Disease, Compassion and the will to live.
Posted: Thu Aug 09, 2018 11:21 pm
This is a bit of a personal post. I am always a little paranoid about revealing anyone's true identity on the internet, so parts of the post are intentionally vague.
My best friend's daughter was born with half a heart full of holes on the wrong side of her chest. She was not expected to survive after she was born. She did, going several major heart surgeries by the age of 5. She also has a rare medical condition, so rare I am hesitant about revealing it because it could be a clue to her identity. The prognosis for much of her life has been, 'well, we see what science comes up with...'
She is in her twenties now, and her body is slowly falling apart. She was a nursing student, but she had to drop out of nursing school because of the physical requirements. She is barely hanging on trying become a physical therapist, but again her body is slowly losing function.
What is her life like? This summer she made the decision she had to get a feeding tube, because she throws up so much she was losing weight. Think about being in your twenties, knowing you are going to have a port on the side of your body for the rest of your life. The surgery for the tube is normally not a big deal, but because of her other syndromes her body kept rejecting the tube. She had the same surgery FIVE TIMES before the tube finally worked. In the process of having 5 surgeries she became addicted to dilaudid. When she went through withdrawals she had convulsions and had to be readmitted to the hospital.
She looks at her future: her body disintegrating, her dreams of having a normal life, falling in love, having a career, are slipping away. And increasingly she talks of suicide, of wanting to die, of feeling that life is not worth the struggle.
She is not at the point where she wants to end her life today, but the possibility that 'today' will exist, say, in the next months or years, is a very real possibility. It is not as if this is just a psychologically painful. Her joints, even her ribs dislocate easily. She is increasingly in pain, and even in the best scenarios, will probably be skating next to opiate addiction.
And after years of watching the slow disintegration of hopes and dreams, I understand how she feels. There is a road map of her life, and there is only so much she can do to change her path. And for some reason, admitting to myself that I understand that she wants to die is an incredibly hard thing to do. It means letting go of all of the hopes and dreams I have for a little girl I have seen struggle with life since she was 5 minutes old. It is a brutal moment in your life when your hope can no longer serve to deny her suffering. And all this has been going on her whole life, it is only in the past few days that I have let myself really feel what that means. I'm not sure of there is anything for anyone to say, but I needed to get down my thoughts somewhere. Thanks for listening.
My best friend's daughter was born with half a heart full of holes on the wrong side of her chest. She was not expected to survive after she was born. She did, going several major heart surgeries by the age of 5. She also has a rare medical condition, so rare I am hesitant about revealing it because it could be a clue to her identity. The prognosis for much of her life has been, 'well, we see what science comes up with...'
She is in her twenties now, and her body is slowly falling apart. She was a nursing student, but she had to drop out of nursing school because of the physical requirements. She is barely hanging on trying become a physical therapist, but again her body is slowly losing function.
What is her life like? This summer she made the decision she had to get a feeding tube, because she throws up so much she was losing weight. Think about being in your twenties, knowing you are going to have a port on the side of your body for the rest of your life. The surgery for the tube is normally not a big deal, but because of her other syndromes her body kept rejecting the tube. She had the same surgery FIVE TIMES before the tube finally worked. In the process of having 5 surgeries she became addicted to dilaudid. When she went through withdrawals she had convulsions and had to be readmitted to the hospital.
She looks at her future: her body disintegrating, her dreams of having a normal life, falling in love, having a career, are slipping away. And increasingly she talks of suicide, of wanting to die, of feeling that life is not worth the struggle.
She is not at the point where she wants to end her life today, but the possibility that 'today' will exist, say, in the next months or years, is a very real possibility. It is not as if this is just a psychologically painful. Her joints, even her ribs dislocate easily. She is increasingly in pain, and even in the best scenarios, will probably be skating next to opiate addiction.
And after years of watching the slow disintegration of hopes and dreams, I understand how she feels. There is a road map of her life, and there is only so much she can do to change her path. And for some reason, admitting to myself that I understand that she wants to die is an incredibly hard thing to do. It means letting go of all of the hopes and dreams I have for a little girl I have seen struggle with life since she was 5 minutes old. It is a brutal moment in your life when your hope can no longer serve to deny her suffering. And all this has been going on her whole life, it is only in the past few days that I have let myself really feel what that means. I'm not sure of there is anything for anyone to say, but I needed to get down my thoughts somewhere. Thanks for listening.