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 incredulity; 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.
I’m hard of hearing and have been since I was an infant. I had a severe case of pneumococcal meningitis as a baby that left me nearly dead, hard of hearing, and with several other side effects 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 in the other room, 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, e.g. the person speaking right in front of me.
My kind of hearing fail has a name: Nerve deafness or sensorineural hearing loss:
The inner part of the ear contains tiny hair cells (nerve endings), that change sounds into electric signals. The nerves then carry these signals to the brain. Sensorineural hearing loss (SNHL) is caused by damage to these special cells, or to the nerve fibers in the inner ear. Sometimes, the hearing loss is caused by damage to the nerve that carries the signals to the brain.
Yet, people think I’m making this shit up. They think that, because I can hear Candle In The Wind pumping from a tiny speaker, obviously, I should then be able to hear a person directly in front of me, as if hearing loss is as simple as you hear or you don’t.
SNHL doesn’t work that way. Symptoms may 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.
I am not making this shit up. I am hard of hearing. Face me when you speak and enunciate clearly, please.
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.
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.
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 online photo editors, 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 at Evite.
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 are yet another meningitis side effect. Meningitis is the gift that keeps on giving. Though, at least part of it is genetic since both my mother and my sister experience them, too, just not as frequently as me.
Most people have no idea what a migraine even is. They think of it as just a really bad headache. In a sense, that’s vaguely true, since a headache and a migraine both cause your head to hurt, but 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 to the appendages, but they’re not even remotely the same level of pain.
When I have a headache, which is actually almost all the time, I pop some Advil, eat some food and drink some caffeine, hoping that the combination of all of the above will help, all while getting on with my day. It usually does 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 and trying not to move because the slightest movement sends shooting pains everywhere. I cannot stand the mildest noise or the dimmest light, and even water makes me vomit. All I can do is lie there in the dark, hoping that, despite the overpowering pain, I might manage to fall asleep for an hour or two. A migraine is absolutely crippling.
Do you see the difference?
I have had migraines since I was a kid. I still get them, though not as frequently as I did during childhood. I usually wake up with them. The last one I had was a few months ago. Migraines are unpredictable and strike without warning. They are entirely serious business.
Whenever someone tells me they have a migraine in person, I have to laugh because if you really had a migraine, you wouldn’t be able to tell me about it. You would be laid out in your darkened bathroom, trying not to throw up for the ninth time that hour. You would not, could not, be out and about telling me about it over lunch. It’s physically impossible. What you have is a headache.
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 (also the result of meningitis and most likely the traumatic brain injury), but I think it’s a fair trade. I would rather have a headache every day of my life than have regular migraines.