My disabilities are pretty visible. My stroke took away the use of my left side. I lean, I have a slanted shoulder, I have an elbow that kind of juts out a bit, a knee that locks no matter how hard I try to keep a slight bend, and a very obvious limp, among other things. So, you can probably understand my confusion and anger when people give me this feeling like they suspect I am either lying or way exaggerating the many ways my stroke affected me.
I have chronic acute migraines. I have warning signs that let me know when to take medicine so that I can function even if it’s not at full capacity. Sometimes my meds don’t work and I lay in bed for most of the day. I do not need complete darkness or silence though both help greatly. I don’t always throw up but I’ve been known to squish a few chunks down the shower drain with my toe after thinking a shower could help the nausea and sweats. Sometimes my meds work to a point where I can check my Facebook if I feel up to it. I might even play some Candy Crush, dammit. Not every migraine is the same for everyone. Some people are completely debilitated by their migraines; just because the meds I take don’t work for you (or your aunt) doesn’t mean my migraines can’t possibly be that bad. So yeah, sometimes I am able to post on Facebook; but only because my meds helped keep the migraine from radiating throughout the rest of my head, creating other symptoms, like: nausea, auditory hallucinations, sweats and chills, and more. It also helps that you can post to Facebook from bed.
I’m not that one person you know
Strokes and disabilities can happen to anyone at any age. They are caused by so many things, and sometimes seemingly nothing, that it’s difficult to bring around true awareness. People need awareness simplified and when someone tries, there’s a lot of necessary information that gets left out. Because of this, people don’t understand the diversity of stroke/disability in itself. We think of our grandma’s, drug addicts, and people already at increased risk (obesity, heart condition, or some other medical condition) that can lead to stroke/disability. People don’t think about the rest of us because the rest of us are hard to look at and understand.
I’ve been compared to people’s grandma’s, people like Sharon Stone, and other random people I don’t know who have situations different from mine. I am not your grandma. I’m sorry; but, I don’t care she survived 10 strokes and still worked into her eighties. I really don’t care beyond congratulating her survival. Not all strokes are physically or mentally devastating. Some survivors just walk away as if nothing happened. Some are an unfortunate mix. I feel I am more 80/20 like a cheap tube of “beef.” Some people get locked in syndrome; some have weakness post stroke while others have severe weakness. This means that just because your father-in-law has weakness and can still hold a baby with both arms doesn’t mean my severe weakness and spasticity could ever allow it. Gabby Giffords riding a bike doesn’t mean I’ll be able to hop on a Huffy and take off merrily downhill.
So while I might be similar to some person you know that went through something like I did or am going through, I am not that person nor do we have the same situation. I wish people would stop comparing me to their old mother’s even older best friend because her stroke wasn’t in the same area as mine, didn’t have the same cause and obviously didn’t have the same effect. I also am not like the lady with no arms that fed her baby with her elbow nubs. I cannot tell you how deep that simple little comment cut while tears were still wet on my cheeks from struggling to learn to feed my newborn with one arm. You learn but not without frustration.
I see your eyes
Chances are, this is all in my head. I’m a skeptic and a cynic when it comes to listening to people talk. My first reaction is almost always:
Omg, for real? You’re full of shit.
There’s a split second where I believe everything you say and then I instantly doubt you. I think this is what makes me feel people doubt me so much; like a projection of my own supposed response.
I live in the south and I’m somewhat politically aware and reasonably up-to-date on current events. I have this unfortunate habit of scrolling through comments of articles I’ve finished reading and let me tell you, that is a huge mistake. And yet, I can’t stop myself from clicking that cursed “read comments” link at the bottom.
I’m pretty sure this is why I feel there’s a stigma tattooed on my back in the shape of a bullseye whenever people look at me a certain way or I hear it in the way they respond to the symptoms of issues that bother me in front of them or if it comes up in conversation. I hear my in-laws, die hard conservatives, talk about people on the very same programs I’m on as if they are useless individuals. I read these comments on threads throughout the internet and they are so much worse than my in laws.
I wonder how disabled a person has to be in order for people to stop judging them. My biggest disability is easy to see because it causes a limp. But what about when I’m not moving? What about on my “clear” days? What about good weather days? There are other factors that add to my disabilities and there are elements that alter the effect of these factors. These are the pieces, the gears of my disabilities, that people don’t see.
I worry that some people see me and their first thought is why I’m not working. Even with my physical disabilities it can be difficult to tell I am “as disabled” as I really am. A property maintenance man that is familiar with my household noticed my limp after a couple years of in and outs of my apartment. He thought I injured my foot until I explained it’s permanent because I’m “partially paralyzed on the left side.” This is the easiest way to explain my condition; people understand what partially means a lot more than hemiplegia or hemiparesis. A few days later he saw Kasper hold my hand as I stepped cautiously down off the curb then helped me into the car. The f*cker nodded and while this might mean something else, to me, it meant he finally “approved” my disability because he never noticed until shortly before.
The thing is, I go through great measures to appear as though my disabilities are not as much a hindrance as they really are. It’s a constant behavior of mine; a habit, a reflex. It’s tiring but I don’t like to be babied, I don’t like people touching my chair while I’m in it and I really, really hate it when people use their baby voice to talk to me just because I have difficulty moving and they know it’s the result of a brain injury. I prefer to sit while holding my affected hand with my right foot pinning my affected leg close to the seat for two reasons: if I get nervous or experience a spasm I can use my non affected side to keep them in check; and, it’s easier to hide my hip pain while sitting. This means I try to sit as soon as possible after greeting or being greeted. This means with every room I enter I immediately examine the layout and decide if it’s possible to sit out of the way or better to find a place to lean unnoticed yet comfortably. I do my best to avoid walking in a room of sitting people (vertigo; and, anxiety).
I feel like this saves me the grief of having others face my disabilities thus saving me from having to endure that look of misguided sympathy. I feel this also has the drawback of causing people to misunderstand the extent of my disabilities altogether. You might see me struggling to climb a curb with Kasper holding my hand then find me cooking a full dinner later that same day. What you don’t see is the 20 minute nap after the fifteen minute hip massage that followed the 45 minutes of stretching and exercising my leg in between. I might appear to follow a conversation but what you don’t see is my heart racing in my chest as I dance along the border of a panic attack because I’m scared I’ll get lost in your words and look stupid. I might sound like I know what I’m talking about but what you don’t know is that I spent far too much time reading up on the one topic I knew we had in common in preparation to converse with you because I have difficulty retaining nonessential information for more than a day or two.
Disabilities are as unique as fingerprints. Empathy doesn’t require understanding anything more than knowing you don’t want to be where that person is in their life. You don’t have to have “been there,” you don’t need to know someone that’s “been there” and you definitely don’t need to make any sort of false comparison’s in a sad attempt to either comfort or motivate a person.
Yes, I’m disabled. Yes some of my disabilities are obvious and some not; and yes, there are invisible factors to my visible disabilities that can have negative or positive impacts on me. The fact I feel constantly compelled to validate all of this is the most sickening part because of my need to reaffirm within myself that their judgment is wrong and uncalled for.
How is it that I feel guilty for things out of my control?