Tag Archives: spirituality

Next Few Days Continued

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It wasn’t long after arriving at neuro ICU when hospital staff began preparing me for life on a wheelchair. Sitting on a wheelchair seemed easy enough but as I soon learned, after a few weeks lying down and after having been intubated with an endotracheal tube implanted in my windpipe, it was quite an ordeal.

To prepare for the wheelchair I needed to be centered on a sling harness which involved being rolled to my left and right as the sling was moved under me. Once centered, straps on the lower and upper sides of the sling were attached to a ceiling lift to transfer me to the chair. The rolling was enough to trigger coughing fits and dizziness but the additional movement from being slowly lifted and swung made it much worse. The process seemed excruciatingly slow and drawn-out because the tubes attached to me and accompanying hardware had to be moved as well without getting tangled or damaged.

On two occasions within two weeks my coughing fits were so violent the trach tube decannulated (partially ejected out of my throat), requiring a stat surgical team to reinstall it and stitch up the wound. Being elevated on the lift the first few times seemed to have a negative effect on my blood pressure. On a few early occasions I became dizzy to the point of seeing stars and nearly passing out.

Initially, sitting on the wheelchair was so painful I would need a dose of oxycodone to be able to stay on it for up to an hour. As days progressed I was gradually able to stay on the chair longer which was especially challenging because for some reason nurses advised I not sleep while on the chair. At first I would listen to music to stay focused, but on the second or third day of wheelchair training Danielle suggested that I try listening to “binaural beats”.

Although I had no memory of it, binaural beats were previously recommended by my brother at the trauma ICU. It’s basically a soundscape using two overlapping tones of slightly different frequencies which are perceived by the brain as a third tone which proponents believe can enhance various beneficial brain waves. The examples I listened to were found on YouTube and most sounded like very slow ascending and descending chord progressions that evoked calmness and peace, which is what I needed during the painful early phase of adjusting to the wheelchair.

I also began listening to binaural beats rather than music at night because I found some helpful for inducing sleep starting from the third or fourth night at neuro ICU.

The Next Few Days at Neuro ICU

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Though I had moments of deep sleep at Harborview’s neuro ICU, more often than not brief lapses into sleep were interrupted by nurses and/or assistants dropping in to administer meds, take vitals, draw blood, or change my sleep position to prevent pressure sores. Of all the various scheduled procedures the position changes were the most disruptive.

In my weakened state at the time changing positions, such as being tilted left or right, would be enough to drastically alter my blood pressure, sometimes causing dizziness. It would also cause coughing fits due to the movement loosening mucus built up around my trach tube. Because of the difficulty coughing and swallowing, I needed the assistance of a suction tube to be able to breathe.

When I was able to sleep deeply enough to dream, I dreamt of walking and exploring familiar environments from the past (usually schools and workplaces). Such dreams continue to be the most common type to this day and probably stem from an innate need to explore. I’m always walking alone and never encounter others in the various environments. Sometimes I find useful items like a flashlight which I need to use, for the buildings I explore are often dark (though for some reason I never feel afraid or anxious, just curious). After a few months of using a wheelchair I’d occasionally realize within the dream that I shouldn’t be able to walk and would wake up immediately after having that thought.

Because of the lack of deep sleep during the night in addition to the regular doses of meds, I was often tired throughout the following day. Even communication was tiring despite it usually being one-way and requiring simple yes/no answers. Listening comprehension was itself a struggle at the time, which was why I opted to listen to music rather than podcasts.

For communicating more detailed information, Danielle had to review with me a system taught by a speech therapist at the trauma ICU (which I had no memory of). It was a simple but tedious way to spell out words using a laminated grid with color-coded quadrants containing a set of letters in alphabetical order.

To communicate a specific word I would indicate the color of the quadrant with the first letter of the word by silently saying the name of the color (hoping the listener can read lips) while focusing my eyes on the quadrant linked to the color. Once the correct quadrant was understood I would mouth the name of the letter and if the listener didn’t understand they would have to ask yes or no for each letter in the section. When the correct letter was found they would write it down and move to the next until the word was deduced.

Fortunately this system didn’t need to be used very often at neuro ICU, mostly when Danielle or my mom wanted to help me select media to keep myself distracted while bedridden and unable to talk. Finding something I wanted to watch was often difficult because what I had in mind was something escapist yet relevant, abstract but not overly convoluted and with a message of hope. The films that helped me most to get through those times were Strawberry Mansion, Linoleum, and The Fall. In addition I had time to rewatch dystopian fare I’ve always enjoyed such as Children of Men and Max Headroom.

Danielle and my mom spent much of the time monitoring my health and getting help from nurses as needed, providing water and the suction tube when needed, working on medical, insurance, and financial matters, and offering words of support which I could acknowledge but not reciprocate. I imagined it might have been almost as traumatic watching me go through various ordeals as experiencing them first-hand. Later in the week it was determined I was ready to sit in a wheelchair, which initially wasn’t pleasant but at least it gave me something to do.

Ruminations on Trauma

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Once again focusing attention on my immediate situation, I self-assessed how I felt. The adjective I kept coming back to was “traumatized”. At first it didn’t seem quite right because I associated trauma with survivors of violent assault. Upon further thought, I understood how it results from any violent event and could be physical as well as psychological.

Though I have no accessible memory of the crash that caused my injury, it’s possible a buried subconscious memory exists. At times I couldn’t stop recreating scenarios of what probably happened mixed with fantasies of what could have happened (either dying or escaping unscathed). In any case, the injury resulting from the crash including aspects of hospitalization, was itself a source of trauma.

Unless one has experienced it, it’s difficult to imagine the horror of waking up in a newly immobilized body especially if one was relatively healthy immediately prior to the injury. It instantly shatters any illusions one might have had of a just universe or merciful higher power. But the evidence was always there, from psychopathic war criminals and health insurance CEOs living in luxury to innocent children killed and maimed in indiscriminate bombings and countless sick and injured living curtailed lives of misery due to denied claims and inaccessible treatments.

Initially it’s like a waking nightmare that never ends. One wouldn’t wish such an affliction on one’s worst enemy, much less easily accept that it’s actually happening to oneself. Even typing this now, nearly a year after the crash, waking life still sometimes feels like a bad dream.

As the reality of the situation sets in it begins to feel more like a fracture or demarcation point between two very different lives and lifestyles. Though fundamentally one remains the same person, the extremity of the physical change makes changes in personality, priorities, interests, beliefs, self/public image, and relationships, inevitable and how could it not?

Although in my case I experienced no physical deformation and associated acute pain, it was nevertheless traumatic to so suddenly lose such a large part of oneself. Especially early on, it was odd to feel so disconnected from one’s body despite appearing healthy on the outside (aside from breathing tube, nose tube, catheter, IV line, etc).

In a sense, my injury was analogous to accelerated aging. Rather than a gradual loss of certain functions and abilities over time, it’s a rapid loss of many functions and abilities instantly. At the same time, quadriplegia evokes the experience of infancy such as the many times when one is more of a spectator rather than participant and having to rely on others to attend to basic needs. Quadriplegia is not as restricting as Locked-in Syndrome, in which the only body part capable of movement are the eyes, but it is still a significant reduction of freedom and a loss of one’s primary means of interacting with the world.

From one’s new perspective, life pre-injury was one of relative comfort, ease and happiness (even if it didn’t always seem like it at the time). Life post-injury may have moments of comfort, ease and happiness, but much shorter, fewer and farther between, making them all the more precious. On particularly challenging days, sleep also offers a welcome respite as it did that night.

Journey Back Inward

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Though I can’t speak for everyone who has suffered spinal cord injury, my experience had destabilized every aspect of my life to the point where I questioned who I was. Delving into memories was one way to ground myself, but at the time more recent memories were all too painful reminders of what I had lost.

Another strategy which I gravitated towards intuitively was to create a narrative. I began thinking about how to put such an overwhelming experience into words as if it was a book or screenplay. My goal wasn’t to actually create media but to entertain myself during long sleepless nights, though some of these musings were memorized and included in these posts.

Creating a narrative also helped integrate pre and post-crash lives (which at times still seems as disconnected and dissociated as my mind from my body). Part of it involved making sense of the senseless, a struggle which also draws people towards religion and philosophy in times of crisis. I’ve had an interest in both for a long time, sparked in part by cannabis and entheogen experimentation throughout my early to mid 20s. However, the perspective provided by spinal cord injury opened up a deeper emotional and experiential appreciation.

Oddly, qualities which one might think would prepare me for my fate also presented unique challenges. For example, pre-injury I often felt I was “living in my head”, preoccupied by fictional, theoretical, and speculative topics. Much of my waking hours are now focused on pragmatic matters like correspondences and research related to health, bills, insurance, social security, etc. which is still in the mind but in a way not previously accustomed to. This is partly why my writing been more sporadic lately.

Similarly, pre-injury I was often immersed in multimedia of a wide variety of genres. While I fortunately still have access to electronic media, my interest in physical media has significantly decreased. I thought about my library of rare and obscure books collected over many years I was once so proud of. Not being able to read them without help nor able to enjoy the tactile pleasure of holding them, I lost interest in owning the books. I could only hope to get help selling them on Ebay or giving them to people who might value them as I once did.

I was and still am somewhat of a loner, though I can and do reach out to people when I want to via internet. Having “alone time” has always been important and I still get enough of it, but what’s different now is that activities that were previously private (ie. showers, bathroom, toothbrushing, etc.) are now shared with a caregiver out of necessity.

Prior to my injury I was fortunate to have never needed to be hospitalized for anything major other than a minor stroke in 2019 (which I completely recovered from within a month). I had long been semi-health-conscious, eating healthy most of the time and structuring my life to stay somewhat fit without having to go to the gym. My goal used to be longevity with a focus on quality of life. Now my goal is pain management, preventing my health from deteriorating, and regaining as much health as I once had as possible.

Even while relatively healthy, for some reason for much of my life I just didn’t feel comfortable in my skin. It seems humorous thinking back on it now because I’d do anything to feel as comfortable in my skin as anytime before the crash. Especially right after it happened, my body never felt so alien, hostile, and confining.

Changing Relationships

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As much as Danielle’s support motivated me and as fortunate as I was to have it, I couldn’t help but question whether I deserved it. Before the crash I was well aware that my job pulled in less income than her’s, so I compensated by doing chores she was less inclined to do such as vacuuming, fixing things, taking out the trash and recycling, anything dealing with technology, etc. I also took pride in providing at least a sense of security and stability. Now I’ve become a liability and source of instability, no longer being able to contribute economically other than disability claims and needing a lot more resources to sustain my health.

Just as my role in my marriage was altered, I thought about how all of my relationships would be fundamentally changed. I regretted never deepening any of the numerous workplace friendships I formed over the past few years. There were many coworkers I genuinely liked but never spoke to at greater length than sharing short anecdotes or trading compliments and pleasantries either because of social awkwardness or perceived lack of time. Now I know I should have made time because I’ll miss even those brief interactions and it’ll be just a matter of time before we fade out of each other’s lives.

I’ve never had a huge circle of friends but felt close to all of them, though I could have done more to express it. I’d make an effort to show up when invited to get-togethers and even organized my own, though in recent years such occasions became less frequent. I assumed most friends had become too busy with major life changes such as new jobs, new homes, kids, etc. When I saw all of them come out in support after my injury, I felt intense gratitude as well as regret for not reaching out more before.

Seeing my mother in Neuro ICU and the hazy memory of my father in Trauma ICU, while comforting, also reminded me of how relatively frail they now are compared to my childhood memories of the 70s and 80s. This should have been the time I started doing more to help them instead of needing more of their help. The same could be said for my in-laws, who continue to do so much to help Danielle and me despite having health issues of their own.

As an escape from the guilt and regret associated with others, my thoughts drifted further inward.

Grief and Gratitude

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As much as I wanted to engage in magical thinking I knew it was a healthier choice to come to terms with my new life, as painful as it might be. In an attempt to provide some sense of acceptance and closure, I visualized places and activities that in all likelihood I would never go back to again. Examples included local mountain trails, snowshoe hikes, and kayak trips, paddle boarding above sea turtles in Hawaii, swimming with sea lions, exploring a cloud forest in Nicaragua, touring caves and castles in Slovenia, walks along beaches and sand dunes, etc. After a rapidfire flashback of countless memories, I gave thanks for having had the chance to experience them, then bid them farewell.

Most of those fond memories were with Danielle and many wouldn’t have happened without her careful planning. Because she’s a social worker and I was a mail courier, we never had an abundance of non-discretionary funds. Thanks to her research and strategic use of our resources, we shared many experiences that would normally be beyond our price range.

Though I never doubted she would stay with me through the ordeal, I worried about what would become of her. Even with insurance and social security my condition was likely to drain our savings. She would sacrifice not only future vacations but possibly retirement and health savings as well. As my primary caregiver, the physical toll and added stress would inevitably affect her health and quality of life. Realizing that in all likelihood I would be condemning her to a life of drudgery, I experienced a different form of “survivor’s guilt”.

As an alternative, I envisioned a transition from unconsciousness to death on the street at the site of the crash had first responders taken a little longer to arrive. Even though my life would end sooner, it’d be a relatively quick and painless death. Danielle would be grief-stricken for a time but at least she’d have a chance to lead a normal life again. That was how I honestly felt, but since then there have been moments we shared which approached the happiness and normalcy of our lives before my injury. Though such moments aren’t always without pain and stress, the sense of possibility and hope they present make me realize my new life is a blessing as well as a curse.

Some might view my surviving the crash as a miracle, but what I feel is the true miracle is that I was fortunate enough to marry someone who would sacrifice so much and fight tirelessly for my well-being and a future together. Mostly because of her I continue to struggle to regain health and adapt.

Another Long Night

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As Danielle and Florence prepared to go back home for the evening, they made sure a mouth-activated nurse-call button was within reach in case of an emergency. They both gave a farewell hug which, while emotionally comforting, was physically painful not unlike putting pressure on a bruise.

Danielle also set up a small bluetooth speaker connected to my phone. At home I’d occasionally listen to music or a podcast through an earpiece to be able to sleep through the noise of my c-pap machine. Since my mind was still too foggy to follow a podcast I opted for music on a Spotify playlist.

I started creating the playlist around 2022 and envisioned it as a sampling of songs for an imaginary pirate radio station (inspired by early 90s Radio Free Hawaii). It gradually grew to many hours of music and is the same playlist as the one on the Spotify widget on the bottom-left corner of this site. I hoped it’d be a distraction from obsessive thoughts, but it backfired initially.

In my fragile state of mind I felt highly attuned to the emotions of others including the musicians’. Any song performed with a modicum of authenticity (especially involving themes of heartbreak or loss) was enough to trigger a steady flow of tears. This was surprising at first because I normally wouldn’t be so moved by music, but of course my circumstances weren’t normal and I struggled to hold back tears for the sake of my visitors throughout the day.

Another characteristic of some of the triggering songs was their association with specific memories. I was transported to happier times with Danielle such as driving to a campsite, attending concerts, dinner parties with friends, even cooking breakfast at home on a random weekend. These memories led to a different train of thought which was all of the activities I could no longer do and places I could no longer see in person.

At this point I was well aware I was spiraling into depression but gave myself permission to continue. I’ve always had a tendency to suppress my feelings but I felt if I continued that pattern it would make the trauma worse.

The First Day Continued

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When Danielle and Florence first visited me in the Neuro ICU, it felt like the first time I saw them since before the crash. On further reflection I recalled the hazy dream-like hospital room that was actually the Trauma ICU. My memories of it even at that time seemed faded and fragmented whether because of the heavy medication or a side-effect of physical and/or mental trauma.

Regardless, how could I not realize I was quadriplegic through that period which was at least a week? I tried hard to recall what people actually said to me but could only remember portions of my mother explaining how my family scrambled to get to Seattle and my brother Daryl explaining something about a computer.

Part of the missing information could be attributed to impaired hearing, since I noticed sounds coming through my left ear had a slightly distant or muffled quality. But I think the main factor was my fragile mental state compounded by heavy medication causing faulty memory. It could also be that “selective forgetting” was a way to protect myself from uncomfortable information my mind was incapable of accepting.

One example was at some point that day I felt the urge to urinate and thought I’d need to call the nurse for a bedpan. This alarmed my visitors because they witnessed the same scenario at the trauma ICU not long before. They explained for a second time that I had been catheterized shortly after being admitted to Harborview.

Perhaps suspecting there’s other important details I hadn’t retained, Danielle provided a detailed description of my injury. Though I had deduced what what was going on with my body, it didn’t hit home until she described it as the same injury suffered by Christopher Reeve. She then asked if I knew how I was injured and after I gestured “no” she recounted what she knew about the crash from police and first responder reports. Even though I had no prior memory of such details, it didn’t come as a complete surprise since a bike crash was always the most likely explanation. She described surgery scars along my neck and spine that resembled tattoos and puncture wounds on my head from having it bolted down to keep it from moving. I couldn’t feel them at the time but did later on.

Also new to me (though likely recounted before) was the timeline of my stay at Harborview. To me it felt like it could have been anywhere between a few days and a month. In actuality it had been about two weeks. Even more surprising was learning I had flatlined for a few seconds on at least two occasions. Danielle became teary-eyed as if reliving those moments and seemed almost as re-traumatized recounting repeated unsuccessful attempts to get information from my employer’s impenetrable HR department.

Although I retained a partial memory of it, my mother described how she, my father and older brother arrived at the hospital just two days after my crash. My dad and brother had to go back home after about a week but my mom planned to stay for three months. I was appreciative for their visit because my parents had been reluctant to travel by plane since the start of Covid in 2020.

Throughout the day we were frequently interrupted by nurses taking vitals and refilling the IV with saline, liquid food and medications, staff members changing my bed position and cleaning the room, and phlebotomists drawing blood samples. An odd side-effect of my lowered metabolism (or slowed-down state of mind) was that everyone’s movements seemed “sped-up”. The entire day seemed to go by rapidly as well and before long it was evening.