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Continuation from First week anxieties

Even though I’d been told by numerous people that I should get counseling for my mental health, I didn’t want to make the effort, reasoning I lacked the time between working, physical therapy, doctor appointments, and juggling the many things that needed to be done around the house. More truthfully, I knew if I opened the door to talking about my current angst, a tsunami of uncomfortable baggage would tumble out. It was best to keep everything piled up in my anxiety closet, the door slammed shut and padlocked to deal with my anxiety and fears at another time.

Instead, I thumbed through the book, “On Death and Dying” by Elisabeth Kübler-Ross, MD, rationalizing my anger was stage two of dealing with impending death or a life-altering occurrence. According to Kübler-Ross, people’s initial reaction to catastrophic news is “No, it’s not true, no it cannot involve me.” Denial then devolves into anger, rage, envy, and resentment. According to Kübler-Ross, the next logical question is “Why me?”

I vacillated between the agony I’d tainted our karma by my past behaviors, and the delusion I could click “Ctrl Z” and we could step back in time, spending an extra few minutes eating lunch or at Greenbank Farm, so we weren’t in the path of the woman who recklessly turned left into us. I wanted Rich’s left leg back or at least, badly injured like mine with the chance to once again walk on the legs that accompanied his birth. I’d always coveted his tall, slender legs, and loved to see him in shorts.

I wanted to attend all the events I’d marked on our calendar prior to our accident. In September was Oyster Run, a large motorcycle rally in Anacortes we’d participated in the year before, proudly riding and showing off Gatsby. Also, in Anacortes was the Shipwreck Festival, a huge flea market with hundreds of vendors. On Whidbey Island, I’d jotted down roller skating on Friday nights, and seeing the Whidbey Island Rollergirls on Saturdays. I was looking forward to the Gay Pride Parade in Langley, Canada Day at a friend’s house, and my company’s annual picnic at the Woodland Park Zoo. None of these were possible with both of us in wheelchairs and in a sense, medically fragile.

I was faced with months of putting no weight on my left leg, and when cleared to do so, realized it would be months before I could walk “correctly” and without pain. Rich’s ability to get fitted with a prosthetic depended on the healing of his “stump” (I hate that word), and then going through multiple fittings to fine-tune the fit.

There was no way to know whether he’d be able to eventually walk with ease and not be plagued with phantom pain or struggle to use a prosthetic leg, essentially, an expensive stilt attached to his thigh.

When I realized there’s no “Ctrl Z” in life and no way to go backwards in time, I was filled with fury, which influenced the first few months of my disability. My patience was non-existent. The slightest issue or difficulty would trigger screams, tears, and expletives.

While easily enraged, I didn’t stay agitated for long. I was like a teakettle. Once I let out a little steam, shrieking like a banshee, I quickly cooled off, the heat source stifled. Sometimes, after these outbursts, I’d be embarrassed and exhausted, lumbering through the rest of the day, and welcoming our bed at night. I kept hoping everything would get easier, but that was naïve.

Better and easier was months away. For the rest of June and early July, we judiciously stretched our capabilities, celebrating minor accomplishments as if we’d climbed a towering mountain or ran a marathon in under four hours. Bolstering our determination was the novelty of these achievements.

Newness of relearning

When you’ve been severely injured or recovering from a debilitating illness, every tiny milestone seems humongous and a reason to celebrate. The first few months of being home, we did the bare minimum. Eating what could be put in a bowl and microwaved, going outside once a day to get the mail, getting dressed and undressed, wheeling behind our desks to work, and in the evenings, carefully wheeling to the edge of our entry hall, stepping down into our living room, then using a walker to hop over to the TV, to spend two hours reclined on the sofa, watching a movie or series.

Thuan Pham photo on Unsplash on rajalary

The process of doing laundry qualified as a full-day of activity by the time I balanced a load of laundry on my lap, wheeled from the bedroom, across the house to the laundry room, loaded the clothes, retrieved the detergent from the cupboard over the washer, rinsed out the cup that held the detergent, and then started the washer. Later, I’d put the clothes into the dryer and take them out—all while balanced on one leg—and then manage to get everything into the basket, balanced back onto my lap, and into the bedroom for sorting and putting away.

The process of hanging up clothes, once again balanced on one leg, was exhausting between standing up, moving to where the clothing needed to be hung, and then grabbing something else to hang up, and repeating the process over-and-over again.

The first couple of times we needed groceries, Rich took an Island Transit paratransit bus. They used a lift to get him and his wheelchair into the bus, and then strap down the chair, an activity just two months earlier Rich did as an Island Transit bus driver. It was mortifying to see him treated like an invalid, recalling how he used to help people with their groceries, and easily crawl around on his hands and knees, ensuring everyone and everything was properly strapped down. He took pride in being a bus driver and helping others.

Our first grocery shopping expedition, on a Saturday morning, was humiliating, intimidating and eye-opening. We had no issues getting into our cars, using our walkers. Once at the store, it felt like a half marathon, getting from a handicapped parking space to inside the store, where they had electric scooters.

At this point, it’s important to point out I have horrific issues with knowing which directions to turn a steering wheel when parallel parking or backing up. I’m even worse when steering a boat. Forget about using a rudder attached to an outboard engine. I haven’t the slightest idea whether I need to turn it left to go right or left to go left.

Even though driving an electric scooter should be similar to driving a car, I was a disaster, plowing into displays, getting stuck in corners, and not knowing which way to turn the wheel to backup and free myself. Because I couldn’t put any weight on my left leg, I had to get close to the produce displays, shelves, and freezer cases, which wasn’t always as easy as edging towards them, especially with other shoppers, and Rich groaning with exacerbation at my lack of scooter driving skills.

The more I got stuck, the more frantic I became, unable to calm down enough to remedy my situation. I wanted to throw my hands up in the air, and declare, “We’re done shopping” even though I’d scarcely added anything to my basket.

After checking out, with a cart full of groceries, we did the scooter-to-walker exchange, and then hobbled behind a clerk as he pushed our cart to the car and loaded our groceries into the back. Once inside the car, we could relax, driving to McDonald’s for our routine weekend iced coffees and Egg McMuffins from the drive-up window.

Once home, we needed to complete the last leg of the marathon, getting the groceries and large cups of iced coffee into the house, using our walkers. Let’s just say, it’s very hard to hold a cup with one hand, and a walker with another and hop on one leg. Ditto for holding a bag of heavy produce in one hand while hopping.

After shuttling—and cursing—the groceries from the back of the car to just inside the house via the door from the garage, we hobbled out the garage and went through the front door, where our wheelchairs were patiently awaiting our butts. From our chairs, we easily wheeled over to the bags of groceries, and shuttle them the rest of the way into the kitchen. Then came the task of putting everything away.

By the time we finished, we were too tired to eat our breakfast. The rest of the day was spent recovering from the exertion, along with relishing the tinge of satisfaction that we survived a grocery shopping excursion and it’ll probably get easier. We discussed what went wrong and could be improved in the future.

Cooking, which is usually relaxing, was equally exhausting, especially making something that took multiple steps and lots of chopped vegetables, such as yakisoba, green curry, and pad thai. Because I’m so short, I need to stand in order to prepare food on the kitchen counter. Standing for long periods of time on one leg, while leaning against the counter wasn’t troublesome. The challenge was getting ingredients out of the pantry and cupboards, and vegetables out of the refrigerator.

For one, we crammed too many groceries into one bag. Using more bags would make it easier to lug them into the house. We also decided it would be better to park somewhere nice to enjoy our breakfast in the car, so we weren’t too tired to eat it when we got home. And more importantly, we’d have more energy with food in our bellies.

Once I secured the necessary vegetables, I had to turn around and place them on the island, then push them across the island towards the sink, transfer them to the counter by the sink, wash them, and then relocate them to where I’d placed the chopping board.

Once chopped, the preparation wasn’t too challenging, because I could sit in my wheelchair in-between adding and stirring the vegetables and other ingredients. Even so, gathering the ingredients for the sauce wasn’t as easy as when I had two working legs and could scramble between the refrigerator, condiments and mixing bowl cupboards, pantry, stove, and sink.

Like grocery shopping, the preparation of a meal, which we ate for four to five night was cause for celebration.

Accepting good-enough

With months of confinement to wheelchairs, at least through September, we had to redefine normal, accept good-enough, and overlook what wasn’t possible. Normal was doing a handful of activities throughout the day, focused on dressing, eating, caring for the cats, working and attending to bills, getting to appointments, and retrieving the mail.

Good enough was suppressing my natural tendency to ensure everything is put away, counters cleaned, floors swept and mopped, laundry done weekly and clothes immediately hung up and put away, and the kitty area tidied. All of this is possible before the accident, but not so easy afterwards. So, I had to learn how to accept good-enough.

It was a struggle to overlook the dirty floors, cluttered counters, disheveled bed with an extra pillow to prop up my leg and a blanket to cover it. It was distressing to see my house plants dropping, and our master bathroom an obstacle course with multiple shower chairs. There were three walkers strategically placed around the house, along with two pairs of crutches and a three-footed cane. In the garage was an extra wheelchair, along with several types of walkers, donated by friends and neighbors.  

I had to pretend I wasn’t deeply distressed at the inability to take down and refill the hummingbird feeders. While I could somewhat easily put birdseed in the dishes on our deck, I could easily clean-out and refill the birdbath on the deck, and I certainly couldn’t put birdseed in the “bird corral.”

Photo by Dark Labs from Unsplash on rajalary

When we first moved to Coupeville, quite a few songbirds and doves who were dining at our house were killed by kamikaze hawks and falcons. I was deeply concerned about the quail who would scramble across the lawn and feed by our deck. I cleared an area by the walkway, underneath a grouping of conifers, and used old railroad ties to create a maze where the birds could feed. It would be exceedingly difficult for a predatory bird to swoop in and grab a bird in-between the ties. The structure provided successful, providing a safe feeding station for a variety of birds.

Because I would need to go down the multiple steps to reach the walkway, and then walk 20 feet, there was no way I could place food in the corral. It was upsetting to see the quail scurry across the lawn only to find nothing for them to eat.

My only respite was going to physical therapy, which was a short drive away. I welcomed seeing the receptionist who was always cheerful. While I waited for my session to start, I’d occasionally talk to other patients, which provided me with some perspective, or at least, a bit of empathy. The therapists were awesome, helping me both mentally and physical. Plus, it was awesome do some exercises and use the reclining bike, even though I was only allowed to pedal forward-and-backwards, and not in a circle. Additionally, the therapists gently stretched my leg, and massaged the aches and pains.

I was always in a better mood after going to physical therapy. Rich decided not to go to therapy until he got his prosthetic leg. He was more content to simply sit in his wheelchair, and occasionally use his walker. Then again, he was in a constant state of confusion, forgetfulness, and acquiescence.

Despite my predilection for tidiness, I had no reservations about spending my evenings peeling the dead skin off my left leg, foot, toes, and heel, and leaving piles of dead skin on the end table by the sofa, or on the floor. It was a visual, and admittedly disgusting display of my raging fury and resentment towards my situation. For months, there was a six-foot radius of dead skin around the sofa where I watched TV in the evening.

When I fractured my pelvis in 2007, I’d also experienced excessive skin shedding. I remember putting a casserole dish of hot water on the floor, and soaking my feet in it, and then sluffing off layers of skin around my toes and on the bottom of my feet. My feet were so itchy!

The loss of skin was ten times worse for this round with the skin blistered on the lower half of my left leg as if I’d had a bad sunburn. Additionally, the thick skin on the bottom of my feet started peeling. I had to be careful not to rip it off since it wasn’t fully dead and would bleed when I yanked on it. Rich used manicure scissors to cut off the loose pieces of skin otherwise, I’d fuss with them while watching TV, and inevitably make an open wound.

Some of the skin on Rich’s stump and right leg also peeled, but it wasn’t as bad as mine, mainly because my left leg was considerably swollen, stretching the skin. It took months until I removed all the flakey skin on my leg, and the callouses at the bottom of my foot. Afterwards, the sole of my left foot was like a baby’s, smooth and soft as if it hadn’t been walked on.

Necessity of overlooking

I don’t have the gene that allows me to overlook disarray. Even before the accident, I struggled to ignore yard and housework that I would have done if I wasn’t working. I had to continually reassure myself that I could tackle the tasks in the evenings after work or on weekends. And Rich would remind me that no one from House Beautiful would be visiting.

After the accident, I didn’t have the luxury of tackling projects in my off-hours because the only yardwork I could do was trim the bushes along the sides of the driveway. I couldn’t go into the garden to pick flowers or vegetables, water or even wander down the pathways. There was certainly no way I could pull weeds, dig in the dirt, or tidy errant bushes.

The same held true in the house. I could kind of sweep from a wheelchair, but certainly couldn’t vacuum, wash the floors or move furniture to clean underneath. Yes, I tried, but the effort was more exacerbating than productive. My pride in having a tidy house was replaced with the distress of having overlook to gunky floors and linty rugs, and Rich wasn’t in favor of hiring someone to clean the house.

The hardest to overlook–or more aptly not respond to—was Rich’s state-of-mind. He has hearing aids, which he used daily when he drove an Island Transit bus. Since the accident, he hadn’t used them, and had no intention of using them except when he met with his speech therapists who was charged with evaluating his cognition. Knowing he needed to pass the tests she gave him, I insisted he wear his hearing aids so he could clearly hear and respond to her directions.

When Rich doesn’t wear his hearing aids—rarely when at home—I need to speak loudly or more often than not, shout to convey what I’m saying. Having suffered a traumatic brain injury, and undergone extensive brain surgery, he could neither properly hear nor retain information. I had to repeat information and instructions over-and-over again, day-after-day because his short-term memory was nonexistent. I had to tell him where things were located in throughout the house and in kitchen and how to prepare something as simple as adding water to instant mashed potatoes and heating in the microwave.

In our shared office, I could hear him repeatedly calling the same places, such as his insurance company, and asking the same questions over-and-over again, not comprehending what they told him, and taking unintelligible notes on disjointed pieces of paper. And because he was having issues with reasoning, he struggled to remember how to do things on his PC. Since I’d never paid attention to our finances or paid any bills, I was at a loss to help him. There was no way I could figure out the jumble of our finances with our having numerous checking and savings accounts and paying bills for our Coupeville house and three rental properties.

Especially upsetting was that Rich didn’t appear to understand that I’d also been injured and the extent of my medical care. He therefore didn’t know why we were getting so many bills. He was particularly perplexed by the bills from ambulance and helicopter companies. On the day of our accident, we ended up in three different ambulances, one from the accident to the hospital on Whidbey Island, and then two different ambulances when we arrived at Harborview Medical Center, each from two separate helicopters. Harborview is building an overpass, so in the future they won’t need to have ambulances take patients from their helipad, across their driveway and to their emergency center, barely a two-minute jaunt.

To help Rich understand how the ambulances and helicopters fit together, I created a timeline, so he could relate the sequence to the charges.

Once home, Rich had quite a few doctor’s appointments. He used Island Transit paratransit, which required he make an appointment the day before. Additionally, he used paratransit to run errands like grocery shopping. Stacey, his daughter, had set up a shared Google calendar, which enabled her and others to view our appointments. Rich, however, couldn’t figure out how to access the calendar and didn’t bother to update it with his appointments.

After a few frustrating weeks of my trying to keep track of his appointments, and constantly reminding (i.e. screaming) at him, I output and posted the calendar in our office. It proved to be a good solution. Additionally, I became more proactive, writing and printing out lists and instructions for him.

Despite the reality of our situation, I kept hoping it was just a bad dream. That Rich would wake up, back to his old self, with two working legs, a keen sense of humor, and the determination and intelligence to power through any adversity. The more I denied the reality, the more I withdrew from people, content to make it through the day, and resort to sleeping pills at night to dull the mental, emotional and physical pain.

Every time I wheeled into our large walk-in closet, I came face-to-face with our collection of shoes, neatly stacked on shelves. Shoes for two working feet. While I realized I’d eventually graduate from my multi-colored Crocs, which I wore every day since Stacey brought them to me at Harborview, I was convinced we’d need to toss out all of Rich’s left shoes. I’d never see his long legs in slacks, blue jeans, or shorts, his slender feet in a pair of dress shoes, Converses, or flipflops.

This false reality—the reality of Rich only being able to wear one shoe—haunted me.

Thanks to Thuan Pham and Dark Labs for their fabulous photos on Unsplash