Disease, Compassion and the will to live.

[_MeDotOrg]

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.

[_Ceeboo]

So sorry, MeDot.
I don't know what else to say...........

[_Maksutov]

Very sorry, Me.

[_schreech]

Heart breaking. Im sorry to hear about this, it doesn't seem fair.

[_Some Schmo]

Wow. That was a sobering post.

Hate to hear you're all going through that.

What I will say is that I've long been of the opinion that one of the most loving things we can do for the terminally ill is to accept and let go when they tell us they no longer have the endurance to go on. I've often thought we reserve more compassion for our pets in that situation. I don't think you should feel any guilt for wanting this person's suffering to end, even if that feels impossible right now, or you're just having trouble letting her go.

Be well, MeDotOrg.

[_Gunnar]

Wow! It breaks my heart to hear stories like that. It is hard to blame someone for not wanting to live having to go through such pain and suffering. My Down Syndrome daughter was also born with a defective heart and had to have corrective heart surgery at 6 months old. But what she has had to go through since then pales into insignificance compared to what your friend's daughter has had to experience!

[_MeDotOrg]

I thank you all for your replies. Just writing this was cathartic for me. In writing it down and thinking about it, it gives me ideas of what things I'm going to have to do in the future. Death is the best adviser, it is said. And that shouldn't be morbid, but it should be compassionate and clear-headed.

Again, thank you all for responding.

[_Jersey Girl]

I only wish I knew how to pull that weight off you.

I read every single post that you make. You are eloquent, well informed, instructive, reflective, and you always make me think. I hope you will continue to use your gift to benefit your soul as you did here. Whether we see it or not.

I'm so sorry, MeDot. Be kind to yourself.

[_canpakes]

I only wish I knew how to pull that weight off you.

I read every single post that you make. You are eloquent, well informed, instructive, reflective, and you always make me think. I hope you will continue to use your gift to benefit your soul as you did here. Whether we see it or not.

I'm so sorry, MeDot. Be kind to yourself.

I am not eloquent enough to do better than what Jersey Girl has written here.

Life is so beautiful, yet so easy for so many of us to take for granted. I wish and hope for your friend the strength to be able to enjoy as much as possible during this time.

[_Doctor CamNC4Me]

Thanks for sharing, MDO. It's tough being a bit vulnerable on this board, but you opening up a bit isn't just catharsis; it's helping us process these questions, too. I honestly wouldn't know what to say to a daughter of mine if she were to express those sentiments, especially if she's had the kind of life you described.

I was up at our Veterans Affairs a couple of days ago, and listened quietly to vets share their struggles with big questions. When I go to these group sessions I just like to be there to lend support, and I'm usually loathe to offer an opinion while they're processing. After a particularly open confession by a vet mired in a myriad of personal struggles I was asked to give my two cents. Basically I echoed Some Shmo's position.

I really feel we as a society have made death and passing such a fearful and terrifying thing we really do ourselves and those who suffer an injustice. I get that suicide is a permanent solution to a temporary problem, but what if the problem isn't temporary? What if the suffering becomes cruelty because we can't offer love and compassion if someone wants to pass? When does our own fear of loss deals a loved one an unfair burden to persist because we want them around?

I don't have the answer, but for some reason I think we should afford those that want to pass a safe, loving, and compassionate transition from this life if that's their desire.

There are no easy or good options. Everyone will pass. Do we have the right to choose our time, and if so, do we have the right to do it with dignity? I'd like that option on the table, but even typing it out makes me uneasy.

Good luck as you grapple with both your feelings, annd most importantly, hers.

- Doc