All, with his permission, I am reposting a note that Edde originally posted to the ALS-TDI website. His and "Team IPLEX's" unyielding pressure has helped several people get IPLEX, and continues to work towards making it available to other PALS who would like to try it. Below, he gives a good overview of why we need more funding for ALS, and some detail on the shameful level of current spending on this by our Government. Thank you Eddie, you are a true Champion for our cause...
Peace,
B.
========Begin Eddie's Note=======
As everybody knows, the speed of any research depends (in part) on the amount that is invested into that particular disease's research.
If 100 laboratories worked on a particular problem, not only is the likelihood of success 100 times greater but the research should progress more rapidly. At the present, with NIH spending only $43 million per year on ALS research , we don't have enough of the best scientists in the United States working on the problem. When California starts investing >$300 million per year and New Jersey investing $30 million per year in the area, this will more than double the research in the field. Finally, if the Stem Cell Research Enhancement Act (SCREA) of 2006 were to pass, it would allow NIH to fund derivation of human embryonic stem cell lines.We need more funding for ALS research, but it's not going to happen by itself. At the present, NIH is spending less than $44 million per year on all ALS research, and that includes... rehabilitation.
Does anybody else feel that this is a pitifully/ shamefully small amount/investment? Achieving regenerative and remyelinative therapies for neurodegenerative diseases, spinal cord, etc. and getting them successfully through clinical trials is way more difficult and challenging than flying to the moon. It is estimated that it takes over $800 million to move one therapy from discovery to market. At this rate... well just do the math.
I don't know how true this is, but I recently read that, ALS costs the government (Medicaid, Medicare, etc.) just about, $1 billion per year. If this is true, you would think that the government/ Congress would be more than willing to consider investing 10% of this amount or $100 million per year to develop regenerative and remyelinative therapies. Note that such therapies will most likely be useful other peripheral nerve diseases, not to mention, spinal cord injury, etc.
But like I stated earlier, it ain't going to happen by itself. I will agree that, we are definitely a very small group, but I believe Team IPLEX, has already demonstrated on at least 2 separate occasions, that... "It's never, the size of the dog in the fight,... It's always, the Size of the Fight in the Dog."
Sincerely,
Edward W. Esparza
(pals since 2005)
============End Eddie's Note============
Friday, May 8, 2009
Tuesday, May 5, 2009
Politics as usual...but we can change it...
My advocate hat is on. It is one of those huge sombreros with sequins and I've hung about a thousand lights on it. Its lit up like a huge doggone Christmas tree on Cinco de Mayo so get ready people...next week is National ALS advocacy week and I'm advocatin'
You didn't ask for it, but here is my simplistic view of politics:
Society to Politician: "Sir, do you care about my cause?"
Politician to Society: “That depends, - will it get me (re) elected?”
Society either: “Yes, absolutely” or “If you don’t do anything about it, anyone that runs against you will likely get elected because we will hate you for not caring or for acting unresponsive.”
Politician: (conjures picture of George W Bush looking out the window of Air Force One a day or two after Katrina hit.) “Yes, I care deeply about your issue, how can I help you.”
In my opinion, today the Media still reflects the social consciousness of our society, and without their pressure, we will most likely fail to ever get the attention we need for politicians to care about ALS. So, how do we get the media aware of this scourge that hides among us and strikes out at those we love without warning or prejudice?
If they are so willing to jump on board with an overblown "flu pandemic" that is going to lay a few people up for a couple of weeks then I have hope that they might actually soon acknowledge ALS as a major problem. Why?
Because my wife has been laid up for TWO YEARS along with thousands of other people just like her living in this great land of ours. She has not taken a step on her own for fourteen months. She can't lift a fork to eat, she can't hug her kids, she can't do a thousand things we take for granted every day. There are THOUSANDS of people like her. Where is the press for them?
Luckily for us, there is a growing ability for groups like PALS (People with ALS) and CALS (Caregivers for People with ALS) to have a voice and the tool we use is the Internet. The Web, Social Media, Email, Discussion Groups. All of these things give us power that we have not had in the history of the printed or published word. It's not that President Obama is going to give a bubble fart about what "some blogger" like me says, but if enough people start talking about this, the press will pick up on it and make it into a story that he and the rest of the politicians can not ignore any longer.
When is the last time you saw a video of some jackass doing something stupid on Youtube re-run on your ten o-clock news? That is the power of social media I'm talking about. It's called "going viral." I live in this world of Internet media. Some of my clients would LOVE for some positive story about their company to go viral. Unfortunately, the ones that do go viral usually are the negative ones. Did you see the "Domino's Debacle" last week? That is a perfect example of social media going viral. Did those idiots working there have any idea that their dumb-ass video would cause as much harm as it did? Probably not, but that didn't stop them from making a most idiotic mistake of posting it in a public forum where people were disgusted enough to bring it up to the right reporter that "broke" the story.
The trick is that we have to spread the word amongst ourselves. Generally first to people to are directly affected, then to people that are peripherally affected, then to people that are only affected by the notion that spreading the word is good in some way and can help either for the sake of helping or for their own sake.
I've said it before in this blog that generally, people don't do anything really "active" or controversial unless they fear a consequence or have personal motivation. That motivation can be positive, such as love, righteousness or even patriotism. It can also be negative like hate, disdain, disgust or even greed, spite or any of the other "seven deadly sins."
I don't know what I can get YOU to do to promote the government to contribute more than a paltry pathetic sum to ALS research for a cure. If you are reading this, you probably already have done something. If not let me give you a little motivation:
1) H lived a very healthy lifestyle.
2) She is kind.
3) She is caring.
4) She does not have any family history of this.
5) She has barely ever even been sick.
6) She did nothing to deserve or contract this illness.
She woke up one day and couldn't buckle our daughters buckle on her backpack. A few months later, she was given a 2 or 3 years to live. No treatment options. No "Let's try this."
Nothing other than, "well we wish we could help, and when you need a feeding tube or need help breathing, let us know and we'll get you connected."
She was just like any healthy 38 year old woman, only better than most. If she can get it, so can you. So can I. So can someone you know, love or care about.
So please. Next week is National ALS advocacy week. Please do something about it. If you have a contact in the press, send them this blog. Contact your local ALS Association or Muscular Dystrophy Association. If you know a politician, send them this blog. Ask them to read my writings since January or the Hawaii blog or the Mayo blog. Surely some of those words will strike a chord with someone that will care.
If not for her sake, or my sake or the sake of our girls, do it for your own sake because this thing is not going away unless we all get worried about it enough to get those with the money to solve it to care. One of my ALS advocate buddies recently told me "ALS is not an incurable disease, it is an UNDERFUNDED disease." I would add to that it is a disease that most people don't really know about, and therefore don't really care about. 2 years and one month ago, I really had almost no idea what ALS was, and I consider myself a fairly well informed human being. You can't care about what you don't know about.
If someone copies and pastes this post into an email, here is a link to the first post of my blog:
http://alschronicle.blogspot.com/2009_01_04_archive.html. Go back in the archive and read it. I hope it not only shocks you, but also warms your heart. I think it will. If you do, you will catch up on what ALS is and what it does to people like my lovely wife.
The audience for this blog has reached people in 27 countries now. I want it to reach a million people in each of those countries, because if it does, I bet it will reach a lot more than that. ALS does not stop at our border. People are dying from it all over the world. People that are dying from it are getting taken advantage of every day by opportunists that see desperation as a quick and easy cash-flow lever, like a slot machine that hits triple sevens every time.
Thanks for indulging my rant tonight. Please don't take it personally, I'm just a little madder than usual. Oh and by the way, I HATE chain letters. If you don't forward this to ten people, NOTHING bad is going to happen to you. You just might feel a little better about helping us "desperadoes" out, and that is a good thing.
Peace,
Bill
You didn't ask for it, but here is my simplistic view of politics:
Society to Politician: "Sir, do you care about my cause?"
Politician to Society: “That depends, - will it get me (re) elected?”
Society either: “Yes, absolutely” or “If you don’t do anything about it, anyone that runs against you will likely get elected because we will hate you for not caring or for acting unresponsive.”
Politician: (conjures picture of George W Bush looking out the window of Air Force One a day or two after Katrina hit.) “Yes, I care deeply about your issue, how can I help you.”
In my opinion, today the Media still reflects the social consciousness of our society, and without their pressure, we will most likely fail to ever get the attention we need for politicians to care about ALS. So, how do we get the media aware of this scourge that hides among us and strikes out at those we love without warning or prejudice?
If they are so willing to jump on board with an overblown "flu pandemic" that is going to lay a few people up for a couple of weeks then I have hope that they might actually soon acknowledge ALS as a major problem. Why?
Because my wife has been laid up for TWO YEARS along with thousands of other people just like her living in this great land of ours. She has not taken a step on her own for fourteen months. She can't lift a fork to eat, she can't hug her kids, she can't do a thousand things we take for granted every day. There are THOUSANDS of people like her. Where is the press for them?
Luckily for us, there is a growing ability for groups like PALS (People with ALS) and CALS (Caregivers for People with ALS) to have a voice and the tool we use is the Internet. The Web, Social Media, Email, Discussion Groups. All of these things give us power that we have not had in the history of the printed or published word. It's not that President Obama is going to give a bubble fart about what "some blogger" like me says, but if enough people start talking about this, the press will pick up on it and make it into a story that he and the rest of the politicians can not ignore any longer.
When is the last time you saw a video of some jackass doing something stupid on Youtube re-run on your ten o-clock news? That is the power of social media I'm talking about. It's called "going viral." I live in this world of Internet media. Some of my clients would LOVE for some positive story about their company to go viral. Unfortunately, the ones that do go viral usually are the negative ones. Did you see the "Domino's Debacle" last week? That is a perfect example of social media going viral. Did those idiots working there have any idea that their dumb-ass video would cause as much harm as it did? Probably not, but that didn't stop them from making a most idiotic mistake of posting it in a public forum where people were disgusted enough to bring it up to the right reporter that "broke" the story.
The trick is that we have to spread the word amongst ourselves. Generally first to people to are directly affected, then to people that are peripherally affected, then to people that are only affected by the notion that spreading the word is good in some way and can help either for the sake of helping or for their own sake.
I've said it before in this blog that generally, people don't do anything really "active" or controversial unless they fear a consequence or have personal motivation. That motivation can be positive, such as love, righteousness or even patriotism. It can also be negative like hate, disdain, disgust or even greed, spite or any of the other "seven deadly sins."
I don't know what I can get YOU to do to promote the government to contribute more than a paltry pathetic sum to ALS research for a cure. If you are reading this, you probably already have done something. If not let me give you a little motivation:
1) H lived a very healthy lifestyle.
2) She is kind.
3) She is caring.
4) She does not have any family history of this.
5) She has barely ever even been sick.
6) She did nothing to deserve or contract this illness.
She woke up one day and couldn't buckle our daughters buckle on her backpack. A few months later, she was given a 2 or 3 years to live. No treatment options. No "Let's try this."
Nothing other than, "well we wish we could help, and when you need a feeding tube or need help breathing, let us know and we'll get you connected."
She was just like any healthy 38 year old woman, only better than most. If she can get it, so can you. So can I. So can someone you know, love or care about.
So please. Next week is National ALS advocacy week. Please do something about it. If you have a contact in the press, send them this blog. Contact your local ALS Association or Muscular Dystrophy Association. If you know a politician, send them this blog. Ask them to read my writings since January or the Hawaii blog or the Mayo blog. Surely some of those words will strike a chord with someone that will care.
If not for her sake, or my sake or the sake of our girls, do it for your own sake because this thing is not going away unless we all get worried about it enough to get those with the money to solve it to care. One of my ALS advocate buddies recently told me "ALS is not an incurable disease, it is an UNDERFUNDED disease." I would add to that it is a disease that most people don't really know about, and therefore don't really care about. 2 years and one month ago, I really had almost no idea what ALS was, and I consider myself a fairly well informed human being. You can't care about what you don't know about.
If someone copies and pastes this post into an email, here is a link to the first post of my blog:
http://alschronicle.blogspot.com/2009_01_04_archive.html. Go back in the archive and read it. I hope it not only shocks you, but also warms your heart. I think it will. If you do, you will catch up on what ALS is and what it does to people like my lovely wife.
The audience for this blog has reached people in 27 countries now. I want it to reach a million people in each of those countries, because if it does, I bet it will reach a lot more than that. ALS does not stop at our border. People are dying from it all over the world. People that are dying from it are getting taken advantage of every day by opportunists that see desperation as a quick and easy cash-flow lever, like a slot machine that hits triple sevens every time.
Thanks for indulging my rant tonight. Please don't take it personally, I'm just a little madder than usual. Oh and by the way, I HATE chain letters. If you don't forward this to ten people, NOTHING bad is going to happen to you. You just might feel a little better about helping us "desperadoes" out, and that is a good thing.
Peace,
Bill
Saturday, May 2, 2009
Notes from the Girls
Maybe it's the gloomy weather in Denver today, but I'm feeling very down.
As you might know (or, unfortunately, more likely have no idea) May 11 is National ALS Advocacy day and there will be meetings and a walk in Washington DC to raise awareness for this abominable disease and to hopefully get someone in Washington to understand that the disease is not only catastrophic to the families and circles of people that it touches, but also that it is underfunded and remains therefore: incurable, untreatable and fatal.
One of my FB friends suggested that we send our stories to them to carry with them on their walk and give to whomever they can find to hear them. Hopefully, the tragedy of this will touch them enough to make some changes.
To those of us affected, it is very frustrating to hear that something like the "swine flu," which is very treatable and rarely fatal can generate the gross media attention and $1.5 BILLION dollars in Federal funding within a few days, while a disease that is always fatal, kills thousands every year in the US and wreaks complete havoc and suffering on families for multiple years on end will get a whopping $45 Million from the Feds this year for research, most of which will get spent on theory and possible causes and not on treatment or cure options for those already suffering. The total amount of funding for ALS represents about 3% of the money approved this WEEK for this sensationalized "possible pandemic." This $1.5 billion is IN ADDITION to the $6 BILLION already allocated to the federal budget to fight any pandemic. What the hell happened to the first $6 Billion???? So, federal funding for ALS overall represents a full six tenths of one percent (.006) of the money they will allocate towards ALS. It honestly makes me want to throw up.
This comes a couple of weeks after we were told that only a few (literally, I heard less than 10) people are getting IPLEX based on the restrictive IND ruling by the FDA, and OH BY THE WAY, we MIGHT be able to get this unproven, thinly tested and anecdotally lauded drug from some pharmacy in Canada. The price? $10,000.00 for one month's worth of doses. Nice.
I told the girls about the ALS walk in DC and asked them to write stories in their own words about what we are going through with hopes that someone will listen that has the power to make something happen. Here is what they said (in their own words and spelling...)
First, Jillian who just turned eight last week, two days before H's 41st birthday. When she handed her paper to me it was wet from tears.
"ALS: My mom has had ALS for 2 years and I really want her to get better. Please give some money to the scientists. I really want my mom to hug me and pick me up. My mom can't walk so my Dad has to carry her up and down the stairs. I do not want my Mom to die, so give her another chance at life. Please. Jillian, Second Grade"
Next, Rachel, who is 9 "and a half."
"Dear Congressmen,
My mom has ALS. ALS is a disease that eats your muscles and once all your muscles are gone you die. It is very hard at home. Every night my dad carrys my mom up the stairs and if he falls, they both could get extremely hurt. My mom is always in a chair, a bed or a wheelchair. When we go to places my mom usually get very tired. When she gets a shower, my dad carrys her into the shower and washes her. She uses a bucket on a stand for a toilet and then we dump it in the toilet and rinse the bucket in the sink.
I really miss my mom and I knitting together, dancing together, cooking together and exersizing together. This is a terrible disease for many familys and it needs more money to find a cure for it. Thank You, Rachel, 9 years old (4th grade)"
Finally, Shelby who is 11.
"Dear Congressmen,
My family is going through a really hard time right now. My Mom has a disease called ALS. ALS is a disease where your body gets weaker and weaker and your muscles don't work, then eventually you can not breathe. It is very hard for our family because of this disease. My Dad has to carry my Mom up the stairs two times a day every single day. He also has to give her a shower, feed her and many other things. My mom also gets very tired and sad. She used to be able to do may things! She used to be able to climb fourteen-thousand foot mountains and dance with us every single day. She could run marathons and go everywhere with us. My mom has had this disease for three years I ask you to please help out our family and many other families too. Thanks for listening, Shelby, Age 11, 5th Grade."
I will send these letters out to a friend who is a big advocate for ALS on the East Coast, and she will carry them along with pictures to DC and give them to whomever she can find that might listen. We wish we could go out to support the cause and walk with everyone, but travel for us is extremely difficult now.
Thanks to everyone near and far that are supporting us and all the other people out there who are dealing with this dark shadow over their lives.
Peace,
B.
As you might know (or, unfortunately, more likely have no idea) May 11 is National ALS Advocacy day and there will be meetings and a walk in Washington DC to raise awareness for this abominable disease and to hopefully get someone in Washington to understand that the disease is not only catastrophic to the families and circles of people that it touches, but also that it is underfunded and remains therefore: incurable, untreatable and fatal.
One of my FB friends suggested that we send our stories to them to carry with them on their walk and give to whomever they can find to hear them. Hopefully, the tragedy of this will touch them enough to make some changes.
To those of us affected, it is very frustrating to hear that something like the "swine flu," which is very treatable and rarely fatal can generate the gross media attention and $1.5 BILLION dollars in Federal funding within a few days, while a disease that is always fatal, kills thousands every year in the US and wreaks complete havoc and suffering on families for multiple years on end will get a whopping $45 Million from the Feds this year for research, most of which will get spent on theory and possible causes and not on treatment or cure options for those already suffering. The total amount of funding for ALS represents about 3% of the money approved this WEEK for this sensationalized "possible pandemic." This $1.5 billion is IN ADDITION to the $6 BILLION already allocated to the federal budget to fight any pandemic. What the hell happened to the first $6 Billion???? So, federal funding for ALS overall represents a full six tenths of one percent (.006) of the money they will allocate towards ALS. It honestly makes me want to throw up.
This comes a couple of weeks after we were told that only a few (literally, I heard less than 10) people are getting IPLEX based on the restrictive IND ruling by the FDA, and OH BY THE WAY, we MIGHT be able to get this unproven, thinly tested and anecdotally lauded drug from some pharmacy in Canada. The price? $10,000.00 for one month's worth of doses. Nice.
I told the girls about the ALS walk in DC and asked them to write stories in their own words about what we are going through with hopes that someone will listen that has the power to make something happen. Here is what they said (in their own words and spelling...)
First, Jillian who just turned eight last week, two days before H's 41st birthday. When she handed her paper to me it was wet from tears.
"ALS: My mom has had ALS for 2 years and I really want her to get better. Please give some money to the scientists. I really want my mom to hug me and pick me up. My mom can't walk so my Dad has to carry her up and down the stairs. I do not want my Mom to die, so give her another chance at life. Please. Jillian, Second Grade"
Next, Rachel, who is 9 "and a half."
"Dear Congressmen,
My mom has ALS. ALS is a disease that eats your muscles and once all your muscles are gone you die. It is very hard at home. Every night my dad carrys my mom up the stairs and if he falls, they both could get extremely hurt. My mom is always in a chair, a bed or a wheelchair. When we go to places my mom usually get very tired. When she gets a shower, my dad carrys her into the shower and washes her. She uses a bucket on a stand for a toilet and then we dump it in the toilet and rinse the bucket in the sink.
I really miss my mom and I knitting together, dancing together, cooking together and exersizing together. This is a terrible disease for many familys and it needs more money to find a cure for it. Thank You, Rachel, 9 years old (4th grade)"
Finally, Shelby who is 11.
"Dear Congressmen,
My family is going through a really hard time right now. My Mom has a disease called ALS. ALS is a disease where your body gets weaker and weaker and your muscles don't work, then eventually you can not breathe. It is very hard for our family because of this disease. My Dad has to carry my Mom up the stairs two times a day every single day. He also has to give her a shower, feed her and many other things. My mom also gets very tired and sad. She used to be able to do may things! She used to be able to climb fourteen-thousand foot mountains and dance with us every single day. She could run marathons and go everywhere with us. My mom has had this disease for three years I ask you to please help out our family and many other families too. Thanks for listening, Shelby, Age 11, 5th Grade."
I will send these letters out to a friend who is a big advocate for ALS on the East Coast, and she will carry them along with pictures to DC and give them to whomever she can find that might listen. We wish we could go out to support the cause and walk with everyone, but travel for us is extremely difficult now.
Thanks to everyone near and far that are supporting us and all the other people out there who are dealing with this dark shadow over their lives.
Peace,
B.
Monday, April 27, 2009
Taos - Nuevo Mehico
What do you give someone with ALS for their birthday? Material interests fall away in the face of this. I for one, want nothing ever again for my birthday than a memory of time well spent with family and friends.
Ok, so we are in Taos, NM tonight. Decided to come here at the last minute for H's b-day and to visit: Santuario de Chimayo which is a early 1800's church about 1.5 hours south of here. (Google it if you are interested.) There is a "Miracle room" there that people have gotten up and left their wheelchairs and crutches behind them waiting for us there. It will be H's 41'st bday tomorrow and we thought that there wouldn't be a better day to ask God for a miracle than then.
You know, we have gone down so many paths and it is difficult to say what will happen with this one. You can never expect a miracle, yet they say that you must believe in order to experience one. But, if you believe, shouldn't you expect one? A riddle inside of an enigma.
Blind faith, if you will.
Well, to that I say, what other kind of faith is there? In order to have faith, you have to believe in something that does not make emperical or scientific sense. You have to believe in the agenda of a higher power. You have to be at your very core, delivering your essence to whatever may come, hoping for forgiveness, health, love, or even some elusive understanding. We would all do well to say those prayers every day, I suppose.
Theological arguments aside, these are the things and God hopes from us, all in the spirit of selflesness.
So, tomorrow, we will visit this holy place and say our prayers. If you happen to remember, at around 11 am or so Mountain time, maybe you can say them for us as well, I expect that we will be there around then.
G-nite.
B.
Ok, so we are in Taos, NM tonight. Decided to come here at the last minute for H's b-day and to visit: Santuario de Chimayo which is a early 1800's church about 1.5 hours south of here. (Google it if you are interested.) There is a "Miracle room" there that people have gotten up and left their wheelchairs and crutches behind them waiting for us there. It will be H's 41'st bday tomorrow and we thought that there wouldn't be a better day to ask God for a miracle than then.
You know, we have gone down so many paths and it is difficult to say what will happen with this one. You can never expect a miracle, yet they say that you must believe in order to experience one. But, if you believe, shouldn't you expect one? A riddle inside of an enigma.
Blind faith, if you will.
Well, to that I say, what other kind of faith is there? In order to have faith, you have to believe in something that does not make emperical or scientific sense. You have to believe in the agenda of a higher power. You have to be at your very core, delivering your essence to whatever may come, hoping for forgiveness, health, love, or even some elusive understanding. We would all do well to say those prayers every day, I suppose.
Theological arguments aside, these are the things and God hopes from us, all in the spirit of selflesness.
So, tomorrow, we will visit this holy place and say our prayers. If you happen to remember, at around 11 am or so Mountain time, maybe you can say them for us as well, I expect that we will be there around then.
G-nite.
B.
Monday, April 20, 2009
Is God listening?
I have had some very interesting conversations over the past week that will be the inspiration for this post.
This week, I have re-heard and re-told the parable of the extremely religious man stranded on his rooftop during a flood with raging waters surrounding his house. A boat comes along and the boat's driver says "Come on man, jump aboard and I'll take you to safety." The man says to him, "No, I will not go with you, because I believe in the Lord and he will save me." So the boatman shrugs his shoulders and leaves, for there are many that need his help. Later, a helicopter flies overhead and drops a rope ladder to the man. Yet, the man waives them off shouting above the din "I will not go with you for I am a man of faith and the Lord God Almighty will save me, I know it to be true." Soon after, the house begins to break apart, falls off it's foundation and is lost in the flood and the man finds himself walking on clouds to stand before God. He says "Lord God, I prayed for you to come and save me. I showed you my true faith by not going with or using the tools of man, yet you have left me do die." And God says back to him "What are you TALKING about? I sent you a boat AND a helicopter." This of course makes the "extremely religious man" look foolish. This man might also be known as a "religious extremist."
I had a conversation with an old friend yesterday who had found my blog and wanted to get together and catch up. Part of that conversation was about "signs." To my mind, "signs" are messages from God that we need to be 'in tune' to hear or recognize. We need to have an open mind and we need to be receptive to alternative forms of communication. Generally speaking, I don't think God says anything to us directly, at least for the most part. I imagine a being with infinite wisdom and infinite ability to help but not infinite need for us to understand as much as we would like, for maybe we don't really know what help is in every case. Our "agenda" as humans generally is not a divine one, is it?
Obviously, we pray a lot. We also know that many people are praying for us every day and we are thankful for them (a.k.a you) and for those prayers. It is one of the most powerful things that anyone can do. To me, it is not important if they are praying to God based on Catholic, Protestant, Hebrew, Muslim or any other religious view. In my belief system, there is only one God, and I believe that this God speaks many languages, listens to many faiths and answers prayers based, not on the content of the prayer or the faith from which it originated, but based on whether the prayer is said with a true heart and whether or not the prayer can fit with the plan that God has in his grand vision, a vision that we are neither privy to nor are we meant to understand.
I, for what it is worth, believe that if it is in any way possible in God's grand plan that he has heard our pleas and will make H better. I have faith that if she does not get better, that in some way, a way that can't seem just to me or anyone else that knows her fair heart, that somehow, God knows better than us all. That there is a reason for this that someday we will understand, that it in fact will be obvious to us someday. It is this faith that keeps me strong. I still pray every day for her health, for a cure, for a turn towards healing and strength, not only for us but for all that are afflicted.
My Aunt lost her purse this week. She has a very strong faith and prayed for its return. Sure enough, a couple of days later, it was returned to her intact. There's nothing wrong with praying for something like that. She didn't tell me the nature of her prayer, but I bet is wasn't "God, can you please get me my wallet back because it will be a royal pain in the keester to cancel all my credit cards and get a new drivers license." Had it been, I doubt she would have gotten it back.
I don't know if I'm praying the "right way" for H's return to health and strength. I hope that I am, and feel that I do it with a pure heart. I have heard also that you have to "give up" in order to let God take over and work his plan. But if you "give up" well what does that really mean? You will stop taking medication? You will stop trying new treatments that come along? So many things have come along to us that have been "false boats", or so they have seemed. Did she, or we, just have to believe in one of them? If we believed in the radioactive stone, the energy work, the antibiotics or the olive leaf extract, would they have been our helicopter or our boat? I don't know.
In the mean time, you are my ships and my helicopters and every time you stop by, I will get on your boat or take your ladder. Maybe you need another person to row too, or a wing man to spot others in need. I will share with you what I can, I will help you if I can too. To reach back to another post I made, My bucket is not dry and it never will be. I am thankful to help when I can and I am wishful that I could help more.
Give thanks and enjoy the good things in your life and by all means, live it my friends.
Live it with strength, live it with faith and live it without fear. Control is a myth, material winds up in a landfill and nothing matters but what you can take with you. And what is that? You know what it is.
I hope you felt that because it came at you with much force (and Love, of course.)
Peace.
B.
This week, I have re-heard and re-told the parable of the extremely religious man stranded on his rooftop during a flood with raging waters surrounding his house. A boat comes along and the boat's driver says "Come on man, jump aboard and I'll take you to safety." The man says to him, "No, I will not go with you, because I believe in the Lord and he will save me." So the boatman shrugs his shoulders and leaves, for there are many that need his help. Later, a helicopter flies overhead and drops a rope ladder to the man. Yet, the man waives them off shouting above the din "I will not go with you for I am a man of faith and the Lord God Almighty will save me, I know it to be true." Soon after, the house begins to break apart, falls off it's foundation and is lost in the flood and the man finds himself walking on clouds to stand before God. He says "Lord God, I prayed for you to come and save me. I showed you my true faith by not going with or using the tools of man, yet you have left me do die." And God says back to him "What are you TALKING about? I sent you a boat AND a helicopter." This of course makes the "extremely religious man" look foolish. This man might also be known as a "religious extremist."
I had a conversation with an old friend yesterday who had found my blog and wanted to get together and catch up. Part of that conversation was about "signs." To my mind, "signs" are messages from God that we need to be 'in tune' to hear or recognize. We need to have an open mind and we need to be receptive to alternative forms of communication. Generally speaking, I don't think God says anything to us directly, at least for the most part. I imagine a being with infinite wisdom and infinite ability to help but not infinite need for us to understand as much as we would like, for maybe we don't really know what help is in every case. Our "agenda" as humans generally is not a divine one, is it?
Obviously, we pray a lot. We also know that many people are praying for us every day and we are thankful for them (a.k.a you) and for those prayers. It is one of the most powerful things that anyone can do. To me, it is not important if they are praying to God based on Catholic, Protestant, Hebrew, Muslim or any other religious view. In my belief system, there is only one God, and I believe that this God speaks many languages, listens to many faiths and answers prayers based, not on the content of the prayer or the faith from which it originated, but based on whether the prayer is said with a true heart and whether or not the prayer can fit with the plan that God has in his grand vision, a vision that we are neither privy to nor are we meant to understand.
I, for what it is worth, believe that if it is in any way possible in God's grand plan that he has heard our pleas and will make H better. I have faith that if she does not get better, that in some way, a way that can't seem just to me or anyone else that knows her fair heart, that somehow, God knows better than us all. That there is a reason for this that someday we will understand, that it in fact will be obvious to us someday. It is this faith that keeps me strong. I still pray every day for her health, for a cure, for a turn towards healing and strength, not only for us but for all that are afflicted.
My Aunt lost her purse this week. She has a very strong faith and prayed for its return. Sure enough, a couple of days later, it was returned to her intact. There's nothing wrong with praying for something like that. She didn't tell me the nature of her prayer, but I bet is wasn't "God, can you please get me my wallet back because it will be a royal pain in the keester to cancel all my credit cards and get a new drivers license." Had it been, I doubt she would have gotten it back.
I don't know if I'm praying the "right way" for H's return to health and strength. I hope that I am, and feel that I do it with a pure heart. I have heard also that you have to "give up" in order to let God take over and work his plan. But if you "give up" well what does that really mean? You will stop taking medication? You will stop trying new treatments that come along? So many things have come along to us that have been "false boats", or so they have seemed. Did she, or we, just have to believe in one of them? If we believed in the radioactive stone, the energy work, the antibiotics or the olive leaf extract, would they have been our helicopter or our boat? I don't know.
In the mean time, you are my ships and my helicopters and every time you stop by, I will get on your boat or take your ladder. Maybe you need another person to row too, or a wing man to spot others in need. I will share with you what I can, I will help you if I can too. To reach back to another post I made, My bucket is not dry and it never will be. I am thankful to help when I can and I am wishful that I could help more.
Give thanks and enjoy the good things in your life and by all means, live it my friends.
Live it with strength, live it with faith and live it without fear. Control is a myth, material winds up in a landfill and nothing matters but what you can take with you. And what is that? You know what it is.
I hope you felt that because it came at you with much force (and Love, of course.)
Peace.
B.
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