What You Should Know When I'm Temporarily Paralyzed Because of My Movement Disorder

What do you mean you’re paralyzed?

Like, I can’t move right now.

How is that possible?

That’s an excellent question.

This was the beginning of a conversation between me and a friend a few nights ago when she witnessed, for the first time, a very real and scary manifestation of my movement disorder: temporary generalized paralysis. I’d never been around other people when a paralysis tic had hit, so this was a first for me as well.

I was actually paralyzed before she and another friend came over to my apartment that night. I was sitting on the ground leaning against my couch, so at first glance, it wouldn’t have looked like anything was wrong when they first walked in. But, as the night went on and they realized I wasn’t standing up or moving hardly at all, they finally asked me why I wasn’t. I simply told them, “I’m just paralyzed right now.” One of the friends there knew this was something I dealt with, but she had never seen it before. The other friend didn’t know anything about this, all she knew is that I have a movement disorder, but I haven’t really been able to share with them much.

After I told them that I was sitting on the ground in very uncomfortable positions (feet curled up, arms seized up against my chest, wrists bent, shoulders shrugged, etc.) and unable to move, they asked me a couple of very understandable questions that I was happy to try my best to answer. They started off by asking if I was OK, and I told them I was. I could still talk (mostly), and I wasn’t in any significant pain other than just tension in the joints that were curled, so I was OK in that respect. They asked if there was anything they could do, and I said there wasn’t and that we could just resume our night as normal. We did for the most part. Every now and then one of my friends would notice that I was sliding towards the ground and she would, after asking permission to do so, grab me and pull me up to sit me back upright. It probably looked very awkward, and we laughed about it, but it was actually one of the nicest things someone has done for me.

Towards the end of the night, one of them said something that, again, is very understandable and relatable:

I just can’t wrap my mind around you not being able to move. Like, how does that work?

I wish I had a satisfying answer to a question like that. I can’t wrap my mind around it either, and it’s my mind that’s doing all this work. I don’t know why my muscles contract so severely and so long that I’m stuck and unable to move. I don’t know why my body does the things it does, or doesn’t do the things I want it to. What I do know is that my friends handled a very uncomfortable and unusual situation, for all three of us, very well. It seemed they had never had an encounter like this before, and it was new to me as well trying to figure out what to say and not say to them. They were supportive, helpful, and kind to me.

However, I’ve realized that this story is not going to be the only one in my life like it. There will be other times I go paralyzed around other people, and I need to be prepared to make clear what I need at that moment. So, there are a couple of things I want to detail and make clear about what to do and know in a situation where you encounter someone who is experiencing a paralysis tic as a result of a movement disorder (there are a host of other medical conditions and situations that lead to people being paralyzed, but I can only speak to the context of movement disorder-related paralysis):

Recognize the discomfort of the situation

Speaking just for myself, I would never expect anyone in a situation where they are with me while I am paralyzed to be totally 100% comfortable. It’s a strange experience and I recognize that as the person who is in that state of paralysis. I also know that it is especially challenging for people who I see often, since 99% of the time they see me walking and moving around without issue. So, to see a close friend be curled up and frozen in place would be difficult for me to see, and I don’t expect anyone in my circle of relationships to try to deny that. For me, the best thing anyone in that situation can do is be honest with themselves and me, because that will make everything that follows a lot easier.

Continue to interact and engage with the person just as you would under normal circumstances

I hesitate to use the phrase “normal circumstances” here, but I will simply because it makes the most sense. When people encounter me while I am unable to move, having difficulty speaking, and perhaps even in significant pain sometimes, I’m still the same person I was an hour ago when my body wasn’t doing those things. I don’t look for pity or sympathy or platitudes of “I’m sorry you’re going through that.” Those are all well-intentioned, but they don’t do much for me in that moment. I’m still me even when I’m paralyzed, so you can still speak and engage with me as if I am.

Ask before helping

This one can get complicated very quickly, so for me, there is a lot of room for grace with mistakes. However, as a general rule of thumb, it isn’t the greatest idea to just jump in and “help” how you think I need it. There is a possibility that whatever you are trying to do actually doesn’t help at all or may make the situation worse. It’s just best to ask first, then respect the answer. Earlier I mentioned my friend had helped me by grabbing my torso and pulling me up so I wasn’t sliding onto the ground (which was severely hurting my back). She asked if she could touch me first, and I said yes, then asked if I would be more comfortable if she pulled me up. I gave my consent, she did exactly what she asked she could, and no more. That happened a couple of times that night, and she asked each time. That is what I am looking for. While I cannot speak on behalf of all people with movement disorders and people who experience paralysis, I know there are those out there who share that sentiment.

Now, I did say this one can get complicated, and I will give an example of when this rule isn’t so clear-cut. I normally can still speak clearly when I am having a paralysis tic. However, that is not true all the time. Sometimes my jaw starts to clench, my tongue can start moving around sporadically (that is a different kind of tic, separate from the paralysis), or my neck could be seized up so much that speaking hurts. If I’m unable to speak, and you ask to assist me in some way, I won’t be able to answer.

What then? Well, it depends on the situation. If, for instance, that exact same scenario I described above were to happen, where I was slipping to the ground, but unable to communicate verbally that I needed help, should my friend still have helped me? Different people will have different answers to this, so do not take my perspective as the universal one. For me, I would’ve been fine with her still helping. She was not doing anything that had the potential to hurt me, so the worst-case scenario was that whatever she did was not going to help. I would’ve been fine with that, but not everyone would.

There are also other ways to get my consent, and it requires some creativity. For example, it’s somewhat common for people who are paralyzed and cannot verbally communicate, but can still understand what is going on around them, to be asked yes-no questions and told to blink as a signal for one or the other. I’ve also seen people do things such as establish that a grunt means yes when presented with a question, and no grunt means no. This is usually a system that people will establish with their close ones in advance so that it is clear what to do, but if my friends had done something like that, it would’ve given me a way to consent to help without speaking.

Follow-up

This is true for people who encounter my paralysis for the first time and whom I see frequently. The more my friends and family know about what to expect when I’m paralyzed, the better we all are. We can establish permanent “what to do” plans, like the situation when I cannot verbally communicate that I described above. After a particular tic is over, I don’t mind engaging in a conversation about what the people with me can do next time. I’m also happy to field questions about what just happened. The better prepared I and those around me are for my next tic, the easier it will be for everyone.

The opinions I just shared are mine based on my experiences and perspectives. Though I know there are others who share similar views to mine, don’t assume that what you’ve read here is true across the board. Movement disorders on their own are shrouded in mystery and stigma, so I always encourage people to ask me questions about anything I experience. I find the more I talk with people about them, the less alien the reality of movement disorders becomes. Paralysis as a particular manifestation of these disorders can be one of the scariest and dangerous, so it is understandable that conversations about it would be considered sensitive and may not happen as often as they should. But, it is my opinion that we need more open and honest talk about temporary paralysis, because it helps everyone know what to do, what not to do, and ultimately will lead to the best end result for that person experiencing the paralysis.

Paralysis isn’t fun. Let’s not hesitate to talk about it to make it a little more painless.