🦋 People with Locked In Syndrome (LIS) may not be able to speak or answer to their name, but they can still hear your words and feel your kindness…🦋
January 2015-GCR Repty 🇵🇱
When I arrived at the rehabilitation centre in Repty, I was assigned a Speech and Language Therapist (SLT). I was seeing her every morning to do some breathing exercises, as well as mimicking letters of the alphabet. I liked sessions with Ania (that was her name, in English it translates to Ann). I liked her approach, she treated me like a friend, and we “talked” about everything. I’m putting the word talked in inverted commas again, because I couldn’t make any sounds 😶👀, I just nodded and smiled for the first (nearly) 2 months there🤦🏻♀️🙄. Being locked in 🔒 was so awful, and by then it was like 4 months of being null by mouth! 😒😩 I was really sick of it, and when doing the exercises without any sound coming out, I couldn’t help but think of that Speech and Language Therapist back in the Neurology ward, telling me I would probably never be able to speak again 👀😢. But Ania believed in me, she was very passionate about her job-and I love that in people. I remember she was planning her wedding back then, so she would tell me all about it, and show me the wedding dress. I am a woman 💁🏻♀️, and I love anything to do with fashion 🥰👗👠, therefore I was all in!
The WOW moment 🤩
One morning in January of 2015, we had our session as usual. I was just mouthing letters of the alphabet, soundlessly😶👀. Ania then asked me to whisper the letter A, and then with all the efforts try to shout it out!! 🗣Aaaa, 👀 OMG! I can’t believe it! Her face dropped 😮. I could definitely hear the sound Aaa, right? 👀, or is this just a dream? Pinch me! … We both couldn’t stop smiling ☺️😊🤗 “try again”-says Ania, yes! I was making a sound! 🗣Aaa 🗣Bbb 🗣Ccc… unlocked 🔐🔓! Straight away we called in my dad and Mr P! They were ecstatic!
There was no stopping me then 🤷🏻♀️… I’ll never forget shouting at the television, watching the European Qualification Tournament for the 2016 Summer Olympics. The Polish Men’s team played in it, and that was SO exciting for me to watch. Especially that I love volleyball 🥰🏐 and they were playing very well too 🙌👍🇵🇱! “POLSKA, BIAŁO-CZERWONII”! 🗣🇵🇱 I screamed at the 📺. People, especially my fellow stroke survivors always ask me how long it took me after this to improve, and be able to speak normally again? To be honest, I feel like for me it was just a case of getting the sound out again?! Because after that day I could pretty much say anything 🗣. I even remember reading some Polish tongue twisters to my granny over the phone 📞 (🇵🇱“W Szczebrzeszynie chrząszcz brzmi w trzcinie”🙈🙉😂, all the Polish people definitely know this one). I’m actually going to attach a video of some Polish tongue twisters below 🤗🤭👇. It was much slower at first and slurred, but that didn’t last very long. Every stroke is different. For me, I didn’t have to learn how to talk again, I remembered everything, but waiting for the sound to come out was the KEY 🔑. It took 4 LOOONG months! 🔐🔓🗣 #beatinglockedin or should I say BET locked-in 👊💪
🦋PLEASE DON’T JUDGE PEOPLE. You don’t know what it took someone to get out of bed, look and feel as presentable as possible, and face the day. You never truly know the daily struggles of others…🦋
My advice to anyone reading this, that is a parent, a partner, a friend, a doctor, a nurse, a carer, any staff/family member caring for/dealing with someone with a Locked-in syndrome (LIS), or a person who is nonverbal due to maybe a coma, autism, etc. Nonverbal doesn’t mean that a person has nothing to say 👀😶, it simply means you will have to LISTEN with more than just your ears!…Never assume someone “isn’t there”, just because they’re nonverbal, or maybe have their eyes closed! They might just seem like they cannot hear you, because there’s no sign of any communication. I know from my own experience and read, heard of so many stories…recently one of the girls caring for me, a qualified nurse told me such story when I was telling her about the time I was locked-in. Sometime ago, when she was working as a nurse in Intensive Care Unit (ICU) back in her country, she was caring for a young guy that was in a coma-I don’t know the details, but he had his eyes shut, as well as being nonverbal. Of course all the staff there would treat him as a patient in a so called “vegetative state”, just doing their job, without addressing him whatsoever 🙄 I use a metaphor of “a factory worker” treatment-just throwing a person around carelessly, like a piece of meat 😠. Except her, she used to speak to him about what was going on in the world, the weather outside, or just very simple things, like describing what she was doing to him at that specific time. Not thinking much of it, telling me she just wanted to be nice and treat him equally to every other patient-not knowing if he could even hear anything. Well…it turns out that he did 👂🏼! The first thing he said when he woke from his coma was 👀 “who is this girl, who always spoke to me?”. To cut long story short, he recovered, went on to study in college and they’re still in touch today. I loved that story…I love when she said “I didn’t care if he could hear me or not…I just acted like he could”. More medical staff like her please! With me they knew well I could hear everything, processed everything without my cognition affected at all (that’s LIS🙄🤦🏻♀️Very cruel condition), even my eyes were always opened and reacting 👀, yet very few people treated me “normally” 🙄. Actually I’m able to speak now again, and I still come across care staff who don’t address me…”does she need this?” -Emmm Hello 🙋🏻♀️ I’m right here, I can talk, and you can just ask me?! Nothing annoys me more 😠🤦🏻♀️…but if sometimes I’m still treated like this, I can only imagine how the nonverbal people feel! I’m their voice today in this post. I got my voice back for a reason 🗣💁🏻♀️🦋 #StillMe
🦋 There needs to be a lot more emphasis/focus on what someone CAN do, instead of what they cannot do…🦋
🦋 Donations 🦋
Donations will go towards further rehabilitation costs, and also in support of my creative work. The next BIG step on my journey to recovery is the body weight support system therapy 👣💪. Thank you in advance for all your help and support! Klaudia❤️🦋