When Eyes Speak Volumes
- Cristine
- Jul 27
- 3 min read
When carrying conversations with others, the dominant Western culture emphasizes the use of eye contact as a means to convey respect and acknowledgement of the opposite party. Too little eye contact can make a person feel devalued or disregarded. Too much of it can give the other person the heebie-jeebies. But, an appropriate level has the potential to strengthen the bond between two individuals.
But, what if your eyes were the only method of communication accessible to you? When, slowly but surely, you begin to lose control of the muscles that enabled you to signal, speak and write, how does one ensure their thoughts are being "heard", understood?
During my three years working in a neuro ICU, I have come across many patients who have had to experience challenges when it came to expressing themselves; aphasia after suffering a major stroke, bulbar palsy in a GBS patient, locked-in syndrome post severe neurological insult ... To be the person within that uncooperative body, I couldn't imagine. Yet, despite all those years in this department, the first time I took care of a patient with the "Bucket Challenge" disease was during these last few weeks.
Steve was a special patient to have in a palliative care home mostly due to the particularities associated with the type of care he required. Although many of his necessary treatments were routine in a critical care setting, seeing them being used in a home rather than a hospital felt odd. Steve was on a BiPap for most hours of his days, was being fed through a PEG at specific hours, and used an Eyegaze communication device 24/7. If you haven't figured out what ailment Steve had, it is ALS (Amyotrophic Lateral Sclerosis). The same condition that Stephen Hawkins and Eric Dane had.
My very first encounter with Steve dates back to late June. My coworker required assistance to change and reposition him. What is a routine in any care facility became an experience that was memorable and comical (in a refreshing way!). As my coworkers and I set ourselves up to complete the task at hand, Steve is "typing" away on his tablet. A few seconds later, a song begins to play. "You're setting the mood?" we ask him. He replies "yes" by looking upwards. As we turn Steve to his side, a quick drum roll comes on and the words "Touch me" echo throughout the room. Taken by surprise, I make nothing of it and proceed to support his back. However, the next few lyrics that follow are "I wanna feel your body" and being as quirky-humored as I am, I directly ask him in a mischievous tone: "Did you pick this song on purpose?". Steve smized. And if you are curious to listen to the tune that was playing, here it is.
From that very brief moment, I knew that behind such a fragile body remained a strong and funny character. Even with the near-complete physical incapacitation ALS dawned on him, he still wanted to be present in the simple joys in life. He had visitors on the daily; friends and family with whom he carried interesting and thought provoking conversations with. He had a peculiar taste in music (Pink Pony Club being one his favorite tunes). He watched several Netflix shows (I caught him watching The Ultimatum and made fun of him, as I then admitted watching such shows was a shared guilty-pleasure of mine). He was optimist Steve.
The way Steve carried himself led to self-reflection in those that came across his path. It is indeed human nature to compare and contrast what we would do in a body such as his. While the vast majority did admit to simply wanting to pursue death after such loss of autonomy (I included), to have the will to keeping living is earth-shatteringly admirable. It is hard for me to put into words the kind of man Steve was. Although I had never heard his voice, his patient eyes spoke a thousand inspiring life lessons.
Thank you Steve, for in such a short time frame, you shed light on what it really means to "live".
I hope you find that pink pony club in that tropical afterlife you sought.
May you R.I.P.
07/26/2025
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