Super Bon!

After all the talk of corking, there was no cork. I wore tape all day, gradually re-learning to breathe through my nose and mouth without the help of an extra airway (I was allowed to remove the tape if I couldn’t get enough air). As I mentioned last night, the difficulty is not breathing in but exhalation, probably because there’s a giant tube in my trachea that’s now blocked. Struggling to exhale is a strange sensation, though. Like the inverse of drowning. It got easier as the day went along, and prompted by a resident who said i should do more to push myself, I was close (though not quite) to full speed in the halls and late in the day on the stairs. My next test, which begins now, is to make it through the night with the tape. We shall see what morning brings.

This one will be brief as I’m beat. This morning, they tried to “cork” me, which is what it sounds like. You put a “cork” in the trach tube to force beeathing through the nose and mouth only. I had a hard time breathing out–probably because my trach is still pretty big. Later in the day I was “taped” — an imperfect solution but more practice for corking than anything. I’ll spare you the details but it was a difficult and I’m pretty sore. Here’s hoping tomorrow’s corking goes better.

Today I spoke for the first time since February 12th. Technically that’s not true since in the ICU they got a “1 2 3 4” out of me on the 15th but I was under heavy sedation. Apart from that, I have been communicating with a pad of paper and with keyboard devices when given the opportunity.

I got my trach downsized first thing this morning and it makes a world of difference to my swallowing, my breathing and my speaking. I can plug the hole and breath through my nose in and out, and my voice sounds more or less like my voice. Not quite as good as before surgery but certainly worth feeling good about. Or rather it did at 7:30am. By the time my mom left for the airport at 2:15, it was pretty hoarse (though still not as bad as after the surgery in November). Totally worth it. Also, the taste thing seems to be subsiding. If I am lucky, I will be drinking water tomorrow like a normal person and off those insipid thickened liquids (there will be test results in the morning). But there is more weird diet stuff for me in the near future.

I’ve been scheduled for Radioactive Iodine Therapy (RAI) on March 10th at the Jewish General, which is great. The sooner, the better. I do not want to be fully recovered from surgery only to get beaten back down again. I’d rather take my shots now and then do all my recuperation in one shot. RAI can also mess up your taste buds and offers a number of other unpleasant side effects which I won’t bother detailing, but there you go. It’s 2.5 days in isolation and at the end you have to throw out your clothes. Both my cats went through it, except if I’m lucky I’ll find a way to have internet. In preparation, I will be on yet another special diet, so locals please hold back on the food gifts for now. When I get home, it’s going to be all “vegan low-iodine chef” for awhile. I will make it be better than it sounds.

I just downloaded WordPress for iPhone. They do think of everything, don’t they?

For better or worse, I have settled into a routine here. Part of that is coercive– no full blinds and they come and wake you up at all hours, because in hospitals theories of pharmacology trump those of sleep.

But I am also a creature who imposes order on my environment (Carrie is this way too). The hospital room began its life as bleak and drab as any dorm and I guess dorm living is the model I bring to it. Certain zones for certain things. We’ve got a couple posters up (Carrie’s idea) and have rearranged things as best we can. Today after waiting since Wednesday for a chair, I just stole one. I assert control over space in other ways, assuming control of an ever growing range of functions that used to be done by orderlies and nurses.

In this way, the hospital is like any other modern institution in that roles tend to aggrandize themselves and occlude other roles. Another way of thinking is that like the student, the draftee or the convict, the patient enters the hospital, is stripped of external subjectivity (initially), placed in the system and then developed, sometimes allowed to become self developing in certain directions to occupy a niche (the staff are perfectly happy to let me look after myself but I won’t be getting the keys to the medicine cabinet.)

I’m good at institutions and so since Friday have begun using those skills (as has Carrie with our systematic campaign of staff food bribes). The result? Better niche. At the same time, class privilege can backfire. I can’t speak but I can write. But what if my orderly does not read very well in English (or any other language)?

Okay, long and rambling and full of typos and hard to edit but we will see how this develops.

Updates: thanks to all who mocked me on pain meds. It turns out that codeine and Ativan go very well together at bedtime.

Also, I keep discovering stuff about the area of my body below my eyes and above my armpits. For instance, my taste is all off, I keep finding numb spots and I can breathe in through my nose but not out. One friend wishing me well before surgery said “it would be just like Avatar except you’ll wake up in Jonathan”. Boy was that right!

Weekends here are pretty quiet, which is actually kind of nice if you’re going to be trapped here. We had a couple visitors and the neighbors complained about the laughing (wasn’t mine–I’m inaudible).

The latest news, though still unofficial, is that I will be home, with my neck sewn (back) shut, by a week from tomorrow. But of course that’s an estimate and a lot can happen between now and then. I’ve been taking pictures of the place and documenting it, as not everyone winds up in the ostomy ward. I also have lots of thoughts on socialized medicine, hospitals as modern institutions, and all the usual academic banalities that I want to compose. But right now I’m just happy for internet tethering. Meantime, I was thinking of doing a “gross Q&A” post where all questions of that sort could be dealt with, if there are such questions. The pain is fresh, the hole is new, so ask away and I’ll answer later in the week. Plus everyone else who is too freaked out can just ignore that post.

People are not shy about suggesting pain medication around here, and so I am actually going to upgrade a little bit tonight in hopes of improving sleep. Believe it or not, I’m down to chewable Tylenol right now.

Well, it’s more like a slow amble up and down the hallways of the 18th floor of the General, back and forth. At least 4 times a day. Through the miracle of tethering, I have managed to get onto the internet with Carrie’s laptop and type something, and I am probably breaking a rule. Didn’t Foucault say something about hospitals and jails?

Anyway, I have been gradually coming back to personhood over the fast few days. 2 days in pants. 24 hours narcotic free now, though the tradeoff is, well, pain. My neck feels like it has been rearranged. Because of course it has. There’s a new hole in my head. It’s hard to describe the “new tracheostomy feeling” but I can offer an exercise that probably works for any major body modification. Imagine a range of things that you would find it disturbing for others to do to your neck. Now imagine that you’ve become comfortable with half of them. Congrats, you have accepted your new trache.

I still can’t talk at all. In my head, it’s all logorrhea (see: this post) but all I have is a pen and a pad of paper. And gestures. I sort of eat and drink, which is better than the prior arrangement. And everyone seems optimistic that I will leave the hospital without a tracheostomy at all. But right now that could be a week away or longer, and will probably end with me still coming back here to sleep for observation but going out on “day passes” (like jail). And nights are the worst part of being in the hospital.

All I’ve had time to do is think and listen to music. Tom Rice’s work on sound in hospitals convinced me that the risks of bringing in an iPod were well worth the possibility of theft and the music has been a lifeline. On a tip I downloaded the new Massive Attack album and while it’s no life changer like the 90s stuff, half the songs are really, surprisingly good. Lots of spacey electronica too. Also it’s been an avenue of exploration as it turns out I am one of a small group of people who experiences vivid visual hallucinations with dilaudid (I’m not sure I will write about them here but I will be happy to describe them to anyone who wants to know–now I understand bad heroin art a little better, and I will not soon forget them though I’m happy to be past that stage). I’ve also written what feels like books in my head. They sure were interesting at the time though I am somewhat skeptical of their longer-term potential as next-project potential as the opiates exit my system.

A smartphone is even better in that regard and now that I’m 100% lucid, I will be gradually getting back on line at least as a consumer. I will finally watch the Yacht Rock series on YouTube.

There are a million other things I want to say but it’s not yet time to say them. I just want to say thanks to everyone who has written, paid attention, or been able to arrange a visit. Getting sick is a quintessential experience–it’s intensely depersonalizing, personal and national all at once. It has meant a lot to me to hear from everyone, and even when I was only a little lucid and had just gotten out of effectively 3 days in anesthesia, Carrie was reading to me from emails and it was great. So thanks for that. I will now be able to read emails directly, so you can write to me and save Carrie the trouble of mediation, though you can write to her too. Obviously, I’m not “back in the office” and have no interest in what lies in wait for me at work, but it seems that being in touch is good so I’m going to roll with that since I’m in here for a good few more days. So I would be happy to hear about your life. Apologies for necessarily short responses when I’m not sitting at a laptop which is definitely not staying with me in the room.

Anyway, maybe I’ll write more in a day or two when a) there’s real news or b) I am inspired. I could do 1-liners via the iPhone, I guess, but there’s Facebook status update for that.

Jonathan has made great strides in the past two days — needing less and less pain meds, up and walking laps through the hospital hallways, and fully able to bathe himself and dress. He’s no longer on any IVs, and has had his feeding tube removed, which is a relief. Interestingly at Montreal General, you eat by ordering room service. I literally pick up the phone in his hospital room, and order from a menu of food options that include several vegetarian choices. Amazing. I can’t tell you how tasty it is. Jon is just happy to be eating on his own, so it all probably tastes good. Everything he eats has to be thickened, so his apple juice is like pudding. Mmmm…..

We thought Jon might get a smaller tracheostomy tube today, but it sounds now like he’ll get a smaller one on Tuesday, with the idea that he will no longer need any tracheostomy by Friday the 26th. We are hopeful that this will be the case. With a smaller tube he’ll do more breathing through his nose and mouth, and be able to move more air through his vocal chords, enabling him to speak.

All in all, he’s doing remarkably well. Will make another update in a day or two!

–Carrie