HLHS

                                                         The Reality of My Life

   

When someone first meets me they would never believe that I live with a very serious heart condition. My bright eyes, loving smile, and positive outlook of my life hides a very serious and painful condition. I am living with half a heart. I have Hypoplastic Left Heart Syndrome (HLHS). I have had 5 open heart surgeries; having these surgeries left me with cirrhosis of the liver, hypertension, and scoliosis along with other mild issues.  

Every morning I wake up at 6:50am; usually I haven’t slept well due to my back tensing up in the middle of the night. The first thing I do is go to the kitchen and drink a cold cup of water right away to wake myself up. I then splash cold water on my face to wake up the rest of my body. Most of the time it is very challenging for me to pull myself out of bed. Why? Because I only have half a heart. My body craves more rest than the average person. Sometimes when I wake up I feel as if I am pulling 50 pound weights on each leg, just to stand up. When this feeling is occurring I also feel physically weak, nauseous, dizzy, and tend to forget very basic morning procedures. These are the days that I worry about not being able to make it to work or even find the strength to feed my cat, all because my heart is craving more rest. Some people tell me to sleep more or go to bed earlier. I would really love to, but I have to work long hours to support myself and I am also in school, so I need time to do homework.  

What I do for a living is already not easy for the “normal” healthy fit person. I work with very beautiful unique children, and I love them all so very much. My job is the best thing that has ever happened to me, but sometimes I feel like I am failing the children. I am not as strong or have the most energy out of all the teachers, and I am often in physical pain throughout the day. I frequently sit down at work and move at a slower pace. I also tend to miss a lot of work due to doctor's appointments, surgeries, and when I catch the common cold it can put me in the hospital. Every time I call out I feel that I am just letting everyone down, and I used to think that maybe I should let someone else who is healthier take my position.

Every time I meet a new person they are always shocked to learn about my condition. I always get comments like….

~“Wow you have had heart surgery! But you are too young”

~“You don’t look sick”

~“Medical marijuana can cure you” (no actually it will make it worse)

~“If you just allow Jesus Christ into your life and truly believe in him, give your life over to him, he will bless you child. All of your pain will go away” (thanks, but that’s not how reality works)

~“I think you are lying. No one can live with half a heart”

~“Oh it can’t be THAT bad, you get to sit out in P.E. class” (this was a former school mate)

~“You can’t have kids? (long pause) Not to sounds like a dick, but I don’t want to go on another date with you knowing this” (yup, this was a recent 1st date I went on with someone. The 1st date and he said this…. Just to let you know I wasn’t even planning on a second date with him and was deeply happy that he was the one to cut it off)

Comments like these are hurtful. I don’t listen to them, nor do I really care about what others think of me. However they can and will hurt someone else. Someone who is young and impressionable.

Growing up, and even to this day, I have had authority figures undermine my illness, tell me to my face that I am faking everything, and that I see myself as a “princess” or that I refuse to try my best. They would say things like….

~“Move your MRI to a Saturday please, we need you here and you look fine” (former boss)

~“What are you talking about you need time off for a surgery? Look how thin and healthy you are!” (former co worker)

~“You decided to leave. You insisted that you had to have your surgery during the summer, and you were the one to leave” (this was another former boss, who knew exactly why I was having surgery and it was not my idea to have surgery. I tried to have surgery during the summer so it would not affect the school year)

~“You are just acting like you are sick so you will get out of the mile run, and other activities” (this was a middle school P.E. teacher who told me this. Luckily a former teacher who just had heart surgery was nearby and heard what was going on)

These are just a few things that have been said while I was either in school or working for them. Without these people I would never know how to stand up for myself, and fight for what is right. So I want to thank them for teaching me how to be assertive.

All of this sounds very bleak and depressing. Although I will never be “cured” or ever have the same amount of energy as my peers, I do want you to know that I am very happy with who I am, and what I live with. I see the world differently than others do. I am able to enjoy my time and use it wisely. Finding empathy for others comes so naturally, because I know and understand struggle. When a relationship falls apart I know I have the strength to get up and try again, because nothing is as painful or scary than open heart surgery.

Remember that everyone is different, and just because someone looks happy and healthy it does not always mean that is their true reality. Anyone who puts others down because of their differences is a waste of your time. Think twice before you speak, you never know what words can be harmful.