I was thinking the other day that a common problem in my world is that, based on limited knowledge or essentially immaterial personal experience, people think that certain things are easier than I claim, or that I’m exaggerating and they’re less serious than they actually are.
I can think of six examples off the top of my head. These examples are usually met with well-meaning, but useless advice, or a “suck it up, sissy” attitude.
The thing is, I do, in fact, suck it up. I do the best I can. You’re probably going to call me a whiny baby (possibly rightly so), but I write this not to whinge, but so that you might gain some understanding that not everything is as simple as it seems.
Hearing impairment
I’m hard of hearing and have been since I was an infant. I had pneumococcal meningitis as a baby that left me nearly dead, hard of hearing, and with several other side effects which we’ll discuss later.
My right ear is practically useless for anything but picking up that ticking clock on the wall, the hum of the refrigerator, or the tinny music coming from the speakers in a restaurant. I can hear background noise like crazy, but my right ear doesn’t hear anything important.
My kind of hearing fail has a name: nerve deafness or sensorineural hearing loss. Symptoms include:
- Problems hearing when there is background noise.
- Some sounds seem excessively loud.
- Difficulty following conversations when two or more people are talking.
- It’s easier to hear men’s voices than women’s voices.
- It’s hard to tell high-pitched sounds from one another.
- Other people’s voices sound mumbled or slurred.
People seem to think that, because I can hear Candle In The Wind pumping from a tiny speaker in the ceiling, obviously, I should then be able to hear the person directly in front of me. Not so. I am not making this shit up.
So, some advice for you hearing folks out there: face the person you’re talking to when you speak and try to enunciate clearly. If someone asks you to repeat what you said, please don’t repeat it with the same tone, volume, mumbliness, or while facing the other direction. Thank you.
Insomnia
Another side effect of meningitis is insomnia. Wee! I’ve been an insomniac since I was born. First, because I had meningitis, and afterward, because impaired sleep is a long‐term consequence of both bacterial and viral meningitis.
It is a life-long side effect of an illness I barely managed to survive, however, people think I’m just not trying hard enough. I can’t sleep because I sometimes read in bed. It’s because I don’t have a steady enough sleep schedule, I’m not doing enough headstands, meditating, or praying hard enough to Vishnu. I can’t sleep because I’m not exercising enough or chewing enough Valerian root.
Believe me, I have already tried every damn thing you could possibly recommend, because I have had insomnia my whole life and I always will.
Memory loss
I was clobbered on the head with a stage light when I was in my late teens. The traumatic brain injury damaged both my short-term and my long-term memory. Since my brain was still growing at the time, I was able to recover a lot of my memory function, but not all. My short-term memory is still spotty and I lost most of my childhood memories altogether.
It was way worse at the time, but to this day, people don’t really believe me when I tell them that I don’t remember this conversation or that time we went scuba diving or whatever. Right after the accident, I could forget something that happened only a minute ago. By the time we ended a conversation, I had already forgotten how it started, and as soon as you left the room, I might forget that you were even there at all.
Since I seem functional otherwise, people sometimes really do not believe that I have no memory of certain people, places or things.
Graphic Design
I’m a graphic designer for a living. It’s an occupation I kind of fell into. I didn’t go to school for it and I’m entirely self-taught. Before the internet, it used to be a good job. Nowadays though, with Gimp, Pixlr, picmonkey, and a gajillion other apps, people think graphic design is as easy as making a lolcat. It is not.
It has taken me years to hone my craft in order to draw something like this freehand in Illustrator:
That is not a picture that has been photo-manipulated. That is a lovingly-crafted, hand-drawn vector image with hundreds of layers of my beloved 1970 Skylark named Tank.
Graphic design is not as easy as running a picture through a filter. It is not free; it takes tools–expensive tools–much knowledge, experience and skill. Yet, people don’t realize this because they made an invitation to Tommy’s 3rd birthday party online.
Depression
I have Major Depressive Disorder, or chronic depression. People tend to think that, because they were depressed when their dog died, that they know all about it.
I’ve written about the difference between acute and chronic depression before, so I’ll just quote myself:
Grief sucks. Acute depression sucks. There’s no doubt about that, but grief fades with time. It doesn’t recur. Day by day, the initial loss of Gran becomes less painful. People who experience grief and acute depression eventually do get on with their lives. There’s nothing wrong with their brains. Grief is a natural symptom of loss.
Chronic depression doesn’t work that way. No amount of time will cure it. It doesn’t even necessarily require a traumatic life event or loss to trigger it. We cannot simply “get over it.” Exercise, meditation, medication, sleep… none of these things will cure it. Chronic depression is a lifelong thing and it never entirely goes away. Ever. It just goes into remission sometimes.
Telling a depressed person to change their diet and exercise more is like trying to cure cancer with sleep.
Migraines
I have had migraines since I was a kid. I still get them, though not as frequently as I did during childhood. I always wake up with them. The last one I had was a few months ago. They are entirely serious business.
Most people have no idea what a migraine even is. They think of it as just a really bad headache. In the lowest common denominator sense, that’s true, since a headache and a migraine both cause your head to hurt. However, a headache is to a migraine as a paper cut is to having your arm ripped off in a thresher. Yes, they both involve pain, but not even remotely the same level.
When I have a headache, I pop some ibuprofen, eat some food, and drink some caffeine, hoping that trio will help while getting on with my day. It usually does help to some extent.
When I have a migraine, I spend all day in a darkened room holding my head to keep it from exploding like a frag grenade while trying not to move, because movement sends intense shooting pains everywhere. I cannot tolerate the mildest noise nor the dimmest light, and even water makes me vomit. All I can do is lie there in the dark, hoping that, despite the unrelenting pain, I might manage to fall asleep for an hour or two. A migraine is absolutely debilitating.
Do you see the difference?
Whenever someone tells me to my face that they have a migraine, I have to shake my head, because if you really had a migraine, you wouldn’t be able to tell me about it in person. You would be laid out in your darkened bathroom, trying not to throw up for the nth time that hour. You would not, could not, be out and about telling me about it in person. It’s physically impossible. The best you would be able to muster would be a quick and dirty text message like, “migraine cant come”.
Headaches are no fun. I should know since the trade-off for not having multiple migraines a month anymore seems to be an almost omnipresent low to mid-grade headache, but I think it’s a fair trade. I would rather have a headache every day of my life than have migraines on the regular.
Fish Of Gold 