All, I received an interesting comment on my open letter to Mindy Goodin today.
You can follow this link to see the whole chain. I have already responded to the comment at the bottom of the thread.
Peace,
B.
http://alschronicle.blogspot.com/2009/03/ok-this-one-long-time-comingmindywhy.html?showComment=1249081426490#c6293309978613992262
update: looks like this link goes to the top of my response...scroll up to see the rest.
Friday, July 31, 2009
Tuesday, July 21, 2009
The Tempest
Last night there was a thunderstorm here at our house that was stronger than any I have ever seen (well, except maybe for one when I was offshore on a small boat in the Bahamas, but that is a different story.) The wind raged making the trees bend, shake and shiver unnaturally. The skies lit up in staccato flashes with unharnesable power squandering itself in the night sky. The rain came down in sheets, turning the streetlight across the Lane into an opaque glow, making the source of the light indiscernible a mere 30 yards away. The hail slammed sideways into the window, sounding like gunfire from a thousand random trigger pulls. As the storm raged outside, I wondered how much force it would take to break the window I was standing behind. I was not afraid that it would break, but I was curious. Fear seems to have left me.
I have had a night to think about that and as usual, I am drawing parallels, this time between the window and myself. How much will it take to break me? Who is standing behind me that I am charged to protect? Is this charge what keeps me strong or is it something inside me that has built up over time like most strength does under daily stress and repetitious exertion?
Bono wrote this: "Who's to say where the wind will take you? Who's to say what it is will break you? I don't know...where the wind will blow. Who's to know when the time has come around? Don't want to see you cry. I know that this is not... Goodbye." It's from Kite and is one of my favorite U2 songs. It might sound trite to quote a song by a popular rock band at a time like this, but the lyrics of a lot of U2 songs have touched me over the years.
Great mysteries are what these things are. Questions I can not answer for you or for myself. All I can do is try to stay strong every day, because if I am the window, I know who I am protecting, and the shield has to be strong. I have four girls who depend on me mightily now.
If I am the window, then maybe you can see the Tempest through me. The storm that rages out there on the other side of me is the storm that rages in my heart and is the same storm that ALS causes for so many families around the world. It is stronger and scarier than any thunderstorm because today it is certain that THIS storm will kill whomever it descends upon. It will take your strength, it will make you and all around you suffer for years, then it will kill you. It is a storm of pain that no Mother should bear or Father should suffer. No child should have to deal with this. No friend should have to see what it causes.
There has to be a cure out there and there has to be a person that has the knowledge to find it, the guts to make someone with the ability to bring it to market listen and the strength to keep trying when all before them have failed.
If I break, then I will have failed and I can not fail my girls, so I will not break. If I get knocked down, You will pick me up, You will remind me that I need to steel myself against the storm for their sake, and I will not break.
Allow me to clarify the metaphor. "You" are my family. "You" are my friends. In fact "You" are people that I don't even know that send us prayers and good thoughts. "You" are those that support ALS research and have hope for a cure, and "You"....are God. I thank all of you every day, whether you know it or not. It is not your responsibility, yet you take it on gladly and with Love. This is very very powerful to witness and I am humble before it. In fact, I now know that I will die unbroken someday, except before God and only if that is His will.
Peace.
B.
I have had a night to think about that and as usual, I am drawing parallels, this time between the window and myself. How much will it take to break me? Who is standing behind me that I am charged to protect? Is this charge what keeps me strong or is it something inside me that has built up over time like most strength does under daily stress and repetitious exertion?
Bono wrote this: "Who's to say where the wind will take you? Who's to say what it is will break you? I don't know...where the wind will blow. Who's to know when the time has come around? Don't want to see you cry. I know that this is not... Goodbye." It's from Kite and is one of my favorite U2 songs. It might sound trite to quote a song by a popular rock band at a time like this, but the lyrics of a lot of U2 songs have touched me over the years.
Great mysteries are what these things are. Questions I can not answer for you or for myself. All I can do is try to stay strong every day, because if I am the window, I know who I am protecting, and the shield has to be strong. I have four girls who depend on me mightily now.
If I am the window, then maybe you can see the Tempest through me. The storm that rages out there on the other side of me is the storm that rages in my heart and is the same storm that ALS causes for so many families around the world. It is stronger and scarier than any thunderstorm because today it is certain that THIS storm will kill whomever it descends upon. It will take your strength, it will make you and all around you suffer for years, then it will kill you. It is a storm of pain that no Mother should bear or Father should suffer. No child should have to deal with this. No friend should have to see what it causes.
There has to be a cure out there and there has to be a person that has the knowledge to find it, the guts to make someone with the ability to bring it to market listen and the strength to keep trying when all before them have failed.
If I break, then I will have failed and I can not fail my girls, so I will not break. If I get knocked down, You will pick me up, You will remind me that I need to steel myself against the storm for their sake, and I will not break.
Allow me to clarify the metaphor. "You" are my family. "You" are my friends. In fact "You" are people that I don't even know that send us prayers and good thoughts. "You" are those that support ALS research and have hope for a cure, and "You"....are God. I thank all of you every day, whether you know it or not. It is not your responsibility, yet you take it on gladly and with Love. This is very very powerful to witness and I am humble before it. In fact, I now know that I will die unbroken someday, except before God and only if that is His will.
Peace.
B.
Thursday, July 16, 2009
Through the eyes of others...
Following up my post of a couple of weeks ago, I was amazed how much positive feedback I got and was very happy that my words touched a lot of people. A lot of my feedback comes via FB, so most can't see it on the blog.
You probably know this, but I write because I feel things and it helps me to get them out there. It's a little bit selfish, actually. I certainly don't write for admiration and the fact that anyone, much less lots of people, are touched and helped by my words is very uplifting for me. That being said, I thank you for the feedback because it encourages me to continue as I battle for our family and against my own personal issues every day.
In particular, one of my friends wrote to me with a note about my "Through the eyes of others" post (http://alschronicle.blogspot.com/2009/06/where-we-are-atand-bit-of-my-philosophy.html), even though I don't think I titled it that way, suggesting that I should add another angle to my list... with his permission I am posting the "conversation" here.
I believe that the truth exposed in his words is as powerful as anything I have ever written.
The conversation consists of his initial message to my post, my response and then his very powerful follow up culminating in the truth I am referring to...wait for it, but it's worth it... Peace...and enjoy.
B
=====
His post:
=====
Bill, Regarding this quote from your blog:"We can try to look at ourselves through the eyes of our parents and our children and hope that we would see a vision of reflection or emulation that brings positive feelings of pride or aspiration and above all Love." This is something I've done a lot lately and it has helped prevent me from going down a dark path. Wise words.
One more thing to add to the list is to look at ourselves in comparison to others whom we admire (maybe you can think of a cool metaphor for that one, like a mirror or something). You are someone whom I admire, and seeing how you care for H (which reminds me of how my dad cared for my mom when she had cancer), and how you are handling the cards you are dealt, is an inspiration to me.
=====
My Response:
=====
Thanks Brother, I guess I look more towards God and try to do what He would expect, vs. comparing myself to others, but there are many good people from which we should not only learn, but also aspire to be more like. With us humans, you have to try to emulate the good and forgive and/or ignore the bad, because inevitably, the bad will be there in some form.
It's why I wish kids would not emulate [the idiot] pro-athletes or put [certain jackass] rock/rap-stars up on pedestals. It accentuates the "need" for money and the free pass to indulgent lifestyle. Don't get me wrong, I'm all for indulging once in a while, but there seems to be an air of entitlement or aspiration to live that lifestyle without regard for more important personal and spiritual matters. ah...just rambling now...take care. Sedg
=====
His Follow up:
=====
Dude,You are so right. I can't say it any better. We have to look to God and can't expect perfection from fellow humans. But it is inspiring when humans do extraordinary things. That encourages us to believe that we can do it too. Which is why it's important for us to reflect God to those who are looking at us (which is my paraphrase of what I think you were saying in your blog, and which is what I think you are doing for the many people who admire you).
Some say that Jesus set the example of how we can reflect God's love. That we can endure the suffering that is required to love others. That's something many people don't get.. that love requires effort and suffering. But the effort is worth it - it is repayed with joy. Maybe it's similar to anything else we suffer to achieve, such as training for a race or studying for a test or whatever. Sometimes it's obvious (the connection from suffering to joy), and sometimes it's a mystery that requires faith. I think I'm saying this to encourage myself, because right now I'm hurting a lot. It's so hard to let go... And I hope in some small way it helps you too, because I know your suffering is immense. And I believe your joy will be INCREDIBLE!
When I explained to a friend how hard it would be to let go of the relationship - that it would be tremendous pain to me - he said "what will it cost you to suffer that in order to protect all that is dear to you [my family]. Jesus suffered for you partly to show you that you can do it too". That blew me away. I never thought of the crucifixion that way before.
Looking forward to telling stories over beers some day! Sending my love and admiration to you, H and your three beautiful girls. You all are inspiration to me.
======= END CONVERSATION=====
Ah...incredible. Let me say it again..."Jesus suffered partly to show you that you can do it too."
I breathe that in a hundred times every day, sometimes consciously and sometimes sub-consciously. I think about the others that might know it and therefore persevere through whatever they might be going through and hope that they do...or will.
Peace,
B.
You probably know this, but I write because I feel things and it helps me to get them out there. It's a little bit selfish, actually. I certainly don't write for admiration and the fact that anyone, much less lots of people, are touched and helped by my words is very uplifting for me. That being said, I thank you for the feedback because it encourages me to continue as I battle for our family and against my own personal issues every day.
In particular, one of my friends wrote to me with a note about my "Through the eyes of others" post (http://alschronicle.blogspot.com/2009/06/where-we-are-atand-bit-of-my-philosophy.html), even though I don't think I titled it that way, suggesting that I should add another angle to my list... with his permission I am posting the "conversation" here.
I believe that the truth exposed in his words is as powerful as anything I have ever written.
The conversation consists of his initial message to my post, my response and then his very powerful follow up culminating in the truth I am referring to...wait for it, but it's worth it... Peace...and enjoy.
B
=====
His post:
=====
Bill, Regarding this quote from your blog:"We can try to look at ourselves through the eyes of our parents and our children and hope that we would see a vision of reflection or emulation that brings positive feelings of pride or aspiration and above all Love." This is something I've done a lot lately and it has helped prevent me from going down a dark path. Wise words.
One more thing to add to the list is to look at ourselves in comparison to others whom we admire (maybe you can think of a cool metaphor for that one, like a mirror or something). You are someone whom I admire, and seeing how you care for H (which reminds me of how my dad cared for my mom when she had cancer), and how you are handling the cards you are dealt, is an inspiration to me.
=====
My Response:
=====
Thanks Brother, I guess I look more towards God and try to do what He would expect, vs. comparing myself to others, but there are many good people from which we should not only learn, but also aspire to be more like. With us humans, you have to try to emulate the good and forgive and/or ignore the bad, because inevitably, the bad will be there in some form.
It's why I wish kids would not emulate [the idiot] pro-athletes or put [certain jackass] rock/rap-stars up on pedestals. It accentuates the "need" for money and the free pass to indulgent lifestyle. Don't get me wrong, I'm all for indulging once in a while, but there seems to be an air of entitlement or aspiration to live that lifestyle without regard for more important personal and spiritual matters. ah...just rambling now...take care. Sedg
=====
His Follow up:
=====
Dude,You are so right. I can't say it any better. We have to look to God and can't expect perfection from fellow humans. But it is inspiring when humans do extraordinary things. That encourages us to believe that we can do it too. Which is why it's important for us to reflect God to those who are looking at us (which is my paraphrase of what I think you were saying in your blog, and which is what I think you are doing for the many people who admire you).
Some say that Jesus set the example of how we can reflect God's love. That we can endure the suffering that is required to love others. That's something many people don't get.. that love requires effort and suffering. But the effort is worth it - it is repayed with joy. Maybe it's similar to anything else we suffer to achieve, such as training for a race or studying for a test or whatever. Sometimes it's obvious (the connection from suffering to joy), and sometimes it's a mystery that requires faith. I think I'm saying this to encourage myself, because right now I'm hurting a lot. It's so hard to let go... And I hope in some small way it helps you too, because I know your suffering is immense. And I believe your joy will be INCREDIBLE!
When I explained to a friend how hard it would be to let go of the relationship - that it would be tremendous pain to me - he said "what will it cost you to suffer that in order to protect all that is dear to you [my family]. Jesus suffered for you partly to show you that you can do it too". That blew me away. I never thought of the crucifixion that way before.
Looking forward to telling stories over beers some day! Sending my love and admiration to you, H and your three beautiful girls. You all are inspiration to me.
======= END CONVERSATION=====
Ah...incredible. Let me say it again..."Jesus suffered partly to show you that you can do it too."
I breathe that in a hundred times every day, sometimes consciously and sometimes sub-consciously. I think about the others that might know it and therefore persevere through whatever they might be going through and hope that they do...or will.
Peace,
B.
Monday, July 13, 2009
It's been a couple of weeks!
I have been reminded by several friends that I have not been updating the blog as much lately, and that is very true. My last post was two weeks ago, though it certainly does not seem like that long. I have been extremely busy holding down the home fort and working, not to mention having the kids out on their summer break and needing to "entertain them." Time has been flying by through this cool, wet and green Colorado summer. Rare has been the day that an afternoon could be enjoyed at the pool. Window viewing of lightening shows has been our more common routine.
Our big news is that H was received into the Catholic church on Friday last week in a beautiful ceremony here at our house. Father John from St. Mark here in Highlands Ranch and his whole team have been so great to Heidi and our family. Accommodating a Mass here at our house for H to proclaim her faith was just amazing and a rare opportunity indeed. It is something she has wanted to pursue for a very long time and I am very proud of her for following through with this spiritual dream of hers. They even brought over a choir of 6 with guitars and a flute to add to the celebration. Some cake and Champagne followed and it was just a very special evening with family and a few friends. Even in her physical weakness, she was strong and continues to set such an amazing example for our girls as she battles for her life every day.
I know many of you are worried about her condition, so here is a brief update. She is very weak, but mostly in good spirits. We don't count things that she can't do anymore and the things that she can do are our blessings...talking to us, smiling, expressing her love and thanks, still being able to chew and swallow...how fortunate we are compared to many with this dreadful sickness. Some times are harder than others, but she seems to come through the down cycles and can smile and laugh about many things.
The girls remain happy and are enjoying their summer. They are aware of what is going on and seem to be able to compartmentalize it to moments of sadness that can be recovered from quickly. I am continually amazed at their resilience. Just three weeks left and then it's back to school...3rd, 5th and 6th graders! Unbelievable!
The Hospice people have been engaged, but not overly so, which is what we want. H's nurse is very sweet and has been helpful with medications and other supplies. She is a good listener and has addressed several of H's concerns in a very compassionate way. We have also seen a social worker and a pastor, but have not felt a lot of need for them to spend time with us as of yet, and definitely would want them to be with people that need them more right now than us. They have medications and equipment delivered to the house, which has been a welcome respite for me, not having to stand in line at the Safeway Pharmacy forever waiting for someone's problem to be fixed. Sometimes it's like watching the Keystone Cops over there, but I'm sure it's very complicated...
Peace, out for now.
B.
Our big news is that H was received into the Catholic church on Friday last week in a beautiful ceremony here at our house. Father John from St. Mark here in Highlands Ranch and his whole team have been so great to Heidi and our family. Accommodating a Mass here at our house for H to proclaim her faith was just amazing and a rare opportunity indeed. It is something she has wanted to pursue for a very long time and I am very proud of her for following through with this spiritual dream of hers. They even brought over a choir of 6 with guitars and a flute to add to the celebration. Some cake and Champagne followed and it was just a very special evening with family and a few friends. Even in her physical weakness, she was strong and continues to set such an amazing example for our girls as she battles for her life every day.
I know many of you are worried about her condition, so here is a brief update. She is very weak, but mostly in good spirits. We don't count things that she can't do anymore and the things that she can do are our blessings...talking to us, smiling, expressing her love and thanks, still being able to chew and swallow...how fortunate we are compared to many with this dreadful sickness. Some times are harder than others, but she seems to come through the down cycles and can smile and laugh about many things.
The girls remain happy and are enjoying their summer. They are aware of what is going on and seem to be able to compartmentalize it to moments of sadness that can be recovered from quickly. I am continually amazed at their resilience. Just three weeks left and then it's back to school...3rd, 5th and 6th graders! Unbelievable!
The Hospice people have been engaged, but not overly so, which is what we want. H's nurse is very sweet and has been helpful with medications and other supplies. She is a good listener and has addressed several of H's concerns in a very compassionate way. We have also seen a social worker and a pastor, but have not felt a lot of need for them to spend time with us as of yet, and definitely would want them to be with people that need them more right now than us. They have medications and equipment delivered to the house, which has been a welcome respite for me, not having to stand in line at the Safeway Pharmacy forever waiting for someone's problem to be fixed. Sometimes it's like watching the Keystone Cops over there, but I'm sure it's very complicated...
Peace, out for now.
B.
Saturday, June 27, 2009
A couple of fun stats to lighten things up a bit...
From my Google Analytics account...
The blog has now been read by people in 31 countries.
Interestingly, the average time reading overall is about 2.5 minutes, but in Argentina and Yemen, the average time is 21+ minutes.
Yea boyeeee....a shout out to all my Homies in Yemen and Argentina. :-)
Top Five Countries:
1) USA (by far the largest)
2) UK
3) Canada
4) Australia
5) Greece
The only one that really surprised me out of that list was Greece. Germany came in 6th.
For all you techies out there: Blackberry beat Chrome 8:1; Firefox beat Safari 2:1 and IE beat Firefox 2.3:1
Peace,
B
The blog has now been read by people in 31 countries.
Interestingly, the average time reading overall is about 2.5 minutes, but in Argentina and Yemen, the average time is 21+ minutes.
Yea boyeeee....a shout out to all my Homies in Yemen and Argentina. :-)
Top Five Countries:
1) USA (by far the largest)
2) UK
3) Canada
4) Australia
5) Greece
The only one that really surprised me out of that list was Greece. Germany came in 6th.
For all you techies out there: Blackberry beat Chrome 8:1; Firefox beat Safari 2:1 and IE beat Firefox 2.3:1
Peace,
B
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