Simalarites and inspiration

[lilyjohn]

I watch the drama being played out in Florida where people are deciding if a young woman should be left to starve and end her life. It is such a human tragedy who really knows what the right answer is? Like everyone else I have my opinion. I can only say that when I see that smile and watch as she responds to people I can hardly believe that she is brain dead. Watching what is happening there brings memories of two very similar situations in my life. Things that have happened to 2 people that I know and love.

I was not in contact with Johnny in 1990 when his brother had a massive heart attack. I did hear about his family from time to time so I knew about it not long after it happened. He was actually dead for 6 minutes when the parametics brought him back to life. That started a situation that lasts to this day. One that is both heart breaking and inspiring.

He spent 3 years in the hospital once even being placed in a mental ward because of the brain damage he suffered. His family faught for him and eventually he went home. Over the years he has had many set backs encluding a stroke that left him bed ridden and unable to do the least thing for himself. Would he want to live like that? Would anyone? Still dispite so many things that could have taken his life he is still alive. Alive because his family especially his daughter have never given up on him.

It is very hard for her to care for him and remember the man he was every day. Still she does not give up. She fights for his rights and for his life, many times agains overwhelming odds. In the last few years he has regained some of his mental capacity. He will never be the man he was but he is a delight to everyone who knows him. He radiates love.

The other situation touched me even more profoundly. I believe in my heart that is what eventually brought me to where I am now. Despite all of the pain and loss I have had I would not have missed the time with Johnny or the chance to be the person I have become.

A young man very close to my family went to work one day. A few hours later there was an accident. A very serious accident that no one actually witnessed. He was working on an off shore platform. The only thing we ever knew for sure was that the top of a C0 2 bottle came off somehow and hit him in the head with 2200lbs of pressure.

All reason and logic says that he should have died that day but he didn't. He survived until he was found, then until a parametic was brought from another rig. He survived the wait for a special helicopter to fly him in to the hospital. Later that day he survived a surgery that took a large portion of his damaged brain. He was in a coma and that first night people who loved him took turns talking to him. His dangerously low blood pressure rose when anyone would talk to him.

He remained in the coma for two weeks. Everyday I would go to see him for the few minutes allowed. I started to notice that when someone talked to him both his blood pressure and heart rate would react. That made me determined that he would survive and to believe that he heard us and knew when we were there.

A few days later he was transfered to the hospital in New Orleans. The first night he asperated and that led to meningitis. We were told that he would probably not live for 48 hours. Despite a temperature that went from very high to dangerously low he contined to live. He was alergic to nearly every medication that was given to him. Still he survived only to get a bacteria that should have killed him. His wife did not want to see him go through any more but when a surgery was suggested and his parents wanted him to have that chance she agreed. She was there for him everyday.

He was in surgery for 7 hours. His brain was washed to remove the bacteria and more dead blood cells. His wife was told that every cell in his brain was bruised because of the pressure of the impact.

For two years he lived with one threat after another trying to take his life. He was awake but he could not move one finger. The only thing he could move was his head and his eyes. He could not comunicate with us in any way. We were told that he had little brain activity and didn't understand anything.

I refused to believe that he didn't know us. Twice sometimes three times a week I made that 150 mile round trip to see him. Ofen on my only day off or after having worked that day. I would take his hand and talk to him. I would tell him everything about our families and what was going on in our lives. If we had gone fishing I shared that with him. He was a great fisherman. I also told him about my hibiscus and how they were doing. We had often exchanged plants and he loved to grow them.

For a long time he never showed any kind of response but I never gave up. Then sometimes I talked to him and would tell him that I knew that he was still there in some way,that I knew that he could hear and understand me. He would sob and the tears would flow. He would cry so loud and my heart would break but those tears made me believe that I was right. That he was in that body somewhere and was so glad to know that someone realized that. No one will ever convence me that he didn't know. That there was not a part of his brain that understood.

He lived for two years in that condition. Yes it was very hard on his family and all of us who loved him. During that two years he touched hundreds if not thousands of lives. There were doctors and nurses and therapists along with aides and church members. The family and people he worked with as well as people that we knew who were aware of his condition. His name was on a prayer list on the internet and went around the world. Many people who had forgotten how to pray were turned back to God.

He was given every oportunity to live and he did. Why? Because he had a purpose. He had many lives to touch. When he died it was because he developed pheumonia not because he was denied food or medication or anything else that his body needed to survive. When his purpose was finished God allowed him to go home.

Of all the lives he touched I doubt that anyone was touched as profoundly as I was. I will always believe that because of the way I stood by him and never gave up on him is the reason that God found a way to give me and Johnny another chance. He knew that Johnny would need someone who loved him and would not give up on him no matter what. I was given the oportunity to be that person. I will always be grateful. I also believe that God knew how Johnny would die and that I would still stand by him even in death to see that he gets the justice he deserves. So if times I seem a little too forceful with my opinions and determination to protect people from what happened to Johnny I hope people will understand when I say that I believe that is my purpose in life.

I hope the story of these two wonderful men who by the way were very devout Christains will inspire those of you who read it.

[karen335]

I think it is wrong what they are doing. She is breathing on

her own, not a respirator. She WILL be literally starved to death.

Her husband should divorce her, take the millions that he has been

offered and let her parents assume responsibility to take

care of her. Only God should be the one who determines when

a life should end in a situation like this. I don't know the whole

story, but it is sad to see this happen.

I pray that if it is God's will, she will be able to speak in the next

few days or weeks. This is my opinion. I pray that she knows God...

[Snowflake]

There are three sides to every story, his side, her side and the truth. Her parents and her husband are fighting over if she "lives" or is allowed to die. I think, same situation, my husband and parents may be fighting, too. I would hope that my husband would not back down, divorce me, take millions of dollars to let someone else decide my fate, etc. My husband knows my wishes. I would expect a reasonable time for some miracle to occur, but there is no way in hell I would want to "live" fourteen years like this poor woman has.

I'm sorry, Karen and Lillian, but I disagree with you both. Being kept alive by a feeding tube is not allowing God's will be to done, it's playing God - keeping the body "alive" but not knowing what is up with the soul (and it really appears that it is not caring where the soul is, LOOK at how long we can keep a body alive). If one believes in an afterlife of any kind, one could visualize a loved one's soul looking over their shoulder at any time of day, during any special moment...yet someone tied to a shell of a body has their soul tethered. I believe her soul is already in that area of afterlife, just not 100% as she is still tied to the earth being neither a part of here nor a part of there.

Sad, really sad. Saddest part being that she should be allowed to die, but she shouldn't have to be starved to death to do it.

[Ann]

Becky, I'm right in there with you on this one. I would hope that I would have someone fight so hard to respect my wishes, as Michael is doing for Terri. I believe Terri's parents are two of the most selfish human beings I have ever heard of in my entire life!!! No one in their right mind would want to live like Terri is living. She was once so beautiful. Can you imagine the humililiation she would feel if she knew the entire world was seeing her in this state. She is NOT alive!!!! She is breathing on her own and that is all!!! Living here in Florida, this is a really hot topic. I can tell you that most people here (approximately 83%) agree with her husband!

[lilyjohn]

Ann and Becky I am afraid that this is one time I have to disagree with you tho I can certainly understand your opinions. As I said having something so similar happen to two people I love and watching their families struggle over this same issue I can see both sides.

I absolutely agree that no one would want to live like that. Neither would anyone chose to live in a wheel chair all of their lives or to have to face all of the physical and emotional aspects of cancer. I can't argue with that. The thing is where do you draw the line? Most important how does anyone really know this woman's wishes. She did not put them in writing.

I would be much more inclined to believe that her husband is looking out for her interest and her wishes if he hadn't waited ten years and until he got a large sum of money to make this decision.

As for her parents don't be too harsh on them. They lost their daughter once and now they are facing loosing her again. It is easy to speculate and judge when it is not you in the same position. Until it happens to someone you love no matter how certain you are before that certaintly can change when faced with reality.

My main concern here is starving her to death. No matter what they say about it not making her suffer who knows that for sure? How many of her doctors or the others envolved have been starved to death and are able to say that because of first hand experience? Starvation is not humane. It is cold and calous. If they want to kill her why don't they just come out and say "we are going to kill her"? Why don't they just give her a big dose of morphine or the drug they use on to kill those who have been condemned to die? After all it is not as if THAT never happens

They just don't want to be seen as killers. Well as long as that woman is breathing on her own and uses no other form of life support other than nutrition and hydration she is NOT in a vegitative state. She smiles and responds with her eyes. A turly brain dead person whould not be able to do that. I know because I saw my brother like that!

[Laura Ann]

How can anyone say how anyone other than themself would want to live? You may think that Christopher Reeve's life was not worth living, but he must have thought it was. What about the woman who's face and hands were burnt completley off from a terrible car accident. She said she is happy to be alive. The only person who says that Terri does not want to live is her husband , who by the way already has a relationship with another women whom he has fathered two children with. In addition, there is in question how Terri's present state came about. Some speculate that her "husband" was abusive and he did this to her. It does seem odd that he wants her body cremated immediatly upon her death and will not allow any autopsy or any post-mortem testing. The bottom line is that there is nothing in writing that states Terri would not want to be deprived of nourishment. The last time I checked it is punishable by law to deprive an ANIMAL of food and water. Pease don't start talking about God's will, a new born baby would die when brought home if not for human intervention in providing nourishment.

Laura

[Snowflake]

Hallelujah, I have seen the light! Oh, if I am struck by that beer truck and can still breathe with my repitilian brain stem, PLEASE plug me in! Feed me through a tube, have someone change my diapers and leave me laying in a bed to experience my loved ones through a few token visits where I don't even know they are there. I'll stare at the walls and respond exactly the same as I do when there is someone in the room...smiling off and on, opening and closing my eyes.... Make sure that person changing my diaper is my child, so I can die a little inside with every visit.

Hold on to my body so my soul cannot pass. Keep me here for selfishness, so that you can visit me in a warm hospital and not a cold cemetery. Goodness knows, if my death isn't convenient for you, you can postpone for years!

And really, if my husband and parents are on opposing ends of if I should stay in that bed, PLEASE involve the whole freakin' world in my personal business - let 'em all weigh in on how horrible my husband is for not being a martyr for decades and how wonderful my parents are for spending so much time at my bedside....or how wonderful my husband is for wanting me to be allowed to die while my parents are totally selfish. See, it really matters what the whole world thinks - they should be judging those who love me the most and may disagree. For crying out loud, if my family can't decide what I would want and what is best for me, let's pull in a Congress that can't pass a freakin' bill to push funding for lung cancer RESEARCH instead of smoking cessation pushes for every dollar donated toward lung cancer. Yeah, call an emergency session for me, I won't even be aware of it...

Really, there ought to be a law. My husband and the rest of my family should not be held in limbo over the Government deciding my fate -they can't even balance the budget!

...and by the way, Christopher Reeve wasn't brain dead. Christopher Reeve chose not to die and to fight with all he had and had some wonderful miracles along the way - and it was in less than fourteen years.

I do not want to live just to be convenient on holidays and have an address to send the cards. Paralyzed is one thing, brain dead is totally different.

...and be honest with yourself. God doesn't talk to you, God doesn't talk to me. God doesn't clear his decisions and God alone sits in judgment. Who are we to judge? Have any of us actually received the WHOLE story? EXACTLY what went on between husband and wife before the incident, her exact relationship with her parents....and if her husband were a heinous monster, he would have taken the money and "sold" his wife!

As for newborn babies and cruelty to animals, last I checked, newborns AREN'T brain dead, they are helpless. When animals are so ill they are not mobile or are in extreme pain, the vet "puts them out of their misery". Just ain't the same thing, is it?

[lilyjohn]

Boy I had no idea what I was getting into when I made this post. I only did it because this whole thing brings back some very painful memories. Who is right and who is wrong? No one really knows. All we can do is speculate. Personally I have been too closely envolved in situations very similar. If I had to be the one to chose I honestly don't know what I would do. I just will tell you that I don't believe in starvation for any reason and I doubt the doctors definition of brain dead. Does that mean I think this young woman has a life worth living? No I don't but again that is not my call to make.

I do know that when I was with Harry and spoke to him and he started sobbing I had no doubt that he knew what I was saying. Why else would he only do that when I said certain things? Would he have wanted to live like that? I can answer that question easily. The answer is No. Do I think his parents were selfish for wanting him to have that operation? The answer to that is no as well. Different people handle situations differently. When it is your child it has to be the most difficult thing of all.

Johnnys brother that is another story. For the first few years he didn't improve nor did he get worse. He was never considered brain dead but severely damaged. His physical condition has deteriorated but in the past 3 years his mental capacity has grown. Brain cells do regenerate sometimes.

There is one more situation that I didn't mention. In 1974 my brother was rushed to the hospital hemraging. For several minutes he was getting no oxygen to his brain. He remained in a coma. Not once did he open his eyes nor did he move. After several days they did an encyphliagram(SP). After that test they told us he was brain dead. The asked my sister in law to make the decision about removing life support. She would not make that decision on her own. She felt that my parents and us siblings, myself and 3 brothers) had as much right to make that call as she did. It was one of the hardest things I have ever done but I finally agreed to have him taken off of life support. My mom and one brother couldn't do it. Because most of us agreed he was removed from life support.

Several days passed and he continued to live. One morning I found myself alone at the hospital. Everyone else had gone home to bathe. We had been staying in the ICU waiting room 24 hours a day for nearly two weeks. That morning I looked out at the mountains and knew that I had to do something. I went to the chapel and I prayed. I asked God to give me the strength to face what lay ahead. I also asked that I would know what I should do. I stayed there for a half hour then dried my tears and headed up to see my brother. I had only been in to see him once. I had left my family in Louisiana to go to him and soon after I left they were facing a major huricain. I was too emotionally unstable to go to my brother while my family faced that threat.

I met one of my brothers and a friend on the way up to his room. She went in with me. He was so still and he didn't look like my brother but everyone said it was him. I had to believe them. I took his hand and started talking to him. I told him that I loved him but I knew that he didn't want to be like he was. I told him that as much as it hurt all of us if he wanted to go it was alright. I swear when I said those words he let out a very deep sye. I kissed him then left him there.

When I got to Mama's house she was upset. She told me that she felt that she had to go to him because he was going to wake up and ask for her. I had to tell her that he would not wake up but if she felt like she had to be there she should go. She was with him less than a minute when he died. Barely over an hour after I told him it was alright.

We were told that he was brain dead. Yet he responded when I talked to him. I will never believe that he was brain dead. Did I do the right thing? Yes I know that I did. The one question that I have had to live with is was he releaved to be let go because of his condition or because he was suffering without life support? I will never know the answer to that question. I watched my mama stand at his coffin and I watched as a part of her died. She was never the same again but lived to see two more of her sons die. Life is hard and we sometimes have hard decisions to make. People who love someone can not be thought of as mean or selfish. No one knows the torment someone else is going through.

I suggest that we pray for this whole family. There is not a one of them who doesn't need our prayers and a little understanding. I would not want to be in their shoes. I know how much those shoes can wrench your heart.

At least this situation should have made it clear how important it is to have your wishes in writing. To spell out exactly what you do and don't want. Not only that but appoint someone to carry out YOUR wishes, not their own.

By the way when another of my brothers had a massive heart attack in 1983 we made sure that he was not taken off of life support. We all knew how he felt about it. He was the one who would not agree to take my other brother off. He lived for two more years after his heart attack. During that time Mama was diagnosed with lung cancer. She had to go through radiation. I know that if he had died she would never have had the strength to do it. He died in March 1985 and Mama died of cancer and a broken heart in October that same year. Life is not fair!

[Eileen]

Sorry to add fuel to the fire---

Usually being quite the liberal, for some reason I am totally against a person being starved to death. I am trying to not judge her husband or her parents, because as Becky said, who are we to judge?

It is important to get your wishes down in writing so someone else does not decide your fate.

However, if it is ruled that the feeding tube should remain pulled, why don't they just give her an over-dose of drugs so she does not starve to death and put the family through more agnony then they have already been through? I somehow fail to see the difference? To me, holding back medical care that keeps someone alive and giving them a quicker death is the same darn thing, but less agonizing.

[Laura Ann]

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[Snowflake]

Laura Ann,

Anyone posting thoughts just to bait may want to look into their own mental stability. This is a lung cancer support board, but I have noticed that you tend to go for political posts that have nothing to do with lung cancer. Why not find a "Bleeding Hearts Political Board" to post your political opinions on? I believe the last few posts from you were this one, one on right to life/anti-abortion and others regarding end-of-life issues.

My opinion is not "THE" opinion, I have posted to support people in the minority that I may not agree with but who have every right to have their voice heard. I am not here for politics, this board is not about life being black and white, it is about the varying shades of gray. One thing I learned in debate is that it is fine to argue your point, but you should have evidence to back it up. Arguing just for the sake of arguing is a dead-end. Debates are not to change anyone's mind, they present both sides of the argument. Seems to me that you are the one stressing YOUR side being the only side.

Personally, I find your attitude to be rather hot-headed and heavy-handed. As for choosing the high road, if you have to point out that you are doing it, it doesn't convince anyone of your ethics.

[lilyjohn]

I am so very sorry that I ever opened this topic. I didn't mean for it to cause any more pain. God knows there is enough of that already. I was just being overwhelmed with some very painful memories and thought that sharing them with people I care about would help. I know now that was a mistake.

None of us have the right to judge these people nor do we have the right to judge one another. Life is not fair and decisions are hard. Biting at each other here is not going to solve this problem. It will never make it easier for us or any family member to have to face these issues. So please let's just let it go. Leave it in the hands of God and pray that these people can find some peace.

Becky I truly admire your grit and your determination to stand up for yourself. I admire everyone on this board because you all have faced the monster in one way or another and have not backed down. This is truly a painful subject and the diversity in ideas just shows how very human we all are.

Again I am sorry for having opened this can of worms. Let's give it some rest now.

[Ann]

Becky...thanks so very much for standing up for your beliefs and letting them be known. Yes, this is a lung cancer support group and maybe this topic should not have been brought up...but maybe it should. I believe that we should discuss issues that are going on, especially if they are medically related!! I would so much rather you stand up for what you believe in than to ride the fence and "be on both sides", as I have seen so many people do. I had the feeding tube pulled on my mother. She had a degenerative liver disorder and there was no hope for her to ever be any better. She was in a coma and I thank God that her doctor gave me the right to choose the way she died. I have no idea if there was any suffering but if there was I was at least able to limit the amount of suffering she endured. I can speak as an authority on this matter, having "been there and done that." Laura...I think you were very harsh in your judgement of Becky. Everyone here has a right to express there opinions. I am a moderator of this board and strongly believe that everyone of us are entitled to our opinions. You are entitled to differ with Becky's opinion but you should not be so judgemental with your words.

[Eileen]

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[mhutch1366]

This is indeed a timely topic. I for one am glad to see folks with definite opinions and feelings express themselves. Too many of us have gone missing, for lack of a better phrase, because they do not feel comfortable expressing either good or bad news or strong emotions. I feel we should all be adult and supportive enough to let what needs to be said, be said. Be proactive, not reactive, and certainly not negative.

My uncle cared for my aunt for almost 20 years after she had a bad reaction from anaesthesia from surgery. She slipped away a bit at a time over several months, not all at once, but she was then in a "persistent, vegetative state" as well. The one major difference here is that she could swallow.

So my uncle, with the help of a part time nurse's aid/helper, kept my aunt alive through sheer love and strength of will, by feeding her every blended mashed morsel or swallow of liquid in a spoon. He did this out of love and dedication, because it never occurred to him that she wasn't in there somewhere. I would go and visit him, because too many people who knew her well, my mother included, found it too upsetting to visit, and I knew he got lonely. I saw a man involved in a labor of love. I know it was tough on him. I didn't see that she suffered, I don't think she was aware of much at all, if anything. But as her husband of almost 50 years, he spent the rest of her life taking care of her as she had of their sons, with the expectation of much much less in return.

There are two sides to this story and Terri's that we can see, and another side we shall never know. That's where it becomes a personal decision, to be implemented by someone you know and love and trust enough to follow through. Unfortunately, this current and too public case is not clean cut, as she continues to breathe on her own, and needs to be fed like any of us do when we're ill and helpless. What's different here is the expected outcome.

The only lesson I can take home from this is, make sure your durable power of medical decision and living will are in order. This whole personal and private and very sad matter should never have made the newspapers and the intervention of the courts. I am glad I am not having to make this decision about my loved one today.

As to the rest of us: please let us not choose to become negative with each other. Cancer is pretty damn negative as is, without help.

Rather let us try to become more tolerant and more supportive, so those of us who have become uncomfortable expressing themselves may return. I for one miss them.

There was something from another support board that I thought pretty applicable to all these boards : Take what you need, and leave the rest.

I find it sound advice.

Prayers for all of us.

XOXOXOX

MaryAnn

[lilyjohn]

Ann and Mary Ann thank you. You pretty well sumed it up. I agree too about the ones who have gone missing. There are times when what we have to say is not popular but sometimes those things need to be said. You can't live your life in a vacuum or with you head stuck in the sand. Life is hard and there are lessons to be learned from every situation.

No matter how this turns out someone will lose. Someone will suffer emotional pain. What really upsets me is that I see someones misfortune and heartache being used as a political pon. I really believe that there is little if any decency left in politics any more.

[sharyn]

I have a very strong opinion on this subject, but I think it is an issue that is very personal in nature, therefore, I choose not to share my thoughts. What I will share is my deep and sincere prayers for the entire family that is going through this.... obviously, each one of them thinks they are doing the right thing by Terry. I don't believe her husband or parents would ever do something to purposefully hurt her. Who is right and who is wrong? Who are we to sit in judgement? I know I have learned a long time ago to never ever judge, as you never know what the future may hold for you... how easy it is to give advice when it does not hit us personally. Anyway, I continue to pray for them all....

[Maryanne]

Well, I too have my own opinion which I also, like Sharon feel is private.

But I think a simple solution would be to just grant him a divorce and let him get on with his life. I know he has a family by another women. Then the parents could do what they want and take care of her.

I did not think up this idea on my own, I heard it from Gov. McCann, and it made me think. That would be a win win situation.

Maryanne

[kimmek]

From what I understand he will not agree to a divorce. He says there is no mnay at issue here. I do not exactly think that is true.

Keeping my opinion to myself as well

Kim

[stand4hope]

Well, I'm happy to let you know my very strong opinion. I totally agree with Becky and Ann.

Love to all,

Peggy

[ginnyde]

Please put my vote in the Ann/Becky column.

[sharyn]

Peggy,

I am not "afraid" to post my opinion... I simply feel that some things are very personal issues.

[stand4hope]

Sharon,

I sent you a PM, too. My comment certainly wasn't directed at you, but I guess I can see why maybe you took it that way. I was simply saying that I wasn't afraid to state my opinion. I'm sorry you took it personal - guess that happens with words sometimes. I've edited my post to say that I am happy to . . . .

Love to all,

Peggy

[berisa]

I also know about this story/news here in Hong Kong. It is really controversial. One is her husband, the other group is her parents. They both have their standpoints. I don't have the answer for this case. I think there is no exact right or wrong. So I won't comment on this. May Thy Will be done in this case.

[sharyn]

Peggy, I responded to you PM but I also wanted to publicly post my reply.... "I am so sorry I took your words out of context" ... Much Love, Sharon