My Life as a Semicolon ; ): Policy Wonks

Sunday, May 11, 2014

Policy Wonks

There are rare and precious pockets of time in our lives -- time insulated from reality and which create a simpler, focused alternate reality with a select community of membership. For me, I think the first time I recognized that unique brand of experience was "6th Grade Camp" (a week-long sleep-away camp when I was in [you guessed it] 6th Grade). A number of summer programs I did in high school would go on the list as well; freshman year of college; Jamie and my honeymoon in St. John; the summer Wyatt was born (during which Jamie was on maternity leave and I was on unemployment after my teaching position was eliminated), since we had nothing to do except take strolls down the road, sit by the pond, and focus on being freaked out by parenthood; college reunions. And on some level I would even count my months in rehab as one of these pockets, for all the relationships I nurtured and the focus I was allowed on healing.

This past week in Washington, D.C., was another such chance to shed some of the concerns of daily living (don't know how I survived three days without being screamed at or screaming at anyone), be pampered by a hotel microcosm and enjoy having all my needs met within a square mile radius of the lobby (if not in the lobby).

We, the members of Brain Injury Voices, were afforded the opportunity to focus our energy and, yes, our voices on speaking about very personal issues with people we could normally not easily access. A very busy Sunday through Tuesday shaped up thusly:

Flew in Sunday afternoon. Air travel gave us a good opportunity to get our routine coordinated -- me in a wheelchair while my left-hand entourage cared for my luggage (I'm one of the most physically disabled of the group).
Sunday dinner in one of the Washington Hilton's excellent restaurants (paid for through the vast generosity of many donations).
Early Monday morning breakfast and Hospital Award for Volunteer Excellence (HAVE) ceremony with members of the American Hospital Association. While delivered right in the hotel, this event did give me my first opportunity to ride on an escalator since my stroke. That personal achievement and our group's award are emblematic of all we've been able to accomplish in spite of (and because of) our brain injuries.
Monday's lunch, also courtesy of the AHA, was most noteworthy for the keynote speech by "pay czar" Kenneth Feinberg (more about that another time).
Monday afternoon gave me and some members of the group a chance to talk with a representative of a disability insurance Political Action Committee. While I may have to walk a thin line of conflicted interest when it comes to disability advocacy, I've realized more and more how important and advantageous my unique perspective (as both a disability insurance claimant and employee)
can be in influencing both public and private policy changes on brain injury, disability income protection, and return to work.
Monday dinner was with the Brain Injury Association of America, which shed a lot of light on the need for work to bring attention to some of the unique challenges of brain injury (an often "invisible" condition) and build awareness toward easing those challenges, including the reauthorization of the TBI Act (which I didn't even know existed).
Tuesday was our most politically-charged day -- a visit to Capitol Hill and meetings with staff from Senator Angus King's (I-ME) and Representative Chellie Pingree's (D-ME) offices, with about a mile-long walk and secret subway ride through the Congressional catacombs between lobbying sessions. These conversations renewed my faith in our political system.

All of this hard work came after equally-difficult weeks of fundraising and planning (though, fortunately -- because the itinerary was mapped out by brain injury strategists -- there was plenty of rest time built into the agenda and ample accommodations made for and support provided to those of us who needed it).

Why is it we "practice" things like politics, law, medicine, and religion? Maybe because they're all activities without definitively successful outcomes? Parenting should definitely be added to that list. Hell, living, period, should be on the list. I, for one, am a practicing human being.

My first attempt at a "Scalpie" in Senator King's office (not sure how he procured that sign).

Then I thought it might look better without the nose.

Proof of Legitimacy

We got everything we could have wished for, and more.

1 comment :

Unknown11:27 PM, May 12, 2014
I agree. The moments we spend insulated from our normal reality allow us to focus differently on the 'practice' of living. What I remember about 6th grade is test taking. When you are prepared - which I rarely was - even though you may not know what the test questions will be, the answers fall into place on the page. If you leave everything to the last minute and are good at flying by the seat of your pants you can get lucky and get the grade but chances are you will crash and burn, and live to repeat the failure another day. There is a third half ( as my brother Ben likes to say;) if you surround yourself with enthusiastic people who are up to the challenge, it is likely that the group will persevere. One person is unlikely to be skilled at everything, but everyone is skilled at something and there you go.

So, since this is blogland I feel entitled to philosophize. There are good people everywhere. I'm finding more and more that there are good people everywhere and they are easy to find. Just keep on asking questions. The more you know about someone the more likely you will realize how much you have in common and how likeable they are.

Keep on practicing.

Ross Goldberg

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My Life as a Semicolon ; )

Sunday, May 11, 2014

Policy Wonks

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Totally Achievable Bucket List (post-surgery edition)

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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.