How to describe what happened yesterday? I couldn’t describe it while it was happening to me, so I have little hope of describing what happened now that it is over and I feel normal. At least, as much as any chronic illness sufferer can be said to feel anything approximating normal on any average day. To the extent that normal equates to average, then today is a normal day.
It wasn’t pain. It wasn’t numbness. I just didn’t feel right. I wasn’t hungry, even though I should have been. I wasn’t tired, even though I should have been. I just felt… off. I couldn’t even put my finger on exactly what was off.
The Wife needed me to help her with errands that needed doing, so I shelved my weird non-feeling that I couldn’t describe and went out and sat at the Social Security office to file paperwork while she went out and did the other things on the todo list for yesterday. Then we came straight back to the house were I forced several glasses of water down my throat and then went back to bed and slept for another six hours.
When I woke up it became clear that the Irritable Bowel Syndrome might have been the cause of the entire day’s problems. I’ll spare you, dear reader, on the gory details that lead me to this conclusion. Needless to say, I felt much better after visiting the toilet when I woke up. I’ll need to remember to force fluids the next time I feel off in some weird way that I can’t explain. I do have a bad tendency to eat when I’m thirsty rather than pick up something to drink, a habit that can make constipation worse rather than better.
I was slowly strangling. I was underwater. A place that can be heaven for me, so long as I can get back to air when I want to. But I couldn’t get back to air. There was a puzzle in front of me. I had to solve that puzzle to get back to the surface and breath. How did I get here? Why couldn’t I breathe?
Oh, something was holding my mouth closed, and my sinuses were blocked. How odd. Why not open your mouth to breath? Underwater? A voice in the back of my head says “you are not underwater, moron. Breathe!” So I open my mouth and breathe, and then I wake up.
The stupid CPAP machine is off again. I don’t know if I forgot to turn it on, or if I turned it off in my sleep, or if the machine is simply failing. What I do know is that this is the second time in a few weeks that I’ve had my sleep disturbed by it being off while I have the mask and chin strap on, and the dream that prompts me to wake up is that underwater puzzle dream. I can almost picture it and the game it is part of, but the image escapes me now. It was so vivid in the dream.
Almost a nightmare. I can’t go back to sleep even though I’ve only been in bed for a few hours. So I get up and pad around. Eat a little cereal, take an antihistamine and an expectorant, try to relax. After a few hours I padded back to bed and again tried to sleep. This time I woke convinced the power was off. I feel back asleep with my hand over the exhaust port on the CPAP mask, reassured that the machine was working by the air washing over my fingers.
…even more reassuring is the knowledge that I will be going in for a recheck of my sleep issues in the coming weeks. Then at least I’ll know whether it is mechanical failure, deteriorating health, or active imagination that is causing the CPAP to stop working sometimes. Fingers crossed in the meantime.
I haven’t been tracking my vertigo spells on the blog. I don’t know why. I think I didn’t want to make everyone reading this suffer through repetitive bouts of vertigo with me by my documenting the episodes on the blog directly, each time that I went through one.
I wasn’t really able to type or even make noises beyond gagging on vomit between requests for someone to kill me in the years of suffering that I endured before being prescribed Xanax and Promethazine, which work quite well to subdue the worst parts of rotational vertigo.
…and after the attacks were over, sometimes two days later, I would be unable to do much more than sit up in bed and eat soup for at least a day. So I would have had to remember to go document the event while still recovering from the trauma of the event. Anyone who has had an intense illness can testify just how much they don’t want to go back and revisit just how hellish the event was later. “…and then I blew chunks all over the bathroom floor. Luckily I didn’t fall back into it when I passed out.” All the pain of a drunken bender without the entertainment of being stupid drunk first. Leave it in the past.
Now that I have a medication regimen down, I just have to deal with the fuzzy-headedness the drugs inflict on me. I’m stuck for hours, essentially staring at a fixed point in space so as to anchor the eyes on something. Oops they’re drifting left again. Find the Catbus plushy. No more drift? Okay, back to writing. Lather. Rinse. Repeat. For as long as is necessary. For as long as it takes to get tired and fall asleep.
This year has been really bad. The worst since I stopped working and could eliminate stress by not having to perform on a set schedule every week. The increase in symptoms started February a year ago and has slowly gotten worse. I’m pretty sure it’s the second ear failing on me, having gone bilateral then. If that’s the true cause of my current suffering, then I should level back out after a few miserable years, and hit a different long-lasting trough of capabilities. I’ll just have to take stock again then, see what I can still do.
In the meantime I’m going to start trying to document each time I get full vertigo. Since I can do it while sitting here trying not to spin, access to the laptop being a qualifier, I’m going to do my best to write something while the vertigo is kicking my ass. I’m going to do this because this blog is for me as well as for you, dear reader. It might be handy to be able to go back and check how bad the bad really was.
This time the vertigo popped right in the middle of the heroic Azshara raid boss fight my current raiding group has been working on for the better part of two weeks. It looked like we might have a good chance of getting her down this week, but I kept getting dizzier and dizzier and missing prompts to go here and there as the mechanics of the fight require.
Just too much screen movement for a day that the eyes want to pretend that the world is spinning around my head. I had to bow out and leave them to their work. Hopefully they did better not burdened by my inability to deal with so much motion on the screen. It’s taken two hours to get the spinning down to the point where I can sit in my adjustable bed and type this simple entry up.
I don’t know how many actual spells I’ve had this year, which is why I’m going to start trying to do this each time I have one. I know it’s the first one in October because it’s still the first week of October, or was until yesterday. But I had at least two in September, ditto in August and it was even worse in July. June wasn’t too bad but that was when the light dizziness really seemed to kick in, May leading into June, and I can’t figure out what is causing this constant near-nausea inducing dislocation and disorientation on a daily basis. It is maddening.
I’m getting blood tests done for allergies this time, betahistine will interfere with the skin tests and I’m not willing to stay off it for a week. I’ve also started some training in vestibular therapy while I’m in physical therapy for lower back pain. I’ll write more on that subject when I know more about it. I just want the dizzy to GO AWAY. But it won’t. So I’ll medicate it away when I have to.
October 9th – Still recovering from the vertigo last night. I’m going to miss two raids this week. Can’t be helped. I’m almost in a vegetative state today.
If you are depressed stop wallowing in the outrage culture. Think happy thoughts, you’ll feel better.
That was the gist of the suggestion offered to a friend who posted the image featured in yesterday’s article Depression. As if depression is something you can turn off, like a switch. It isn’t like that.
I do follow the news closely these days, as does my friend. I was a news hound for decades before Meniere’s took my joie de vivre. I was active in the Travis County Libertarian Party, taking a hands-on role in as much local politics as I could handle while still holding down a full-time architecture job. I listened to news and radio talk shows constantly while working on whatever architecture project was in front of me that day so as to keep informed of whatever the current trends were. It was crucial to know what was happening if you wanted to have a hand in changing it. I switched to podcasts for my news well before most other people even knew that podcasts existed. I read newspapers and news sites. I immersed myself in the political realities of Austin, of Texas, of the United States, and did my best to be the positive change that I thought the world needed. Just as every good citizen of the world should do.
But then I got sick, and I didn’t get better. I didn’t have a livelihood any longer and I couldn’t look forward to finding one again, probably ever. The constant stream of information about what was going on in the world became a distraction from what it was that I needed to deal with. The barrage of things that I couldn’t change externally just drove home how helpless I was to even be able to alter what was happening in my own body.
I quit listening in 2006-ish. I just quit, cold turkey. I’m not saying that I didn’t know what was happening in the world, I simply quit seeking out that information. There is no way to stay completely uninformed (a perfect idiot) so long as there are people who tell you things they think you want to hear. But I put science, medical and skeptical podcasts at the top of my queue starting at about that time and stopped even listening to news feeds that didn’t include other information that I might personally find useful.
I only started back listening to the news directly, for news content, when all the hatred for Barack Obama made me decide to find out what all the fuss was about. That was when I realized that the news culture had split into two camps that couldn’t even agree on basic facts. While I hadn’t been paying attention, FOX had lead conservatives and Republicans down a dark alley that lead to a thousand foot cliff and then expected all those lemmings following them to walk off the cliff in blind subservience.
However, It’s going to take an American version of the Extinction Rebellion protests that have been taking place in London and New York to also take place in everytown, USA to wake the average FOX news watcher up to the requirement that we do something about climate change. I’m not even certain that anything short of re-education will make them understand just how scandalous their behavior and the behavior of their leaders are.
I’m reserving judgement until after the power hand-off that should occur in 2020-2021, impeachment or no impeachment. We’ll see just how bad things really are at that point. To draw this circular argument to a close and tie it in with the title, I quit listening to the news precisely because I felt that my health was suffering from spending so much time obsessing about what was going on in the world and what the proper solution to the problems were. I’m glad I stopped paying attention then. The solutions that I would have embraced back then are completely different than the ones I would embrace today. 180 degrees different.
So I improved my health by breaking the news addiction. I’ll break it again if I feel that following the news is negatively impacting my health. So long as the authoritarians that back the Orange Hate-Monkey lose power, I’m pretty sanguine with whatever else happens along with it. Which means, my depression isn’t based on my news consumption. But I do appreciate the suggestion.
Being depressed is the natural side effect of having a bystander to my own existence perspective on life. How can you take an active interest in something that you are merely a witness to? If that something is your own life? I don’t even know how to describe depression, as I experience it. It is a kind of a funk that clouds up every decision, making even basic self-care hard to achieve.
“The opposite of depression is not happiness, but vitality.”
As Andrew Solomon points out at about the halfway mark in the TED talk above, depression isn’t something that one easily admits to having, even to the people you are closest to. It is perceived as weakness, and one never wants to be seen as weak by others.
But depression isn’t a sign of weakness. It is a signal of despair. A loss of hope. An individual’s response to external or internal conditions that are beyond the control of the individual. Depression is not the fault of the sufferer, but ending depression does require action on the part of the sufferer.
One thing about depression is that it makes it really difficult to access the parts of your life that are genuinely good. For some people, this takes the form of anhedonia–losing pleasure or interest in things you used to enjoy. Not necessarily completely or all of the things, but sometimes completely and all of the things. For some people, this can mean that watching their favorite show or playing their favorite game is suddenly not fun anymore. For some, it can mean that trying to socialize with their good friends feels like reading a really boring story and not being able to actually interact with the story in any way. For others, it can mean not perceiving food as tasty anymore.
Losing my interest in almost everything I ever cared about seems to be a huge part of depression for me. The problem is that most of what I was interested in is now different in experience on the one hand (music is muffled or tinny because of hearing loss) or causes stress, bringing on vertigo (just thinking about CAD or Architecture) and so should be avoided. Even my love of creative writing is subject to this intermittent destroyer of hope. This article, for example. I started it five years ago and then abandoned it for no good reason. Why? I don’t want to talk about my depression, also something that Andrew Solomon points out.
For many people, depression causes a pervasive sense of disconnection from the world and from other people. When I’m having a depressive episode, I feel like I’m not part of anything, like I’m just one person and I don’t matter, like I could disappear and nothing would even change, etc. I feel like there’s a glass wall between me and everyone else. I feel like I can’t do “normal” things like laugh at a sitcom or make someone happy or fall in love. I feel like an alien sent here to try to learn how to act like a human being only I’m completely failing.
I have always been disconnected from the world. I have always held myself apart from the crowd. I never wanted to fit in. I never wanted to join a group or a movement. I was like Greta Thunberg as a teenager, just not as motivated as she is. Had I been born in the last decade, with all this information at my fingertips, I’d like to think that I would have acted as she has. But I don’t know. I’d like to think I’d accept the findings of science on climate change, from the perspective that I now occupy, that of a skeptical rationalist and freethinker. But I could just as easily have been hoodwinked by the fakirs who ply the edges of society today looking to preserve their fossil fuel profits. Once you start shutting out legitimate sources of information, it is a short trip to fantasyland from there.
But because I never tried to fit in, never identified with a larger group aside from the work that I did for a living, being alone in the universe wasn’t something I was frightened of. Wasn’t something I could feel depression from perceiving. Being alone in the universe was the nature of existence for me. I am an alien sent here to try to fit in. Failure was a given, on many fronts.
When the Wife started to become disabled, though, that was a different story. I started to see how people (normal people) build up bulwarks of social interaction that kept them engaged with others. How losing the ability to interact with people on a daily basis was in itself enough to cause depression for some (most) people. I don’t pretend to understand this necessity of social bonding that most people feel. I just know that it is crucial for them, and that losing it is tantamount to becoming irrelevant to the world.
I’m truly am happy, generally, just sitting alone in my office typing away. I’m creating something. Hopefully someone will find it interesting enough to keep reading it. Perhaps that is my point of connection with the rest of humanity, through the written word. That makes sense. Reading has always made me feel more alive than anything else has through my long life. To create narratives for others to read? That is contributing to the social interactions that keep this crazy bus of human existence on the road. Writing is bigger than any one person, by its very nature.
So for me, the most helpful thing that someone can do is to help bring me back into connection with others. This is why I find venting mostly useless. When I’m venting, I’m still only talking about my depression, and while the person I’m venting to may be very kind and a very good listener, this isn’t something we can connect over, you know? It’s not the same as a two-sided conversation about difficulties we’ve dealt with in our lives. It’s totally one-sided. It’s just me, talking about the exact thing I need to learn how to stop ruminating over.
Both the Wife and I seem to dig deeper holes these days, when the depression is talking. When two depressives argue. When we met, I was Mister Sunshine. I had been depressed for most of my teenage years, the results of abuse and neglect, and a complete inability of existing social structures to deal with someone with my unique set of challenges. When I got out on my own, I had a plan of action. I knew what I was going to be doing with my life. I was going to be drawing architecture, creating a sense of permanence for other people through structures that were well designed and well documented. I was convinced that I could change the world, not be the sad person I had been when I was younger. I had a plan and I was going to make it happen.
Then I couldn’t do that anymore, and the guy with the plan suddenly didn’t have any plans anymore and also had no idea how to dig himself out of the hole that Meniere’s had put him in. Which is still the hole I’m in now.
The Wife might argue that the Mr. Sunshine image of myself that I painted above is bullshit, and she probably will argue about it (I predict that she will also have a valid point) But in our relationship I could at least pretend to be the Mr. Sunshine to her Little Rain Cloud, at least when she was in her depressive phase. A favor she would reciprocate for me when I would go depressive as well. We both had our cycles (as does everyone. Even you, dear reader) and I always had a plan to fall back on. Until I didn’t. Now we’re both depressed for large segments of time together, and that is a recipe for disaster. Disaster that we both have to actively work to avoid on a regular basis.
Here are the rules. The person in the center ring can say anything she wants to anyone, anywhere. She can kvetch and complain and whine and moan and curse the heavens and say, “Life is unfair” and “Why me?” That’s the one payoff for being in the center ring.
Everyone else can say those things too, but only to people in larger rings.
Some people say that I should study to become a climate scientist so that I can “solve the climate crisis.” But the climate crisis has already been solved. We already have all the facts and solutions. All we have to do is to wake up and change. And why should I be studying for a future that soon will be no more when no one is doing anything whatsoever to save that future? And what is the point of learning facts in the school system when the most important facts given by the finest science of that same school system clearly means nothing to our politicians and our society. Some people say that Sweden is just a small country, and that it doesn’t matter what we do, but I think that if a few children can get headlines all over the world just by not coming to school for a few weeks, imagine what we could all do together if you wanted to.
Some people mock me for my diagnosis. But Asperger is not a disease, it’s a gift. People also say that since I have Asperger I couldn’t possibly have put myself in this position. But that’s exactly why I did this. Because if I would have been ”normal” and social I would have organized myself in an organisation, or started an organisation by myself. But since I am not that good at socializing I did this instead. I was so frustrated that nothing was being done about the climate crisis and I felt like I had to do something, anything. And sometimes NOT doing things – like just sitting down outside the parliament – speaks much louder than doing things. Just like a whisper sometimes is louder than shouting.
Support groups for the disabled are frequently a lifesaver for people who have limited access to humans with sympathy/empathy for what they are going through. I participate in several online support groups for Meniere’s, the invisible disability that I am cursed with. The image above/right was posted in one of the private groups I’m part of; and when I went looking for the image I discovered it was all over the web in various forms, many of them heartlessly defaced by trolls who think that all the disabled people should get out and get a job, you lazy bums!
In the Meniere’s group where the image was posted one of the commenters asked why the third guy from the right is leaning on an upside down dildo. He made me laugh with his question, and we riffed on that back and forth for awhile. But the question got me thinking, which is why I went online looking for the origin of the image and stumbled across all the troll variations of it and the casual cruelty of the unafflicted that comes with that territory.
International symbology is one of those things that, having once been an architect, I have an inside track on understanding. Here’s what the symbology means, officially:
Blind (universal symbol for services for the blind)
Crutches (injured get preferential access. Hospital signage)
Most of the symbols in the invisible disability image are not standard, but crafted in the helvetica style adopted by international symbology. There is no ISO symbol for missing limbs because that disability is too specific to a particular person not a generalizable disability requiring recognizable symbols that give directions. Well, maybe at the Veterans Administration where they have amputees waiting for years to get care. They probably have queue signage and queues that go on for blocks.
However, the illustrator that created the invisible disability image left off one of the most common disability symbols, the symbol for services for the deaf. It doesn’t fit the theme, but deafness is a pretty common disability and just leaving them out of the image sells their disability short. This is something I’m sensitive to since I’ll probably be deaf one day myself.
While looking for the origins of the illustration, I stumbled across the dildo dude, who can be seen in this Shutterstock image, as well as a couple of the other symbols. I also discovered a movement afoot to update the accessibility symbol with something that looks like it was designed this century, instead of last century, Accessibleicon.org. I can’t say I’m promoting their defacement of standard signage because I have an uncontrollable twitch when it comes to graffiti, an urge to reach out and snap off the arm of the person defacing public property. But I do like the updated symbology. I was never very fond of the old symbol in the first place.
I ran across this article on one of the support groups I’m part of. I have a canned response that I give to medical professionals on this subject. When I go in for the frequent checkups that my chronic illness requires, there is always a mental health assessment form among the many other pages of questions to be answered. Mental health assessment forms that doctor’s offices hand out in a vain attempt to stem the numbers of suicides that occur among their patients. While I’m handing the paperwork in, I hold that page back and get their attention. Then I say,
“I can answer yes to all of these transparently worded suicide prevention questions that you ask, and yet I’m not inclined to take my own life right now.”
One of my doctors has heard the disclaimer so often that he heads me off with the comment “Yes, I know this doesn’t apply to you.” Regulations, you know. I can answer yes to all those prying questions about self-destructive behavior because experiencing chronic illness destroys the well-being of the person afflicted. It can and does destroy your feelings of self-worth to the point where suicide is something that you can contemplate dispassionately on virtually any clear-headed day.
“At least these fucking ears would stop ringing.”
But knowing this fact, that you are depressed due to health problems beyond your ability to control, and that you really don’t want to die right now, it’s just an option to contemplate in the unknown and unknowable future; this depth of self-knowledge removes the probability of taking your own life at the moment the questions are asked. The probability is removed because,
“Yeah this sucks but it ain’t the worst I’ve seen.”
It’s those moments when it is the worst that remain problematic. I know my worst moments. I’ve talked about them enough in the past. It’s those moments that I don’t think about how easy it would be to end it all. I try to think about something, anything else. In those moments I cling to those around me for dear life, because I know that they are the only things keeping me there in those moments.
May all of my fellow Menierians and all my brothers and sisters who suffer from chronic, invisible illnesses find comfort in those times of need. May all of us avoid his fate, if we can. Contact the lifeline if today is your worst day and you have nowhere else to turn. Don’t snuff the candle out and think the world is better without you. It isn’t.
If I could be you, if you could be me for just one hour. If we could find a way to get inside each other’s mind. If you could see you through my eyes instead of your ego. I believe you’d be surprised to see that you’ve been blind.
…at least briefly. I’m starting a entry on what happened and why after I finish typing this up, but I can finally use the right hand without pain again. Two weeks of forced TV viewing has finally come to an end. I thought I was going to lose my mind. At least I still had my podcasts to keep the mind busy in between binge watching all of Better Call Saul, Altered Carbon, Man in the High Castle and finally finishing the HBO series The Pacific. I’ll probably have time to at least start Electric Dreams before I’m fully recovered.
Two of the greatest scientific achievements of my lifetime made the news during the weeks I was recuperating.
Reality provides us with facts so romantic that imagination itself could add nothing to them.