I could have written this from so many different angles. The fear I faced waking up in an unfamiliar body. The frustration of struggling to find help in a medical system so geared to common ailments and diseases and learning that there is no one who can help. The disgust at how women are treated and pigeonholed as “emotional” or “depressed” – being told “Sweetheart, you’ve just forgotten how to swallow” is so demeaning and disrespectful. Being an outsider in your own life – not taking part in family meals or celebrations. Work functions and events that all center around food and champagne. Friends that don’t know how to catch up if not over coffee, and family that can’t come to visit without planning a barbecue. Or how to deal with food, food and more food being shoved in your face everywhere: magazines, billboards, TV, in the streets, friend’s houses, supermarkets, restaurants, cafés, even in your own home. And how when you’re starving, it’s pure torture.
I was a happy healthy 39 year-old mother of 3, enjoying a career that I loved as a goldsmith, and running my own successful jewelry gallery. When, with one mouthful, my world flipped upside down. Life as I knew it ground to a halt.
I woke up one morning as usual, went downstairs, made myself some peanut butter toast and a cup of tea and sat down to eat breakfast. It was a Saturday. I took a bite and chewed as normal, but as I pushed the food to the back of my mouth to swallow, nothing happened. My throat remained relaxed, open. I squeezed my mouth tighter, pushed back harder, still nothing…until I felt it hit my airway. I was choking!
Afterwards I felt shaken, confused, in a state of disbelief. Why would my swallow not start? I tried again – the same thing. This didn’t make sense. My mind was reeling. I pushed my food aside and busied myself with other things, thinking I would come back to it afresh a few moments later. After all, bodies just know how to swallow, just like they know how to breathe or pump your blood. Right? They don’t just stop. This just doesn’t happen.
Well, of course, I know now it does. And sadly for me, that first mouthful was an indication of every mouthful to come.
After a couple of days of this, I was beside myself with hunger, anxious over choking so many times and frustrated at not being able to get the food from my mouth to my stomach. It seemed such a simple task, but try as I may, I couldn’t make it happen. I fared better with liquids, though I still choked repeatedly. Some textures were more successful than others, but I just couldn’t seem to keep my airway clear or control the initiation of my swallow. It just seemed like a lucky dip as to where the food would end up.
It was exhausting. I went to my local doctor. He told me it was stress, and without doing any comprehensive tests, prescribed me Valium. In desperation I took it, hoping he was right. They made me very, very relaxed, but did absolutely nothing for my swallow.
By now I was ravenous, all I could think about was food and how I could get it in. Over the months, I tried hypnosis, counseling, and removing anything remotely stressful from my life. But of course none of this was ever going to work, as stress was never the problem to begin with! When I eventually saw another doctor out of concern for my weight loss, I told her I had a “stress condition.” Luckily for me, she probed further. When she heard how clearly I could describe the malfunction in my swallow, she picked up the phone and called an ENT surgeon right then and there. She sent me straight up to his office.
The ENT specialist I saw that day was the first doctor to give me hope in a long time. He said to me, “You just have something misfiring and it will be a process of elimination to find out what.” It was the first real plan of action I had.
The first step, he sent me for a cine swallow (a video swallow study) with a speech therapist present. She could see a delay in the swallow trigger, and at times it was not starting at all. She also saw a lot of premature spillage (food/liquid going into the throat before starting to swallow). I felt for sure they could do something to help now that they knew what was happening. Instead she said, “I think your answers will lay with neurology.” She asked me to keep her posted, as they see people like me and don’t know what to do to help them.
I felt that the ground was disappearing from beneath me. Like maybe this was going to end very badly. I had an appointment set with the neurologist, but had to wait for a couple of months. In the meantime, the tests continued for illnesses and autoimmune diseases I had never heard of. My hair was sent for analysis to rule out heavy metal poisoning. Even the pearls I had been working on that weekend were sent for forensic testing to rule out mycotoxins! Nothing came from any of this, no answers.
It was six months before I even heard the word dysphagia. By this time, my weight had plummeted and I ended up in hospital, suffering the effects of malnutrition and dehydration. I was scared, confused and trapped in a living hell that didn’t seem to make any sense. At that stage I had never heard of anyone not being able to swallow. Frighteningly my doctors seemed equally perplexed. I felt sure I would die; either slowly by starvation or quickly from choking. My days became solely about survival. Trying to find ways to trick my body to get the food down. I would set goals for myself – a whole tub of yoghurt, a glass of water and two whole strawberries to be consumed by the end of the day. I rarely met them. I was barely sleeping and was consumed by my hunger. I felt broken and desperate. I felt like my body was trying to kill me. I’d regularly choke on my own saliva, often in the middle of sleep. There seemed no escape and no answers. I withdrew from friends, family, the world.
I felt embarrassed, humiliated. How do you explain to someone that you can’t swallow when you don’t even understand it yourself? That it takes you half an hour of constant, focused effort to drink half a glass of water? I felt weak and ridiculous. And my friends withdrew from me, too. Not knowing what to say or how to handle it. Some tried to make light of it, telling me I looked “great” at 46kg (100 lb), joking they wanted to be on the diet I was on.
I felt like crying. I was petrified that I was dying, and felt powerless to stop it. No matter how hard I fought, everyday my weight continued to drop. And it felt like everyone around me was missing the seriousness of it. It’s basic: People need food to live. Without it, they die. Was I the only one who realised this? I felt alienated from the people I once knew, like I existed in another realm now, and I stopped trying to reach out.
Eventually I was put on a “liquid only” diet, as it was deemed it would be “safer for me to choke on that as all that would happen is I may develop aspiration pneumonia,” but that there would be “less risk to blocking my airway.” The speech therapist showed me roughly the size of my airway opening, and told me as long as it fit through there, it would be ok.
I was in shock. Devastated. This was now my life. You will choke. Many, many times a day, but it’s okay?! This was not okay! I couldn’t live like this. This was no life. I began thinking it might be easier to take care of things myself. End things in a way I controlled. I was more scared of ending up brain damaged from lack of oxygen after choking than I was by dying at this stage.
I already felt like such a burden to my family. And I hated seeing my children upset by this. I started eating/drinking in private only with my husband, trying to shield them from what I could. It broke my heart when they came to me, crying, saying, “Mum, I’m scared you’re going to die”. I couldn’t tell them I was too. I needed to be strong for them, but inside I had nothing left and still no answers. Words like MND (motor neuron disease) and MS (multiple sclerosis), among others, were thrown around. When tests ruled things out, other doctors would complacently mention, “You can get false negatives.” I had no idea what I was dealing with or what was coming next.
My symptoms began weeks before my swallow stopped working. Only I didn’t realise it. There was a painful rash in my left ear that looked like a patch of tiny cold sores. And that’s exactly what I thought it was. Knowing doctors could do nothing for them, I put cold sore cream over them and carried on. The pain was excruciating – sharp and stabbing along my ear canal and down the left side of my throat. And my head throbbed, too, more painful than a headache, but different to a migraine.
I could barely think straight. At times when the pain crescendoed, I would have to pull the car over to the side of the road, the intensity causing a “roar” in my head I could hear. I remember at one point realising my left cheek and chin were numb. I sat at the kitchen bench poking and prodding at it with my fingers. I said to my husband, “Wow, these cold sore have really gotten into my nerves! They’re viscous!” I couldn’t have known how prophetic those words would be.
They were not cold sores. It was the Shingles rash. And it was in my ear canal, damaging my cranial nerves, and wreaking havoc that would take years to overcome. My rash subsided within two weeks. I thought that creams I had been using had done their job. I thought it was over. But a little over a week later is when the real problems began.
It took doctors 9 months to figure out that the painful rash that I had had in my left ear had in fact been Shingles. And having been left untreated, it damaged 4 of my cranial nerves. Up until that point, I thought it was unrelated, so had not thought to mention it. After the Shingles discovery, I felt hopeful again and excited to have something concrete to fight.
Tests followed to pinpoint exactly which nerves had been damaged, and I started to get some explanations as to why certain things were happening. But that hope quickly turned to despair when I was informed that there was nothing the doctors could do but “wait and see,” that these nerves “sometimes repair themselves.”
It was a rollercoaster of emotion to end up roughly in the same place. Except for one thing: I was offered a PEG, a feeding tube. I snapped up the chance and felt angry that this had not been offered sooner. It changed my life. I felt full for the first time in almost two years. A huge weight had been lifted off my shoulders; I actually had time to think.
The previous year, drinking nothing but thin liquids had been a blur of 13 drinks a day, each taking me a half an hour to consume. The regimen had evolved while working with a dietician to maintain my nutrition and weight. It was a full time job. My husband had had to use up his long service leave to look after me. My weight gain was minimal, my nutrition borderline, and things like my anemia just seemed impossible to rectify.
Now, with a mere 4 PEG feeds a day (Ensure 2Cal), I could replace all that. And no more choking! My quality of life transformed dramatically. I started feeling like maybe I could do this. By now my friends had dwindled to none. My hospital stays brought no visitors or even well-wishing text messages. I know I fell out of touch, too, but it was hard to think nobody cared about how I was doing. I heard the rumors that people were using words like “phobia” and “breakdown.” I felt judged and betrayed by the people that should have known me better than that.
With more time on our hands now and more of a chance to think clearly about things, my husband and I realised with all of this new information and explanations, none of the doctors we had been working with had experience in treating this. Most just didn’t know what to do, other than monitor things. I was being told after getting my feeding PEG that this would be my life now, and, as far as my swallow went, this would probably be “as good as it’s going to get.”
I wasn’t prepared to accept that. By now I knew that countless others suffered from dysphagia for a myriad of reasons and there’d been many who had been able to eat again. I was determined to be one of them. But I knew I needed to find the right people to help me. We searched high and low within Australia and came up empty. Then, my husband remembered something he had found on the internet – the National Foundation of Swallowing Disorders in the US.
We reached out to Ed Steger. He put us in touch with Professor Peter Belafsky and that’s when the real changes started to happen. While I could write a whole book on what Peter Belafsky has done for me, it pales in comparison to two main things that happened in that first phone call. First, he could explain what was happening to my swallow and what we could do about it, and second, he had empathy for what it was to live with a swallowing disorder. And I will be forever indebted to him for transforming my life.
I had my feeding PEG for 18 months. It restored my weight, gave me back my health and my life, and I will always be grateful for that, as I truly don’t think I would still be here without it. When I had it removed 6 weeks ago, it felt like losing a limb. It had become such a part of me. But on the other hand, I couldn’t wait to be rid of it. It felt like a new beginning. And I am so excited to be able to eat real food again.
The hardest part has been the isolation, being struck down with a condition that nobody, even you, understands. I know there are people in my life right now who think that if I just tried harder, or was braver, I could eat. They just don’t get that it doesn’t work like that. My swallow fails on me. It’s a disability, not a mindset. I try every day. I fight, I struggle, I want to improve. I am determined to eat, even though it’s a long and arduous battle to get through each and every meal.
Sometimes my husband has finished his meal while mine looks barely touched and I am already exhausted. Half an hour of non-stop chewing and swallowing and head positioning and throat clearing and keeping your airway clear and managing spillage and trying to keep a track of where the food in my mouth is…is so tiring. At times it feels like I’ve run a marathon. Sometimes my husband will ask, “How was that?” Truth is, it’s hard to get a chance to register the flavour when there’s so much else to think about with each mouthful. But I’m so happy and grateful to even manage this.
As wonderful as my PEG was at the time that I needed it, having a thick yellow solution syringed into your stomach just does not compare to real food. Psychologically as well, it’s so good to feel like a real person again. While there are still many, many things I can’t eat, the list of things I can is growing. And it’s nice to hear the doctors in my life tell me how amazed they are that I can eat some of the things I do. At my recent cine swallow progress check, the speech therapist was so surprised I’d had my PEG removed. She said that most people with significant dysphagia still have one. This gave me so much encouragement and made me feel like my hard work is paying off.
There are definitely days when I don’t want to get out of bed and face another day of fight and struggle. Days when I’m just tired of it all. And yes, it would be so much easier if the simple things like eating breakfast were easy, or if I could just eat the things I felt like, rather than the things with textures I can manage. If I could just grab a snack when I am hungry instead of having to wait for my husband to come home for our scheduled lunchtime.
But when I think about how far I have come, what I can manage to eat now compared to a year ago, two years ago, I am so happy. For a long time, I thought getting better would be waking up one morning and being able to eat again. It’s taken this long to realise that recovery, if it comes at all, will not be like that. It will be slow and incremental. It will be hard work. And there may come a day when I may have to accept this is as good as it gets.
But I’m not there yet. At my last cine swallow there were still more improvements, small ones, but improvements! And that’s all I need to give me the strength to carry on the fight. I still have my business, but it has taken a back seat (thank goodness for amazing staff – they have really kept things on track).
Everything in my life really paled in comparison to the fact that I couldn’t swallow. Except my family. Those guys were my rock. And without them, I couldn’t have done this. When things were at their worst and I couldn’t do it anymore, my husband could. When there were no answers and no light at the end of the tunnel, my husband would find it. He took over, he asked the questions, he booked another appointment at the doctors, he fought for me. When it felt like my life had been reduced to nothing but a series of never ending drinks to choke on, I thought of my kids, of their little faces, needing me, wanting me to fight, and I’d take another sip.
This has been more than a journey. It’s been a trek up the Himalayas, and I very nearly didn’t make it. It’s also taught me a lot, about others and about myself. And it’s brought my amazing family closer together. And it’s not over yet.
Along with my swallow failure, I was experiencing deep stabbing pains in the base of my tongue along with shooting pains that continued to pierce through my ear and down the side of my throat. I had also noticed that my mouth had felt very dry, often feeling like my throat was sticking together. My voice became hoarse and gravelly. And although I couldn’t taste much of the food I was trying to eat, I was overcome by regular episodes of a strong metallic taste. Like I had been licking the bottom of a sink! I was experiencing phantom smells, too, and was convinced many times that something was burning, searching the house for the source. Along with all of this, there were lengthy episodes of irregular heartbeats. It felt as if my heart would miss a beat then beat hard, twice, to catch up, then have a long pause again. At times, I felt chest pain and light-headedness. My symptoms seemed so varied and unrelated. That is, until I found out what had gone wrong. Upon testing it was discovered that I had lost sensation to the back two-thirds of my tongue and my gag reflex had also disappeared entirely – I hadn’t noticed this myself with so much else going on. But with cranial nerves V, VII, IX and X impacted, this explained everything: the lack of saliva, the metallic taste, the numbness, the voice changes, the strange smells, the swallow not triggering, the pain, and even the odd heart rhythms. These would be later identified as ectopic ventricular episodes, when they eventually put a halter on me to record them, I was found to have an extra 1400 ectopic beats in that 24 hour period, which happens when one of the heart’s chambers beats out of sync from the others, and that was just a mild day! This virus had really done some damage.