#4: Mental Recovery Following a Spinal Cord Injury

Most outsiders expect physical recovery to be the most difficult part of spinal cord injury rehabilitation.

I would agree that physical recovery is not easy. I spent hours each day for years trying to move muscles that would not move. I tried to increase strength in muscles that barely twitched. I had invasive, 12-hour surgeries to potentially help me regain strength. I pushed myself to the point of literally falling over and not being able to leave my bed. Physical recovery is not easy.

However, the true challenge is mental recovery. How do you keep from wanting to rewind time and return to your “pre-injury life?” How do you stop making compromises with God (e.g., if you let me do X, I will never do Y again)? How do you deal with people either completely ignoring you or being overly sympathetic? How do you feel confident in a body that barely works? How do you let go of old dreams? Ultimately, how do you move forward and live a productive life?

In this post, I will discuss my mental recovery journey and describe the important factors that improved my mental health.

My Mental Health Trough

My mental health was its lowest about three to four years after my injury.

I was a freshman at Hopkins. I chose Hopkins because I wanted to study neuroscience at arguably the best university to do so. My goal with studying neuroscience was to build a foundation of knowledge upon which I could specialize in either graduate or medical school, depending if I wanted to treat patients or not. At the time, I wanted to cure paralysis caused by spinal cord injuries, and my hope was that a Hopkins education would be the first step in that goal.

Everyone knows the saying “everything happens for a reason.” To cope with my injury, I latched onto the idea that the reason for my injury at such a young age was to advance the understanding of this niche field. This idea became my mission. My injury led to the end of my athletic career, which had been my sole identity. Needing a new identity, I traded “athlete” for “neuroscientist.”

I believed studying and researching spinal cord injuries would fill the hole left by my injury. I believed my happiness and joy would return over time as I made strides in this field of study.

Further, I was highly insecure. I walked with an obvious limp, had hands that struggled manipulating objects, and had muscle atrophy in random regions throughout my body. The physical effects of quadriplegia reduced my confidence. I was less outgoing, less flirty, and less confident. I would choose not to attend social gatherings out of fear that the venue would be inaccessible. I feared being judged by other kids. I worried I would not find a romantic partner.

I also feared being seen with my various accommodations. I wore pants, even in the summer, to cover up the brace that helped me walk. I would try to walk everywhere, instead of using my mobility scooter, even though I could easily fall and hurt myself from fatigue. I could not bare for anyone to know I used catheters to use the bathroom.

The end result was a highly insecure kid who isolated himself from others, feared he would not find love, and believed dedicating his life to curing the injury that afflicted him was the panacea to his problems.

The summer of 2019 was the trough of my mental health. Instead of returning to my parents’ house like other students, I decided to take organic chemistry at Hopkins. I did not expect for the campus to be so empty. The isolation I felt was incredibly intense, as if I was alone on an island. I quickly lost the motivation to study, as I no longer had any social interactions. Isolation magnifies negative feelings.

Thankfully, a special someone entered the scene and helped me turn the ship around.

Turning the Ship Around

That summer, I met my current girlfriend, Caroline, who was an incoming Hopkins freshman.

We connected quickly, likely due to our collective oversharing of personal experiences and traumas (i.e. trauma bond). Interestingly, Caroline had quite an extensive knowledge of quadriplegia and its physical manifestation from watching YouTubers with quadriplegia and other neurological conditions before we even met. Thus, from the start, Caroline was highly empathetic and understanding.

While respectful of my insecurities, Caroline questioned my reasons for them. Why did I need to hide my brace? Why shouldn’t I use my scooter, which would allow me to conserve energy and enjoy the moment? Who cares that I use catheters?

These insecurities did not vanish instantaneously. For our first few dates, I tried my best to appear non-disabled. I wore layers of clothing, hiding my brace and atrophy. I feared looking disabled would ruin my romantic chances with Caroline. I did not want to be relegated to the friend zone because of my physicality.

I ultimately did not get relegated to the friend zone. We became a couple and have been for nearly four years.

Caroline was the reason I turned my mental health around. How?

First, she provided me with a community. Although the community was primarily just her, I now had someone I could connect with each day. We had light-hearted and deeply personal conversations. Importantly, she forced me out of my comfort zone. We went on trips, ate at restaurants, and enjoyed theatrical performances. I no longer struggled with isolation, which I now deem the worse offender to poor mental health. I still fear prolonged isolation to this day because of that period of my life.

Next, she dismantled my insecurities over the period of a year or two through constant genuine love and reinforcement. I did not need to keep recovering physically to retain her love and affection. She did not want me to hide the parts of me that did not work. Her love was unconditional.

Finally, she pushed me to use my accommodations. She told me to quit trying to act non-disabled. I needed to hop on my scooter and use my assistive devices so I could more fully experience life. And that I did.

To My Disabled Friends

What I am about to say can be summed up in a few words—life does not end with disability.

You have to get back out there. You need to find a community of friends and family for support. You need to engage in hobbies and passions; if you do not have any, find some. Do not isolate yourself and wait for the future (or more function) to begin living again.

If you are struggling mentally, building your community should be priority #1. We are social creatures and need to be seen and heard. We do not deal well with isolation. We need to be empathized with and loved. You don’t need a romantic partner to accomplish this. You can find community through your hobbies or reconnecting with friends and family. Regardless of the means, focus on this goal.

By building my support network, finding new interests, and having novel experiences, I am as happy as I have ever been. I have a strong romantic relationship, am a cat dad, love reading and writing, found a job I enjoy, and am quite literally exploring the world—I just returned from a cruise.

I do not have a desire to return to my old life. I love my current life, the people I have met, and the experiences I have had. Having dealt with such strenuous circumstances, I am stronger (mentally haha), smarter, and more grounded than I would have been. I feel that I can accomplish anything after having dealt with the challenges of being disabled.

Remember, we are a powerful group of people with stories to tell. We need to get out, tell those stories, make change, and influence others. I am trying to do just that.

Will you join me in this endeavor?

—KH