[Evonne]

I copied and pasted this from this weeks weekly check in because I asked Steve a question about acceptance and I would like to hear more stories about how others have come to accept their PD...and move forward. You know, not get stuck in the sad and angry at God and life stage of grief. I haven't gotten stuck there yet, but I seem to keep bouncing back and forth a lot and staying there longer than I would like. Please read and respond if you would like to. Thanks.



Steve,

When you say that life does go on as we find acceptance of our situation, I want to know HOW to really accept it. I reach this point where I think I have accepted it, then something new crops up with me. It sends me into this whirlwind of doubt and uncertainty and frustration with God and with myself. I have always had a very deep faith even as a small child. I have had a lot of things happen in my life that have been difficult to deal with but I have managed to accept them and move forward and just trust God. This time things are different. I am sad and angry at God...not a good combination. Yesterday a friend that I have been friends with for fifteen+ years called me. We started talking about my faith and I completely broke down. She asked if I had been going to church regularly. I told her that I hadn't been going. I told her about all of my feelings and how I just feel that I don't belong there right now. She said that maybe God was trying to get my attention with all of this health stuff. I told her that I didn't think God worked that way and that if he did, I didn't need that kind of God in my life...followed by an expletive! She asked me if I believed that God could heal me. I told her that I would like to think so, but that there are so many sick and hurting people in the world and people dying of diseases that can't be cured. I question the ability of God to heal because if that were the case...why is there so much suffering and sickness everywhere??? Yeah...I'm a little bitter. She went on to tell me to focus on the positive and that she would be praying for me and that I should keep my eyes open to God working in my life. The spiritual side of me wanted that to be true...to see God working in my life. The negative part of me thought, "Yeah, right...you just don't get it!."

Well, yesterday shortly after that conversation I went out with my sister to run some errands. I wasn't planning on going to Costco, but we happened to stop there. Lo and Behold...I ran into my Pastor's wife! I felt so compelled to go and talk to her...so I did. I explained my situation and asked her about a group at church that I had heard about that focuses on people with chronic health conditions. As we were talking my Pastor walked up. Again, I explained my situation. Mainly, I explained the same thing that I wrote up in the first paragraph of this post regarding acceptance. They were both so wonderful and encouraging. At one point I began to cry because I really couldn't believe that God had brought me together with them yesterday. He knew how much I was hurting and how much I needed some reassurance that he is good and capable of miracles. Long story short, we all stood together in the front of Costco and prayed together. They had me write my number down and invited me to come find them at church on Sunday. Um, yeah...I'll be there. God got my attention this time.

For those who aren't spiritual...my goal was not to offend you with this post. My goal was to give people who are like me, lacking in their faith because of unfortunate circumstances, a little boost in their faith.

With Love,

Evonne
__________________

[paula_w]

Evonne and everyone ,

While you are on the subject of spirituality, I would like to recommend a book called The Shack by William P. Young. It is fiction, but full of - well let's just say there is much truth and no condemnation. If it grabs you, you won't put it down till finished and it's an easy read. It's about a tragedy of the worst kind, and a man's experience in coping with it. This is not a religious book, it's a spiritual one - and there is a big difference. Possibly the best book I ever read, put simply and written simply.

paula

[Virginia Therese]

Paula...and all...I want to share with you something that happened to my younger daughter in May of this year. She lost her 26-year old daughter in a horrific auto accident. Shortly after Lindsay died, someone gave my daughter a copy of The Shack telling my daughter that he felt that this book spoke particularly to the pain and suffering that my daughter was experiencing. Kim told me that it was exactly what she needed at that particular time in her life...that she literally could not put the book down. My pwp is presently reading this book, and just this morning, she shared a few passages with me. We discussed the fact that many of the concepts presented, we already knew...BUT it is the way in which these concepts are portrayed that makes all the difference in understanding many things in life that just seem elude what our finite minds are able to understand. As I said to my pwp...it is such simple reading, but its message is so profound...giving us a much clearer view about so many questions that we have about what we consider to be inequities, i.e., why the suffering and pain, etc. The passage that my pwp read to me this morning brought us both to tears...perhaps, in part, because it seemed to "speak to" the actual tragedy of losing my granddaughter...but, I believe, too, that it would have brought most people to tears. I have only begun to read the book, but, I assure you, as soon as my pwp finishes reading it (which should be very soon in that it's difficult for her to put it down)...I'll be reading it. It is NOT a religious book...it is spiritual.

I hope all of you are doing well...I posted a thread earlier today in which I mentioned that I had not posted here in a very long time...and here I am posting twice within a very few hours.

Therese

[harley]

i wrote this a few years ago and want to share it with you evonne.

I was 15 years old when I nearly died. I developed shingles. This painful, horrid rash began a path around my right ribcage. Then stopped and spread into a 3 inch band upwards. Soon after this began, I developed excruciating headaches. Then, delerium. My mother took me to several doctors before finally one of them gave me a spinal tap. They were in shock. I had encephalitis, meningitis.. and the shingles.. all 3 illnesses at one time. I nearly died. But, I didnt. A couple years later, I had meningitis again. And I survived.

When I was in my early 20s, I went on a train ride from Seattle to St. Paul. Somewhere in Montana a woman boarded the train and sat down next to me. She was full of grief. I sat quietly until she softly began to speak about the passing of her husband.

The conversation was filled with sorrow, but also relief. Her husband had suffered a horrible decline in a long battle against a degenerative disease called Parkinsons Disease. In the final years, the family could no longer bear to see his suffering, or handle the demands that were made by the physical aspects of this disease. They decided to put him in a nursing home. The feeling of guilt stemming from the decision was evident in this women’s words. But, even clearer was the bitterness left inside of her. An overwhelming sense of loss combined with frustration and complete despair came from her face as her mouth poured out the words that told of her family’s struggle. I felt so much pain for this woman. I had no idea how to react, so I let her hold me as she came to terms with what had happened . The man that she had loved had wasted away in a slow, agonizing illness. And, she had to suffer so. It did not seem fair.

A few years later, I began having difficulty breathing. It was just a slight annoyance at first, but soon became hyperventilating. This went on for a couple of years of being diagnosed with panic attacks and put on anti anxiety drugs. Then the rigidity began. By the age of 26, I could barely move at all. I had been on many different drugs, and given diagnosis from epilepsy to stress from being a single mother. But, the rigidity scared me. I went to yet another neurologist. He decided to try me on another drug. Sinemet. Leva-dopa. It worked immediately. The diagnosis. Parkinsons Disease. A result of encephalitis. I think I stopped breathing for an entire 5 minutes.

I went to neuro after neuro to find another dxd.. anything, ANYTHING but Parkinsons Disease. They would fix me. They had to. They fixed me when I had encephalitis, they fixed me when I suffered a second bout of meningitis.. my daughter developed cancer.. they fixed her.. They would fix this. They had to.

Finally, I accepted the disease as my fate. I fell to my knees and sobbed til there were no more tears. I was a single mother of 3 children. I had to take care of them. The youngest was only 4 years old. What was I going to do? Then I remembered the woman on the train. My heart almost fell out of my chest. I pleaded with God to make this horrible disease go away. I would not be able to stand knowing my family could suffer so much. OH LORD, COMFORT ME! HEAL ME! PLEASE!

I had to quit working as the disease got worse. I waited for God to lay His hand on my body slowly succumbing to this illness. But, there was no change but for the worse. I married a man out of desperate vulnerability. He became abusive and I prayed and prayed for my marriage. On my 40th birthday, he beat me severely, and I could no longer pray for something so damaging. I divorced.

My children were not accepting my illness. I tried to downplay it to be strong for them and for myself. Then, my oldest daughter had a performance at her highschool. The parents were asked to come onstage with the singers at the end. I could barely stand. She looked at me with tears in her eyes and mouthed.. “It’s ok Mom, I love you.” That night I prayed again for God to please heal me. My children needed a mother. They needed me.

It has been 24 years since my diagnosis. I quit praying for God to take away my illness many years ago. I now pray for Him to show me how to live with it, and lean on Him to keep me strong I have learned so much in these 24 years, that.. yes… I feel God has blessed me with this Parkinsons Disease. It has made me live a life of humility. No time clocks, no deadlines. The things that at one time were so important have become mere memories, as other things that were once taken for granted now are a struggle to achieve, therefore they are blessings when i do. i appreciate so many more things and i value peoples offers of help more than ever before. He is showing me what is TRUELY important.

I am now 50 years old. My daughters are grown, and I have two granddaughters. the oldest grandchild knows Grandma has a health problem and accepts it as part of who I am. She asks me if I am doing the 'weeble wobble today'. We live with the reality of a disabling condition. It has changed who I was into who I am now. And, God is walking right beside me as He guides me through the days I live with it. It is His will that I learn life this way. And, the lessons He teaches are those never to be forgotten. The woman on the train had an opportunity to get to really know who her husband was. Not just the man before the disease.. but the man that he became through the disease. I pray that she found peace.

[paula_w]

therese,

you have described the message in the Shack perfectly without reading it yet. I am so sorry to hear about your granddaughter. How perfect that someone gave your daughter this book and that she was able to receive the [for lack of a better word to describe it] living words of comfort and solace that flow through this simple story of human pain and suffering.

...and as you said, even though we've heard these concepts before, this story is unique and different in its presentation, enabling people to actually 'feel' and visualize' the intention of a beautiful spiritual existence that does not condemn, that is missed by so many people when delivered through institutionalized religion.

This book is not for those looking for intellectualism. It would only lend arrogance to a story that is profound and beautiful in its simplicity and spirituality. It's actually takes one through unspeakable tragedy in a manner that i could get my head around. All with no condemnation.

i'm going to read it again.

paula

Originally Posted by therese

Paula...and all...I want to share with you something that happened to my younger daughter in May of this year. She lost her 26-year old daughter in a horrific auto accident. Shortly after Lindsay died, someone gave my daughter a copy of The Shack telling my daughter that he felt that this book spoke particularly to the pain and suffering that my daughter was experiencing. Kim told me that it was exactly what she needed at that particular time in her life...that she literally could not put the book down. My pwp is presently reading this book, and just this morning, she shared a few passages with me. We discussed the fact that many of the concepts presented, we already knew...BUT it is the way in which these concepts are portrayed that makes all the difference in understanding many things in life that just seem elude what our finite minds are able to understand. As I said to my pwp...it is such simple reading, but its message is so profound...giving us a much clearer view about so many questions that we have about what we consider to be inequities, i.e., why the suffering and pain, etc. The passage that my pwp read to me this morning brought us both to tears...perhaps, in part, because it seemed to "speak to" the actual tragedy of losing my granddaughter...but, I believe, too, that it would have brought most people to tears. I have only begun to read the book, but, I assure you, as soon as my pwp finishes reading it (which should be very soon in that it's difficult for her to put it down)...I'll be reading it. It is NOT a religious book...it is spiritual.

I hope all of you are doing well...I posted a thread earlier today in which I mentioned that I had not posted here in a very long time...and here I am posting twice within a very few hours.

Therese

[Evonne]

Originally Posted by paula_w

Evonne and everyone ,

While you are on the subject of spirituality, I would like to recommend a book called The Shack by William P. Young. It is fiction, but full of - well let's just say there is much truth and no condemnation. If it grabs you, you won't put it down till finished and it's an easy read. It's about a tragedy of the worst kind, and a man's experience in coping with it. This is not a religious book, it's a spiritual one - and there is a big difference. Possibly the best book I ever read, put simply and written simply.

paula

Paula,

Thanks for the book suggestion. It sounds like it might be just what I need right now. I am going to the library today and hopefully they will have it there...otherwise I will be off to Barnes and Noble!
Love,

Evonne

[stevem53]

Another good book.....

"The Language of Letting Go"..by Melody Beattie

[Evonne]

Originally Posted by therese

Paula...and all...I want to share with you something that happened to my younger daughter in May of this year. She lost her 26-year old daughter in a horrific auto accident. Shortly after Lindsay died, someone gave my daughter a copy of The Shack telling my daughter that he felt that this book spoke particularly to the pain and suffering that my daughter was experiencing. Kim told me that it was exactly what she needed at that particular time in her life...that she literally could not put the book down. My pwp is presently reading this book, and just this morning, she shared a few passages with me. We discussed the fact that many of the concepts presented, we already knew...BUT it is the way in which these concepts are portrayed that makes all the difference in understanding many things in life that just seem elude what our finite minds are able to understand. As I said to my pwp...it is such simple reading, but its message is so profound...giving us a much clearer view about so many questions that we have about what we consider to be inequities, i.e., why the suffering and pain, etc. The passage that my pwp read to me this morning brought us both to tears...perhaps, in part, because it seemed to "speak to" the actual tragedy of losing my granddaughter...but, I believe, too, that it would have brought most people to tears. I have only begun to read the book, but, I assure you, as soon as my pwp finishes reading it (which should be very soon in that it's difficult for her to put it down)...I'll be reading it. It is NOT a religious book...it is spiritual.

I hope all of you are doing well...I posted a thread earlier today in which I mentioned that I had not posted here in a very long time...and here I am posting twice within a very few hours.

Therese

Therese,

Thank you for sharing your story with us on this forum. I am so sorry for the loss of your granddaughter. It is always so tragic to lose someone at such a young age. My pastor and his wife lost their son almost two years ago. I think that he was only about 20 or 21. Knowing what they went through and knowing that their spirituality has survived such a great loss is very inspiring. Another thing that I love about them is that even though they have suffered what I would consider to be the greatest loss imaginable, they are so compassionate towards people that are experiencing other types of grief.

I hope that you and your family are doing okay. You are all in my thoughts.

Love,

Evonne

[Evonne]

Originally Posted by harley

i wrote this a few years ago and want to share it with you evonne.

I was 15 years old when I nearly died. I developed shingles. This painful, horrid rash began a path around my right ribcage. Then stopped and spread into a 3 inch band upwards. Soon after this began, I developed excruciating headaches. Then, delerium. My mother took me to several doctors before finally one of them gave me a spinal tap. They were in shock. I had encephalitis, meningitis.. and the shingles.. all 3 illnesses at one time. I nearly died. But, I didnt. A couple years later, I had meningitis again. And I survived.

When I was in my early 20s, I went on a train ride from Seattle to St. Paul. Somewhere in Montana a woman boarded the train and sat down next to me. She was full of grief. I sat quietly until she softly began to speak about the passing of her husband.

The conversation was filled with sorrow, but also relief. Her husband had suffered a horrible decline in a long battle against a degenerative disease called Parkinsons Disease. In the final years, the family could no longer bear to see his suffering, or handle the demands that were made by the physical aspects of this disease. They decided to put him in a nursing home. The feeling of guilt stemming from the decision was evident in this women’s words. But, even clearer was the bitterness left inside of her. An overwhelming sense of loss combined with frustration and complete despair came from her face as her mouth poured out the words that told of her family’s struggle. I felt so much pain for this woman. I had no idea how to react, so I let her hold me as she came to terms with what had happened . The man that she had loved had wasted away in a slow, agonizing illness. And, she had to suffer so. It did not seem fair.

A few years later, I began having difficulty breathing. It was just a slight annoyance at first, but soon became hyperventilating. This went on for a couple of years of being diagnosed with panic attacks and put on anti anxiety drugs. Then the rigidity began. By the age of 26, I could barely move at all. I had been on many different drugs, and given diagnosis from epilepsy to stress from being a single mother. But, the rigidity scared me. I went to yet another neurologist. He decided to try me on another drug. Sinemet. Leva-dopa. It worked immediately. The diagnosis. Parkinsons Disease. A result of encephalitis. I think I stopped breathing for an entire 5 minutes.

I went to neuro after neuro to find another dxd.. anything, ANYTHING but Parkinsons Disease. They would fix me. They had to. They fixed me when I had encephalitis, they fixed me when I suffered a second bout of meningitis.. my daughter developed cancer.. they fixed her.. They would fix this. They had to.

Finally, I accepted the disease as my fate. I fell to my knees and sobbed til there were no more tears. I was a single mother of 3 children. I had to take care of them. The youngest was only 4 years old. What was I going to do? Then I remembered the woman on the train. My heart almost fell out of my chest. I pleaded with God to make this horrible disease go away. I would not be able to stand knowing my family could suffer so much. OH LORD, COMFORT ME! HEAL ME! PLEASE!

I had to quit working as the disease got worse. I waited for God to lay His hand on my body slowly succumbing to this illness. But, there was no change but for the worse. I married a man out of desperate vulnerability. He became abusive and I prayed and prayed for my marriage. On my 40th birthday, he beat me severely, and I could no longer pray for something so damaging. I divorced.

My children were not accepting my illness. I tried to downplay it to be strong for them and for myself. Then, my oldest daughter had a performance at her highschool. The parents were asked to come onstage with the singers at the end. I could barely stand. She looked at me with tears in her eyes and mouthed.. “It’s ok Mom, I love you.” That night I prayed again for God to please heal me. My children needed a mother. They needed me.

It has been 24 years since my diagnosis. I quit praying for God to take away my illness many years ago. I now pray for Him to show me how to live with it, and lean on Him to keep me strong I have learned so much in these 24 years, that.. yes… I feel God has blessed me with this Parkinsons Disease. It has made me live a life of humility. No time clocks, no deadlines. The things that at one time were so important have become mere memories, as other things that were once taken for granted now are a struggle to achieve, therefore they are blessings when i do. i appreciate so many more things and i value peoples offers of help more than ever before. He is showing me what is TRUELY important.

I am now 50 years old. My daughters are grown, and I have two granddaughters. the oldest grandchild knows Grandma has a health problem and accepts it as part of who I am. She asks me if I am doing the 'weeble wobble today'. We live with the reality of a disabling condition. It has changed who I was into who I am now. And, God is walking right beside me as He guides me through the days I live with it. It is His will that I learn life this way. And, the lessons He teaches are those never to be forgotten. The woman on the train had an opportunity to get to really know who her husband was. Not just the man before the disease.. but the man that he became through the disease. I pray that she found peace.

Harley,

It's funny that you mention shingles. I posted a couple of days ago about a funny, creeping tingling sensation that stated midline and went around the left side of my back. I had shingles about four years ago and I had the same type of sensation back then. I hope that I am not having a relapse. No bumps yet though....I sure hope I don't get the shingles again!

Wow..what a powerful story you have. I relate to the feelings of the woman had whose husband had PD. One of my first residents at the care facility had PD. She was paralyzed by it and in a wheelchair. Her mind was still there but her body was not able to function anymore. She was incontinent of bowel and bladder. Each time I would change her, she would close her eyes as if she were ashamed. I would talk to her about all sorts of things the entire time I was taking care of her to try to take her mind off of what I was doing. Sometimes she would respond, but her voice was barely audible. I would get really close to her so that I could hear what she was saying. I thought about how hard it must be for her to be so aware of how her body had failed her. Currently, I am working with Alzheimers patients and although it is very sad, they are not aware of how much they have lost.

Boy, do I relate to how you fell to your knees and sobbed. I have cried until I have felt like there were no tears left...yet they kept falling. I think about my future and I am fearful. What will I become? I think about my kids and how much I want to be the mom that they deserve. The mom that has it all to give to them, not the mom that is stiff, achy, shaky, grumpy and exhausted. I think about my mom and my husband and how hard it is for them to see me changing...and so emotional. Although I try really hard to be "normal", I am not. That is what I am grieving.


I hope that I will be able to come to terms with this better than I have. I think part of my problem is that I am still waiting to hear what the MDS has to say in November. Then, maybe I will leave this stage of denial and anger and be able to really accept it and move on.

Thank you for all that you have shared with me. I really appreciate your openness. Well, my mom just got here and we are heading out to do some shopping...retail therapy!

Love,

Evonne

[Virginia Therese]

...to all of you who offered your condolences to me on the death of Lindsay. We all have a very long journey of grieving ahead of us...most especially my daughter, Kim. Thankfully, she has a strong faith...a spirituality about her that I feel certain will get her through this most difficult time in her life. I pray many times throughout my day that God will be with all of them as they continue their individual grieving process to a place where they may one day experience at leasat a degree of peace within. I, myself, do not believe in the words, "time will heal"...I believe that there will always be a hole in their hearts where Lindsay always had such a special place...but, I also believe that God's presence in their lives will bring them to a time when they will no longer grieve as they are now, but, they will find a measure of peace through their faith that assures them that "life is not ended..it is merely changed"...and that Lindsay is in a better place where one day they believe they will be united with her.

..and yes, Steve...The Language of Letting Go" by Melody Beattie...an excellent book that we have here in our home "library".

Blessings to all of you...
Therese