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Continuation from Getting Reacquainted

Even though we’d been apart for less than a month, Rich was a different person. The trauma of the accident and loss of his leg coupled with his brain surgery changed his personality. He was impatient, angry, confused, and indifferent.

Disappointed and heartbroken, I wasn’t blindsided.

I’d been prepped for the possibility he’d emerge as a different person. The week before, I was told he may never return. While I saw glimpses of his personality breaking through his veneer of animosity and disorientation, for the most part, I felt like I was living with a stranger. And the only way I could cope was to compartmentalize.

Every morning, my focus was switching out my pajamas for exercise pants, a tee-shirt, and socks. This seemingly mundane task was challenging, owing to the need to take off and put my leg brace back on, blindly reaching down and undoing the straps by my foot, removing my pajama bottoms, slipping on my undies and my pants by putting the garments on the floor, wiggling my toes around until I “engage” them, and then reaching down, and pulling them up. Ouch.

It hurt to bend down. And putting my leg brace back on was significantly more difficult and took more coordination than taking it off.

Twenty minutes or so later, I would wearily wheel myself into the kitchen. I was usually in considerable pain, having taken my last dose of two extra-strength Tylenol twelve hours earlier. I was also taking baby aspirin twice a day as part of a research study, comparing the effectiveness of baby aspirin to heparin for preventing strokes. While the latter was probably more effective, it needed to be injected twice a day, so I was happy to take my chances with easy-to-swallow, over-the-counter pills.

My repertoire of daily pills also included vitamins C and D, calcium, and an herbal mix I’ve been taking for years to “cleanse” the system.

With little appetite, and often nauseous from taking 6,000 milligrams of Tylenol daily, the maximum recommended daily dose, I usually had hot chocolate and a hard-boiled egg for breakfast. Sometimes, I’d have yoghurt with homemade granola, a mixture of lightly toasted rolled grains, raisins, and cinnamon.

I didn’t really care what Rich ate because I was already overwhelmed with getting my breakfast and working. Our neighbors had purchased a selection of fruits and vegetables, cartons of eggs, and other easy-to-prepare items, plus our pantry was overflowing with granola bars, crackers, instant potatoes and grains, canned goods, shredded wheat, cookies, candy, and much more, so there was plenty to eat.

Like me, Rich didn’t have much of an appetite. He was happy nibbling on a few things, reading stuff on his phone, and trying to make sense of the stack of papers on his desk.

Navigating my wheelchair behind my desk, and out again, was a constant challenge, tackled multiple times per day. My left leg was hostage in a metal boot and elevated 18-inches or so off the ground on a footrest. To get behind my desk, required rolling between my desk and a bookshelf, and then sharply turning the right-wheel while barely moving the left. If I did it skillfully, the wheelchair would gracefully turn 90 degrees, and I’d end up somewhat centered under the desk. I would then move slightly forward, backward, and sideways until I was situated in front of my large screen monitor.

Extracting myself from behind the desk was equally challenging, and often more difficult because I had to exit backwards, and it was difficult to turn the wheels while confined on three sides.

More often than not, I’d end up screaming because I couldn’t easily get behind the desk or out, and desperately needed to get to the bathroom, which offered another set of challenges. Since my wheelchair didn’t fit through the door, I needed to use a walker, straining my gluteus muscles to hold my left leg (and boot) off the floor, while I hopped around, balancing on one leg in front of the sink, and when getting up and down.   

With most of my energy devoted to working – writing sales and marketing content for Microsoft – I had to ignore the state of the house. The floors were dirty, rugs unvacuumed, miscellaneous dishes and packages of food strewn across the kitchen counters and island, magazines and paperwork piled on the desk in the kitchen, clothes tossed on the rattan sofa in the bedroom, bathroom counters crowded with boxes of gauze, tape, and pill bottles, and plants in our front room wilted with browned leaves.

Prior to the accident, I’d do chores in-between working. But there was no way to easily sweep the floor from a wheelchair, let alone vacuum or mop. While I could easily water most of our indoor plants by chauffeuring a carafe of water to plants in our kitchen, dinette, and bedroom, accessing the plants in our step-down living room was problematic. I had to use a walker while holding the carafe. On one occasion, the lid came off, and I spilled a liter of water onto the floor. In retrospect, I had a plastic, covered pitcher, which would have been easier to hold.  

While I wanted to explore hiring someone to clean our house, Rich felt it was unnecessary. To deal with seeing an unkempt house, I had to compartmentalize and bargain with myself, reiterating it was okay if the house was a mess. It could always be cleaned. And as soon as I was cleared to put weight on my leg, I could mop, vacuum, and organize.

In the meanwhile, I needed to focus on what was most important, my work.

Racing mind propels progress

The moment I opened my eyes in the Harborview ICU, my mind was racing. And it never slowed. While Rich nap throughout the day, I struggled to sleep at night, even if I’d been up since the wee hours, ruminating over our situation. While I occasionally closed my eyes in the middle of the day to “rest,” I rarely slept.

At first, I thought it was caused by oxycodone, which can result in hyper vigilance when you cease taking it. But my restlessness and alertness extended way past when I stopped taking it, and I only took 2.5 mg three times over the course of the last 10 days of my hospitalization, so it was doubtful I was suffering from withdrawals. 

The other medications I was taking were over-the-counter, so there was no way they were affecting my brain chemistry. I therefore attributed my hypervigilance to two things. First, I’d skipped to stage two of the five stages of death, as pioneered by Dr. Elisabeth Kübler-Ross. I’d quickly passed through denial and isolation to anger.

Kübler-Ross describes the anger stage as “feelings of anger, rage, envy, and resentment” and a focus on “why me.” I was fixated on what I’d done wrong in my life to sentence Rich to the loss of his leg. Was I too haughty, having finally reached the stage of life when I could let down my shield and simply enjoy working from home, gardening, trying out recipes, writing for fun, and enjoying a variety of activities on weekends? Did I generate our bad karma?

The name of the woman who hit us, propagated the crazy belief my mother was responsible. Afterall, she resented my marrying Rich and moving away. She was bitter my life turned out better than hers. Perhaps, people can instigate good and bad outcomes, long after they’ve died.

I’ve always believed our good luck was attributed to angels so it didn’t seem unreasonable that bad luck can be incubated by someone who’ve died. My mother’s name was Doris. The first name of the woman who hit us is Dolores. Her last name is Morris, which is the name of my mother’s father.

The coincidence was extraordinary. When Rich and I were forced to put my mother in assisted living because she could no longer walk or do anything on her own, she screamed that she’d put a curse on Rich and me. Perhaps, it wasn’t a curse, but destiny.

My rational mind couldn’t overcome the conviction she was responsible. Some of my anger was directed at her for jeopardizing our wellbeing.  

Morgan Vander Hart image from Unsplash on rajalary by Julie Lary
Rich and I used to play Scrabble when we traveled in our motor home. He’d routinely beat me, inserting a single letter between rows and columns of words, creating three or four new words at once. His engineering mind could see patterns while my creative mind resorted to turning a mishmash of letters into a single word.

I was fixated on how Rich’s and my lives had permanently and radically changed with our ability to do what we enjoyed quashed: Kayaking, biking, sailing, snorkeling, and hiking. We’d moved to an island because we both enjoy the water. Now, doing something as simple as walking along the shore bordered on impossible. It would take years for Rich to master walking on a prosthesis, and navigating uneven, pebbly, and boulder-strewn sand, and slippery seaweed and other washed up riffraff.

I was enraged that our beautiful motorcycle, Gatsby had been destroyed, along with the glorious enjoyment of riding on a crisp fall day or sunny Sunday afternoon. I loved seeing Rich, dressed to ride, his slender legs in blue jeans with slightly rebellious black boots, and tailored Harley Davidson jacket. And I felt equally hip with my Harley Davidson boots, which I’d spent an afternoon searching for on the Internet before ordering. My black leather jacket from Italy, I’d found at Value Village for less than $10. I paired it with a long silk scarf, cut from an antique kimono.

We both loved Gatsby. Rich enjoyed cruising along country roads, and I relished sitting back and watching the world roll by, eagles and birds overhead, and unobstructed views of farmland, marshes, shorelines, and neighborhoods. It was easy to “hop on the bike” and spend a few hours relaxing, the powerful engine easily zipping up hills and coasting down the other side. That thrill was now gone. 

Months before the accident, we’d signed up to take a world cruise, starting in February 2021. The voyage would take us to Honolulu, Suva, Fiji, Australia, New Zealand, Bali, Singapore, and many other seaside towns and cities. However, with Rich unable to easily walk, and meander barefoot in the sand, let alone dip his toes in the water, I was furious.

Even being on the ship seemed like a waste of time with Rich unable to use the pool and hot tub, and most likely needing to use the elevators and a wheelchair to get around. The cruise, which we were eager to take, now seemed like another heartache and not worth the effort.

So, I was filled with rage and hatred, which fueled my racing mind.

Kübler-Ross wrote the anger faced by people who are confronted with death or a life-changing events, can be explained as “…few people place themselves in the patient’s position and wonder where this anger might come from. Maybe we too would be angry if all our life activities were interrupted so prematurely; if all buildings we started were to go unfinished, to be completed by someone else; if we had put some hard-earned money aside to enjoy a few years of rest and enjoyment, for travel and pursuing hobbies, only to be confronted with the fact that ‘this is not for me.’ What else would we do with our anger, but let it out on the people who are most likely to enjoy all these things?”

Another explanation for my hypervigilance could have been related to post-traumatic stress disorder (PTSD), a cluster of symptoms that begin and persist after a person has survived or witnessed a severely traumatic or life-threatening event. The trauma puts a person on high alert, which can lead to neurochemical changes.

While I didn’t have frightening nightmares or flashbacks about the accident, I replayed what I could remember over-and-over again in my head. When we got hit, I remember looking up at the blue sky, seeing the fluffy white clouds, and delighting in their beauty, while instantly comprehending “This isn’t good.”

When I awoke, on the ground, in pain, my panic wasn’t over my condition, but the horror of hearing Rich repeatedly moan, “Ouch, ouch, ouch.” Even as I type these words, I can replay and feel the pain of hearing his agony.

One of the symptoms of PTSD is changes in reactivity, which matched my difficulty sleeping and staying asleep, and during the day, being hyper-aware, irritable, and easily startled or upset. I also wanted to avoid people and found little joy in anything besides watching TV, drinking hot chocolate, and listening to Lolitta purr.

It certainly didn’t help that my first assignment, after returning to work part-time, was challenging. The weeks prior to our accident, I developed a lengthy internal presentation for Microsoft sales teams, based on an analyst report. Because it had a tight deadline, I spent quite a few hours, working on it while on our sailing trip in mid-May.

The Microsoft stakeholders wanted to turn the internal presentation into an external-facing one, which meant wading through a 112-page analyst report to find nuggets of wisdom that could be relevant to customers, and then wordsmithing them into digestible bites. Even when writing the internal presentation, I kept whispering under my breath, “This is so esoteric, wonky and niche!”

It took several weeks to write, and rewrite the presentation, until it had the right balance of detail and interesting proof points. I’ve done dozens of projects for my employer, and hands-down turning the gibberish from the analyst report into an internal and external presentation was the worse. While the final presentations looked great, I felt the content was meh.

I was happy when I transitioned to another project and escaped from the esoteric. Working was the only aspect of my life that provided a molecule of satisfaction and normalcy. It didn’t matter that I was in a wheelchair because my mind was engaged, and my fingers madly typing. And because I couldn’t easily jump up to do a load of laundry, vacuum a rug or refill our hummingbird feeders, I was content to work.

The only distraction was Rich who was making me batty.

Earth to Rich

On one hand, I felt badly for Rich. He came home to a 3-inch stack of medical bills and notices, along with our usual accumulation of mail and bills tied to our Coupeville house, along with our three rentals houses. Rich usually reviews and updates our finances in Quicken every day. He hadn’t touched the program in over three weeks. Making the updates would be time-consuming even if nothing was wrong with him. Having had brain surgery, made it frustratingly difficult.

Also added to his plate was the new reality of having one leg, confined to a wheelchair, and unable to do simple tasks around the house. When he got home, he was still fixated with having garbage pick-up even though there was no way either one of us could wheel a garbage can to the top of our sloped driveway. Since we didn’t want to impose on anyone to put out our trash, Rich thankfully canceled the service. For a few months, Andrea took our trash, putting it in her large trashcan, which is picked up weekly.

While Rich and I generate relatively little trash, our five cats produce many pounds of “clump kitty litter” every week. Once a month, we typically take our trash to the dump and recycling center in Mount Vernon, and bring garden clippings to a local nursery, which composts it. As soon as Rich was steadier on his leg, even before he got his prosthetic, he once again took our refuse to the dump and recycling centers.

An area of bewilderment for Rich was his sundry of doctors’ appointments. First, I’m not sure he fully understood the breadth of his medical issues, and the challenges surrounding each one. He had difficulties keeping straight the names of his doctors, where they were located, and why he needed to visit them. Because I was trying to ignore Rich’s issues, and focus on my own, I falsely believed he could handle his own affairs, but I was wrong.

Bianca Akermann photo from Unsplash on rajalary by Julie Lary
I hate jigsaw puzzles because I dislike structure. I want to free-form everything from writing to cooking to doing arts-and-craft. Rich excels at puzzles. When we rode the ferry, we’d dash to the passenger deck, and find a puzzle to work on. During the twenty to thirty minute crossing, Rich would find and fit into the puzzle twice as many pieces as me.

Everyday was Groundhog Day. He’d seem to comprehend what he needed to do, then the next day, he’d wonder why he was scheduled to visit a specific doctor, and he’d shuffle through the same documents, sharing the same puzzlement over what he was expected to do. Adding to the miasma of chaos was scheduling trips with Island Transit paratransit service.

Because Rich wasn’t cleared to drive, he depended on me or Island Transit to get him to appointments or errands, such as grocery shopping. Being I had to work, which I used as an excuse since I was only working part-time, he had to call Island Transit. You’re supposed to call the day before to schedule a pick-up. A paratransit bus then shows up the next day within a half an hour of the scheduled time. It always felt like Rich was calling days before he needed to go somewhere, and then he would scramble to get out the door when they arrived.

Meanwhile, I was mortified Rich was using paratransit. When he was a bus driver for Island Transit, he relished helping people, driving either a commuter route or a smaller paratransit bus. Now it was him having to use paratransit. I would leave my office, when he wheeled outside, was secured on the lift, and wheeled into the bus, and then strapped down.

I couldn’t deal with Rich’s disability and hated seeing him use paratransit.

There was no way I was going to take paratransit. “No sir!” And fortunately, I didn’t need to. Someone either took me to my appointments, or I drove myself. Even though when I drove, I needed to go up-and-down the garage steps, using a crutch, I was willing to suppress my trepidations if it meant avoiding the humiliation of using paratransit.

Our first week together, Rich had four doctor appointments. On that Tuesday, Stacey took the Port Townsend ferry to Coupeville to drive Rich to Harborview for his initial prosthetic consultation and enrollment in an artificial knee study. He would receive either a mechanical or microprocessor knee, and would be evaluated every month to assess his progress to help the manufacturer determine the effectiveness and usability of each knee.

While in Seattle, Stacey and Rich dropped by the Harborview Amputee Support Group, which was an opportunity for Rich to see other amputees and how they’ve adjusted to life with a prosthetic.

The following day, Rich took Island Transit to WhidbeyHealth to be evaluated by a speech therapist for his cognition and ability to communicate. I implored him to wear his hearing aid so he could properly hear the instructions and subsequently pass the tests. It was important that he do well in these sessions since it would determine if he could drive again. Initially, he was told that he couldn’t drive for six months. The idea of hiding the car keys or more realistically, arguing with him as to why he wasn’t allowed to drive was daunting.

His brain surgery had amplified his obstinance, which was magnified by his belief his reasoning was fine. Nothing could be further from the truth. While I don’t think his common sense and reflexes were impacted, which are the key reasons for preventing people with mental decline from driving, he struggled to connect instances, and his short-term memory was non-existent. For instance, he would heat water to make me hot chocolate, but not know what to do next. Having a package of powdered chocolate by the microwave didn’t provide the “clues” he needed to complete the task.

To my relief, he returned from his initial speech therapy appointment and announced that he probably would only need to go to a couple more, having done well during the evaluation. I took the latter with a heap of salt because his perception may not have reflected reality. He could have felt that he did well only because the therapist kept saying, “Good job,” when in fact, he couldn’t articulate the correct answers.

A few weeks later, however, he was cleared to drive with the stipulation that he continue to work on his cognition by playing memory and attention games like Lumosity.

Times and dates were especially difficult for Rich. I’d remind him to place an appointment on his calendar, but he struggled to get it done. Stacey came up with the solution. She set up a shared Google calendar that she, Andrea, Rich, and I could access. In this manner, I could double check Rich’s appointments and ensure they contained the necessary details.

Additionally, I printed out and posted in our office a calendar of our appointments, so he could refer to them at any time, and at a glance, I could remind him to get ready.

Our first week together, he had two additional appointments, one with his primary care physician to familiarize him with the trauma he’d sustained, and discuss several lingering issues like seeing double and having intermittent sharp pains where his head was sawed open.

He also went to physical therapy for the first time. Unlike me, who enjoyed the opportunity to exercise, talk to the therapists about my injuries, and have my left leg massaged, Rich didn’t see any value in going to physical therapy. Then again, he probably only worked on his arms, which were already strong, and did a few things with a walker. It was probably too early in his recovery to start exercising his “stump,” which was still bandaged with sutures on the end. It would be months before all his sutures were removed and his stump stopped bleeding and festering. At one point, he took antibiotics to clear up an infection.

Worth tied to work

While I started working a few days after returning home, Rich was straddling the line between desperately wanting to drive a bus and help others, and the realization that his working years were over. He kept insisting he needed to find something to occupy his days. I repeatedly reiterated that he needed to focus on getting back his mobility. Plus, there was plenty to do around the house.

It was tough.

He saw the paratransit buses picking up our elderly neighbors and traveling along the main road a short walk from our house. And nearly everywhere he went on the island, he inevitably spotted a transit bus. He constantly replayed how he used to drive the bus, the routes he drove, and the people he picked up. And it didn’t help that his former co-workers were constantly contacting him, offering encouragement, when what he truly wanted was the opportunity to once again don his uniform.

I felt like our first week together was a tornado of conflict. I wanted to be left alone to work and do my own thing. If Rich couldn’t give me the emotional support I desperately needed, I wanted him to go away. I didn’t want to be burdened with his troubles and needs.

Rich was no less conflicted. He couldn’t understand why I was frustrated with him, and why he needed to leave me alone so I could concentrate. He wasn’t wearing his hearing aids, so I had to shout at him. And even if he could hear me, he couldn’t retain anything I told him or clearly understand the logic behind my thinking.

The worse was his loss of identity. He wasn’t an engineer anymore. He wasn’t a bus driver. He wasn’t able to contribute to running the house because he was in a wheelchair. And he wasn’t able to visualize the possibilities of returning to normal activities once he got his prosthetic.

Neither one of us was emotionally available, and from our skewed perspective, our future together was tenuous.

Thanks to Morgan Vander Hart and Bianca Ackerman for their amazing photos on Unsplash