A difficult question to answer for me. My sense of loneliness and abandonment sometimes affects how I feel about God. Other life experiences haven't helped me in this area. I have seen some really bad things done in the name of God and love. IT hasn't exactly brought me closer to God. Please don't r respond if you find the question too personal. I was raised not to discuss religion in proper company, so I would certainly understand anyone who sits this one out.
Steve
Steve I love your picture ....if that does not portray loniness I don't know what does....Steve, you don't deserve what you have.....none of us deserve what we have....I mean come on Donald TRump////(don't take that personally for all those who like him) but he is an idiot yet a billionaire and a president......He could be easily a homeless person....it's funny how this world is so separated from God and yet so connected......what do you want Steve, to be connected or separated......as avid as a Christian as I purport to be, the answer is still difficult for me.... Even Peter standing next to Jesus had a difficult time allowing Christ's finality...He even denied Christ.....and in Peter's weakness, Christ still saw strength enough to tell him that "on this rock I shall build my church" .....Steven , you may be at your weakest, yet God sees strength in you....you are here now and maybe it's because soemone needs your strength....do not sell yourself....do not sell God, short.......you may be someone's rock ...swallow hard and thank God for this day and ask Him for another mission......
AVB
AVB,
I totally understand where you are coming from. My spiritual ambivalence arises from many sources, some of which I cannot hope to explain tomorrow if I can get some rest tonight. (Our a/c is out and it is 80° in my room tonight).
I believe God loves me but want to know that is so. I fear being lost in the shuffle, overlooked or the victim of some cosmic joke. It makes you feel very isolated and alone, especially since the One left me high and dry. Anyway, more later provided my damaged memory assists me.
With kindest regards and much love,
Steve
Goodnight, Steven
Steve,
I've just re-read your post as well as AVB's reply. She has so poignantly that so many of us who live in Christ feel and believe. It is easy for anyone to be cynical towards God, especially when you look around and see the violence, horror, and man's inhumanity towards man... often in the name of God. I personally have witnessed unspeakable atrocities that have shaken my beliefs to the core, but I have always come back to God. We (and I) have asked the question... and it's a fair question, how would a loving God allow this? Lay people and Theologians have pondered this and so many other questions for hundreds of years. I don't think that there is a one size fits all answer... I know, that's not the response you wanted to hear. You really need to look deep inside yourself and search your soul, who knows... you might have just have an ah-ha moment. As I read your bio, I couldn't help but see that you've faced many difficult challenges in the journey we call life, and now there's new ride... PSP. I learned a while ago, never to ask the question why me? I know at times we all think we have it bad and we probably do, but just look around... you can always someone who has things worse than you. This is a great forum with plenty of shared experiences and some very sound sage advise. Just as you need ears to listen... you must have eyes to see. Perhaps a discussion with a local minister/pastor will offer a fresh perspective and help you discover the answers you seek.
Tim
Dear Tim:
I appreciate your suggestions. I know my cautious approach towards hypocrites and charlatans has interfered with my faith. I simply feel incapable of relying on my faith lest I be let down at a critical stage of my journey. At least now. As I've written before, that will hopefully change.
With regards to ministers and church leaders, I have one of the best in my corner. He is, ironically, my former pharmacist, Dr. Chris Sylvain. In addition to running a very successful pharmacy in New Orleans, where he works fifteen hours a day, he is a lecturer at Xavier University School of Pharmacy and the pastor of a small church with a large congregation. I used to attend before my first stroke. He would personally pick me and bring me to and from services on Sundays. Once I had the stroke my attendance felt kind of forced, and he understood. We stayed in touch not only because I was at his pharmacy often but because he would call me and check on me when we hadn't seen each other for several weeks.
When I told Dr. Sylvain about my diagnosis with IT, he actually had years in his eyes. When I called him two weeks ago to tell him I was at an assisted living facility that used another pharmacy, he was happy I had improved my living situation and promised to continue to pray for me for me and to visit me when he could. A truly special man who has gently nudged me towards making my faith unconditional, and certainly someone who leads by example. Talk about a guardian angel.
Thanks, as always, for your input Tim. With best regards and admiration, I remain,
Steve
Good to hear back from you. We're bombarded with chatter, mindless babble all day and everyday. Try not to overthink things... I've done that."Be still and know that I am God"... just listen for that small voice and remember that not everyday is good, but there is some good in everyday.
Tim
And that's why we call it FAITH.
I fully understand faith. I admire those who can cling to it no matter what. But I am a "the glass is half empty, I am out of drink, and I believe hurt too much to go to the grocer's today" or extremely negative kind of man today. I admire you for yours and hope it sustains you through the rough times. I sincerely do
With love and a dash of hope, I remain,
Steve
Hi
After over forty years as a nurse and midwife I always thought if there was a god he actually was very mean sometimes! However as I met a huge range of faiths within my clients I have always been fascinated by religious beliefs customs etc. I envy those who have a faith but I find it no comfort, and that was way before this journey.
I do lean towards Buddhist teachings , do no harm and the non permanence of anything, a Buddhist minister has just joined our hospice which is interesting.
You all have a great day, was it Dave Allen used to say and may your God go with you?
Julie
Thanks love. Profound and comforting. Thank you so much for your reply. I need all of the positivity I can get at this stage of my journey.
Have a great day/night wherever you are.
S
Work out your own salvation. Do not depend on others. Buddha
Therefore, my beloved, just as you have always obeyed me, not only in my presence, but much more now in my absence, work out your own salvation with fear and trembling; Phillipians 2:12
I had an epiphany a short while ago that I want to share with all of you. I posted earlier over the last few days about taking comfort in music. I replied to, I believe, Nanny, about a song entitled "What Sarah Said," a haunting tune which is appropriate for all of us, carers and the cared for. I mentioned that it resides at the top of a playlist called Music to Die By. This, in turn, led me to listen to the playlist late yesterday afternoon. On the list is a song entitled "Frail" by Jars of Clay, an American Christian band who had crossed over to mainstream charts about fifteen years ago. Being an avid music fan, they were on my radar although Christian rock is not exactly my cup of tea.
Anyway, for some reason, "Frail" kept playing in my head all evening. About thirty minutes ago a Scripture popped into my head unbidden. ( I am a Christian but I know very little of the Bible and generally tune out when people begin to exchange references to specific Bible passages.) The scripture I am referring to is Psalm 39:4, which states,
"Yahweh, make me to know mine end, and the measure of my days, what it is; that I may know how frail I am."
Blew my mind completely in a comforting way. I'll have to contemplate this further to understand exactly what I can learn from, but I was so overwhelmed by a feeling of peace (missing so long from my life) that I had to get this down somewhere. Hope it helps you my beloved friends. I am more than happy to share that playlist with anyone interested although I must warn you it is more maudlin than uplifting.
With love for you all, and extreme fatigue, I remain, faithfully as possible,
Steve
It's such a great question, Steve. I'm glad you raised it. I'm more pagan than Christian, and like you I am too aware of the evil done in the name of religion to be persuaded, but I was raised a Methodist and sometimes go to a UCC service in town, even sang in the choir for a while, before my sweetheart and I started spending weekends at his old farmhouse in the western hills where he was raised.
Anyway, I was drawn to church this morning, as my sweetheart is in care right now, and I had the chance, and, since I needed to pick up his mail and do a bit of maintenance at his place, I thought I would go to church there.
So I got up early, made a thermos of coffee and drove the hour and a half on winding roads northwest, and am very glad I did. It was a beautiful morning. I was startled and thrilled to see a bald eagle land on the snowbank by the road as I drove, and three deer crossed in front of me. The old white UCC church in the village is pretty and plain. I have attended services there just three or four times. The service is simple and familiar, loving and humane. Most of the small congregation, maybe 20, all older folks, know my sweetheart from childhood and welcomed me warmly, and asked after him. I was hugged. He and I were named in the list of folks being prayed for, as I was assured is always true. The new minister, a graceful woman, also older, told me to call if I ever needed any comfort she could provide.
I really felt cared for and centered. It was lovely. It helped. If more Christians were like these, the world would be a better place.
Afterwards at the farm, I put on snowshoes, wrapped some flashing around an elm the porcupines like to gnaw on and walked down across the sunny snowy fields, through a woodland, to an overlook where my sweetheart and I used to go, and wept.
Then I drove back home and to the hospice and took my guy out for a long tour of the grounds in his wheelchair, tried to get some food into him, and told him all about his friends I had seen that day.
I didn't get my taxes done as I had originally planned, but it was a good day.
Now maybe I can sleep an hour more before heading off to work. Goodnight, what's left of it.
Love and peace, ec
What a beautiful experience. It sounds that your spiritual moment was beyond the church but most assuredly in church as well. You are right, If we all lived with the Spirit of Christ, lifting each other up....this world wouldn't need religion......and it would be a better place
You still work.....Do I ask you that every time you talk about it? What is it you do Ec?
(HUGS)
AVB
Chief editor and supervisor of legal proofreading for the legislature. We just got through the first avalanche of work for this session, and I have decided to take some leave, day to day. My sweetheart is weakening.
Oh no EC. I'll pray for a rally and a plateau in a good state. Hopefully this will occur. Despite my confusion about God and his role, I am always prepared to pray for others; it's myself I cannot pray for except for my daily request that He take me home peacefully and painlessly.
With much concern for you and "your guy", all of my love,
Steve
The Holy Spirit is everywhere and speaks to us more often than we know... we just need ears to listen. It's a little late for me now and I'm not in a good way. EC is correct in her comment about some Christians... there are plenty who can talk the talk, but do not walk the walk. When I can, I'll reply to your earlier post... ours is a difficult journey (I too have PSP and FTD) to be sure. Sometimes it's not just a physical journey for the cared for, it can also be a faith journey of faith for the carers and cared for as well.
"Where two or three are gathered in my name, there am I in the midst of them" . Jesus said this. You can feel his warmth and love coming from those believers at the UCC church. I think we try to put a human perspective on God, and this makes God difficult to understand. Jesus however, is our link to God. He preaches love and peace. He became man, he suffered and died. I can relate to him. God is a total matter of faith. I tell myself that as a believer, I will concentrate on Jesus as he will lead me to God. My thoughts entirely, just reflecting on what you asked. God bless. X
Thanks for your input. I posed the question because I am all out at sea about spiritual issues right now. I appreciate ALL of your responses as I try to get a grip on my own beliefs lest I just give up or blame Him for my mistakes. I cannot tell you how comforting it was to see 14 responses when I logged on today. To me it means all of you really care about my soul, and that is a tremendous thing.
With my eternal gratitude, I remain,
Steve
Steve,
I'm not the one with PSP, my husband is, and yes I do think it can test your faith. I have seen things too, that I've asked God why? And people will do bad things in the name of God. Things that have happened in my life to certainly test me before my husband's PSP. In all those times, even when I'm asking why, I'm still praying/talking to God. I've been so mad at God sometimes that I've yelled and conveyed the unfairness of it all, and yet I still believe or I wouldn't conversing with Him. My faith has kept me glued together, even when I'm angry at God. I believe that there is a reason for everything. God is in control and has a plan for everything that happens. We may not see it, but in everything "bad" that happens it touches someone else in a good way. It may strengthen someone's faith, or turn someone to prayer, or not to take a life for granted. I'm not sure if I'm explaining it right. But I do know that God never abandons us in good times or bad times. God is always there, it's us that moves away. My prayer for you is that you will find the peace that God wants for you, and that your faith be strong.
LynnO
Lynn,
I think I understand where you are coming from. I have not had the same commitment to my church (I am Roman Catholic) since I prosecuted a Catholic priest for two counts of aggravated rape of two altar boys in the mid-1990s. The Church closed ranks around him but the Quiet Assassin (a nick-name conferred on me by my boss) got him. Guilty as charged with two life sentences without the possibility of probation or parole. That SOB will die in Angola prison, a very unpleasant place.
This, along with my long history of health problems, the infidelity of my second wife, and the fact that the front row of every church seems filled with rich and prominent hypocrites all have shaken the foundation of my beliefs. I know it is not fair to hold God accountable for the actions of man, I often wonder why He allows such evil to exist. I still believe, but the facts of my current circumstances just make believing more of a task than a comfort.
I will do what I can to change that but would welcome more signs that He is paying attention. The loving God I was raised to believe in would never have allowed IT to take away everything but my dignity.
Best regards,
Steve
Truer words were never spoken.
Thank you.
Steve
I haven't forgotten about a response to your earlier post, many times I will forget... just the nature of thee FTD beast. Experiencing some problems with my email and server... need to get it resolved first.
Tim
I did look at God during the "bargaining" stage of my illness. However, I remain a lifelong atheist, and I don't expect that to change. I have no animosity, or bitterness, I fully accept my illness. In many ways it has enriched my life by achieving things that I would never have done pre-diagnosis. Religion is just not for me.
Good for you, rooting out the evil in our midst. I am wary of the, "God's plan" theory except that his plan involves us moving on to heaven, but because we have free will to choose, it is up to us if we get there. I heard that a lot of illnesses are due to mankind. For instance, I have had cancer twice, something that I did may have triggered it due to my genes being faulty, because of something one of my ancestors did, eg smoking, drinking, being affected by chemicals etc. I have free will, but only in the environment in which we live, if we pollute it, it affects us. Garbled, sorry. We're going out to a penitential service as it's Holy Week. X
I envy your strength. It's inspirational and I need inspiring just about now.
Thanks Robbo.
Steve
Hi Steve, nursing my husband with PSP, I never lost my faith, or even questioned it. I did lose faith in some of my friends though, who drifted away and as I predicted, made contact again soon after my husband died. I was always told not to put my faith in man but God alone. I did get angry with God though. Not for making C I'll. I don't believe He did. I got angry with the situation and would cry out loud things like, "Lord, you are supposed to be able to move mountains so please get this stupid hoist to go in the direction I want it to". Once when C didn't get to the toilet on time and tried to clean himself up but failed, I shouted to God that I didn't think much of His design of us, making getting rid of waste so messy and smelly. C thought it very amusing. God is my friend, the one I confide in, the one who gave/gives me that very special feeling of peace only He can give when my world is in turmoil and I ask Him for help. He is the one who got us through to C's end/new beginning and is continuing to walk with me now.
When we see the dreadful things that go on in the world in the name of religion/God, it is people who do the awful things not God. He gave us free will and didn't make us to control. We can chose what we do and how we do it. When it comes to illness it's hard to fathom why some people have to suffer so much, but if we believe Jesus died on the cross, we know he suffered as well. His mother was pregnant before she married, he was born in a dirty, smelly, animal shelter, Herod wanted to kill him so the family had to flee their country as refugees, as an adult he was ridiculed, spat at, beaten and executed. If it can happen to the Son of God, it can happen to any of us and He knows what suffering really is like so I believe cries for us....no I don't believe He is a man in the sky looking like us but I know how my feelings of despair can turn to perfect peace when I cry out to Him.
I became a Christian at 8pm on 31st March 1984 when I knew and felt for the first time that He loved me. Whatever has happened to me since, and bad, sad things have happened, I can't deny my conversion...it happened and was real, so no Steve, it hasn't changed my beliefs.
Here endeth the sermon...whew! I bet you wish you never asked. 🤣
XxxX
Not at all Nanna. I have become so isolated by it that I have become uninformed and clueless about issues I believed I had resolved long ago. I envy your certainty on this critical moral question. However, I can no more deny my doubts than you can hide the strength which shines through in your reply. I am trying to be true to and with myself and I feel utterly clueless so much of the time. I know my thoughts will be different tomorrow than they are today. To me that is one of the worst things about IT. I am foundering and it makes me even crazier than I usually am. I just need an answer when I am not sure what the question is. I have to stabilize and don't know how. My former psychiatrist gave me little direction. He preferred to lecture me to having an honest exchange of ideas. He even used my diagnosis of IT as an opportunity to attack my choice to seek aggressive pain management. I lost all respect for him and his colleagues, who are professionally incapable of admitting they are wrong. In fact, not one medical professional who dismissed me as a drug-seeking whiner before my diagnosis has come anywhere near to apologizing for the fact that they were wrong in minimizing my concerns. That sucks.
Sorry to rant and rave. Sometimes the fundamental unfairness of my life just takes over a quiet, mild-mannered man and makes him a raving lunatic. You should not have to bare the brunt of my frustrations, and I apologise that you have caught me in this state.
God bless you and yours. If I can ever reciprocate, don't hesitate. As my mother says, I am very good at helping others with their problems but have no clue what my own are.
Much love,
Steve
I had a young friend, long ago now. I worked with his mother when I first came to Maine. Her husband had died painfully of a rare blood cancer when her son was 10, the same year they explained to their son that he had cystic fibrosis. The boy, with whom I'd bonded over a shared love of Jethro Tull, was 16 when she died of a heart attack, not two weeks after his grandmother, who lived with them, had also died.
So here is this orphaned teen, living on his own, with a painful, disabling, terminal illness. I spent a lot of time with him over the next seven years. He had been raised Catholic, but wanted something more immediate and personal, and joined a couple of very sketchy evangelical groups in his search. We talked about religion quite a bit. I never could reconcile our friendship with his willingness to believe in a God who was going to toss me into the big fire for eternity, but I was always grateful that he had the comfort of his religion, because I had nothing to offer as he looked daily into the void, struggling pitiably for every breath, every day. He was a good kid, earnest and dear. He worked when he could, and never complained, at least not to me.
One time I asked him how he managed to maintain his faith in light of all the grief and suffering he had had heaped upon him, and he said, "I believe God tests the metal He finds worthy."
I was with him when he died at 23.
I don't believe, but I am glad he did.
For Paul Levesque
Absolutely amazing the strength some can summon in the face of overwhelming adversity. I have often been told that God doesn't put anything on you that you can't handle. I fervently hope this is true and am coming around to that belief.
A touching story about a quiet hero.
Steve
You are right, Steve, and just like NanaB said, we are given free will to choose. But I still believe that God is with us whichever direction we go. It's also our choice to see Him and the good in life. Although it's really hard to do that sometimes. Without my faith I would have nothing, I wouldn't be able to see joy in the little things, continuing each day would seem pointless. So I'm hanging on as tight as I can, and I truly believe that one day, there will be no sickness of any kind, no sorrow, no hurt, or despair. Stay focused on our Savior, not the people who have let you down. We're all in this together.
Lynn
Lynn, thank you for your powerful reply. I absolutely know God is there. The truth is that I am afraid to live and afraid to die. I know it is His decision to make. I just have felt let down or forgotten so many times in my 57 years that my cowardice is paralyzing. I envy your strength and certainty, and will strive to acquire my own. Pray that I succeed.
Best regards,
Steve
Steve, I can only imagine the fear of having this horrible disease. It breaks my heart to see my husband struggle as he does, and there is nothing I can do to stop it. Just know that God will never forget you, nor will I. You'll be in my prayers daily.
Lynn
My Dad has passed away...
Change of medication.
Changes
Gratefulness for the love and support this group has for each other. 
