My Life as a Semicolon ; ): Independence Day

Sunday, July 07, 2013

Independence Day

Apropos to the July 4th holiday, my brain injury support group theme this week was "Independence".

That's a pretty rich topic for a room full of brain damaged people, many of whom have rebuilt themselves from scratch, often transitioning from living with a caregiver to being "on their own". No, Jamie, the support group does not recommend ditching one's spouse.

The venue was also a great reminder that independence doesn't have to be achieved alone.

While much of our ability to reclaim our lives from mostly-invisible injuries does come from individual work, most people acknowledged that accepting reliance on others and generally relinquishing control (which reminds me of my pre-surgery mantra – "I am open to the universe") is a necessary part of recovery. It also reminds me of my father's often-uttered declaration – "I don't spend time worrying about things I can't control." My usually-internal retort is, "No, but you spend plenty of time trying to control as much as possible." He's right, of course, that we often expend too much effort trying to lasso tornadoes (who was that? Pecos Bill?). But truly opening oneself up to current events (i.e. The Here and Now) can also free you to achieve more than you ever imagined.

For this July 4th, we went – as we do almost every year – to a lakeside barbecue at our friends Ed and Amy's house. It's been so damn hot, there was no question I was getting in the water. Part of my road to independence has meant knowing I won't be able to make a move without watchful eyes upon me and helpful hands there when I need them.While I was able to get down a short, grassy slope, sit down to remove my shoes, socks, and brace, then scooch to the water's edge on my own; the first few steps in the pond did require support from my buddy Marc. Wearing a life jacket, I was easily able to float and paddle around for quite awhile (one hand, two feet). The biggest challenge was getting out -- dragging myself up the ladder to the fixed dock, getting on my knees, then using Jamie as a steady "table" from which to stand. In principle, I can stand up straight from the ground, but it's still kind of frightening.

Sometimes independence means proving to myself and others that I can do something. Sometimes independence means being trusted to take care of myself and others, such as last night when Jamie camped out with the boys and left me to fend for myself, the cats, and the dog. We all survived. Yes, one of the cats stayed out all night; but that was his own choice, as he ran past me when I let the dog out for the last time; and I wasn't about to follow and wrestle him back into the house.

Taking care of myself at night mostly consisted of sitting myself down in front of a movie, then being able to tote back and forth from the bathroom to the bedroom with my CPAP distilled water container and no cane. "Functional independence" is probably what I'm most gauged by (if anyone's really keeping track):

Walking.
Dressing and bathing myself
Holding down a job.
Driving.
Relatively easily sitting and standing.
Not falling down too often or too easily
Cooking for myself and others

On these notes but not a bullet, I remember asking my in-patient PT where patients usually start walking without assistance (I was still confined to a wheelchair, outside formal therapy, at that point). She said "in the kitchen," because of easy access to support like counter tops. Soon after that, during a NRG (Neuro Recovery Group) exercise in the rehab "practice kitchen" (it was nearing Christmas 2010 and we were working on one-handed wrapping), I found myself struggling with the choice of getting from the counter to the supply table. I could blame it on right hemisphere impulse control issues, but it was mostly a desire for independence that sent me suddenly stumbling/lunging toward the table. Remarkably, I think it was the closest I came to an actual fall while in the hospital. I saved all my actual falls for home, which was always disappointing, because it always made me wonder if I had been discharged too soon. Even when I visit the rehab, I've felt like a fraud walking the halls I was never allowed to as a patient. Actually, a week ago, I did finally earn my "green band" to do just that. Turns out, all I had to do was ask. Oh, and not be a patient anymore. So I'm no longer a fraud. I'm a functioning independent with a green, plastic bracelet. Though Jamie says I wrap presents just as well with one hand as I used to with two. Hey, that's what gift bags are for.

On the subject of impulse control, regaining Independence also means freeing oneself from oneself. And that's not reserved for those with a brain injury. Any mature human being must be able to recognize and accept the consequences of his/her actions. I know my hair-trigger mouth runneth over, before and after my stroke. No excuses; only choices. Our brains are often our worst enemies.

But despite the holiday's implications, Independence is not the same as Freedom, as anyone married with children and otherwise productive members of society can attest. Wyatt's been on a kick lately where he insists it's unfair being a kid, because adults can do anything they want when they want. I don't know what billionaire playboy he's been hanging out with, but it sure ain't me.

Though I'm independently wealthy in other ways.

1 comment :

Rosafaerie1:58 PM, July 08, 2013
Ha! Ken...Cyrus has been on the same kick lately. He loves to say..."You should try living MY life. It's so much harder than yours." I could kill him every time. :P
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My Life as a Semicolon ; )

Sunday, July 07, 2013

Independence Day

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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.