What does paralysis feel like? 

Before I became paralyzed, I thought it meant that you can’t move, which is frustrating enough, but there’s so much more to it than that. I’m lucky in that my paralysis is ‘temporary ‘, using the word loosely.  In August it will be 2 years since my stroke happened and while I’m doing better with mobility, I am still suffering from paralysis down the left side of my body.  My leg and my arm feel different from each other in that the muscles in my leg felt weak but are getting stronger and the muscles in my arm feel tensely flexed, which causes chronic pain,  but are ever so slowly relaxing. Sounds weird right? I couldn’t have wrapped my head around it before it happened to me. Here’s what the experts have to say about my type of paralysis. 

 That’s what you can expect with the average stroke. Mine was classified as massive. I’m lucky to be alive kind of stroke. I had to wear a diaper for more than 6 months and it’s quite important to be able to roll over onto each side so that the nurses can change it, which I couldn’t do causing extra work and frustration for them. I had to be lifted out of the bed in a sling for 4 months  in order to get showered,which didn’t happen often because it was so much trouble. So it was up to two weeks between showers.  They forgot difficulty speakingin the above diagram. After almost 2 years I still slur my words and stutter, which is incredibly frustrating for me as I had a beautiful  speaking voice and was considered very eloquent before the stroke.  Also, I couldn’t swallow properly for at least 2 months following my stroke. For the first month,  I had a feeding tube and wasn’t allowed to swallow, not even my own spit. Difficulty walking is being kind. I couldn’t stand for about 4 months let alone walk. I still can’t grasp things with my left hand.  Every door way in my place has scuff  marks caused by my wheelchair due to loss of spacial recognition. My brain took until last month to stop neglecting everything on my  left side, hence the scuff marks from my wheelchair. I couldn’t stand on my left leg until I was out of the hospital for 3 months. I still need a hard plastic AFO  (ankle, foot orthotic ) in order to stand on the left leg., which i can now do for about 30 seconds,while holding onto a bar..Weakness is a kind way of putting completely immobile. Imagine trying to move a hair on your head by thinking about it, impossible,right? That’s how a paralyzed body part feels. It took more than a month  for me to be able to move my big toe. Just after the stroke happened,  I was able to feel the sensation of nurses touching my skin, but it felt electric, as if their hands were carrying current and parts of my body were completely numb, my left cheek,and ankle specifically. The sensation became more normal over time, however my left ankle still has spots that are numb, the cheek doesn’t, thankfully, ,but I still have a gimpy smile and I look strange when I talk. Speaking of cheeks, the first muscle I was able to connect with was the biggest, my left butt cheek. It’s not uncommon for the largest muscles to recover first. It took me a long time of thinking about flexing my butt cheek before feeling any movement at all, during which I couldn’t help but feel like a failure… humiliated. Physio therapists like to correct you when you say you can’t move the body part they’re asking you to, by adding the word yet,because it offers some  hope. I got to the point when asked if I could move something I couldn’t  that I just answered yet. Honestly, the recovery at the hands of ‘professionals who are putting on a show of positivity, in hopes that you follow their lead feels like you’re letting them down if you have a bad day.  Then there’s the nurses, saying things like, “how are we doing today? “. Talking down to you like you’re a child, or blowing smoke up your ass when you connect with a new muscle like it’s the best thing anyone has ever done. I honestly believe it would be so much easier to be a long term patient if I were stupid, because the show of positivity and encouragement  felt false and  like an insult to my intelligence. 

As to muscle fatigue and lack of coordination, again we’re being too kind. Of course your muscles are fatigued, you’re trying all damned day to make them react. Remembering that the brain is also a muscle and after a stroke needs to heal, even the brain gets easily fatigued. When you lack balance of course your coordination is going to be lacking. Think about all the tiny muscles that are responsible for balance, when those become paralyzed, it takes a great deal of time and effort to get them back. I’m shocked that more stroke patients don’t fall on a daily basis. After almost 6 months in recovery, I fell for the first and only time, while trying to kick someone’s foot as a joke,  while I was standing. It took 2 nurses to get me up off the floor. I now know the real meaning of the phrase, “I’ve fallen and I can’t get up. 

Now that you understand where I started, let me show you what I can now do. Stay tuned for the next post. 

4 responses to “What does paralysis feel like? 

  1. The condescending in hospitals is unbearable. Thankfully, I get the kind you describe rarely; i usually get treated as if I’m stupid and couldn’t possibly understand, which perhaps is the way many patients appear to behave simply because they are overwhelmed. My parents get most of the condescension because they are elderly. My father makes a point of telling them not to call him “deary”.

  2. Thank you so much for sharing this story. I think that you have become all the more eloquent and beautiful and if I may be so bold to say, strong for your experience. Truly inspirational.

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