When I opened my eyes…👀

I opened my eyes, realising I’m in a hospital bed. It was a small room with white walls and me in the middle. Mr P was by my bedside and just as my gaze met his ”Klaudia if you can hear me and understand what I’m saying look towards the door”. I’m thinking that’s easy, still in shock, not knowing what is happening. I cannot move or talk. I look towards the door and he smiles😊. Only now I know how important this moment was..my family knew I was still ME! Speaking to my fellow stroke survivors I know that being able to communicate is crucious. I was so lucky that Mr P could tell everyone I’m still in there! From speaking to other stroke survivors or from reading their books I know that not everyone was as fortunate as me. Kate Allatt for example (the image above is taken from her motivational speeches), is a very successful stroke survivor who I had the pleasure of meeting (but I’ll come back to that in my later posts). I remember her book being read to me in ICU, she was thought to be in a vegetative state, in other words ”not there” for nearly 2 weeks before her family realised she actually was fully aware. Can you imagine being able to hear and see everything around you but not being able to let people know? Don’t assume people are not cognitive to understand everything just because they look like they aren’t.

This is something I learnt and won’t ever forget! If you think I didn’t have it easy, I will suprise you and tell you that you’re wrong. A girl called Victoria Arlen was locked-in for 4 years! That’s right, 4 years of just listening to everyone around and being with your own thoughts, not being able to move/communicate at all. At least I could voluntarily move my eyes-Blessed! I’m definitely going to make a whole post on Victoria, because she’s an inspiration. I don’t know her but I follow her story until now and she had a huge impact on my life!

**Victoria Arlen locked-in (left) and (right) after a journey to recovery that lasted a whole decade**

The same day in the late afternoon my other grandmother comes in and starts talking to me: “Don’t worry Klaudusia (a cuter version of my name, used mainly by my grandparents ☺️👨‍🦳👵), everything will be fine. I spoke with the doctors and they know what’s wrong…you have a Guillain-Barré syndrome (GBS), and they will be moving you to a bigger hospital for testing. I sigh from relief and smile (in my head), because given my scientific background I actually know what GBS is. I wish I could of hugged her back then, but I couldn’t even show any face expression, I was just looking at her…that’s all I could do…

💡Guillain-Barré syndrome (GBS) 💡 is a rare neurological disorder in which the body’s immune system mistakenly attacks part of its peripheral nervous system—the network of nerves located outside of the brain and spinal cord. GBS can range from a very mild case with brief weakness to nearly devastating paralysis, leaving the person unable to breathe independently. Fortunately, most people eventually recover from even the most severe cases of GBS.

Everything about GBS 👇

https://www.ninds.nih.gov/Disorders/Patient-Caregiver-Education/Fact-sheets/Guillain-Barré-Syndrome-Fact-Sheet

I knew that GBS causes paralysis and typically you recover fully in time. Funnily enough my thesis was on Campylobacter jejuni, a bacteria found in chicken that can cause GBS, so I remembered coming across a lot of studies on this topic. What’s most important, I now knew what I had and what’s even more important this was only temporary…well that’s what I thought…

The nurses got me ready and I was on my way to a different hospital for testing and brain scans. Another trip in an ambulance, for this one I was awake and I can actually remember it. I was holding onto the thought that I woul be completely recovered in a few months time…at most!

🦋 “Not everyone thinks the way you think, knows the things you know, believes the things you believe nor acts the way you would act. Remember this and you will get along with people…” 🦋