The Mighty Logo

When My Illness Causes a Scene

The most helpful emails in health
Browse our free newsletters

The scene was familiar. I had just finished eating a lovely steak dinner with my family when I began to feel the heaviness in my abdomen. The dimly-lit restaurant was fairly busy on this particular Friday night, and there was a constant buzz in the air with waiters zipping past and couples carrying on their own conversations at the adjacent tables. My family must have seen it coming on because I noticed them hurriedly flagging down the waiter for the check. My husband and parents have become experts at catching these symptoms in their earliest phases, as if always on alert for the warning signs.

If you are looking closely, you will notice that it often begins with a glassy look to my eyes, sometimes a tear or two will fall from my right eye. My smile begins to look a little crooked, and I have a harder time answering questions. My responses become short, and I resort to nods and shakes of my head. I try smiling to let everyone know that I am OK, despite all evidence to the contrary. Often within a matter of minutes, my speech becomes child-like. The right side of my face droops, and my hands curl up into half fists. Sometimes there is an impulse to hit my face with these cupped hands. I have been known to say that it feels like there are bugs crawling all over my skin and the need to brush them off is uncontrollable. Other times, the hitting is not directed at myself but at an object in front of me – a wall, a paper towel holder, or my wheelchair. If I am holding a book or magazine, I will violently begin flipping the pages, accidentally tearing them as I go. A phone or tablet is subjected to rapid scrolling and tapping without an actual glance at the screen below. Sometimes my husband will take my jerking hands into his own and hold them; all the while, I fight against him.

This is how my migraines with aura in the brainstem typically present themselves. They are not the quiet, icepick through the skull migraines, though that pain occasionally comes later. These bad boys come on with a bang. I like to think that they want everyone to know they have arrived.

This particular evening, we did not have my wheelchair in the car. The restaurant itself, with gravel leading up to the door, was not accessible, so it likely would not have mattered. We had to somehow move my quickly-fading self from our table to the front door and then to the car.

We’ve adopted a phrase in my family for times like this: strong arms. When my family says that it is time for strong arms, they mean that it is time to move me from one location to another, and during this process they may literally need all their strength. With my dad’s arms interlocking my left arm and my husband doing the same on the right, we made our way to the lobby. I was just barely aware of my surroundings at this point. As is often the case during these episodes, my vision blurred and I faded in and out of consciousness. For years, it was difficult to distinguish these migraines episodes from the presyncopal and syncopal events I experience as a result of dysautonomia. Both manifest themselves similarly and both result in a hangover like effect for hours, sometimes days, afterward. My neurologist tells me that this type of migraine is directly related to the malfunctioning of my autonomic nervous system, so whether I call it dysautonomia or a migraine is sort of irrelevant. It reminds me a bit of the chicken and the egg debate.

There is always the hope that I can make it to the final destination, in this case the car, without collapsing. But on this occasion, I made it as far as the lobby before my legs gave way, despite my companions’ best efforts to keep me upright. I always wonder what these episodes must look like to outsiders. What do the other patrons who are waiting at the hostess stand think of this display? I must appear to have not only physical limitations, but mental limitations as well, since I am often drooling and my verbal communication is impaired. It probably isn’t every day that you see someone collapse to the floor at a restaurant or the grocery store, and it yet it feels kind of normal for me. On a separate but similarly terrible occasion, we dined at a local pizza place and my husband later told me that one of the waitresses asked if I was drunk. I remember this comment really bothering me at the time. Over the years, I’ve come to feel less and less embarrassed by these episodes and to see them instead for what they are – manifestations of an illness that is completely out of my control. Don’t get me wrong, it still feels uncomfortable to be so exposed and vulnerable in these moments, but it’s getting easier. Occasionally, I am so far gone that I am completely unaware of onlookers altogether. And as silly as it sounds, while those episodes are probably the hardest on my body, they are the easiest on me emotionally.

After sitting for a few minutes on a bench in the lobby, we attempted to make our way to the car. Unfortunately, I collapsed again on the gravel. I vaguely recall my worried parents standing over me as I fought to regain normalcy. My breathing felt labored and I began to hyperventilate. Hyperventilating during these episodes is not uncommon for me. It is as though there is such a build-up of pain and frustration with my body that I just can’t seem to come to grips with the total lack of control I have in that moment, and I panic.

I don’t remember what happened next, but if history is any indication, my family likely struggled getting me into my house and into bed. My husband probably helped me out of my clothes and shoes, put my pajamas on me, and gave me something to help me sleep. By this point, my head would be throbbing, but I would also be so worn out that, despite the pain, I could likely drift off.

I wish I could say that this night was a one-off, but I can’t count the number of episodes I have had that are just like this. Gratefully, this past year has been better and the migraines, while not gone completely, have been fewer and further between. I credit this to medication changes and to simply learning to listen to my body when it is telling me to rest.

My mom has told me stories of strangers coming to her aid when I have had such moments in the grocery store. And I can recall a few times where restaurant staff would go out of their way to help me and my family when they saw us struggling. Most individuals though just sort of stare. I don’t think it’s that they are nosey, I think they just don’t how to be of assistance in that situation. And I get that. Because of my experience with this, I’d like to think that nowadays if I were to witness a similar situation, I would reach out to the frazzled family member and just ask if there was anything I could do to help.

We want to hear your story. Become a Mighty contributor here.

Gettyimage by: Wavebreakmedia

Originally published: January 31, 2018
Want more of The Mighty?
You can find even more stories on our Home page. There, you’ll also find thoughts and questions by our community.
Take Me Home