My Life as a Semicolon ; ): October 2014

Sunday, October 26, 2014

Never Tell Me the Odds

For many of you, I probably don't need to clarify that movie reference. In fact, I probably don't even need to add that the possibility of successfully navigating an asteroid field is approximately 3,720 to 1. This time of year (the anniversary of my brain surgery, hemorrhage, craniotomy, and stroke [to borrow a term from someone at my support group, my "craniversary"]) I do tend to get reflective and flip through my chapter in the Jewish Book of "Why Me?"

This year -- armed with some stats from the Brain Aneurysm Foundation and the recollection of my first neurosurgeon's mention that my long-stable aneurysm was 4% more likely to rupture with each passing year -- I took my fruitless contemplation to even greater lengths and started calculating probabilities of what has or could have happened to me.

I and a mathy friend (thanks, Wilk!) estimated the following likelihood of rupture had I taken no action to remove the squid (assuming a baseline risk of .5%, based on the BAF numbers):

Year	Likelihood of rupture (uncompounded)	Likelihood of rupture (compounded)
1	0.5%	0.5%
2	4.5%	0.52%
3	8.5%	0.54%
4	12.5%	0.56%

I mentioned this was a pointless exercise, right? Depending on your risk tolerance, the odds don't look so bad; but it doesn't matter, because what happened happened. And if it was going to happen, I was certainly much better off in bed at the MGH ICU than falling to the ground wherever I happened to be. There's very little value in trying to predict all the ways our lives can go wrong, based on statistical analysis or neuroses. In my own private Hunger Games, the odds were ever in my favor.

Ignoring that reasonable perspective entirely, I also went back to a medical disabilty calculator I have access to at work and did some searches on my past and Jamie's upcoming procedures (tomorrow):

Ken

Condition/surgery	Estimated Days of Recovery
aneurysmectomy	42-84
subarachnoid hemorrhage	91-indefinite
stroke	21-indefinite

Jamie

Surgery	Estimated Days of Recovery
Hysterectomy	28-42; 82.9 for a man
Hernia repair	1-14

Mind you, these predictions are all based on return to work for a "sedentary" occupation (more true for me than Jamie); and ability to work is only one definition of disability. Case in point, me: The Americans with Disabilities Act defines Disability very broadly as, " a physical or mental impairment that substantially limits one or more major life activities, including major bodily functions such as the functions of the immune system; has a record of such an impairment; or has an actual or perceived mental or physical impairment that is not transitory and minor."

By that definition, I am disabled when it comes to driving and parking but not working. Not to mention what a sticky wicket the "perception of impairment" is.

The calculated days of disability can be adjusted based on age, gender, and geography (I can't tell you how many times I was told my relative youth was an advantage), though I think family obligations should also be factored in. When Jamie looks at these numbers, she's determined that failure is not an option, and I know that sense of responsibility encouraged me to get back to work within nine months. On the other side of that coin, Jamie keeps recounting a story she heard once about a single mother who opted for time in jail over paying off old parking tickets, just to get away from her kids for a few days ("three hots and a cot").

I don't want to be defined by my disability, but I know I've come to identify myself as part of the disabled community.

Terms like "Handicapable" and "Differently Abled" used to seem saccharine to me; now I'm trying to come up with my own: Misabled, Deabled, Reabled, Creabled, Crumbled. Anyone? It's interesting that in golf, a handicap is intended to even the playing field. I guess my handicap would be a 72, so -- as in War Games -- the only winning move is not to play.

The Recovery Curve

Another critical piece of data served to me in the hospital was a fuzzy graph of stroke recovery progress, showing that improvements tended to "plateau" (another way of saying there's nowhere else to go) after one year. I know that suggestion made 2010-11 especially stressful for me and my family. And while Year One did get me home, back to work, and walking, Years 2-4 have been far more accomplished in that they've shown me the flaw in the very notion of "recovery," because it is predicated on the faulty bias that I was in a pedestal-worthy state pre-stroke and that the true measure of progress is a return to "normal". While it is true that I feel safer having balanced my center of gravity and healthier about my improved stamina (though I still have plenty of mental fatigue), my real sense of physical satisfaction comes from my improvement in putting on coats; walking without a cane and carrying things; and just generally doing things one handed (is "compensation" functionally the same as "recovery"?). Not to mention that beyond the one-year plateau, I got my driver's license back, did the Maine Brain Aneurysm walk,
and started using my injury to educate others (speaking at last year's Maine Brain Injury conference, participating in a panel discussion this year), becoming a member of Brain Injury Voices, joining the board of the Brain Injury Association of Maine, and having the privilege of speaking recently to a University of Maine class on the psychology of disability).

I don't know that I can quite call it progress, but I've also gained back all the weight I lost in the hospital -- plus forty pounds (I carry it mostly in my artistic integrity). What else? I've also developed a bit of an online shopping habit.

So, hokily, I'd say the past three years have been about moving from recovery into discovery. There are times I'm actually glad this has happened to me, for the people I've met and the purpose it's provided. Take that, Plateau.

Now What?

I've had some setbacks this year on social and work etiquette. So I know I've still got a ways to go. I'm very happy with my volunteer and advocacy work and hope to expand that. And then there's always the Unknown. I'm still curious about how my brain has rewired and/or healed and would like to get a picture of that, either by fMRI or Brain Mapping. I also might try out the MindWave.

Of course, much of the Unknown has nothing to do with me, as we await the outcome of Jamie's surgery. We've done our best to prepare: Jamie's mother will be staying with us for awhile, I've set up a separate blog and planner space here, and the boys and I have been practicing our bedtime and morning readiness routines.

Problem is, Jamie runs a tight ship and I row a pretty leaky dinghy, in a circle. Our focus has to be on reversing our roles a bit: Helping her, helping each other, and helping ourselves. And she's going to have to let us. The only certainty is change.

Subscribe to: Posts ( Atom )

My Life as a Semicolon ; )

Sunday, October 26, 2014

Never Tell Me the Odds

Ken

Jamie

The Recovery Curve

Now What?

Total Pageviews

Totally Achievable Bucket List (post-surgery edition)

Contributors

Blog Archive By Category

Popular Posts

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.