My Life as a Semicolon ; ): At a quarter to three, I metaphor

Thursday, May 24, 2012

At a quarter to three, I metaphor

Truth be told, I started writing this in September 2010, while sitting in our friend Lori's beautiful house overlooking Little Sebago Lake in Gray, Maine, during my "gearing up for brain surgery" phase. I think we had plans at that point to go hiking as a family, which was our annual tradition.

You see, Jamie and I were married atop Bradbury Mountain on May 24, 2002. I use those terms loosely, by the way. Bradbury is barely a mountain and we were barely married (though I'm pretty sure at least the latter is legal). It's a long story, but the short version is: she surprised me with a proposal in a bathtub on Valentine's Day, and I surprised her with a wedding on top of a hill.

Every year since then, on or around our anniversary, we have climbed that hill (weather permitting and with the exception of 2011, when I simply wasn't able to make the trip. In retrospect, I actually don't know why we didn't at least go to the playground there last year.) I've long said that if there is a better metaphor for marriage (or life) -- climbing the same familiar mountain year after year, interspersed with self-inflicted and/or circumstantial challenges -- I haven't yet found it. Except for our trip whale watching yesterday (2010) -- which turned out to be post-hurricane water watching. Saw a harbor seal, a butterfly, and almost saw the gum I swallowed in 2003.

On our wedding day, as I eagerly/anxiously awaited getting to the summit, where friends were waiting to jump out and pronounce us husband and wife, as my months-long covert op was coming to its end game, it was clear that you can't plan for everything, though up until then I had planned for plenty:

a surprise wedding license excursion to Portland City Hall.
shopping for our wedding attire (separately and in secret).
Buying our wedding bands and having them engraved, "double happiness may-july 2002" (that was as much either one of us knew at the time).
arranging for our friend Tess to become a Notary Public in order to perform the ceremony.
convincing Jamie to go for a hike that day without raising suspicions.
hiding our apartment key so our wedding party could break into our apartment and retrieve a garment bag of clothes.
a red-herring shopping trip to Freeport (because I "hadn't been able to find anything to wear yet").
a sleepless but not obviously sleepless night for me the night before, nervous I wouldn't pull it off.
arranging for a potluck at our apartment the evening of the wedding.
Booking a bed & breakfast in Jackson, New Hampshire, for the weekend following the nuptials (our "mini-moon").
arranging our official honeymoon in in St. John, for June.
curbing our parents' dissatisfaction with our decision to elope at home by "allowing" them to plan two parties for us in July (one in New Jersey, one in Maine) -- so much for keeping the spotlight off us.

That day and since then, every hike up that mountain has brought some lesson. Usually, it starts with me reminding Jamie it's our anniversary and twisting her arm to go in the first place. Which is a little odd, since she's always been much more active than I. Like I said, I think the lessons over all are that marriage is a leap of blind faith and that you can't plan for everything, such as:

2002: periodically drizzly weather
2002: Jamie's anti-consumerism tirade in Freeport and declaration that she, "didn't really feel like hiking!"
2002:Jamie insisting on taking the longest possible route to the top, even though:
2002: a call to the wedding party from the L.L. Bean bathroom had revealed that they (Best Man Jamie Boy, Maid of Honor Kristen, and Officiant Tess) were already waiting for us at the top of the mountain.
Any number of years:Wrong trail.
Any number of years: Long trail.
Any number of years: Right trail up, wrong trail down.
Any number of years: rain mixed with mosquitos.
2005: hiking in the rain while Jamie was pregnant with Wyatt (many pee breaks required)
2006: Hauling Wyatt in the backpack (bliss).
2007: Hauling Wyatt in the backpack when he didn't want to (not so blissful).
2007: Carrying a picture of Gus to the top when he was in the NICU.
2008: Coaxing Wyatt to walk up when he didn't want to.
every year since 2007: Keeping Wyatt from running/falling down the mountain
2008:Carrying Wyatt and Gus.
2010: Coaxing Gus (to no avail) and splitting up (Wyatt and I went up, Jamie and Gus went back to the playground).
2011:still recovering from stroke, celebrated at home.

Our vows were, not unexpectedly, nontraditional, but I think it's fair to say that over the past 10 years we've certainly had and held each other, definitely for better and worse, for richer (gainful employment!) and poorer (two spans of unemployment on my part, a year of disability payments, living off a single income); in sickness (duh); and in health (of course, taken for granted at the time). In many ways this past year has been both the most enriching and successful of our marriage and the most trying, egregious failure. At least we're coming through it without a constant desire to blame or bludgeon each other (not constant).

And now, some commemorative pictures:

2002/wedding day

Ken getting to the top with a grunt of relief.

Jamie getting to the top and lying, "I KNEW IT!"

changing clothes

We do.

Jamie and her lilacs

The precipice

2003

1st anniversary champagne, bad hat, and rain

2004

Pictures have frustratingly disappeared.

2005

Jamie, pregnant with Wyatt (who was born a few weeks later)

2006

2007

holding picture of Gus in the NICU

2008

2009

2010

Wyatt and Ken at the top

2012

Apparently, I still haven't quite learned my lesson, since for this, our 10th anniversary, I tried to meet Jamie Boy, Tess, and Kristen for a picnic in the park, and prepare this blog entry as a gift and expression of love, respect, and admiration for what has been the most important relationship of my life. I also hoped to hike as much of the mountain as possible. Unfortunately, only Tess was available, but at least we did hit some of the trail. And I uploaded the pictures without Jamie seeing. Maybe next year I'll climb the damn thing for real, as hard as it is to think that far ahead. Who knows what lies between now and then? It's all an adventure, right?

My Life as a Semicolon ; )

Thursday, May 24, 2012

At a quarter to three, I metaphor

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Activities	Immediately after Stroke(early Oct. 2010)	When I left MGH/arrived at NERHP(mid-Oct. 2010)	When I left the rehab (12/21/10)	Now (02/21/13)
Eating	I started with an an NG-Tube, which was inserted during my original surgery and soon was given a G-tube, during a separate surgery. My primary source of nutrients was called Jevity, which is not as much fun or tastyas it sounds.I actually have no idea what it tastes like, but it looks and smells like a combination of coffee milk and Yoo-Hoo	Still on an all-liquid diet of Jevity through my feeding tube.	Early in my stay at the rehab, I took a Modified-Barium-Swallow test with my speech therapist in order to confirm that the stroke had not damaged my ability to swallow or my gag reflex. After passing the test, I was allowed to eat solid food, though even that came in stages. For instance, I rememberthe first group of foods were "mechanical soft" and I drank "nectar thick" liquids"	I try to eat a healthy diet and have no specific restrictions.
Therapy	approximately one hour a day of OT and PT.	approximately three hours a day of OT, PT, and speech therapy (speech encompasses talking, drinking, eating, and cognitive functions.	approximately three hours a day of OT and PT. I was discharged from speech therapy relatively early on, once it was determined that my cognition, speech, and swallowing were relatively fine	After leaving inpatient at the rehab, I began outpatient OT and PT twice a week and also had in-home OT and PT twice a week. after receiving the results of my neuropsych evaluation, speech therapy was added back in. I then had to eliminate some therapy in order to free up time for my return to work. In 2012 I did no formal OT or PT but tried other forms of therapy like chiropractic and Feldenkrais. I am also going to try craniosacral therapy. I've regularly seen a psychologist throughout my recovery.
Walking	None	None	walking with close supervision and the support of an AFO brace and quad cane	walking independently, with the support of a KAFO brace and a straight cane, now equipped with a standing tip(which I love). I periodically walk without cane or brace, when the occasion calls for it (like carrying something).
Toileting	during my original surgery, I was given a Foley cath– an internal catheter – which remained in place for quite a while. It think after not producing enough in my catheter bag, I was given another internal catheter – this time a Straight cath. They can only stay in for relatively short time,I think, so I was granted the opportunity to try aTexas Condom Cath. After that proved unsuccessful, I was given what was simply called a Urinal, but which I referred to as my "pee jug"	Urinal	urinal at night, toilet during the day	all toilet all the time; no assistance required
Bathing	bed/sponge baths	bed/sponge baths,though after about two weeks inpatient at the rehab, I started showering periodically with assistance	showering, seated, with minimal assistance	showering, seated, with no assistance, standing with some assistance
Dressing	maximum assistance required	maximum assistance required	some assistance required	no assistance required, except with some jackets and zippers
Balance	could not stand or sit up straight	could not stand or sit up straight	could stand and sit for short periods of time	can stand and sit without assistance for relatively long stretches of time
Left Leg/Foot	no movement	no movement	large movement from hip and quad.weak in hamstring. no movement in ankle or toes	still weak in hamstring, but much stronger in leg overall. Some ankle motion, but nothing in my toes.
Left Arm/Hand	no movement	no movement	large movements from the shoulder and bicep. Some hand grip. No finger extension.	similar to when I left the rehab, though large movements are easier and my grip is a bit stronger.
Speech	Little and/or slurred	slurred Jamie often remarked that I had a "flat affect."	relatively clear.	most people say they don't notice any issues with my speech, but I still notice some slurring when I raise my voice (which, of course, never happens in a house with two young boys) or when I try to string together too many thoughts or syllables at once; I can't seem to whistle like I used to, my pitch is a little off when singing; and I can't curl my tongue anymore.
Pain	negligible	negligible	negligible	headaches periodically, but no general pain
Aneurysm	primarily removed	no change	no change	as far as we know, no change
Seizures	gone	no change	no change	gran-Mal seizure while sleeping, in August 2012.
Skull	a portion was missing (on purpose)	no change	cranioplasty completed	scars are healing well. There are some "irregularities" in how the plates have healed, especially with the plastic skull flap. That's not unusual. Sensation is returning to areas of my scalp where nerves were severed during surgeries. Sometimes this can cause odd sensations, but not pain per se. I do have some pain when yawning.
Medication	antiseizure meds,Heparin anti-clotting shots to my belly (which is standard for bedridden patients), beta blocker for high blood pressure, though, that was primarily a reaction to my heart episode, not an actual issue with high blood pressure; Lipitor to lower cholesterol, though, that also was prescribed primarily in reaction to my heart episode and the stroke. Baclofen for spasticity.	no change	no change	I'm no longer on the beta blocker, since my blood pressure has stabilized. I've also reduced my Lipitor intake, because my liver enzymes were not reacting well with it.Since I am no longer in bed as much, I did not need the Heparin shots once I returned home. Anti-seizure meds were increased after my 2012 seizure. Lexapro for mild depression.
Heart	some sort of heart episode had occurred, but no direct cause – other than brain surgery – was identified	no change	chemical stress test did not identify any long-term damage caused by heart attack or risk factors for future concerns	no change
Falls	None, though if I had been left alone, I certainly would've fallen over	same	no falls during my time at the rehab, though, I had a couple close calls during transfers from my wheelchair, or when trying to move too quickly	I've had a few falls at home, up through 2012, but have also regularly practiced getting up from the floor during PT. I have to be cautious but not fear falls
Wheelchair	the only way I could be moved was by wheelchair or gurney, primarily gurney	same	I did use the wheelchair for "long"trips down the hall.	When first at home, the wheelchair was the easiest way to get me around or in and out of the house and car. I no longer use it except on excursions that would require a great deal of walking, such as at the airport.
Stairs	None	same	some use of "practice stairs." And actual stairwells, always with supervision	when first at home, I stayed on the ground floor of the house at all times, but now go upstairs to sleep and shower, as well as down to the basement for exercise. I still mostly go one step at a time (as opposed to stepping "reciprocally"), but only need supervision when there is no railing on my right side – up or down. Regularly exercise at work by reciprocally climbing three flights of stairs.
Driving	none	same	same	Car modified for one-handed operation, I got my license back at the end of January 2013.
Sleep	this fight, the noise of the hospital, I generally slept okay. I was pretty exhausted and at times still groggy from anesthesia.	same	I went through some periods of sleeplessness due to noise in the rehab and was given some sleeping aids, which helped.	I've been sleeping pretty well, aside from typical interruptions of young children. Diagnosed with mild sleep apnea in February 2013.
Work	none	none	none	From 7/11 through 12/11, ramped up from part-time at home to fulltime from home . From 1/12-6/12, ramped up from part-time in the office to fulltime in the office, which continues.
Mood	upset by my circumstances but generally positive	same	same	I think working has given me a boost to a certain extent. I try to be positive, though certainly get frustrated at times. I'm also on Lexapro, in part because a study showed a connection between SSRIs and neurological healing. At worst, the study found that patients were less depressed and more motivated to work toward recovery.
Exercise	Little to none	same	I considered all therapy to be exercise.	Again, therapy has been exercise. Without formal therapy, I do regular stretching and have recently added a treadmill to our inventory of equipment. This will hopefully help improve my stamina in preparation for time in the office, as well as help me focus on walking pace and form. I've also been using ourWii balance board, which includes fun, but safe ways for me to put my balance to the test.
Tactile sensitivity	slightly diminished– if tested subtly, for instance, with a Q-tip, I could not easily identify which finger on my left hand was being touched.	same	improved	relatively normal, though I am somewhat hypersensitive to heat and cold.