Social Networking with Grandma

I spoke with my grandmother this morning. She related a story about siting in a busy doctor's reception recently; everyone in the room except her was on a mobile (or 'touching their phones' as she put it). She said that, as an elderly person without the technology, it's often isolating in that kind of situation as there are people all around but nobody is present

I considered as she spoke (note, distracted from the actual conversation with her and thinking instead about the technology), someone should make an app that connects mobile devices in close proximity with a peer-to-peer chat. People in waiting rooms or packed trains could then communicate about what's happening in that place, share pictures, link up on social networks, just generally get to know each other. It could work over WiFi as the devices can already call out and find each other in an ad-hoc network.

My grandmother, when I attempted to explain this to her, just said, 'or they could just...talk to each other.' Well, there is that; how quaint. 

Remembering Pain

I've been thinking a lot about pain recently, physical, psychological and even what I would call spiritual pain. I've experienced all these in measure. In the late 1990's I had a procedure to correct a congenital defect in my chest wall (basically my sternum was crushing my heart and lungs together, which is not really a good thing). It's called Pectus Excavatum and used to be corrected by opening up the entire chest cavity, removing a portion of the ribcage altogether, reshaping this and then putting it all back together again (the Ravitch Procedure). This is, of course, a very invasive operation. However, were I to do this all again, it's what I would opt for. Instead, I had a newer, minimally invasive procedure (the Nuss Procedure). The Nuss Procedure has the benefit of only two small incisions on either side of the chest; much less surgery time, blood loss and all the related risks. The surgeon places a curved steel bar under the sternum and inverts it which pops everything into the correct place (sorry, 'pops' isn't the best word to use there; there are not a lot of good colloquial words to use when describing orthopedic surgery that don't involve some cringing). The bar then stays in place for a year and a half to two years whilst the bones learn their new shape. 

This all sounded well and good; but I was among the oldest patients to receive this relatively new procedure at the time (optimal age is in the early teens). In my 20's, the bones and connective bits had already hardened to their adult form. Unfortunately, this meant the procedure itself and the recovery following were painful...extraordinarily painful. 

I'm going to post below an extract from a letter I wrote to friends a couple weeks after the surgery then follow up with some other thoughts on the nature of pain and recovery. I'm thinking about this for some other reasons now that aren't related but there are a lot of things that I haven't shared about this particular procedure that might be useful for people in the same situation I was in.

I'm beginning to taper off on the meds now and can actually sit down and concentrate for more than a few moments. After eating only narcotics for a week and coming home to the same, one's mental state is altered slightly left of normal. I had planned a reading list for the hospital stay but found I was unable to concentrate at all on words (actually, in the hospital, the words would not stay still for me to read them.) If some of this letter makes no sense, I place full blame on modern medicine.

It is 9:36 a.m. right now; two weeks ago today I was in the O.R. having a fourteen inch steel bar run across the width of my chest under the sternum. Within the hour I will wake up in the recovery room in an extraordinary amount of pain. Fortunately, I remember nothing from the recovery room. Apparently I woke up and began violent convulsions; they gave me pain medication called Demerol (Pethidine) which I reacted to and went into respiratory depression (my breathing slowed way down). A couple hours later I remember waking up in my room with the doctor standing over me saying that the surgery was successful and he was pleased with the results...and, yikes, I was still in a lot of pain!

I had an epidural tap to reduce the bulk of the pain. An epidural is similar to an IV but it is inserted in a space along the spine. It has to be placed very precisely. When I woke up, instead of my chest being numb, my arms were asleep. Somehow the end of the tap had been misplaced after the surgery (perhaps when I was trying to launch myself out of the recovery room) and the drugs weren't reaching the right set of nerves. So the pain team (led by Dr. Napoleon Burt--if you need pain management, he is the man) set me up in bed (aaaaarraraaag!) and repositioned the tap. They were pumping a morphine derivative called Dilaudid (Hydromorphone) in the epidural. I was a little concerned about having narcotics pumped into my system but am exceeding glad of them. I had 10cc/hr. through the epidural and whatever else I needed for "crisis pain" injected through my IV of some other form of morphine. Even after that I was really in agony sometimes. The first few days had some gruesomely painful episodes. On the first day Dr. Burt told me that I had chosen one of the top three most painful surgical procedures to undergo (somehow nobody mentioned that bit-o-trivia beforehand.) It was not the movie kind of pain where a hapless character has his legs bitten off by a creature from the 8th dimension and screams out the big cinema cry of pain. It's this pain where you can't cry or scream or move to release any of the psychological pain that the mind is going through as well. I found names for the different kinds and levels of pain. There was the always the sore tightness across my chest (almost as if someone had gone in with a metal bar and stretched out all the muscles and bones). The most frightening time was the ten minute window I had before the onset of crisis pain. There was a certain pain that would begin and build into the feeling of someone carving off my chest with an old electric turkey knife. Once that pain began, there was no going back to the base level without a lot of drugs. I'd call for the nurse immediately and she would shoot a dose of morphine into my IV. Oftentimes that was not enough though and I'd just be there in bed writhing. The next step was a heavy dose of Dilaudid; as this is a really powerful opioid, it would knock out feelings of anything for an hour or so. The problem with that drug was, once it was administered, my breathing rate would slow down to 10...7...4...3...LOUD ALARM...breaths per minute. It begins to shut down the involuntary reflex centers of the brain. So my pain was gone but I would have to think "breathe, breathe, breathe." If I dozed off the LOUD ALARM would sound because I was forgetting to breathe.

After a few days the pain team was able to generally regulate my discomfort and it came time to remove the epidural tap...perhaps we should have left it a bit longer. By the way, it was a little celebration every time I had another tube taken out. I had the regular IV, the epidural, a catheter for (well, you know), a tube in my chest to drain out extraneous fluids and air, and various sensors attached for monitoring cardiac and respiratory function. Once I could get up, it took several minutes to disconnect me from everything and go to portable mode. Even then I was trolling around with the IV stand in one hand (the IV and epidural pumps were these hi-tec computerized deals) and this clear bag-o-pee in the other while all these wires from the sensors trailing behind.

 This is the bar that was in my chest; there was a smaller stabilising bar running vertically as well  .

This is the bar that was in my chest; there was a smaller stabilising bar running vertically as well  .

Then the epidural was removed (Saturday). The idea is to put the patient on the medication he is to go home with and see how he does. I didn't do well. The first line up of medications made me really nauseous (I say really nauseous because they we giving me an oral anti-nausea medication along with one in my IV and a patch behind my ear--I was still vomiting up the works.) Also note that I hadn't really eaten till then either; I was puking Canada Dry ginger ale and Jell-O. I didn't realize that one can actually projectile vomit (launch vomit with ballistic force across the room). I soaked down Dad and a couple nurses more than once. Of course, it was exceptionally painful to vomit; it felt like somebody punching my right in the sternum. So we got on this cycle of medication, nausea, vomit, pain, medication...at some point someone inadvertently ordered another dose of Demerol, the painkiller that I reacted to in recovery. My skin turned red up the vein that my IV was in and I began breaking out in these fiery blotches all over. We couldn't figure out exactly which of the meds was causing my nausea; we kinda found out when I took a 400% dose of one and had an upchuck frenzy. So we switched around several of them and tried this anti-nausea medication used for cancer patents taking chemo (Zofran, take one pill every 4-6 hours as needed...5 pills, $148!).

I didn't leave the hospital till one week after the surgery. Even then I was still sick (I don't remember the ride home) and uncomfortable all over (my bowels went to sleep--ever go a week without, eh...). I don't remember a lot of what happened during the stay; I was heavily medicated most of the time. For several days afterward, I could taste medication and was still hallucinating (whoa, had some wild times with that too). Fortunately, I'm tapered way down now on the medication and have a voracious appetite. I'm back home in WV at my parents for now. I'm still generally sore and can't lie down flat but every day marks an improvement. I have breathing exercises and am gradually going up to my expected capacity (I'm at about 1/4 right now). The lungs have to be trained to use the extra space now provided. The bar seems to have stayed in place; except I can occasionally hear a click-click where the metal and ribs are still making arrangements for living together. And, of course, I no longer have this big dent in my chest. I'm still rather slim but much more aerodynamic now.

There is more to relate about coming to terms with the everyday pain I experienced over the next year and a half with the bar in as well as what medications can do and how that can effect one's perception of pain and recovery. I'll write more about that in the coming weeks. 

Latching on and liars

I have an ability to define my own space in the city; I can stand in a crowd of thousands and still maintain my own boundaries. However there is a particular form of boundary interruption that tests my limits; I’m not sure what they are actually called, but it’s the people on the street who are attempting to get you to join…something. Unfortunately, I seem especially unable to avoid encounters with them. I’m not sure if it’s that I look approachable (or perhaps gullible). But these people latch on to me and won’t take no for an answer no matter how much I protest I’m not interested in even talking to them. Unfortunately, my work is right next to Central Station in Sydney and there are usually a phalanx of them standing at the entrances waiting for passerby possibilities.

I am just not good at turning people away in these situations because they are often smiling and pleasant and I don’t want to seem rude (I am seriously trying not to obtain the permanent ‘do not interact with me in any way’ city scowl face). However, today, I was approached by a fresh young faced representative of [well known Australian not-for-profit which I shall not name]. I made clear to him that I didn’t want to stop and speak and kept on walking. He walked with me. I said I really didn’t want to speak. He persisted; ‘Haven’t you heard of XXX?’ ‘Yes’ I said, ‘I am a member’ (which, in fact, I am) and I walked on. As I walked away, he said, ‘Well I know that’s a lie.’

I stopped. For a moment, I’m sure there was some deep desire to unleash righteousness upon him, but I just quietly said, ‘no, really; I’m a member already.’ Then I walked away; I walked away really hurt. I wasn’t so much hurt for myself, though I had just been called a liar by a complete stranger on the street. I was hurt at just another evidence of the ‘civility drain’ that seems so evident all around. Smokers blow smoke into the crowd at crosswalks. The loud music listers on the train. The people who do…all the other things…on the train. Why did that at all seem like an appropriate comment for him to make? Why, in the first instance, was it not my right to say that I did not want to stop and talk? Who is he to define what boundary choices I make?

As I came home, I reflected on what effect this same scenario might have on others. Were I a violent person; I might have reacted aggressively if challenged. I might have attacked this fellow for calling me a liar. What if I rarely went out and had issues with being in public to begin with; I might have completely withdrawn for weeks from an incident like this. I did come home, call the organisation he was representing and cancel my membership. I realise that it’s a large organisation and that one voice on the street does not represent the whole. But I explained to the membership rep on the phone what had happened and why I was withdrawing my support.

Organisations cannot harass people into support; I do wonder how many people on the street just delight in the approach of someone attempting to garner their dollars as they go to the train at the end of a busy work day. I am sure that insulting the potential (or current) member is not a good strategy at all.

In the midst

I am still here, somewhere. No, wait, that’s a really sad way to start a weblog entry.
I made time some weeks ago to have a two day retreat at a monastery to get some clear head space. There was some of that and some serious consideration of a couple things that are really alive in my spirit at the moment (in both positive and negative ways). What I haven’t had is the space to really resolve or process these things in a satisfactory way. I am determined though to get into a routine of physical and mental practice. I’m going three days a week to yoga and beginning to meditate regularly.

Meanwhile, we’ve started a new campaign at the Teachers Federation and I’m the defacto social media manager. We filmed these ads a couple months ago; they are running right now on Australian television and cinemas. I’m managing the twitter feed @TFtmd

Misinformation

My web host is changing hands and, for whatever reason, I’ve not been able to access the back-end of my weblog for weeks now. However, it seems to be back and I’ve got some things to write about in the next few weeks. Meanwhile, here is a bit of political satire I wrote and filmed last month at work.

Speaking from the silence


I attended Quaker meeting this morning; somewhere down the street a group of high spirited people had either a very late night party from Saturday or an early start to this evening. As we Quakers attempted to sit in silence, our neighbors worshiped to techno and modern ballads (there was a story about questing for ‘booty’...perhaps something involving pirates).

This was…distracting. I am focused on this shared spiritual experience with my fellow Friends; open to the Light that resides in…Boom-Shick Boom-Shick Boom-Shick Boom-Shick Boom-Shick Boom-Shick Boom-Shick. Remember when there were we were the way toooooo remember whennnnn!

So I began to consider distraction itself and what it means to avoid it, confront it, and carry a quiet space within. In my work at the Teachers Federation, I have a recording studio. In it is a large steel box with a padded room inside; when the door is closed, it’s completely silent and one is isolated from all noise and distraction (the box is literally separated from the building itself, it ‘floats’ on rubber pads). I’ve jokingly noted to my collegues that, should they feel the need, they are welcome to close themselves inside for a while and carry some quiet space away when they leave. This is, in effect, what Quakers attempt to do collectively in Meeting. We come together for an hour of quiet to share of it in itself and then carry that away.

Yet, we’ve the tendency to covet the quiet space itself and forget the world outside. I know this morning, I became irritated at the outside sounds that were intruding on our silent considerations. Don’t you people know we are doing the important work here? We are…Zweeeeeeeeeeeeooooo! I am on the star! I am on the star! I am higher than the star! I am slightly left of the star and somewhere out in space! In Space!

I then considered what a recording studio (and the Meeting) is truly for. It’s not about the quiet space; the space is built so that something important can be clearly heard there. When there is something important to be said at Teachers Fed, someone with the voice steps into the silence and speaks. It’s about having a space for clarity so that others can hear without distraction; it’s not about the speaker himself or herself. It’s not really even about the experience that he or she has in that space. We go into the silence to speak what is necessary; there is the need for preparation, for pacing and quiet contemplation. But, in the end, all the work of building a place of silence is moot if nothing is spoken within is then spoken without. We have to bring the quiet voice out of the silence and into the world.

This is something I struggle with personally; I’m drawn to the quiet spaces and tend to avoid the messy cacophony of life. Part of this is my nature (insert long conversation about introversion and extroversion, hard-wiring of the brain, studies with chimpansees, etc.). But there is always choice involved as well. I then end, this morning at least, I chose to embrace the distraction, stand, and speak to the Meeting what I related above. The distraction became the Light speaking and, though the silence was broken, the voice heard in the end was that of a shared experience we carried away together.

Voices of the Living and the Dead

These past days, since I wrote my last post, I’ve further considered the active voice, what is it that I have to say and how can I equip others to speak their stories? I am, at this moment, the most equipped I’ve ever been to do this. In my ‘day job’ at the Teachers Federation I’ve created a full production suite and recording studio. This will allow me to pull in all manner of interesting folks and amplify the stories they have to tell. 


I wrote my dissertation on the concept of stewardship. Stewardship is this all encompassing idea (it must be, we cannot rightly be stewards of only one part of nature or culture; the neglect of anything touches on everything else). I’m considering what I hold in my own stewardship. I read this morning an essay by Jay Allison on Transom.org. Jay has become an of Elder of Stewards for National Public Radio and writes here about holding in care the actual voices of people:

I co-produced the wonderful series Lost and Found Sound with my friends the Kitchen Sisters. Sometimes, I would listen all day to the voices of dead people. The listeners who would call our Quest for Sound line would describe their old tape or phonograph or whatever contained the voice of their loved one and say, “It’s all I have left,” as if it were an actual part of the person, full of life and breath. And in a way, it was. The connection to the remaining voice is not at all like a photograph, it’s much deeper. Sound has the ghostly power to enter our bodies, unbidden.

The playwright Marsha Norman talks about a time after her husband died, finding a plastic blow-up beach ball in the back of the closet and realizing it contained her husband’s breath. That resonates with me. It reminds me of the kind of power we hold in our medium.

There is something about our voices, the sounds that we make and take for granted. Each breath has so much potential for changing the course of a conversation—or in different circumstances, the course of a life or the lives of many. Breath and spirit have the same root in Greek, pneuma (yes, I did pay some attention in that one semester of Greek). I’m considering making a sign or writing this to people before they come in my studio. The breath you take in and give out here is an expression of your spirit. You breathe in and live; what you exhale speaks from your soul. I record our voices here in this place and the spirit of this will resonate out from here—and may for years to come.

It’s easy to get caught up in the technicalities of this stewardship (the stewarding of expression and spirit). I’ve taken time to pick out the right microphones, amplifiers with glowing tubes, and made diagrams of how to connect one box to another. But I must take greater care to get caught up holding on to the spirits of those who come into this space, to go beyond the mechanism and into a realm where we can encounter one another and the real substance of the moment we share.

I know that this sounds almost preposterous as the balance of what we discuss is the political activity of a trade union. Most of the people who step into the studio aren’t there to speak from the spirit and share our connection with the Universe. But I think that has to be my intent, otherwise I’ll just sit in a box recording people reading off lists of legal advice and oppositional statements to government decisions. I have to have the presence of mind and spirit to bring it somewhere deeper.

Also, this is again the ‘day job’, I realise that I need to build a body of work separate to this as well. Not so much for professional reasons, but to keep my spirit connected and grounded to other matters that are important. I have to be a steward of the opportunities I’m given in all aspects of life—and hold them for those who will listen.