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Where I've Been (Pt. 2)

Where I’ve been Pt 2
(as noted, this is Part II. You should probably read Part I first, below)

My personal Poly M. attacked me one Spring afternoon in a park peopled with other dads and moms and their kids. I was throwing a Frisbee for my guy, when I just suddenly fell flat on my face. Didn’t trip, didn’t get pushed over by a giant Saint Bernard, just splat! on my face. Well that’s odd I thought. But it happened again. Other parents eyed me suspiciously, maybe that guy is drunk over Frisbeethere throwing that Frisbee. Maybe there is some kind of problem and I need to gather my preciousnesses and go. “Heh, heh,” I said after the third fall, “I swear,” I said. “I’m not drunk or anything.” And everybody knows that the second you say you’re not drunk you sound drunker than the drunkest drunk man …

Next couple of days I struggled to get up staircases. Huffing and puffing. Never a problem before. I fell again. I huffed and puffed harder, my knees were awfully scraped, so I finally went to see the Kaiser of Northern California himself, and found out about the Poly M.

Poly attacked my quads and my hands most intensely. It also got up in my shoulders and wrists and some other muscles involved in standing, walking up inclines and moving with any kind of speed or alacrity. Which was never really my forte to begin with, alacrity. I was never a very speedy nor alacritous person in my life.  Not that I didn’t like to move! No, I liked to move, to walk and look at trees and oceans and stuff. And I really liked to ride my bike on the mostly flat surfaces of Alameda, CA, and San Francisco, CA, as I commuted from my house in Alameda to the ferry boat, where you could bring your bike and rack your wheels, then after a pleasant float disembark in SF and bike down Market Street (the “death ride” I called it) to the poor, poor San Francisco Chronicle, who is also on medical infusion these days from what I understand.

So things became harder, but not impossible for many years. If I wasn’t trying to rise from a chair or surmount a flight of stairs, you’d think I was a regular person.

Sometimes I wonder if I’m being shown, graphically and painfully how difficult my dad had it in his later years. His knees. His “fucking knees” he said 100% of the time when referring to his fucking knees. His back. His severe and untreatable arthritis. He could not get up from chairs without help. He could soon not use the bathroom nor shower without help. He once told me he didn’t care who saw what in the bathroom anymore as he had “lost all sense of humility or dignity long ago.” What’s that like? For the son Walker or daughter or wife of a compromised person it can go from zero to annoying faster than you would think. Accidents, either falling or the incontinence kind start to be wearying, you wonder, maybe they are avoidable? Maybe better planning would help? Do they have to happen every time we try to go anywhere or do anything? Am I being an asshole for being impatient? Maybe, yes. Maybe I was an impatient asshole (though honestly I put up with A LOT okay? A LOTTTT before I started to fray at the edges) and I am now being graphically shown what it was like to be him? But why now? Why at age 57 (Heinz!) as opposed to his age 90, is a mystery.

So yeah, it happened. In the Barc-o-lounger, Infusion Center, Day One, 3 hours into it and no question, I was going to have to “use” the “facilities” for my “business” and its “intended purposes.” I got up (with difficulty, the Barc-O-Lounger is too low, too squishy and fuck all) unplugged my IV stack (battery power ACTIVATED) and dragged my dripper (stupid wheels like Giant Eagle shopping cart) to the “rest” room.

It didn’t look so bad at first. Looked official. Tiles. Shiny silver handrails everywhere, a sink, a drain in the middle of the floor for the hosing down purposes, so I wheeled  the IV beside me, unhooked the jeans and sat. And immediately knew I was fucked.

This is a bad feeling. Its more about the future than it is the present. In the present you are fine. You are sitting down and your body has performed the Miracle of Waste. In this moment you are calm, empty and satisfied. No, its your future that is guaranteed to be horrible in several choice and worsening ways, and yes, you can panic. In the end, you know, you will need help. You will need strangers to enter your “privy” and take in the glory of you, T. Skirblog, fully asquat on the cuckstool, as he sits above his rising smells (Joyce, Ulysses 4:69), parts and messes uncovered, stark, unhidden and overt. This is of course the opposite of how we of the Western Culture like to do it. Like it to be. Look, you know your needs for privacy, and perhaps you know what its like to have them taken away from you, say in prison or the army. Not to be trifled with, a powerful human experience. For some reason.

But First! I will try to avoid this. I will try everything to avoid the coming Invasion. Of Privacy. There are tricks, increasingly useless and futile tricks I have learned in order to attempt to rise from low seats as I progress through my Poly M. Futile, but I will try them anyway. Right? Makes sense. You never know.

OuthouseI can tell immediately though that I am too low to have any leverage at all. My arms are useless for leverage. But I have learned that if I take off my shoes, I will gain maybe an inch or so of extra space. So shoes get kicked off. Then there are the pants. Taking off the pants, or at least one pant leg, affords me the additional leverage of spreading my legs further apart. I don’t understand the physics of this but it has sometimes worked. As has scooting to the edge of the seat where it is a bit higher, scooting to the sides, using the sink as push off, leaning very far forward (nose over toes!), pleading, kvelling, blaming. All these things were tried with great difficulty and thrashing around and I must have inadvertently pulled or activated the emergency string thing that is hanging on the wall because suddenly a voice crackled through. “Are you ok?”

“I’m stuck,” I said. “I didn’t know I’d pulled the string.”

“Ok,” she said, “ I will get the key.”

And that is where I gave up, the inevitable future arriving. Soon the door would burst open and an aide, a nurse maybe, or an “orderly”? would enter the lav and see your humble narrator not so humble, one pant leg down around his feet, the other off entirely, both shoes flung to different parts of the floor, and all etcetera hanging out for professional non-staring or view. And so she came, a young woman of course, quickly surveyed the situation and called for another aide, another young woman, because she saw that the strength of two would be needed in order to hoist one USDA Grade A American Skirblog from such a low position. They efficiently snapped on their purple Nitrile gloves, and got to work.

I was still calm and resigned and thinking about my father as they made their first attempt to lift me. Like him, I let a bit of my dignity slip away from my body and flow into the drain in the middle of the tile floor. It was something of a relief.

Attempt number two came close, but didn’t quite get it. I made the expected jokes, “you both must be glad you came to work this morning,” or “best part of the job right?, hazard pay,” but they were steely eyed, stolid and insisted they had seen it all and this was a mere trifle! Nothing!

Attempt number three and we got it. Counted to three, all of us. Teamwork! And I was standing. “OK?” one asked. “Yes, I’m fine, I can handle it from here.” But she looked at my pant leg and shoes all goofed up and splayed across the floor and asked, “did you have a plan for getting those back on?” Glove

The alarm on my IV pump began to beep wildly, as by then, my battery had run out. “My plan?” I said, and I found that funny. These aides are great! making a joke at a time like this. So I laughed a stupid little chuckle, and that too seeped down and made its way through the plumbing.


Where I've Been (pt 1)

… The Infusion Center, a suite in the hospital where one would be infused, via a prick in a vein, connected to some tubes and a pump with various substances that best enter the body liquidly and slowly, a drip at a time. I have nothing better to do for the next 7 hours than jot this down, or perhaps fret about if I may need to go and sit on a toilet here, in this hospital, a place you’d think is sensitive to the needs of various compromised people, mobility compromised people like myself, but for some reason it is not! For some Water-Drip-280x219reason they, the hospital, built a lovely, brand new Infusion Center as recently as last year, but blew off thinking about the common requirements of many of those who visit the place. Like how far off the floor do we situate a toilet? People in wheelchairs need to use them, yes, and they have that covered. But what about ME? Mr. Skirblog. Not a thought about me? A person not in a wheelchair who cannot, under any self propelled or gymnastic circumstances, ever hope to rise from a low seat, toilet or otherwise, without the help of at least two capable and brave people?

For a good part of the day my lower GI has cooperated like a champ. It can be like that. It can know when you really can’t go, like in the middle of a meeting, interview, traffic stop, a performance, a tête-à-tête of some kind, and it can wait. Amazing really, and appreciated for sure. Sometimes however ... Other times no, it reads the situation as perfect for a go. You’re just sitting on a chair at an infusion center, a lot of liquid is entering your body. You are bored and not necessarily doing anything important so yeah, c’mon, let do this! And hence the fretting, wondering if I may be stuck on their lovely, new hospital can, in dishabille of course, and of course, helpless.

These days, in my life, I have a lot of ADA type requirements where before I had none. Curbs, steps, handrails, toilet seat heights, all now on my radar. Things you, or I, never thought about before: cracks in the pavement, divots in the grass, pebbles on the asphalt, and exact inches off the ground a toilet seat sits, now occupy my thoughts more than I would care to admit. If I am not focused on these things constantly and entirely, I may fall, or get stuck. And I have fallen, and been stuck many times. A fall IMG_7682almost guarantees my head cracks the ground, as I am unable to hold it up neckwise. There are technical reasons for this, which may be described later in various appendices and footnotes that will certainly be needed. I will crack my head on the ground and not be able to rise up again on my own. I will need at least two strong Samaritan type people who are hopefully nearby and willing to deadlift 240 pounds of your friend, the skirblog. Though I am happy to report that in every case of me hitting the deck, there have always been heroic fellow humans in the vicinity just waiting to spring into action. Always. Every time. Helping, springing, willing to help. Just knowing this gives me renewed hope for humanity when I am low. But being low, literally low on a low lying seat of some kind is far from good and causes me a fair amount of fretting.

 

Where I am

… at Magee “Woman’s” Hospital in Pgh, PA, in a barc-o-lounger type chair, to be infused with Gammagard, hung above me in a 1 liter plastic sac of human immunoglobulin (plus a hint of vanilla I believe) that will drip very slowly and intravenously into me over a 7 hour session, 2 days each month. Because I have polymyositis.

“polymyositis” - a rather sing-song-y name for an uncommon inflammatory muscle disease -- has made mobility in my life odd and increasingly difficult over the last 15+ years. It does a thing where it attacks healthy muscle tissues, usually in the trunk area of your body, and turns them into muscular versions of swiss cheese. Why it does this, nobody knows. How you end up getting it is also unknown. How to treat it is again a giant mystery.

But if you get one of these mystery immuno inflammatory diseases you’re going to want to be in Pittsburgh PA my friends, and not say, Northern or Southern California where I first learned I had I something, and where health care is dominated by the monolithic Kaiser Health System who could give a rat’s ass about your poly wolly doo what? And does whatever they want with little regard to the tiny annoying little patients who scurry around their hallways clutching papers and printouts. No, Kaiser may fuck you up before they help you, then fuck you up again. Wires

So I eventually dragged myself and my polymyocitis out to Pgh, PA, dominated as it is by the also monolithic UPMC Medical System but where they seem to want to do stuff more along the lines of helping people in their staggering agglomeration of hospitals and clinics, and where they were already studying the disease, and where they happily welcomed me into their monolithic arms.

Being infused is much like air travel. You sit in a chair for many hours, one that looks outwardly comfortable but is inwardly not comfortable at all, where you can’t get up and move around very easily without a bunch of awkward maneuvering, and where you try to patiently occupy yourself and not go insane for the duration. Infusion sitting is far from horrible, and in my case the worst it does is make me feel like yuck, the kind of yuck you feel smelling the outgassing plastics, microwaved food, and burnt coffee that you smell on an airplane. The potential benefits outweigh any yuck that may hover about. At this point dripping IVIG is the only thing medical science has come up with to address weird inflammation like Poly M. and it has had some positive results. IVIG aka Gammagard, is made out of human immunoglobulin which come from your blood plasma. That’s right, yours. Thank you, although shit, you should see how much a liter of it costs! Around $80,000 folks. (that’s what an insurance statement read, who knows what it really cost or who got any money for it.) I paid my deductible and let the globulins flow. So yes, your blood plasma is valuable and Signprecious and keep it coming is what I’m saying, cause we're experiencing sporadic turbulence in the cabin.

END OF P.1 - Next post: Getting Unstuck