My Story About Surviving a Hospital Stay
By Sunjay Smith

 

I am a Native American boy who is 17 years old. I have lived in many places, but now live in Oklahoma. My life has been a long journey. I became disabled when I was six. I was hit by a car and suffered such a severe brain stem injury that my family was told I had a less than one percent chance for survival. They were told to pull the plug because the doctors said I would not survive. Fortunately, my family did not listen to the doctors. I am now the only person in the world to survive my level of injury. Currently, I am paralyzed from the mouth down, but I communicate by having people read my lips. I can also eat and move a little bit. With a lot of practice, I can now play with my Xbox 360. This article is about what I have learned about being in the hospital, what I wish doctors understood, and about how I transitioned back to the community.

 

After being hit by the car, I was in a coma for a long time. When I woke up out, I didn’t know where I was and I freaked out because I couldn’t move. But luckily, there were some familiar faces like my mom and my dad and my brother. Unfortunately, because I couldn’t move the doctors didn’t believe I was awake, so they kept poking me and hurting me, but my mom knew I was awake and fought with the doctors to give me the right treatments. Finally, I was able to move a little bit and the doctors could finally see that I was awake. Then, the doctors told my mother I could never live without a respirator. She did her own research and took me off the respirator herself. It was good she did that or else my life expectancy would have been much shorter. The doctors also said that I would be a “vegetable” (I would be in a permanent coma) but now I am in high school and on the honor roll. They said I could never again eat or drink, but I eat more than anyone else in my family now!  There were so many times the doctors gave me the wrong drugs or did the wrong surgeries but mom never trusted the doctors. She did her own research and fought with them until they did the right procedures. Because of her, I am alive today and living a good life.

 

As my story shows, if my family had listened to the doctors I would not be alive today. A lot of times, we hear about how patients have the “right to die.”  We assume that doctors are always correct when they say someone cannot survive. But sometimes they make their decisions based on financial reasons. Also, medical science is not an exact science. When you’re in the hospital and going through surgeries and treatments, don’t let the doctors treat you without someone else helping you to make decisions. As an example, when I was in one hospital, the boy in my room was being given physical therapy. It hurt his leg a lot and he would cry. But the therapist just told him to stop whining. As it turned out, his leg was broken and the doctors hadn’t figured this out. So it is important parents force doctors to take you seriously and listen to what you have to say. I wish my doctors would not have assumed that because I could not talk, that I should not be consulted about my health care decisions. I think doctors should be less arrogant and not assume that they are always right. In my case, I had so many doctors that they did not actually spend that much time with me. But my mom and other family members were at my side almost 24 hours a day for several months. When my mom tried to tell the doctors I was not longer in a coma, they might have considered that her opinion came from monitoring me so closely (which they did not do) rather than dismiss her claims as wishful thinking. I think doctors should have more of a partnership with families and realize that they may see something or notice things that a busy medical staff might miss.

 

Talk with your family about making sure the doctors don’t just communicate with your parents but also with you. That way, doctors are more likely to treat you as a person. My mom almost took me out of a hospital because the doctors would do things without telling me, asking me or letting me know what was going on. They didn’t like having to talk to me, but when my mother forced them to they became much more respectful.

 

I was very relieved to finally leave the hospital. The transition was often difficult because medical staff still continued to make inappropriate medical decisions for me, which made it difficult to get the correct services. They often did not seem to take my life potential seriously. I have also had struggles getting services in public schools. In the past, some public school teachers and administrators have not wanted the challenge of providing me a proper education and sometimes did not follow legal mandates to provide me the education I deserve. My family has continued to fight for me. I do my part by studying very hard in school and getting good grades in order to challenge stereotypes that cause people to assume that because I cannot talk, I therefore cannot learn.  I hope that my example will cause them to treat other children with disabilities with more respect. Fortunately, the teachers at my current school are very supportive, and I am busy getting ready to apply for college next year.

 

 

Sunjay Smith is a junior in high school in Oklahoma. He likes to play video games, watch opera, and most importantly, he really likes to eat.

 

Sunjay Smith can be reached at [email protected]

 

 

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