My Life as a Semicolon ; ): Twelve Steps

Sunday, October 13, 2013

Twelve Steps

Sorry, time for more self-indulgent philosophizing. For three years now, I've been walking around with a "New England Rehabilitation Hospital of Portland" messenger bag sashed across my chest. I don't know if anyone has interpreted that as being from a substance abuse rehab (not that there'd be anything wrong with that), but the possibility inspired me to review the 12 steps of addiction recovery and see how they apply to brain injury recovery (and life) Remember, it's an exhibition, not a competition:

Step 1- We admitted we were powerless over our addiction - that our lives had become unmanageable

I have definitely at times felt it was important to relinquish any sense of control over my circumstances. That's not the same as giving in or giving up but simply recognizing that a certain amount of acceptance is required for me to get on with my life. For me, I suppose Step 1 could end with, "we were powerless." I am not addicted to my stroke, but hopping a ride on the Victim parade float can be tempting at times.

Step 2 - We came to believe that a Power greater than ourselves could restore us to sanity

I've struggled with this one, in that I've come to see my own resilience as a power greater than myself (no, I am not God; but there is something within me I was only able to access under the right -- admittedly unfortunate -- circumstances. The whole "sanity" piece is debatable. I'm long gone; no amount of sanding or coats of varnish are going to restore me.

Step 3 - We made a decision to turn our will and our lives over to the care of God as we understood God

I suppose this one might go back to acceptance, which works well with my somewhat fatalistic nature. I don't feel I'm being cared for or watched over, and there's only so much I can do. I am open to the universe.

Step 4 - We made a searching and fearless moral inventory of ourselves

What do you think? Isn't that pretty much all I've been doing for three years? I have definitely gone through phases of asking, "What did I do to deserve this?" The answer is nothing and that no one truly gets what they deserve, because no one deserves anything. Deserving is too close to entitlement, and I don't believe anyone is entitled to anything. Inalienable rights, my ass. There are things you can ask for. Once in awhile, there are things you can earn. Like Mick says, "You can't always get what you want..." And as my friend Tess tells her kids, "You get what you get, and you don't get upset!" Doesn't work, but words to live by nonetheless.

Step 5 - We admitted to God, to ourselves and to another human being the exact nature of our wrongs

I've certainly had some heart-to-hearts with myself, friends, and Jamie, but I have a hard time identifying the nature of my wrongs in that I don't think any wrongdoing on my part played a role in my illness or that admitting them heals me, other than helping my brain reconnect with my "self", which is as close to my "soul" as I get. Are wrongs the same as regrets?They say you regret the things you didn't do more than the things you did, but I don't know that you can count romantic ideals as wrongs. From a Karmic perspective, I always thought restraint was rewarded. Is it possible that you lose points for not doing some things you wanted to (did I just blow your mind?)? But for all that's gone wrong for me, a ton has gone right. I attribute many of those blessings to what I call Social Karma. When it mattered, I made good choices and have been rewarded with strong relationships. Nothing mystical about that; it's basic socio-economics. (Shameless plug: If you're looking for some Instant Karma, I've added a fundraising page to my site, to assist with the purchase of a recumbent tricycle this spring.)

Step 6 - We were entirely ready to have God remove all these defects of character

Too much God in here for a devout agnostic. Again, if I've discovered what I feel are true defects in my character, it would be up to me to resolve them, and I don't think I've found anything I would completely excise. I think our flaws make us as richly dynamic as our strengths. Particularly with my brain injury, it can sometimes be difficult to identify psychological, social, and emotional truths. I remember immediately after my stroke how people remarked on the "flat affect" in my voice. Given my already-bone-dry sense of humor, I wasn't as aware of it as others. I've continued to struggle with better expressing my emotions in a way that comes across as more than sarcastic. I'm a work in progress.

Step 7 - We humbly asked God to remove our shortcomings

No, I have have not asked for the removal. I simply have to remain vigilant of some deficits (such as a lack of filter) and show restraint.

Step 8 - We made a list of all persons we had harmed, and became willing to make amends to them all

I have approached some people from my past, not so much to make amends as to rebuild connections.

Step 9 - We made direct amends to such people wherever possible, except when to do so would injure them or others

Didn't I just do that?

Step 10 - We continued to take personal inventory and when we were wrong promptly admitted
it

I'm all for The Examined Life, but I'm feeling like 8-Minute Abs would have sufficed here.

Step 11 - We sought through prayer and meditation to improve our conscious contact with God as we understood God, praying only for knowledge of God's will for us and the power to carry that out

I can't go exactly there, though I have tried meditation and mindfulness exercises as a way of resting my brain and encourage neuroplasticity. And lord knows I'm trying to make the most of what I've got.

Step 12 - Having had a spiritual awakening as the result of these steps, we tried to carry this message to other addicts, and to practice these principles in all our affairs

Does this feel like more of a list of steps to redemption than recovery? I'm sure it's helped a lot of people and will help many more, but my stock pot runneth over. Have I properly carried this message to you, my Followers?

Okay, should I get a Betty Ford Center messenger bag now? Honestly, I don't think I could hack overcoming addiction. Too much work.

1 comment :

Anonymous1:04 AM, November 01, 2013
Hi Ken, you are an inspiration! God loves you and his love for you is perfect and unconditional. Continue to seek Him and you will find Him. Have you started reading the bible yet? Any of the 4 gospels would be a great place to start. Mark, John, Matthew or Luke. Send me a message on Facebook and we can discuss specific passages if you like. Julius P.
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My Life as a Semicolon ; )

Sunday, October 13, 2013

Twelve Steps

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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.