Loa’s Blog

April 30, 2019

Small LEGOs, Big Perceptions

For those whose lives have changed in ways that leave them with less independence, it does not mean that they cease to be productive members of society.

Ever since my spinal cord injury, I have felt a bit like a useless hunk of meat. Of course, it did not help that, when I told my little sister I was helping my mom in the kitchen, she replied, "No, you are not, you are just sitting there." Before you judge her too harshly, she has Down Syndrome and perceives the world in very black-and-white terms. And, to be fair, she only voiced what I was feeling inside.

As much as my friends and family have tried to reassure me that I am useful, I always convinced myself that they were just trying to be nice. It was not until I received insight from my little nephews that I actually started to believe that there may be some truth to my having value.

Recently, my nephews, Wickliffe and Nicholas, asked me to help them put together “small LEGOs.” Nicholas said to me, “We know you love building LEGOs with us, so that is why we asked you to come help us.” As ridiculous as it may seem to others, that simple invitation made me feel like I have managed to find a way to not just observe their lives, but truly engage with them. However, I think that most of the credit goes to my nephews who have found games and activities that we can do together.

A few weeks earlier, Wickliffe had told his mom that he was not going to play small LEGOs with his children because “you find someone in a wheelchair who loves you to help you play LEGOs.” That one brought tears to my eyes, because it shows that in his mind it is completely normal to have someone with my limitations in his life and that it is important to find ways to interact with them in a way that they are able.

Not only am I participating in their activities, but my presence in their lives is clearly impacting how they see the world and shaping them into more compassionate people. And if that is not useful, I do not know what is.  Children are our future. If we can mold children into more compassionate and inclusive adults, then we are helping to create a better future for all.

Before my injury, I had intended to go to medical school because I wanted to make a positive impact on the world. My nephews have shown me that I may be doing just that in a way that I never expected. It seems that my contributions to Ventec may be another way that has allowed me to impact the world.

In addition to becoming an active part of my nephews’ lives, it appears I have changed the way they perceive life. One day, my nephew Wickliffe and his cousin Arabella, who had recently lost her grandmother to cancer, got into a fight over what happens to people when they get into a car accident. While Arabella insisted that you die, Wickliffe was adamant that you end up in a wheelchair and on a ventilator. Naturally, each child was drawing from their personal experience. The take home message for me, however, was that having me in his life has changed Wickliffe’s perspective for the better. He demonstrates compassion to the kids at school who are different and struggling.

For those whose lives have changed in ways that leave them with less independence, it does not mean that they cease to be productive members of society. It simply means that they may need to be more creative in how they contribute to the lives of those around them. I had simply perceived my current state as a selfish choice to live life at the expense of others, rather than something others might see as inspiring. It took my nephews embracing me as a valued part of their lives for me to understand that my choice to live an active and engaged life on a ventilator may have greater impact than I realized

Since reality is what it is, I now tell people with a smile and twinkle in my eye, that instead of helping them, I am just going to sit there and look pretty.

 

 

 

The views expressed by Loa are not necessarily the view of the Ventec Life Systems, its members or the clinical board. These blog posts are the personal experiences of Loa. The blog posts are not intended to provide clinical advice or training related to VOCSN. Always consult a physician or trained clinician prior to using VOCSN. Please refer to the VOCSN Clinical and Technical Manual for detailed instructions, including indications and contraindications for use. VOCSN is available by prescription only.