How to make a story that spans over 24, 25 years, short... where to start with this story... I guess one would start at the beginning.
My name is Jean-Lee de beer, 36, unmarried, no kids, but my own small aviary. My journey with swallowing difficulties started when I was 10. Before I start, please allow me for this story, to use the word "Dysphagian/Dysphagians". No, I don't mean it in a disrespectful or derogatory way. I'm using it to refer to a group of people with Dysphagia. I am also a Blindie. I'm part of a group of blind people. Just like an Aspie is someone who has Asperger's Syndrome. That's a subject that REALLY interests me. But that's another story.
Back to my story - at the time when, I guess I became a Dysphagian. I was having a meal when I noticed it was as if I had, what one may call, delayed swallowing reflex. It concerned me, because it shouldn't be that way. So, to make a long story short, I went from school nurse to doctor. Neither one could give any answers as to why I'm having problems. As there were no swollen glands they felt there shouldn't be a problem. Doctor actually suggested having sips of water during the meals. So a few years later I reached high school and we had another school nurse. Same story - from the nurse to yet another doctor. Yet again, no ideas or suggestions or answers. So I started to think maybe I'm just a slow eater and I have to be careful. I mention careful, as, in that time I had a few scary moments with choking and it's no treat when you can't get air in or out of you. Which means, you can't use your voice to get attention. Which means when you are entirely alone and choking, you are in trouble.
So after school I went to college and later started work. Then it occurred to me that I am actually grown up and capable of going to a doctor of my choice. That is where my erritation with medical professionals started - seriously. For the first time over the span of how many years, I was prescribed antiacids and stuff for reflux. Ok, fine, what do I know. That was 2007-2008. By 2016 I have had enough. I'm no expert, but by that time it even took me to notice that something is wrong. The problem is bigger than just heartburn or acid reflux. That was also the time things took a serious turn for me - a turn for the worst and the scary.
So, a doctor prescribed the usual heartburn stuff yet again. Thinking on it now, I still don't get, how, after how many times of prescribing the same stuff for the same problem, that medical professional couldn't see that there is a problem. Didn't he know about Dysphagia? Or, Couldn't he just care less? I don't know. That was the time I reached out to another doctor and I promptly told the doctor to book me for whatever and don't prescribe me stuff I can get over the counter anyway - been there, done that, saw the movie, read the book, it's not working.
That was the worst and most scared I've ever been in my life as well. Imagine a very hot day, you are hot and sweaty and thirsty. So, you go for that cold glass of water - and there you are with that blessed, thirst quenching cooling liquid in your mouth ... ... ... and try as you will, you have no idea how to get it down your throat. I have no words to describe the frustration, the fear, the anxiety I felt. Frustration because I want to quench my thirst. Fear because choking is possible, probable. Anxiety because I knew I'm going to have trouble with keeping myself hydrated, nourished and well.. Many cups and glasses payed the unfair price. Sorry crockery.
I'm not proud of telling anyone this, but that was also the time I started thinking of going to sleep and just not ever wake up ever again. I'm not sure if I would've taken my own life, because I have a host of birds who would've been left without a human. I just prayed for ever lasting sleep. I just wanted to be free.
Yet, one has some kind of survival mode that weirdly kicks in when least expected. One day I was having an orange, and I realized, when biting a tiny hole in a sliver, I can suck the juice out! That was a thrilling Discovery to realize sucking helps bringing on swallowing. So started my time of taking in liquids any old way I could find. I won't go into all the graffic details. I'd just say, anything that could absorb liquid and I could suck on was used. If not that, any old liquid, including coffee became ice chips or very close to. I found that sometimes drinking liquid as cold as one can stand helps. Only later did I learn of the term "Thermal Stimulation".
So, my final word would be to any and every Dysphagian, THERE IS HOPE. THERE IS HELP. You are not as alone as you think.
To Non-Dysphagians I want to say. Don't judge to harshly. However this may sound, just remember, Dysphagia excludes absolutely no one. Not even you. Not even your tiny baby. Not even your teen. Not even your young adults. A hand to hold and a little understanding and acceptence goes a long way.
I hope my account will be useful for even one person. Then I feel I've started to make a difference to someone.