Flavor for the next two months.

The amount of time that’s passed since my last entry is severe! Ah well, that’s what happens. Time spent away from documenting Gabe’s injury was important to rebuild myself and assimilate those gorgeous, little moments into every day life.

The biggest news piece is, at the end of January, Gabe and I signed a lease for an apartment! This is really thrilling (and overwhelming) news for us and it’s a lifestyle hard to picture. No hospital bed? Putting on records? Making one’s own coffee? A real coup. He’s earned every penny of it. In late October, I began seeing changes in Gabe on which I could bank my belief that we had a chance at rebuilding our relationship, and that we could do that in the future without relying on others every hour of every day.

In the last days of December, I asked Gabe’s family to give their blessing, and be a part of the search for an accessible apartment. They gave it wholeheartedly, and of all our leads, we chose a place found by Gabe’s dad, Mike. The apartment is a two-bedroom with high ceilings, southeast facing windows, and smack-dab in the middle of downtown Bangor. It’s a real grown-up apartment with dishwasher, oven/stovetop fan, and impressive water pressure. It was a bowling alley for decades, and before that, an assembly plant for Tin Lizzies.

We’re filling in furniture gradually and I’m in, but the Fajita won’t move until May or June. Right now, he sleeps over on Saturdays and at the end of the month will stay over full weekends. He is STILL living in a sub-acute rehab facility, the same place he arrived at last May. This has got to sound a bit out of the ordinary or spark the thought, “Wow, he’s really messed up.” There’s a convoluted answer to that, but in sum total he is not “messed up” to the point that he needs to be relegated to a skilled nursing facility for the rest of his life. He is still in rehab because he’s been dealt a really good, good hand. Traumatic brain injury survivors typically receive six to eight months rehabilitation because it’s one of those injuries that don’t heal quickly, and insurance severs a venture not providing monetary returns. TBI patients are left with less rehab than they truly need to attempt to recover. Gabe’s stay—fourteen months—is an inordinate amount of time and Donna and I have jumped through to make this happen. I can still remember in California our shared, weekly rounds anxiety aiming to get to Spaulding in Boston! He’s definitely sick of having people about all the time, the smells, the other patients, and especially code alerts, but he’s lucky for it because he’s received four to five hours of therapy daily. He’s making advancements in mat work, bed mobility, standing, transfers, walking, etc. His therapists are indispensable. I hope his luck extends to finding similar winners in out-patient.

Bowling! On a double date with Allison & Josh (not our apt)

There are definite downsides to living at a facility. There is a lack of privacy because a nurse, aide, or therapist is always around; it means there is always someone to do the things he can do himself, or should be relearning to do without help. There is always someone there to speak on his behalf. He is often spoken of in third person though he’s sitting right there, tuned in to the conversation. It must be isolating to be spoken of like an appendage, an object. Gabe is very capable despite his hemiparesis, but I think he is underrated. The constant help develops a “learned dependency,” and it is a disservice to his redeveloping muscles and the neurons coming back on board. It reminds me of a teenager whose parents do his laundry instead of teaching him how to do it himself. In Gabe’s case, I believe this dependency can be undone. He shows great courage in relearning, and I hope this adventure into apartment living encourages Gabe to grow on his own; to enjoy solitude away from scrutiny. The OT are focusing on fine motor skills in daily tasks like small meal preparation (think PB&J, cereal), and at my request, unloading the dishwasher.

I think one of the two largest obstacles Gabe faces is that he is physically disabled–although he would tell you, “temporarily disabled.” This time last year he needed two people and a gait machine; now he uses a cane and one person to help him balance. He ditched the knee-length, right leg, pirate brace at the beginning of the year, and in the fall, his thigh-high, left leg brace was reduced to knee-length. We’ve spent the last month learning to walk together, and have just been cleared to walk without a therapist looking on. That left leg is really getting going. I’ve no reason to feel assured he’ll walk again, but I feel it.

Us. March 2011.

Someone this driven, this dedicated and brutally honest with himself while still rocking a positive attitude, will achieve the seemingly impossible. Neither limb is capable of fine motor movement, though the left leg is developing strength and is rotating from the hip and knee. He manifests a growing despondency over his left arm, which he has the hardest time moving. There is a considerable amount of tone in both limbs yet, which his therapy team believes is the primary reason for inhibiting advancement. Several methods to combat tone are being used and on the table for the future. Though his left side is severely affected, he still accomplishes tasks without assistance. He showers alone. He shaves without help with a razor and tends to his own bathroom routine. He can feed himself. He speaks intelligibly if you don’t mind asking him to repeat what he just said one to three times (rhyming consonants are difficult right now but getting better). He can safely cross a street unassisted. He picks out his own clothes. The computer is no problem to open up and spend a couple hours on. He’s trying his best to best the power wheelchair in navigating tight corners and turns. I’m optimistic we’ll still get to set fire to it some day.

Watching the band When Particles Collide perform, at the Bangor Art Walk, March 2011

Aside from the physical advancements, Gabe retained a great portion of his old self. Still on board are his intellect, and critical processing of topics as widespread as news headlines, pre-calc equations, and bike mechanics to name a few. He can make sound decisions just like you and I can. He is the silent, stoic type as we’ve always known him to be. He never was a talker to begin with. His wit still looms large, and he’s interjecting his play-on-word quips with greater ease into conversation. He knows what he likes and doesn’t like: bikes, food, travel, the Simpsons, Apple, (root) beer. He’s still a vegetarian and loves socializing, loves going out. He’s capable of, and often has, in-depth conversations with me that he brings up himself when we can share a quiet moment. He easily orients himself to time, place, season. He has tremendous attention span, comprehension, and concentration—all things a TBI survivor can lose as a result of injury. It is difficult to see some of this on the surface. You gleam it by spending time with him.

Other than that, we’re watching days tick by on the calendar. I know I look to the future and get stuck on that often. I get stuck on what could be, and will be, happening when Gabe and I can operate as a unit rather than this disjointed, disheveled couple with too many cooks in the kitchen. I have thoughts of when we can get around easier, when we can travel, when we can have a seamless conversation without me saying, “Can you please repeat that?” Then I realize that, like a child, it’s important to be in the moment. We adults anticipate a lot; making two- or five- or ten-year plans is no big deal. Maybe it’ll be more realistic for us when he breaks outta being institutionalized. The only plan I want to anticipate and dream and prepare for this spring is settle this apartment and make it work, then hammer out a schedule that grants Gabe and I independence together and from each other.

I hope everyone is well out there. I know there’s been as much going on this past 19 months with all of you as there has been in our private microcosm of brain injury. It’s hard to quantify the time that’s slipped by. Feel free to drop a line.

Our apt! on the Bangor Art Walk March 2011

More news in a post later this week: cycling and the cell phone.