Saturday, November 24, 2012

Downs and Ups

This holiday season, I am thankful that I's and O's remind me to turn lemons into lemonade, and downs and ups to turn falls into flight. I believe it was the great Douglas Adams who said that flying is merely falling down and forgetting to hit the ground. Okay, I've paraphrased that incorrectly. It should be:

The Guide says there is an art to flying", said Ford, "or rather a knack. The knack lies in learning how to throw yourself at the ground and miss.”
Douglas Adams, Life, the Universe and Everything 

I was talking to a friend recently about my last brain dump, and she was saying that she prefers when I look forward and not back. While I do agree that living in the Now is best, sometimes the present is a tantrumming child which doesn't deserve the attention. Also, if I were truly going to live in the past, I would not dwell upon these past two years; I would certainly be grasping further into my youth and the relatively infinite promise it held.

My Now is a near-constant reminder not to forget the lessons of the recent past and the limitations they've inflicted on my present. I was originally envisioning this post as a "fall log," but I don't actually think each of my stumbles warrants description, nor do they negate the progress I've made. They've ranged in personality from frightening (my first, in the bathroom); to dramatic (the flipped desk chair); to amusing (the Nestea Plunge into the waiting arms of Melissa Whitaker). They've all been somewhat unexpected.

Case in point: about a week ago, while bending down to pick up the trailing electrical cord for our bathroom space heater – something I'd done successfully every morning for the previous month – I neglected to evenly distribute my weight between my left and right feet and suddenly found myself tipping to my left. With a thud I was on the floor, though, fortunately, only hit my hip and not from a great height. At the sound of my collapse, Jamie and Wyatt rushed out into the hallway, concerned I'd injured myself. The bright side is that I was not hurt and was able to stand up on my own. It was mostly a bruise to my ego. As much as this and all my other lapses have been frightening,  they are necessary reminders to remain vigilant. But they are also my Cecelia, shaking my confidence and leaving my family in a state of unease about my safety.

No pun intended, I don't want to let these little setbacks get me down. As much is I have to focus on my footing, balance, and safety, seeing myself as either stable or fragile can be either a jinx or a self-fulfilling prophecy, respectively,  leading to mishaps.

So long and thanks for all the turkey.

Sunday, November 18, 2012

Brain Dump 2: I's and O's

Remarkably, it's been just over two years since my aneurysmectomy and subsequent stroke ( is that an aneurversary?). What do you get your stroke for your two-year anniversary? Well, I'm giving mine a healthy dose of perspective (after all, I am the designated Perspective Keeper) and a fistful of ongoing resentment.
To think that two years ago I could hardly sit up in bed without wearing a helmet and having a cadre of spotters surrounding me. Now I'm back at work in the office fulltime and periodically walking short distances without my leg brace or cane. The other day I even placed my cane on an acorn in the driveway and hardly stumbled as it rolled me away. A couple of weeks ago – just following Hurricane Sandy – we took a family walk farther down the road than I've been able to go since we found our cat Thomas in July 2010. I can't say as much about increased mobility in my left arm and hand, but yesterday – for the first time in a very long time – I opened a small container by holding it tightly enough in my left hand to allow my right to turn the lid.

My apologies if this is a rehashing of things I've said before, but as with the bi-annual self-assessments we completed last week at work, I find this exercise validating and reinforcing in that it shows I have in fact accomplished something even when it often feels like I'm sitting still.

Of course, as much as it's practically happened overnight, it's also been a long transition of rebuilding my brain, learning to walk again, learning to do just about everything with one hand, and willing myself forward. We've lived in and with and through this whole experience and can be grateful for how far we've come. Wyatt very kindly asked me the other day whether it's hard having to do all the things I have to do, the way I have to do them. Short answer: It is, but more and more I'm used to it. He said he's used to it too, which is hard to hear. As much as I'm glad we've somewhat settled into our new normal, it's always somewhat crushing to accept. The topic I've chosen for this commemorative brain dump is admittedly a subject which may make some squeamish (enough so that it's warranted the creation of a new blog post category/label, called, "TMI". That said, I's and O's happen to embody so much that's been essential to my experience – from the indignity of institutional living, to the dedication of my care givers, to the sheer hilarity of my circumstances at times. Not to mention that my vanity and modesty pretty much went out the window the minute I had my groin shaved for my angiogram.

Most literally, I's and O's refers to the detailed record-keeping in the hospital and rehab regarding how much food and liquid I took in ("I's”) and how much solid and liquid waste came back out ("O's”).

For practicality's sake, I appreciate the medical need to watch out for renal failure. But, as you'll see, this practice can go to some extremes.

When I stretch the metaphor further (as I am prone to do), I'm left with that whole perspective question and the desire to monitor the nutritious value of all my experiences. For instance, I began writing this during some rare alone time in the house. Forced to contemplate how best to use this solitude, I knew this entry was an important To-Do for me, but so was a lack of tangible productivity. Sometimes less is more, especially when it comes to quiet. (I've been trying, unsuccessfully, to instill that idea in my children). It's also only in extending the idea of monitoring what I take in and what I deliver that I realize we tend to put a lot of pressure on ourselves to spin the every day straw of our lives into gold, whereas no matter what healthy foods we eat and drink, what comes out the other side is only the scrap– we're supposed to silently retain all the nutrients, turn some into energy, and dispose of the rest. That's somewhat unreasonable as well – burning more calories than we consume. How does that translate spiritually? I think we're in a current culture and economy calling for us to find ways of making more with less.

While being closely monitored in the hospital for those three months or so, I think I actually lost 15 or 20 pounds. I've easily gained that back and then some, often struggling to close my pants (did I mention I have to do it with one hand?) Sometimes I use a hair band as a waist extender (to paraphrase and make my Facebook self less obscure, I mean an elastic, not Mötley Crüe – originally, I said Ratt). To make this struggle easier, I've considered taking Enzyte to make my right hand bigger (does it not work that way?), but it ultimately will come down to losing weight. I do eat fairly healthily and moderately but face the same hurdles as anyone in finding time to exercise. Uniquely complicated for me (not an excuse) is the fact that it is difficult for me to safely exert enough energy to burn enough calories (high speed on the treadmill is about 1.5 mph. Add to that a concern that exhausting myself could lead to setbacks and seizures.

Early on after the stroke, I was on a strict liquid diet through a tube surgically implanted in my stomach (that tube stayed with me long after I was cleared to eat and drink orally, “just in case”. In fact, it was only “pulled” (a procedure often described to me just that way, always to a reaction of fear and disgust) two months after my stroke, following my final surgery. Jamie said I turned white as a ghost when the deed was finally done, though it was less uncomfortable than when they put it in.
Through my tube, I received all my food, fluids, and medications.
After passing my swallow test, I graduated to “mechanical soft” foods and “thickened” liquids (which had the texture of drinks mixed with apple sauce). The tube was actually a preferable way of taking my meds; I have always been one of the world's worst pill takers – my joke is that at the age of 15, I would take 38 St. Joseph's chewable aspirin for a headache, just to avoid swallowing Tylenol. Now I have to take about eight pills a day and have actually started dropping them in yogurt or applesauce and even then often chew them instead of swallowing outright (scoff all you want, handful pill poppers, I don't care; I actually think it's quite reasonable of my gag reflex to find swallowing without chewing unnatural). I've also moved on to gummy multivitamins and, ironically, back to one St. Joseph's aspirin a day (though now as a healthy cardiac regimen, though they've disappointingly changed the flavor). I made the recent change to using thicker substances to take my pills after doing a spectacular coffee spit-take all over the wall of my office, much to the horror of some of my kind co-workers,who I'm sure feared I was having some sort of fit, as coughing throws me off balance a little and causes my left arm to spasm.
What I didn't realize until toward the end of my hospital stay was that my intake and output were being conscientiously monitored and logged (rim shot). Certainly, when my diet was strictly in liquid bag form, they knew exactly what I was consuming. Once I moved to solids, There was most likely a record kept of the foods I ordered each day and how much was left on my tray at the end of each meal. Monitoring my output was mostly anecdotal, except when I was peeing into a catheter bag or a urinal bottle. Especially right after surgeries, there seemed to be an urgency over whether I had peed, and that concern was often piggybacked with the threat of a catheter. After my first surgery, I know there was one time they did have to resort to a “straight cath” because I was not delivering enough. They would even role in a portable ultrasound machine, so they could measure exactly how much urine was in my bladder and compare that to what was in my catheter bag or urinal. My family very conscientiously encouraged me by downloading waterfall sounds to their phones (thanks, Maggie) or putting my hand in a basin of warm water, just to help me avoid the dreaded cath. One of the first things I asked after regaining consciousness (in writing, I believe), was whether I was going to be incontinent. I know I was aware of having soiled myself and was worried there was no hope for anything but that for the rest of my life. Fortunately, that has not been the case, but it did lead to the need for adult diapers during that first month or so. They should call them Depends not just because you can depend on them but because how you take them off depends on what's in them. One thing they certainly don't do well is breathe, because I was accosted by a yeast infection in the creases of my groinal region. I was told by my co-workers – who are predominantly female – that, even more than usual, this made me “just one of the girls”. All I knew was that it made me itchy and uncomfortable, and could apparently only be treated by some rare and mysterious anti-fungal powder they had to special order from the Albanian talc mines. Again, my friends and family very diligently dogged the nurses about whether this elixir had been procured, so much so that I silently dubbed them my “'Nadvocates”.
Prior to the stroke, at least not since childhood, I had not had any issues with my “bowel routine”. In fact, My co-workers would often razz me as I walked down the hallway every day with a magazine tucked under my arm (Which reminds me, I never did write that letter to KM World, telling them I'm a regular reader of their fine publication). However, apparently during an extended hospital stay, patients will often experience some amount of constipation. Every other day was the tolerable limit, and I was constantly polled as to when I'd had my last bowel movement. Once I did go, I was then asked to describe it. Even after my rehab discharge, I messaged my nurse Megan with a simple, “LS” (Large Soft), so she could close out my file on a high note. I still monitor myself pretty closely and am not as regular as I once was, but I'm less strict about policing it than the pros (thank god).

I's for O's
A regular part of keeping regular was the inclusion of a stool softener called Colace with my other medication. If the Colace wasn't enough, after two days I'd be asked if I wanted a “Brown Cow” (warm prune juice mixed with Milk of Magnesia (“Milk of Mag,” at the rehab, as much as Phillips wants you to call it “MOM”). If that didn't work, I'd be asked if I wanted a “supp” (suppository). “Wanted” is an awkward way to phrase that question; when it was time, there wasn't much choice in the matter. As it was explained to me, the Brown Cow was Liquid Plumber and the supp was a snake. Needless to say, the cow was preferable to the snake, but they never disappointed. I also always had prune juice with my breakfast, which would often spill (sorry, Hannah).

Awkward Moments
If you aren't already cringing from the previous recollections, here are a few special moments on our theme:
1. Upon returning to the rehab after my cranioplasty, the readmission process required a urine specimen. As most of you probably know, someone has determined that the best samples are taken “midstream”. This requires a Raiders of the lost Ark idol switcheroo after beginning the process. Needless to say, it was difficult for me to swap out my urinal (pee jug) for a small, sterile specimen jar. A nurse came in and offered me what seemed to be the holy grail – what I thought she said was a sterile urinal. Turns out such a thing is a mythical creature (a uricorn), so my CNA was tasked with hovering outside the bathroom while I sat on the toilet and waited for the urge to strike. Unfortunately, the urge was fleeting that day, and she had to wait a good 20 minutes before I was even ready for her to help me with the idol swap (sorry, Jena), though it did give me plenty of time to try and memorize my only bathroom reading material once again (I still can't remember exactly how to say “powder-free synthetic surgical gloves” in Spanish and French, as many times as I tried).

2. This is more weird than awkward, but the first time I detected post-stroke movement in my left arm was mid defecation. All of a sudden, my forearm and hand started smoothly floating upward. It's one of those oddly-encouraging connections my brain has formed, partially misdirecting the signal for one form of effort toward another part of my body.

3. My OT Chrisanna's birthday recently passed, and I can only hope it was two years ago to the day that she strolled into my room for a session, only to discover the ridiculous spectacle of me trapped in my wheelchair and wrapped around my bedside curtain, while trying to use my urinal. Long story short, I'd been left in my room after PT; didn't have approval to transfer myself to my bed; my urinal was out of reach; and when you gotta go, you gotta go. I imagine it looked somewhere between this and this (more the first than the second).

4. I think when I was back at Mass General for my cranioplasty, during that critical second day without a movement, I was sitting (and sitting) on the toilet when a nurse stepped outside the bathroom door and bellowed something I would be quite happy to never hear again: “Have you voided yet!?” This along with the concerned , “Of course, we don't want you to strain.” And, “Do you want a supp?” She knew, as I learned from one of my favorite X-Files episodes, straining can cause an aneurysm to burst. No pressure. Just breathe through it.

5. I fondly remember the first time I peed standing up after the stroke: it was in the shower at the rehab ("It's all pipes!"). Also a good Scott Pilgrim clip.

There. I told you it was probably more than you wanted to know, but there's no need to be sqeamish. As the book says, Everyone Poops. And if you or a loved one have ever had an extended hospital stay, or will, you should be prepared for it. Same goes for caring for a newborn – you will learn to tolerate depths of the grotesque you never imagined possible. These are ultimately the things that most universally define our humanity – pooping, peeing, and how annoying it is to bite the inside of your cheek.

Friends and I once debated the nature of being high maintenance. I can safely say I win, hands down, since I'm the only one of us who's needed his ass wiped for him in the past two years. Beat that.

In conclusion, the best depiction I've seen of institutional toileting is in this scene from the very satisfying 50/50, about a young man dealing with a spinal cancer diagnosis, chemo, and surgery. This scene follows his surgery, when he's still using a catheter bag. It's just like that, though not quite so romantic.