Just kidding, it’s all beautiful. But the good and the bad… which should I start with? I think I will get the bad out of the way first and finish up with the good. Never nice to end on a sour note I figure.
My doctor’s appointment yesterday morning was especially draining because it started with a physical examination — a suite of neurological and muscle assessments. Nothing too unexpected other than the fact that I have a lot of left/right asymmetry which I was not aware of, but I hate being reminded of it all. It wasn’t all bad I suppose — with the exception of the muscles in my upper legs, the most affected ones, they’re all able to fire properly and while they are weaker than they should be, they are at least “following instructions”.
In some ways I’m having more trouble dealing with the prosopagnosia (which auto-correct amusingly wanted to make “preeclampsia” which might be even more medically worrying in my case) — a disruption in my ability to recognize faces that might be better described by some other “delusional misidentification syndrome” (but I want to be real clear that neither I nor any doctors believe that I show any signs of dementia or anything in that realm — I am as sane and grounded as I could be given my circumstances) because it’s not so much that I can’t recognize people, it’s that the recognition circuit is completely tucked and I recognize everyone. There are no strangers. But the people I recognize could be people I know, people I know but from different time periods, people I dreamed about, myself, myself from different time periods, or even fictional characters. It makes me hate going out, trying to figure out who people are. Every time I recognize someone and I can’t figure out who they are by secondary characteristics (only faces are affected), I’m filled with a real sense of panic. Even when it’s something I know makes no logical sense — for example, if I notice that I am sitting across from myself — I can’t shake it. I look at individual features, and can tell myself that they aren’t right, that it can’t possibly be who I think it is, but as soon as I look at the whole face, it definitely, definitely is. Even if I know it’s not.
I know that maybe that sounds quirky or fascinating character trait but I assure you it’s nightmarish. Every single time I experience recognizing someone, correctly or incorrectly, it’s accompanied by a jolt of terror.
Let me pause with an appropriately psychedelic animation I saw on Colossal, a great art blog. It’s a promo for an online used bookstore that apparently donates all of its profits to Oxfam. The animation though really makes me want to get back to work doing some myself. I plugged my tablet back in recently for the purposes of drawing, so everything is ready to go.
I have other neurological symptoms that I don’t feel like talking about right now but they also link with the same regions of the brain. I don’t want to hope that I’m having a nervous breakdown, but I really, really hope that I am. I would much rather that this be a treatable psychiatric symptom due to stress or pain beating on me, than have it be the other options. Option two is that it’s related to my central apnea. I am told that people with regular oxygen deprivation can hover on or straddle the line between asleep and awake. As I have already written here, I have been feeling more and more like my dream world and my waking world are intersecting, so maybe that’s true — I am slipping into a dream state in my waking life. The third option is the least pleasant. My doctor tells me that the embryonic tissue that forms muscle is the same tissue that forms brain matter, so when someone has a genetic problem with one, it’s not unusual for it to cross over. Since I have a known genetic abnormality causing my muscles to be replaced with calcium grids, I could have a similar progressive brain damage. I hope that’s a long shot, but just like it took hold in my thighs and spread from there in the muscle, it may be taking hold in the temporal lobe and spreading from there in the brain. Hopefully I’m just stressed out though.
We (my doctor, really) have been fighting for follow-up with experts and additional tests since December and it’s extremely frustrating feeling like I’ve been blacklisted. I know my doctor is as frustrated as I am, and I’ve overheard him calling the labs and specialists begging for appropriate follow-up to no avail. I get that specialists can take time to see you, but a callback isn’t asking too much I think… And how long should I have to wait to be given a date for EEG, ECG, and CT (with contrast and angio may complicate it, but still…)? In the past it’s never been more than a few days.
That’s enough of that.
But now the good stuff!
I feel like I’m in a funny place, because as much as I’d have no real complaints if I died in my sleep, and as there hasn’t been a day in the last year where if you asked me at day’s end if I want to do that again the answer wouldn’t be “no”, I still almost always look forward to tomorrow. I have so much I want to do and see and I am so excited about the future, both for my own life and the greater path of humanity. It’s a funny albeit worrying paradox to have so much passion for life while also preferring to be dead! The spirit is willing but the flesh is weak, right?
Anyway, I had a wonderful visit from my daughter, beginning rather late on Thursday night due to an extremely delayed flight. I was extremely happy to show her that Jeff Lemire, the artist and writer behind the brilliant comic “Sweet Tooth” that we both enjoy had sent us a gift of an original drawing of the main characters of his comic (which I again must highly recommend). First thing on Friday we took it to be framed, and then visited the doctor to deal with a lagging “hundred day cough” that she’s stuck with. After that we stopped by her old school to say hello to all her friends and teacher, and were thrilled to discover that it was the pre-March Break “Game Day” and she was invited to spend the rest of the day there — I don’t know if she was more excited or her classmates were, but they were all on cloud nine. Then at the end of the day we took the subway downtown, picked up some Cotton Candy Pink Manic Panic hair dye, had sushi for supper, and went to see the live show “Potted Potter“. She was shrieking with laughter for the entire show and even got called up on stage to be one of the seekers in a game of Quiddich!
The stuffed-with-activities weekend continued on Saturday when we met up with an old friend of hers (probably one of her oldest friends that we still know) and her father and big brother. All of us (Caitlin too) headed down to the SkyDome for “Spring Fling” (still running if you need something to do with kids). They’ve set up a carnival with rides and games and other activities inside the dome, so they had lots of fun going on various rides, and we even saw a magic show and both of them were separately called up on stage. After that we went to Licks to have burgers and milkshakes for lunch and I made the mistake of eating my very thick vanilla shake with a plastic spoon. At first I thought there was somehow ketchup on my spoon when I noticed the red mixing into the icecream, but it didn’t take me long to realize that the sharp edge on the spoon had made a dozen paper-cuts in my lip and my mouth was hemorrhaging blood. Yummy nonetheless. We finished up by seeing “The Lorax” movie, which I thought was absolutely horrible but the kids seemed to enjoy at least. After this long day we went home, had spaghetti and meatballs, and then read for a while before bed.
(Thanks Hamish for the pictures)
On Sunday we had a bit more time in the morning and then all went downtown again on the subway to the new opera house to see the “Sleeping Beauty” ballet. To be honest, I think I enjoyed it the most, with Nefarious being rather bored by the end of it (she much preferred “The Attacker”) and Caitlin re-affirming that she’s no fan of ballet (whereas she loves traditional opera, and worked in opera for years). Then we went out for sushi again for supper, and when we got home we did what Nefarious has been asking for a year to do, which is to dye her hair pink. She wanted to do much more, but we started with just a streak. After applying it, I wrapped it up in foil and she decided to keep it on over night.
Monday morning we unpacked her hair and rinsed the dye. Even though we didn’t bleach her hair and Cotton Candy Pink is quite pale as colors go, it took well and looks really nice, so I hope she’s happy with it and it gets the reaction she’s hoping for at school. After that we grabbed the framed print, since it was going to be heading back to Virginia with her, and it looked amazing properly matted and behind glass. However, in the end it was a bit too bulky for her to carry and I’m going to find another way to get it to her. Then we packed, and since it timed nicely and was on the way to the airport, went to see a second movie, “John Carter” this time. I definitely enjoyed it a great deal more, even though it’s a very “PG” adaptation of the story, and Nefarious thought it was super as well. Then off to the airport where we were glad to see that the plane was on time and schedules were met.
(Zoom in for a better look)
I think it was one of the best planned and fullest weekend visits we’ve ever done! I had an amazing time and so did everyone else. If I’d been struck by lightning on the way home Monday night I would have died happy and content… As expected, no lightning and I woke up Tuesday miserably sore (and continue to be), but it was and is worth every ache.
Edit/Update: Since writing this, this afternoon I downloaded and watched the first episode of the TV show “Awake”. For those that don’t know it, it’s about a guy that’s in a car accident with his wife and son. One of them is killed. Problem is, he doesn’t know which, because he’s caught in a state where when he’s awake, his wife is alive, and when he’s asleep, he has a perpetual and self-consistent dream world in which his son is alive. Problem is, he has no idea which is the waking state and which is the dream state. I don’t think that I mix up when I’m awake and when I’m asleep any more than everyone does, but I do have a persistent and self-consistent dream world which I think is unusual, and I feel like I have a lot of “leakage” between the two… so I’m interested in seeing where this show goes because I like the premise. With some time to wait before “Breaking Bad” starts up again, and “The Walking Dead”‘s season wrapping up this weekend (damn short seasons!), I could use a new show to enjoy.
