Experiential Approach
Another approach that we are going to look at is the experiential approach. This is how the individuals that are affected by the disease feel about their illness and how they deal with it. This includes how they perceive themselves with this condition and how they make sense of it. Because my brother was so young when he had these procedures he does not have any specific memories about those experiences. Which is one of the only benefits of this disease that the effected people have no memory of the traumatic events that they had to endure to have the condition corrected. In Jacob's case he also doesn't remember the procedures that he had when he was a baby but he does have a deep seeded
dislike of hospitals. So even though he doesn't have a specific memory of his operations he has an anxiety associated with being in hospitals. The good thing about this condition is that he doesn't have any medications that he has to take regularly and the only time he is reminded about his condition by others is when he has his annual check up in Ann
Arbor. But there is always a reminder in the middle of his chest, the large scar where they had to break his rib cage open every time he went back to get his three operations to correct his condition. When he was a young child I always remember him looking down feeling his scar, seeming like he was trying to figure out what it was and why no one else had one. Then as he got older he did not like it to show, making sure it was covered up almost like he thought that it didn't make him normal. At that point he was a normally
functioning child but felt that he wasn't because of the scar on his chest. Showing that even though the only physical ailments he has is that is skin/lips turn purple when he gets cold. That is because he only does still have half a heart so blood pumps slower than in a typical person, this is also why his O2 stats are below the normal threshold. Aside from that he is comfortable with his scar now and thinks it is a cool story, or he can have fun with it a make a new story up how he got the scar. Below is a video of Baylee's story which will give you an idea of what going through these procedures is like but I will warn you some of it may be tough to watch for some viewers.
dislike of hospitals. So even though he doesn't have a specific memory of his operations he has an anxiety associated with being in hospitals. The good thing about this condition is that he doesn't have any medications that he has to take regularly and the only time he is reminded about his condition by others is when he has his annual check up in Ann
Arbor. But there is always a reminder in the middle of his chest, the large scar where they had to break his rib cage open every time he went back to get his three operations to correct his condition. When he was a young child I always remember him looking down feeling his scar, seeming like he was trying to figure out what it was and why no one else had one. Then as he got older he did not like it to show, making sure it was covered up almost like he thought that it didn't make him normal. At that point he was a normally
functioning child but felt that he wasn't because of the scar on his chest. Showing that even though the only physical ailments he has is that is skin/lips turn purple when he gets cold. That is because he only does still have half a heart so blood pumps slower than in a typical person, this is also why his O2 stats are below the normal threshold. Aside from that he is comfortable with his scar now and thinks it is a cool story, or he can have fun with it a make a new story up how he got the scar. Below is a video of Baylee's story which will give you an idea of what going through these procedures is like but I will warn you some of it may be tough to watch for some viewers.
L
Bibliography
"Baylee's Story- hypoplastic left heart syndrome" http://www.youtube.com/watch?v=goDJTpBn-3A accessed August 15, 2013
"Baylee's Story- hypoplastic left heart syndrome" http://www.youtube.com/watch?v=goDJTpBn-3A accessed August 15, 2013