A Day in the Life...

A tense ride on 93-S to Boston. Why at 10:00 am is there such a backup? Tom alternates between vomiting, moaning, and falling asleep. We try to hold his hand while he vomits. We try to make sure he’s breathing, that it’s genuine dozing, not unconsciousness. Not that he’s ever slipped into unconsciousness on our watch, but you never know.

It all started a couple days ago with a peculiar headache. Localized to above the left eye, this came on out of nowhere. While it was uncomfortable, Tom was able to go to school and also get to a couple of appointments including physical therapy. But by Friday morning, the pain became intense, the intensity brought nausea, and then vomiting. Early morning call to Boston, they say to bring him in to the clinic office (as opposed to the ED, where he’d sit for too long).

High blood pressure was suspect. Now Tom has never had problems with either a headaches or high BP until this week, so this is all new, and frankly, quite scary. One of the first things Tom whispered to me in the early morning was, “do you think I’m having an aneurism?”

Dear God, I flippin’ hope not.

Hours later, Tom is resting in a room on 10 South, his usual floor. And to think that just three days previous, he and I were visiting a friend recovering from surgery on the Northwest wing of this same floor. I know Tom was enjoying being a visitor for a change, instead of a patient. Now he’s the one in the bed. Again.

Oh look, a uniformed officer stands guard at a patient’s doorway in the room across the hall. It’s not the first time I’ve seen a cop or hospital security standing in the doorway of a room, either on a floor or in the ED, you know, big city hospital and all that. (It’s never clear though, exactly who is being guarded, the patient, or everyone else and darn-it, I’m too polite to stare.)

I’ve been in this place many times, to paraphrase Leonard Cohen, “I know these rooms, I’ve walked these floors”. My moods are variable, and yesterday I was more depressed and on edge. I am taking a lunch break in the lobby, and I stare with half-focus at the constant stream of people walking in all directions, to and from elevators, main doors, the CVS, etc. 

I guess they all fall into different categories, but there are certain visitors that cause me to drop my gaze, avoiding eye contact. These are the moms and dads with paper name labels stuck to their shirts. These labels have just a last name, and it means that they have a child undergoing surgery upstairs on the third floor. Sometimes these parents look nervous; actually they almost always look nervous at some level. But there’s another look I sometimes see, something I read as their whole body shuffles along in slow motion. They are shell-shocked. These are the people I can’t bear to watch, because I see myself reflected in their disorientation, in their fear, in their exhaustion. I don’t want to be reminded of my own pain. 

I definitely have no problem reaching out to someone who needs help. I’ve joined in the 60 second elevator commiseration thing with random people. I’ve had long conversations with other parents in the surgical waiting room. I’ve compared notes with a dad in the common kitchen while we were searching for the last grape Popsicle – 

Me: “yeah, my kid has a nasty GI infection”

Him: “my kid has no stomach” (said with no anger, just matter-of-fact grace).

"Watching the Machine" Sculpture by George Rhoads. Manhattan, NY. - Beyond My Ken.

But when I’m really in the tense frame of mind, I have to be selfish and turn inwards. As I side-step the stroller-bound kidlets staring up with mouths agape at the somewhat annoying perpetual motion machine, as it clanks and chimes, clacks and dings, I get weary of the sameness of the routine. As this huge sculpture perpetually entertains new crop of patients and their families – I just want it to be all over with – I want at least a diagnosis, and at most – to not be here at all.

I feel trapped inside that huge 12 x 6 x 14 cage of wires, balls and brightly colored shapes. I’m moving on a path not of my own design, and there’s no natural conclusion, just the same thing, over and over. Or maybe another way to look at it, the path is NOT clearly laid out, the way it is in George Rhoads’ sculptures. Sometimes it feels more like Disney World’s Space Mountain. Huge dips and swirls, but it’s all in the dark. I don’t know that’s ahead.

I don’t know which is worse.

Dark Blogging

I have a friend who blogs quite regularly. The posts are typical slices of life – glimpses into day-to-day activities and family stuff. Not boring at all, more like ‘comfort blogging.’

Heart in Darkness

Also the delivery of these scenes, the writing, is good. Sometimes joyous moments are recounted, and sometimes concerns about family members and friends darken this writer’s heart. Either way, it’s a good read. And at some point I think they mentioned the term “dark blog.”

Now I’m not sure what actually happened, but the premise was that this friend was starting a secondary blog, to write about private things. Things that weren’t meant to be shared with anyone. Or perhaps by anyone who could actually identify the author.

Now, this friend’s current blog does mention plenty of private things, but they are different. Not too different from some things I blog about. Sometimes painful things. When I post in this space, of course I know it’s public, but there’s still a sense of anonymity. Crazy idea, that. My justification is that I can be more of myself here. On Facebook I have to be a bit more careful. I have certain family members, peers, and some young people that I don’t want to offend by cursing or ranting against uptight conservative Republicans. ; )

But if someone stumbles across this blog and sees my flinging of the fucks and more, well – I didn’t actually invite them here. It’s not like I’m flaunting it.

And of course, the above is really some degree of bullshit. I have linked my blog on Facebook, and it’s also part of my email signature line. So, perhaps the invitation takes a more passive-aggressive approach – I dunno.

But the point is kids – I like the idea of dark blogging. A place to really examine what gives me anxiety, stress and even shame. I know what that is, it’s called a diary. No one is supposed to read a diary; it’s just the private musings of the author and beyond that, no one else.

But we take to the internet, the most public of forums to express the most private horrors. The vastness of the Ethernet seems like a safe place for confessions. I think it’s because we really want someone to read our thoughts. For commiseration or validation, or even punishment – we crave that connection that we can’t get with diary.

I will say that – and wow this makes me feel old – but those young kids are braver than I. Either they don’t care about filtering, or decorum, or whatever, but it feels like their blogs, vlogs and social network postings are SO much more personal than what I’m capable of, for good or for bad.

Maybe it’s because Gen-X,Y,Z have figured out at a younger age something very, very important:

Don’t worry about what others think about you! 

By not caring too much about what people think, I'm able to think for myself and propagate ideas which are very often unpopular. And I succeed.
- Albert Ellis

Or something a little different, but still applicable:

“Fashion fades, only style remains the same – Coco Chanel

And of course:

Conformity is the jailer of freedom and the enemy of growth.
- John F. Kennedy

Look at the Alternative

Funny but true exchange between the mammogram technician and myself:


MT: OK, now put your right sleeve in and take your left sleeve out.


Me: (trying to use humor to deflect the awkwardness of the situation)  Sure, but just don't ask me to "shake it all about."
MT: (laughs)
(pause)
Me: "Only if you have some $1.00 bills to throw at me"

MT: "Well, I guess we could get some people in off the street with their dollar bills."


Yeah, seriously this happened.


Mammograms suck. But look at the alternative. 

While I was getting mushed and tugged at, and at times I gasped from the discomfort, I kept saying to myself, even when it got quite painful. "You can do this. It hurts, but not as bad as cancer"

Notes to Self - Under Glass

It sounds a bit maudlin, but I can identify with Sylvia Plath somewhat. I never see it descending, but at some point I realized that the bell jar is already covering my existence, creating a distorting view of the outside world. My experience of life is skewed, voices are muted through the thick, bubbled glass of situational depression.

One event that hovers outside the jar is an upcoming vacation. We're just going to the trailer on the Cape, so no airline weirdness or strange climates to consider or worry about. But still, clothes need to be washed, other details need to be attended to, and we have a whole bunch of new items to bring this time, with all of Tom's tube feeding paraphernalia. And there is still, a great deal of paperwork to take care of in the next few weeks. But the whole idea about getting ready to go seems like something not quite within my grasp. Like maybe it's an episode on a TV show that I stumbled onto. Mildly entertaining, but no identification with my real life.

But since I know that our departure is in the short future, I'm trying in my muted, bubbled over way - to make lists of things to do. Lists upon lists, and notes to myself about what to bring and what to do before we go.

Sleep is something I need to do, because health and a cheerful attitude is something I need to bring, not only on vacation, but with me everywhere.

Cinematic Goodness

Some gems to share:

One Flew Over the Cuckoo's Nest - directed by Milos Foreman, 1976.

Jack=Hollywood Gold. Sure, we all know that.

But don't forget Louise Fletcher as Nurse Ratched. She captured the character's manipulative, controlling, and sadistic demeanor masked with sweet-faced concern perfectly. No wonder she took home an Academy award for her work. And Danny DeVito - fantastic. And Christopher Lloyd - wow.

And then there's The Namesake - directed by Mira Nair, 2007.

I have not seen the whole movie yet, but so far it's just lovely. The cinematography pops and enhances the story of Ashima and Ashoke, who are married by arrangement in India, and move to New York City and take care of each other and their new family. The story will ultimately showcase the work of our favorite stoner, Kal Penn, but the unhurried look at his parents' love for their family and each other is a wonderful setup.