and gestures. (They do know a little of the official sign language). It helped me immensely to know that they did not appear to be adversely affected by my disability or be at a disadvantage because of it.
On the flip side I would experience darker days when I would have such strong feelings of being a burden to my family and sometimes felt they would in actual fact be better off without me. I had a lot of great friends but would question why would anyone want to be friends with me it must be such a trial for them. I had very low self esteem but didn't let anyone see, I countered it by being loud and in your face!! All the while underneath I was floundering, slowly becoming lost. These negative feelings simmered away quietly inside me and would not surface just yet but when they did it caused me great pain.
In February of 2001 our fourth and final baby graced us with her presence. For Yasmin the long awaited little sister, Samara! Now the family was complete, two girls and two boys, could it be any more perfect? In today's society most people just about keel over with shock when I say I have four children( and even more so when I say I could have gone to six!!) but for me it was the most natural thing in the world and I had surely been destined for this role as "Mum".
I truly loved the baby phase, the breastfeeding, the cuddles, the new baby smell (I could go on and on.....) these four little characters with all their idiosyncrasies. I was a stay at home Mum and proud of it. With no desire to return to work I immersed myself in the children's lives going to play groups ,swimming, kindy and helping out a bit a school and so on. My philosophy was to build strong bonds with them all now which will hopefully pay off in the future and I will have raised a fine bunch (otherwise I'm going to totally terrorise them all in my old age!!).
One of my good friends, Louise, decided to set up a music group for toddlers. Since I was no longer listening to music it was a great way for the little ones to have some fun to music with me. I could participate to a certain extent singing along to the likes of "Twinkle Twinkle little Star" but that's about as far as it went. The rest of the time I followed what was going on by watching and copying the others in the group. Exhausting yes, but also rewarding, the children enjoyed it immensely.
The sounds I could perhaps pick up were things like a loud bang, a door slamming or if the TV was on full blast. My reality was that all sound was virtually gone. I had not spent time agonising over each individual sound I could no longer hear. It had been a silent, slow withdrawal over the years. My brain had not registered the fact that I could not hear specific sounds, I didn't think about it all the time, sound simply wasn't there anymore.
My omnipresent anxiety about making "listening" mistakes remained. The behaviour patterns that I had formed continued, in terms of being in a constant heightened state of awareness and being unable to let down my concentration levels. The sheer effort required to lipread EVERY conversation was both mentally and physically debilitating. It made it hard to slow down and unwind. I was like a spinning top with no stop button. I neglected to take any time to rest.
Slowly depression engulfed me.
About a year after Samara's birth everything began to catch up with me. It was the culmination of events and circumstances of recent years which had a profound effect on my mental wellbeing.
Slowly depression engulfed me, although I didn't recognise it at first. We all experience low moods from time to time but this was different. This time I could not lift myself back up. I began to withdraw socially. I might be with a group of friends sitting having coffee or at playgroup or at home and would "tune out". I just didn't have the energy to lipread or try to follow the conversation. I felt completely lethargic with no motivation to do anything. Daily chores and routines were undertaken grudgingly. I experienced uncontrollable fits of crying which I could not understand. Huge, relentless sobs filled with what felt like defeat. My sleep was erratic and sometimes non-existent. I lost my appetite and I felt constantly nauseous. There was a twisted, tangled knot continually turning in my stomach. I was grumpy and impatient with the children.
Shokit marched me off to the doctor who said "Fiona you are depressed". I looked at him incredulously as if to say "Don't be ridiculous!" Depression changes the way a person thinks and acts. I was able to hide it to a certain extent, but not from those closest to me. The doctor prescribed anti-depressants but I was adamant I was not taking them. I keep berating myself for being a wimp "What on earth did I have to be depressed about??"
I had not acknowledged the depression and the deafness were linked and both were changing ME. Analysing this now it was as if my very essence was disappearing, my identity eroded (in hindsight by both).
The darkness continued to envelope me, I wanted to curl up in the corner under the duvet and hide. The pull of the blackness and sense of despair was strong, and I admit it would have been easy to stay down there forever. Stop the world and jump off. All the negative feelings I had about myself finally pushed through the surface. I allowed them the freedom to do as they pleased and they pulled me to the bottom of the pit. These feelings of being a burden: To my husband: he must surely have had enough and leave me: To my kids who must no doubt be ashamed and mortified by their mother: Why did my friends put up with me, I must be such a pain.
I told myself over and over it must all be true and my brain went round and round in circles, further and further down and down as the paranoia took hold. Completely irrational, but my outlook on life had become very bleak. The end result was I reluctantly began on the course of medication and spent a week in the psychiatric ward at Dunedin hospital, which as it turns out, was a very positive experience and not as scary as one would imagine.
Before the hospital admission I had seen a private clinical psychologist, cost me $200, and his diagnosis was you're not mad, off you go, take some time for yourself. That's helpful!!! The hospital staff were amazing. I got some decent sleep (albeit with the help of a pill) and managed to get some food inside me. (looking back there must have been something really wrong for me not to be eating as I do like my food!!!) Then it all came pouring out. What great listeners the nurses and doctors were. It had taken for me to hit rock bottom but now I was finally able to unravel and sort through my thoughts and feelings which were directly linked, or could be traced back, to the loss of my hearing. Which is exactly what it was, a loss. I needed to grieve for it and then accept once and for all that it was gone.
Slowly my positive attitude began to return. I had been rigidly focused on what I couldn't do because of my deteriorating hearing. This slow transition from being hearing to deaf had been frustrating and painful. There was nothing I could do to change that so I had to move forward. Examining it closely there were only a handful of things that I physically couldn't do for example, listen to music and converse on the telephone. Everything else in life I could do or could find a way to adapt. It was OK to be deaf. Finally I might actually accept this and embrace it.
Recovering from the episode of depression took some time but I had a huge amount of support from my family and friends. It was relatively easy to be upbeat and positive for a while, but with the same ease slip back in to old habits and attitudes. While I remained true to my feeling that I could accept being deaf and not be deflated by it, there were numerous occasions when I would wish it was not so.
It's difficult to describe the isolation.
It's difficult to describe the isolation. Even though I was surrounded by family and friends sometimes I was lonely. Around the dinner table at home or with friends, while I was there in the physical sense, it was difficult to feel truly part of the life that was going on around me. It was disheartening to feel on the outer of conversations, always asking for repetition. Those close to me would always include me but I was continually two steps behind everyone (I do like to have my say so would often feel cheated out it!!) Making mistakes due to not having heard correctly, or should I say not being able to lip read, can be excruciatingly embarrassing however many times I tried to convince myself that it wasn't my fault.
Obviously the children were growing older and becoming involved in various activities and clubs. Yasmin was moving on to Intermediate school and I had to move out of that nice comfort zone of familiar friends and teachers. Meeting new people and striking up conversation always required an explanation. Eight times out of ten it was fine and people accepted me but I have encountered people who seem to equate deafness with lack of intelligence and these treated me accordingly!
Even though I had, more or less, accepted the fact that I was now profoundly deaf I never made any real moves to interact with the Deaf community. My life wasn't there, I couldn't feel that I would belong. That is not intended as a criticism of the Deaf culture in any way. Had I been born deaf I may have felt differently but I just couldn't seem to identify with the Deaf culture and yet I could no longer function in the hearing world. I was not a Deaf person. I was a hearing person who simply could not hear.
I struggled to know where I belonged?? When I see deaf people communicating using sign language I am mesmerised and have to stop myself from staring. I wish I could do that. Perhaps I should have made an effort to become more involved. I did take one sign language class after Samara was born and made a few trips to the Deaf Association but that was as far as I got. Learning to sign is learning a second language which is not that easy. And not only me but my family would need to learn it as well if we were to communicate fully. One of my main difficulties whenever I have been around people signing was I relied so much on lipreading I concentrated on that and missed the sign.
I knew I would not be able to maintain the positive state of mind indefinitely. It simply required too much energy just to get through the day. To avoid any further episodes of depression I would have to take action. Being deaf can be such a barrier to effective communication within the hearing world. Society in general doesn't always accept or understand people with disabilities.
It worried me that my relationship with my children would change as they got older. I needed to be available to them for anything. If conversations or getting their point across to me was too hard they might just give up and not bother. I did not want our relationships to be affected.
I had to be able to deal with all the new people I would be coming across now and in the future. I could have done all of this as a deaf person but it requires 100% more effort. I needed to swallow my pride and ask for a little help, subsequently I returned to the audiologist. Time to try the hearing aids again I told him. (I had tried a few years ago without much success.) He carried out a hearing test which indicated I couldn't really hear anything and this meant not much point in trying out a hearing aid because there was nothing there for it to aid! I should have guessed really as when he was doing the test I was sitting there with the earphones on waiting and thinking "come on then you can start today sometime" and he was half way through!! Well bugger, too late Fiona!
But then he said "What about a Cochlear Implant??"
What indeed?!! I had heard of this but had no real knowledge of exactly what a cochlear implant was. An implant had been suggested a few years previously as a future event for me and then I had never thought of it again. So, off I toddled to Christchurch to be "assessed" by a clinical team of audiologist, rehabilitationist and surgeon.
The team in Christchurch decided I was an ideal candidate for their program and the waiting game began. The process of having an implant is, itself, not overly complicated and the risks in the surgery are minimal. The technology is, to me, beyond description. The intricacies of the actual mechanism both in the implant and external processor are truly amazing. (see picture and explanation on the Cochlear website.
The human ear however is a very complex organ. How anyone hears at all is astounding. In my case the nerve endings in the workings of the inner ear (or cochlea) were severely damaged and therefore unable to do their job. The medical name is sensorineural hearing loss often mistakenly referred to as "nerve deafness". The sensory cells (or hair cells), which create the electric signals which get sent to the brain through the auditory nerve to be interpreted as sound, were no longer effective. What had begun 15 years previously as a mild sensorineural hearing loss was now a profound one and this is a permanent state. The good thing about a cochlear implant is it bypasses the damaged part of the cochlea and does the work for it.
The monetary cost of the whole process of becoming a cochlear implant recipient is extremely high. The program, run by the Southern Hearing Charitable Trust, relies on government funding which is where the waiting I mentioned comes in to play. With my name on the waiting list I allowed myself a little bit of hope that one day soon I would hear my children's voices.
As the months passed that hope diminished to be replaced with questions and doubts bombarding my thoughts "when would I get a date?" "What if it doesn't work?", "maybe I should just stay as I am" and so on and so on.
I had to suppress the excitement and not allow myself to become too hopeful. Until I had a date in writing I attempted to be nonchalant about the whole thing. The government announced an injection of much needed funds into the program and I was so very fortunate to be one of a group of 20 adults nationwide to receive the surgery as a result. The letter duly arrived with the date confirmed for February 21st 2007. The surgery was scheduled for 9am (typical - no breakfast for me!!)
The local newspaper ran an article about the extra funding and interviewed me about the forthcoming surgery. I was overwhelmed by the interest this generated. Every time I went to the supermarket where we live I'm always asked "how's your hearing?" The day of the surgery loomed closer and my brain put itself into over drive. My thoughts were somewhat melodramatic......"they're going to drill a hole in my head!!!!" or "what if I die on the table?"
Not wanting to frighten the children any more than they already were, I reserved the panic for when I was alone. Staying in the motel the night before the operation I could have done with something strong to put me to sleep!! Instead it was a night of tossing and turning overcome with fears and worry.
In retrospect, the fears were all totally unnecessary and my surgery was undertaken without incident. "Completely straight forward" the surgeon stated. After a night in the hospital (which turned out to be a private one which was more like a five star hotel and I did not want to leave!!) we headed home with me looking like something from a horror movie with a huge bandage wrapped round my head!! I could have auditioned for a role as The Mummy! I wrapped a scarf around my head and donned some big sun-glasses in the hope of creating the movie star look, unfortunately the effect was more old granny!
Before the next stage, the wound site of the surgery needed to heal so despite having had the surgery I could still not hear and nothing more would happen for a few weeks. It's a difficult and anxious waiting time, but it was quite nice to play the invalid at home for a week or so (that's about as long as I could get away with it!). I languished on the sofa with a collection of DVD's and books to keep me company (and some chocolate supplies stashed under my pillow).
The first few days after the surgery I felt a bit wiped out. It took me a week or so to feel almost back to normal. The wound had to stay dry for five days by which time I had nice stinky, greasy hair (not a good look!). It was a major relief to wash my hair though it took me hours in the shower, (I'm sure I used up all the water) while I very timidly and gently massaged my head not wanting to dislodge anything, complete wimp that I am!!
After that I was proudly showing off my shaved head (well the small section behind my ear!) and the scar to anyone who was interested and probably a few who were not. The supermarket ladies all wanted a look and I managed to hold up the checkout queue a few times!
Suddenly the "switch on" day arrived (yikes!!) I felt unprepared for what I thought was going to be such a momentous occasion. The children had fears and doubts about everything and I'd spent a great deal of time trying to allay them - more from their perspective than my own. "Yes this was a good thing to happen to Mum" or "No it would not change ME".
I had not fully considered exactly what being able to hear again was REALLY going to mean to me. In the car on the 5 hour drive to Christchurch everyone was quite subdued and lost in thought. We had to stop for me to throw up which is a change from it being one of the kids!!
On March the 14th 2007 all six of us entered the clinic anxious and nervous. Shokit and the children sat in a semi-circle facing me and the audiologist. They all hung off the edge of their seats in anticipation and stared expectantly at me. I had to sit on my hands to stop fidgeting and my heart was hammering hard in my chest as the audiologist connected the external processor and prepared to "switch" me on.
She did the countdown "Are you ready,3..2..1 and you are ON..........." I had been warned this could be disappointing and at first I thought, "she's must have done it wrong I can't hear anything????" Then slowly like being woken after a deep, deep sleep the sounds began again. The outcomes for each cochlear implant recipient are individual and the process may not be instantaneous. From the moment the device is activated the journey out of silence begins.
The first day was bewildering. My brain simply had no idea what was going on. The part which processes and understands sounds had been hibernating for the last fifteen years and was fairly reluctant to get back to work!
We spent that evening in a motel and I must say I wandered round the room in a daze. I could hear my own footfalls on the lino in the kitchen. I just about had a heart attack when I visited the bathroom, the toilet flushing and the water running from the taps, it all sounded like The Niagara Falls. I could hear the rustling of the bags and boxes our takeaway dinner came in. The noises coming from the television were indistinct but I could hear them!
We sat round the table and the excitement was almost too much to bear. I closed my eyes and the children, one by one, said some simple words or phrases and I heard and repeated it to them!! Then Shokit said "We love you" and I dissolved in to a blubbering mess. This was a miracle I could hear them!! The sound was not perfect, they all sounded the same - very mechanical and robotic but it was SOUND. It had been a very long and emotionally exhausting day but I could not sleep. The pages of my book made a noise as I turned them, the duvet made a crinkling noise when I moved in bed, there were sounds coming from the road outside.
My cell phone (which was ringing hot) was on the bedside table. It made a beeping noise, I DID NOT KNOW THAT!!! I thought it just vibrated. I kept willing someone to text me again so I could hear the beep. The next morning as we drove to the clinic it was raining. I could not fathom what the noise I could hear was??? Then suddenly it hit me and bowled me over like a ton of bricks, it was the "plink plonk" of raindrops on the car!! I was like a child, giddy with excitement.
Then we turned a corner and "tick tock tick tock" filled the car. I had forgotten the indicator makes a noise! (This would eventually drive the kids nuts as I still sing along "tick tock tick tock" when we turn a corner!!)
I had to remain in Christchurch for two days of testing and monitoring and Shokit returned home with the children. The testing with the rehabilitationist gave me such a boost, I felt on cloud nine. We started with a piece of paper with some words and sentences. She asked me to place it in front of me and look down at it. Then she said she would say the words and I would have to tell her which ones. The immediate response in my mind was like the Tui beer adverts, one side saying "You Will Hear The Words" the other side saying "Yeah right." She was very reassuring and convinced I would manage so we began. A few minutes and several tears later I had scored almost 100% and heard nearly every word she said.
Later that day, feeling adventurous, I took myself to the shopping mall. The noise was incredible and horrible!! The cacophony of sounds was overpowering and I didn't last long.( the credit card didn't get too much of a workout that day!). I did make a couple of purchases and from then on all I could hear was the rustle of the plastic carrier bags. I swung my arms jiggling the bags as much as I could almost dancing round the mall.
That evening in the motel I practised with the television. When the commercial breaks came on I tried to repeat them. I couldn't make out all the words but understood the occasional one like "20% off this Tuesday". I was reading the paper at the same time when I realised I could hear something I recognised. I looked up at the screen to discover Coronation Street about to start. I could hear the theme tune for Coro!!!!!
I wanted to grab people and ask they could hear!
The next day at the airport waiting for my flight home I was surprised by the tannoy announcements. I didn't understand what was being announced it was all a jumble but stood in amazement listening to it almost wanting to grab people walking by telling them "I can hear that can you??!!" (I may have got a few funny looks that day!!)
When I returned home I was greeted by our kitten. She curled herself around my leg and meowed and I heard her!!! What a lovely sound that is. Initially the sounds I was hearing were not quite what I had expected. There was an annoying background noise like radio interference and a slight echo. As the days progressed this lessened and the sounds seemed to unravel and became more identifiable.
There are so many sounds in the world that I had not consciously realised I had missed. The washing machine, dishwasher, kettle boiling, doorbell, telephone ringing, cooking sizzling in the pan, the microwave (which incidentally I discovered keeps beeping till you take the food out!) I marvelled at these everyday household sounds like they had just been invented. Occasionally when friends have been over and I've left the extractor fan on in the kitchen they have switched it off, now I know why, it makes a terrible racket!!
The robotic speech sounds of the first week slowly took a more natural form. Shokit sounded like I remembered. Men and women's voices separated in to just that. The children's voices filled me with such rapture, even when they were fighting and screaming. (the novelty of the latter has now worn off, though at least I can "switch off").
New sounds presented themselves every day. One morning I went out to the mail box for the newspaper and I could not figure out what the sound was. The next day the same thing, what was it?? I stood in my pyjamas and nearly dropped the paper. It was the birds. I cannot describe the ecstasy, the pure joy I felt as I stood there in the street (in the pj's!!) and listened to the early morning birds. It's the first thing I do every day now - go out for the paper and say good morning to the birds.
It was all quite a shock to my system and overwhelming at times. However in order to achieve the results I was aiming for with my implant, I had to throw myself in at the deep end and expose myself to as much noise as I could. No worries there in my house!!!
In the past I had been quite fixated on being unable to hear on the telephone but in comparison to all the sounds I had gained it was no longer a priority.(everyone texts and emails these days anyway). However saying that I had a very emotional conversation with my mother in Scotland, (when I say conversation that's being generous it was more a blubbering from my end) I was in awe that I could actually hear her voice. She must have been very excited too as about two minutes later my sister in England called and I heard her exclaim to me "Mum said you heard her!!"
One thing that totally freaked me out was the sound of my own voice. I kept thinking "who's that talking?" only to realise it was me!! Being able to actually hear myself talking was just weird and not at all as I imagined I sounded.
The first six weeks post "switch on" are very intense, both exhilarating and exhausting. There were the weekly trips to see the audiologist and rehabilitationist. The general adjustment and re-learning is hard work but the rewards are worth it.
With four children I spend a great deal of time in the role of Taxi driver. They have always had music playing in the car, which of course in the past I'd been totally oblivious to. As we got back into our normal routines driving to school, sports or social events, when the music was on I could make out the different beats or when it changed to another song however, the vocals were mostly indistinguishable.
Right, I thought if I can hear this I'm going to try something I know. So I dug out the ABBA!! We were driving back home from school and I had the CD in the car. The kids all jumped out and ran off to play and I put it on. The pure magic of Bjorn and Benny filled the car. I could not believe it I was listening to "Dancing Queen", "Waterloo", "Mama Mia"............ I felt as though my heart would burst, the tears were streaming down my cheeks as I laughed and cried and sung along. I could not get out of the car.
Sometime later the kids came looking for me and were horrified at the state of me, "What's wrong Mum??" they asked. "I'm listening to ABBA" I wailed back at them.
There had been three main things I had hoped to achieve from having an implant,
- To hear my husband and children's voices.
- To have a conversation with Mum on the phone.
- To listen to Deacon Blue, a Scottish band Shokit and I loved when we first met.
I had done 1 and 2 now it was time to try number 3. One Saturday afternoon while the children were all amusing themselves happily we sneaked off to our room and turned the stereo on. I put the tape in and suddenly once again my heart was in my throat, I could hear it and understand it!!! I buried my head in his chest and we gently swayed to the music we had listened to together twenty years ago.
The return of music in my life has been a huge bonus, one that I had not really been expecting but have grasped firmly with both hands. To hear the words of a song and feel the beat and move in time - it's euphoric. It is difficult to articulate the depth of feeling I have about being able to listen to music once more. Some days I can hardly get anything done I spend my time going through our CD collection!
The children are certainly getting a good education in 80's music. I'm pretty much stuck there at the moment. It feels like I've missed a decade or so of music though I'm assured by my friends that I've not missed much and the 80's were the best! I have been experiencing a trip down memory lane. Songs and melodies evoke strong memories of events and times in a person's life. Until now I had forgotten the songs that meant something to me. Listening to them all again has been like meeting old friends. The more I listen and can appreciate the different sounds which combined make a tune the more I want. I can feel the music with every part of me. My heart almost explodes with joy when I hear the singing voices of artists I love.
I'm sure the children are starting to think their mother is totally away with the fairies as they find me regularly dancing around the house (at least no one else has caught me at that yet!!). If you see me driving around Dunedin in a van with loads of children singing away to myself I haven't lost my marbles I'm just lost in the music!!
At the primary school three of the children attend there is assembly on Friday afternoon. I've been going along to this for years to watch and be there. The first time I went after being switched on all the children began to sing "The Wheels on the Bus". It was an incredibly emotional moment for me and again the tears flowed freely. One of the teachers beside me was most concerned but I couldn't help it. After years of "The Wheels on the Bus" this time I could actually hear it!!
There have been several occasions now at school when I've had a huge lump in my throat and tears in my eyes. All these firsts where happening. First time I heard the choir sing, first time I heard announcements and speeches at assembly, first time I heard the whole school sing the National Anthem and many, many more.
The next big event was going to the movies. I am a huge Harry Potter fan. I've read all the books but had only seen one of the movies on the big screen. When the new films are released I've always waited for the DVD to access the subtitles. There is a certain magic surrounding watching a film on the big screen. The ambience of the movie theatre, the music that builds to a crescendo, the excitement when the lights are dimmed and you wait in anticipation for the movie to begin, the screen itself (and not forgetting the ice-cream and popcorn!!) I could listen to the jingle for 20th Century Fox played at the beginning of the films again and again and again!!!
I have taken the children to see movies over the years, which was fun for them but more a good opportunity to squeeze in a wee snooze for me!! Not being able to hear the dialogue makes it a pointless exercise trying to figure out the plot!
On the first excursion to the cinema post switch on I heard everything though my comprehension of the dialogue was about 50%,enough to understand what the movie was about (the name of it escapes me it wasn't that good, some futuristic, sci-fi attempt at entertainment!). Even so, I was ecstatic leaving the theatre, 50% is better than 0%.
Next was Shrek the Third and I laughed till I cried. Animation is doubly hard with no sound and no way of lipreading. Being able to hear the jokes and laugh at all the right places along with everyone else in the theatre was just brilliant. I was so excited when we arrived at the cinema for Harry Potter. This time I understood 80% of the dialogue, that's nearly the whole movie!!! Being a die-hard Potter fan I returned to the cinema three times for this movie and each time I picked up an extra line or word that I had previously missed. So really it was a rehabilitation exercise...and not me being a complete saddo!! I think there may be a need for a concession card for the cinema!
We have also been to a few theatre productions which again have been incredible. As with the cinema the total experience is enhanced by being able to hear the content.
As I write this it's coming up for Christmas. The last few weeks have been the usual chaotic time at school and home. As I mentioned before this has been a year of 'firsts' and that continues. At the carol service at my daughter's school I was singing along in full voice!! At the school show I could follow the dialogue and clap along in time to the music. At school prize giving I heard every word of the speeches and heard my daughter's name called out for a prize (I was the proud Mum at that one!!) At the Pantomime I got most of the jokes!! At the company dinner I could relax and move around the group and have conversations with ease.
My friends and I had a girls' night out and guess where we went........to see a cover band of ABBA!!!! I was up there dancing and singing along with all the "hearing people" and it was pure magic. The happy tears have been flowing freely. At home we discovered some old video tapes and watching them I was totally enthralled. The children were in hysterics at each other as babies and toddlers and yes you guessed it I could not contain the tears at the baby sounds and gorgeous little toddler voices.
Life no longer feels like a constant uphill struggle. One-on-one conversations are a breeze, I can understand everything. I no longer have to totally concentrate on people's lips and can take in the whole face and look people in the eye. My enjoyment of social occasions has increased tenfold.
Instead of teetering on the edge of depression and feeling isolated I am developing a new found inner confidence about myself. I no longer panic when introduced to a new face. I no longer avoid contact with people I know mumble or who I struggled to lipread.
The long forgotten dreams of listening to music or hearing the children's voices or talking to Shokit on the telephone the nights he's away from home have now been fulfilled.
Adjusting and re-learning how to live in the hearing world again has not been without a few challenges and hurdles along the way. It can be overwhelming and tiring. There is a moment first thing in the morning when I pause take a deep breath before I "switch on" for the day. Having a successful implant cannot ever replace "normal" hearing but it comes pretty close. There are still times when it's not all great but the pro's totally outweigh the cons and life in general is SO much easier to cope with. I love to hear my children's kiwi accents! (although I'm not so fussed about hearing my own Scottish one it always makes me think do I really sound like that??!!) The laughter around the house, the singing in the car, talking to family and friends on the phone, asking and answering questions when I'm in the kitchen and they are in the lounge!. All the noises and sounds that a family makes that I had missed!
I am playing "catch up" with life and experiencing all the sounds again though this time through different eyes and ears and with a much greater appreciation. (Though I am catching up quickly and some days the world seems like a very loud place and you just want to scream SHUT THE F**K UP!!!!!.........but only for a minute.)
Life is a symphony of sounds. I had adapted but never fully accepted losing my hearing. I find it very difficult to comprehend (and slightly unnerving) how silent my world had been. At the end of the day I am still a deaf person but one who can hear through an extraordinary piece of technology. The gift of sound has been returned to me, for which I am thankful every day. I welcome each new sound with open arms (and ears!). I have emerged from a silent world to a world full of options and doors which I can now open rather than leave closed.
Not a day goes by that I don't think "Wow I can hear again" I will never take sound for granted. The journey out of the silence was not an easy ride and at times, emotionally charged, but it is a journey I would not have missed for anything.