The Will to Live...or die.
While answering one of Oprah's Facebook questions, I ran into a sister of a boy who had duchenne and she told me her brother died at 17 & at home because he was always in so much pain that nothing matter but death.
I had wondered how could there be so many boys out there with Duchenne musuclar dystrophy who suffer greatly that they think the only cure there is to the pain is death. Yet, there are so many young boys and men who just fight to exist, much less the pain or no pain at all.
What gives these boys/men the will to live? Are they in pain and is just hiding it? Do they really have a hope for a cure in their life time they just don't want to miss that opportunity? (I know I would!) or are they still just enjoying life so much that nothing seems to matter?
What really gives a boy the will to die? How much pain are they really in the whole time that no one and nothing matters but "death" to cure the pain? Did they loose hope?
Right now, becasue we are in the hospital, Tim just got a trach and living off of a ventilator. He is complaining of alot of pain in his right chest. We, of course, believe it is just muscular. Culture showed nothing and hopefully so will the xray. All we can do is give hime something for pain, including morphin and the hot/cold cream. But I have wondered how much is Timothy really in pain before the Trach? I mean, this boy is a fighter and has NO desire to die. He is in all his medical decisions and even chose to have cpr knowing the rist of chest compressions can break his ribs and maybe even punchier his lungs. But he seems not to care, he does not want to die. However, I don't want him to live like a vegetable either.
What gives the Tim the will to live-despite the pain? does my son have that much hope for his life that nothing matters? Is he really experiencing other pain that he hides from me?
How about your son who many have DMD? Would you want to know how much pain he is. Of course, you want to help him, right?! But why would he hide it from you if he is in pain and says nothing? Or does he? How do you treat him for the pain other than medication? Or has your son reached that point of pain? Would you talk to him about it?
DMD has been known to take lives before they reach their 20's...and many has lived beyond it. I am going to ask the young men (who are now in their 40's with DMD) and ask them about their pain level and how they live with it. See what thier level is like to want to live?
I hope to have more and better answers for you soon about this as I am more curious as I hear more about it. I am also hoping this can be an answers to help our boys who live with chronic pain...and those who don't.
Does your son have the will to live? If so...why? I know there are many good answers out there that hopefully can be very helpful to many more boys with DMD.
To many questions to answer but maybe answers that can give us hope!