My Life as a Semicolon ; ): June 2017

Saturday, June 17, 2017

POV

One of my biggest goals in leading the Disability Employee Resource Group at work is to personalize the disability experience and empower other employees with disabilities to come forward and support one another. One of the ways I attempted to do that last month was to share disability Point of View videos like this one. That inspired me to put on a bike helmet and GoPro camera and produce my own POV video (below; it's about seven minutes long). If you're reading this, there isn't much that'll be new to you, but it was fun to try and tell my story in a different way.

Sunday, June 04, 2017

Damaged Goods

I started this last February, offline, but wanted to pick it up again...

I’ve written about this before, but nothing is a harsher reminder of the burden I place on my family than a snowbound, power-out day. No electricity means no heat and no water (the wonders of being on a well).

The screams of frustration from Jamie and the boys, who are trying to at least clear the snow from the walkway, the top of the drive, and the edges of the roof (ice dams are laying in wait to pry under the shingles and leak come spring) rattle around my echo chamber of a brain, reminding me that it’s my place to be suffering out there with them, instead of sitting in my pajamas, stoking the wood stove and lamenting my fate (that too feels like a luxury).

On a similar note, out of the blue I received a letter from the Bureau of Motor Vehicles requiring me to have my doctor sign off on my ability to drive, despite the fact that I’ve had my license back for four years without incident and nearly five since my last seizure. I’m sure it’s all standard protocol, but nevertheless screams that I can’t escape the perception that there’s something “wrong” with me.

Interesting, too, that this all comes as I embrace myself as a person with a disability and try to advocate for and support other disabled employees at work. One of the biggest challenges there is finding people who will self-identify that way, either because of the stigma they feel is associated with the label or an unwillingness to let go of their “normal” identity. I understand both of those perspectives: Becoming disabled can happen in seconds. Living with a disability is a learning process that takes years, not unlike mourning the loss of a loved one, except the loved one is you. Even though I’ve grieved and moved on in many ways, I can’t fully escape that other guy, nor can the people who love him/me.

Oh, and have I mentioned that the lice outbreak in our house a couple weeks ago has suddenly reared its ugly head (pun intended) again this weekend? One more barrage of things for Jamie to deal with (buzzing hair, washing and drying every piece of cloth in the house) and blame herself for (obviously, she isn’t responsible for their existence but is responsible for their extermination, because I’m of no use in the process). Lice is a lot like disability, in terms of that inaccurate social stigma (lice=dirty; disability=weak and looking for special treatment).

And it just happens to be my birthday. I thought I’d had my mid-life crisis at 40 by having a stroke but have actually found 47 harder in many ways. It’s the confluence of getting older, feeling like I still have a lot I want to accomplish, and having little energy to commit to any of it.

Jumping ahead to the lovely springtime of early June, I'm happy to report that we survived the power outage, the lice are gone, and I'm well on my way to empowering more employees to embrace their differently-abled side (gotta find a better turn of phrase for that -- re-abled? abilified? super-compensatory?).

One of the perks of working at a disability insurance company is that they recognize the value in disability perspectives. Jamie and I had the opportunity to take a trip to Florida at the end of April for a disability conference, May was very actively recognized as Disability Insurance Awareness Month with a panel discussion about life as a claimant and an experiential learning event filled with disability simulations, I flew solo to Tennessee (first time since the stroke) to tell my story and plans to the Board of Directors, and I drove solo to and from Providence to celebrate my 25th college reunion. We're no spring chickens, but we partied like it was 1989 (except that in 1989 I didn't party).

Needless to say, the year so far has nicely emphasized what I can do and what I've gained from the past seven years, not what I can't do or what I've lost.

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My Life as a Semicolon ; )

Saturday, June 17, 2017

POV

Sunday, June 04, 2017

Damaged Goods

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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.