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.
I's
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.
O's
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.