I often wonder if putting all of this personal stuff out there is "worth it" because it is hard to expose these things when anonymity is forfeited. I do this with the hope of allowing a more personal connection to the story and therefore a potentially bigger voice for awareness and ultimately the finding of a cure.
When I receive comments, like the one I received on last night's shower of rawness, It makes it worth it. 100%.
Thank you so much, whoever you are.
B.
Monday, March 9, 2009
PS to Top Ten List:
I know I stopped at 9, but after "GOD" I could not go any deeper.
That one took it out of me...
That one took it out of me...
Sunday, March 8, 2009
Sanity's Top Ten List:
So many people ask me how I keep it, so here's my answer:
I'll start by saying that my sanity is a challenge, but pales by comparison to the challenges to sanity that H has. I am only the one helping, I'm not the one that can't do.
So, sanity from my perspective is what this is about. I'll do this in the "top 10" format like seems to be so popular these days. I write off the top of my head..so the deeper things generally come later in my musings. The following list is not in "order of importance" rather in the order that they come to my mind, which as you probably know, is not an "orderly place." I hope upon reading this that you can see why I am still sane. At least why I think I am. You may think I'm crazy to put this out there, but I have to. I hope you understand...
1: Heidi: She's hanging in there like a champion. On the days that I am feeling down or weakened, she cheers me up. She instinctively knows when I am at the end of my rope and has a knack for having the right amount of compassion when I need it, even though she's the one that is really hurting. I don't know how she does this, but it inspires me every day and gives me the strength to carry on.
2: My Girls: They rock on. No matter what is going on, they go about their day to day lives and just have an exuberance of youthful existence that touches me in a way that is amazing. They sort of live "a day ago and a couple of weeks ahead" as a wise friend of mine recently said. It is a gift, and they are a gift to me.
3: John; My business partner keeps things sane at work. This is obviously huge to me. We have our struggles related to the economic downturn, but have been able to keep business flowing enough to make things work. Not only has he been supportive on the work front, but also on the personal front, which means a lot. My day to day role in the business has not changed much and the most important aspects of what I do including client recruitment and support don't suffer, but time consuming things realted to operations of the business, finance, etc. have been in many ways taken over for me, so that's a massive relief. I can apply my efforts to bigger issues within our business on a global level, which is very important for our future.
4: The rest of the crew at T-bolt, our vendors and our clients. Everyone has stepped up on some level. It has been almost three years since we were handed this bag of doo doo and everyone has been very understanding and supportive. I don't expect our customers to accept or settle for a lower level of service because of it, and I don't think that they have, but things like my personal travel, and in-person meetings have been somewhat restricted. No one has questioned my commitment to the business and every day I feel a responsibility to do the best I can to help everyone in my business life make money. At a core level, that is what business is for. It also happens to have the power to find and foster meaningful personal relationships and deliver life experiences that transcend the material 'value' associated with them. This is what makes business worthwhile to me now. It has not always been so, but it is now. I have always strived to be fair in my business practices, both internally and externally, and this philosophy breeds healthy crops.
5; Nautilus and Paladia: I don't know how many of you have Comcast but there is a channel on HD called Paladia that has concerts, music videos and special music related events that I record every day. I recently have spent an hour or two with the following bands: The Foo Fighters, The Fray, Bruce Springsteen, U2, Sheryl Crow, The Counting Crows, Tom Petty & the Heartbreakers, Oasis, Eric Clapton, The Dave Matthews Band, John Mayer, a bunch of English bands at the "Isle of Weight" festival that I never heard of, but rocked. Oh, and Green Day too. Nautilus refers to my elliptical machine, which I bought in December and have been pounding out miles on since about 12/15. I have no idea how many miles I've run on the thing, but between it and the awesome ability to watch HD music, run, sweat and rock out to awesome music I have become addicted to something productive for myself when so many things would point me in a different direction.
6: U2: It might sound odd or trite in the face of this battle we are fighting that I would include a band in my "saviors of sanity" list, but I have been a fan for about 25 years, and have been inspired by their music, their lyrics and their commitment to help people for almost as long. Some of my finest memories are attached to live concerts of theirs I have experienced in person. Although I don't have any personal experiences with the members of the band, I have intensely personal experiences related to attending their shows, and listening to their music, which I'm sure many do. Some great stories to share with you over a couple of beers at a good Irish Pub when we get a chance..so let me know when!
7: Our Friends: There is massive power in the ability of people that you have a mutual caring relationship with to provide power, sustenance, soul food and strength at any given time. I care so much for my friends. There are so many people in this world that I would die for. Pretty much anyone out there that counts themselves as my friend can count themselves in this club. I view life very much as a journey of experiences marked only by the imprint that you can leave on someones heart. My hope and goal every day is to leave a positive mark everywhere I interact. I know I don't succeed in every circumstance, but I am human. Friends are the family you choose for yourself, and those that choose you. There is massive power in this. In this vein, it is hard for both H and I to accept all the help that we have been given and continue to get from our friends. We want to be the ones helping others. We struggled with this for a long time, but acknowledge our need, which as strong humans, is hard to do. We thank you all from the bottom of our hearts for all the assistance you have offered us out of friendship.
8: Our Family: Like I said, this is no particular order. To try and put one above the other would be an effort in futility and unfair to all. We have, by any account a HUGE family. Both H's parents and mine are divorces and remarried. So, the girls still have 8 living grandparents. Every one of them loves us all and contributes what they can to our situation. We have had some bad luck recently with health issues when they have come to visit, but we know that they are there to support us at the most awesome levels as much as they can. Most might think that this is an "obligation" and should be counted on, but I hear so many stories of abandonment or dis-association of families when a loved one is diagnosed with ALS that it is disturbing. A huge problem with this disease is that right now, there is no cure, there is no treatment, there really is no "light at the end of the tunnel." I think this fact quickly separates the wheat from the chaff in family situations and we have been fortunate to have support across the board. The extended family frequently helps out and sends love and support and this is all awesome. Every card, email, letter, phone call, etc. means something to us (this goes for friends too.) We can't and don't get back to everyone and hope you know that your love is not unappreciated or taken for granted. Heidi can't answer emails or phone calls most of the time and I can't respond to a shameful percentage of the communications I receive. Please know that we appreciate everything. It's hard to separate family from friends in a lot of ways on both sides, so alot of what I write about each refers, also, to the other.
9: God: I write a lot about the boundless and infinite well of love that is available to all of us. This well, to me, is God. I pray every day for God to show us the path. I thank him (for lack of a better pronoun) for the blessings he has bestowed upon our family. I pray for the strength to overcome this unfathomable pain and suffering we bear. I won't delve into the depths of my spiritual beliefs, but know this: I believe that there is one God. I believe that God is the same entity across many religious boundaries and that through the Millenia that we humans have tried to explain this power in our own terms by manifesting it upon beautiful humans that have seen his light and tried to bring to others through the pursuit of peace and the proclamation of Love. I also believe that "man" has twisted spirituality to fit secular agendas in so many ways, the politics of which has separated so many of us and lead to immeasurable suffering, that it is hard to traipse faithfully down the path of any particular "religion." God, Allah, the Great Spirit, the Universal Power, the Truth. Real world applications: The Golden Rule, the Ten Commandments, Proverbs. These are some of the things that guide me. The Love that Jesus had inspires me, the sacrifice he made leaves me in awe, the fact that he could have risen up in violence to prove his point but didn't makes him authentic because it wasn't what he believed in. It's the dogmatic, inflexible, "my interpretation of God is the only one" stance that I can't relate to. OOPS, I wasn't going to delve into the depths of my spiritual beliefs, was I?
So, I've been listening to U2 tonight and found this appropriate and relevant, as I happen to much of their stuff actually, in one circumstance or another.
(From Kite)
"Something is about to give, I can feel it coming, I think I know what it Is. I'm not afraid to die. I'm not afraid to live. And when I'm Flat on my Back, I hope to feel like I did."
later...
"Who's to say where the wind will take you? Who's to say what it is will break you? I don't know... which way the wind will blow. Who's to know when the time will come around? Don't want to see you cry....I know that this is not good-bye."
I believe that all you can take with you is the love you have given and that that has been given to you. You don't receive love by doing the wrong thing, so don't. That pretty much sums it up for me.
Peace.
B.
I'll start by saying that my sanity is a challenge, but pales by comparison to the challenges to sanity that H has. I am only the one helping, I'm not the one that can't do.
So, sanity from my perspective is what this is about. I'll do this in the "top 10" format like seems to be so popular these days. I write off the top of my head..so the deeper things generally come later in my musings. The following list is not in "order of importance" rather in the order that they come to my mind, which as you probably know, is not an "orderly place." I hope upon reading this that you can see why I am still sane. At least why I think I am. You may think I'm crazy to put this out there, but I have to. I hope you understand...
1: Heidi: She's hanging in there like a champion. On the days that I am feeling down or weakened, she cheers me up. She instinctively knows when I am at the end of my rope and has a knack for having the right amount of compassion when I need it, even though she's the one that is really hurting. I don't know how she does this, but it inspires me every day and gives me the strength to carry on.
2: My Girls: They rock on. No matter what is going on, they go about their day to day lives and just have an exuberance of youthful existence that touches me in a way that is amazing. They sort of live "a day ago and a couple of weeks ahead" as a wise friend of mine recently said. It is a gift, and they are a gift to me.
3: John; My business partner keeps things sane at work. This is obviously huge to me. We have our struggles related to the economic downturn, but have been able to keep business flowing enough to make things work. Not only has he been supportive on the work front, but also on the personal front, which means a lot. My day to day role in the business has not changed much and the most important aspects of what I do including client recruitment and support don't suffer, but time consuming things realted to operations of the business, finance, etc. have been in many ways taken over for me, so that's a massive relief. I can apply my efforts to bigger issues within our business on a global level, which is very important for our future.
4: The rest of the crew at T-bolt, our vendors and our clients. Everyone has stepped up on some level. It has been almost three years since we were handed this bag of doo doo and everyone has been very understanding and supportive. I don't expect our customers to accept or settle for a lower level of service because of it, and I don't think that they have, but things like my personal travel, and in-person meetings have been somewhat restricted. No one has questioned my commitment to the business and every day I feel a responsibility to do the best I can to help everyone in my business life make money. At a core level, that is what business is for. It also happens to have the power to find and foster meaningful personal relationships and deliver life experiences that transcend the material 'value' associated with them. This is what makes business worthwhile to me now. It has not always been so, but it is now. I have always strived to be fair in my business practices, both internally and externally, and this philosophy breeds healthy crops.
5; Nautilus and Paladia: I don't know how many of you have Comcast but there is a channel on HD called Paladia that has concerts, music videos and special music related events that I record every day. I recently have spent an hour or two with the following bands: The Foo Fighters, The Fray, Bruce Springsteen, U2, Sheryl Crow, The Counting Crows, Tom Petty & the Heartbreakers, Oasis, Eric Clapton, The Dave Matthews Band, John Mayer, a bunch of English bands at the "Isle of Weight" festival that I never heard of, but rocked. Oh, and Green Day too. Nautilus refers to my elliptical machine, which I bought in December and have been pounding out miles on since about 12/15. I have no idea how many miles I've run on the thing, but between it and the awesome ability to watch HD music, run, sweat and rock out to awesome music I have become addicted to something productive for myself when so many things would point me in a different direction.
6: U2: It might sound odd or trite in the face of this battle we are fighting that I would include a band in my "saviors of sanity" list, but I have been a fan for about 25 years, and have been inspired by their music, their lyrics and their commitment to help people for almost as long. Some of my finest memories are attached to live concerts of theirs I have experienced in person. Although I don't have any personal experiences with the members of the band, I have intensely personal experiences related to attending their shows, and listening to their music, which I'm sure many do. Some great stories to share with you over a couple of beers at a good Irish Pub when we get a chance..so let me know when!
7: Our Friends: There is massive power in the ability of people that you have a mutual caring relationship with to provide power, sustenance, soul food and strength at any given time. I care so much for my friends. There are so many people in this world that I would die for. Pretty much anyone out there that counts themselves as my friend can count themselves in this club. I view life very much as a journey of experiences marked only by the imprint that you can leave on someones heart. My hope and goal every day is to leave a positive mark everywhere I interact. I know I don't succeed in every circumstance, but I am human. Friends are the family you choose for yourself, and those that choose you. There is massive power in this. In this vein, it is hard for both H and I to accept all the help that we have been given and continue to get from our friends. We want to be the ones helping others. We struggled with this for a long time, but acknowledge our need, which as strong humans, is hard to do. We thank you all from the bottom of our hearts for all the assistance you have offered us out of friendship.
8: Our Family: Like I said, this is no particular order. To try and put one above the other would be an effort in futility and unfair to all. We have, by any account a HUGE family. Both H's parents and mine are divorces and remarried. So, the girls still have 8 living grandparents. Every one of them loves us all and contributes what they can to our situation. We have had some bad luck recently with health issues when they have come to visit, but we know that they are there to support us at the most awesome levels as much as they can. Most might think that this is an "obligation" and should be counted on, but I hear so many stories of abandonment or dis-association of families when a loved one is diagnosed with ALS that it is disturbing. A huge problem with this disease is that right now, there is no cure, there is no treatment, there really is no "light at the end of the tunnel." I think this fact quickly separates the wheat from the chaff in family situations and we have been fortunate to have support across the board. The extended family frequently helps out and sends love and support and this is all awesome. Every card, email, letter, phone call, etc. means something to us (this goes for friends too.) We can't and don't get back to everyone and hope you know that your love is not unappreciated or taken for granted. Heidi can't answer emails or phone calls most of the time and I can't respond to a shameful percentage of the communications I receive. Please know that we appreciate everything. It's hard to separate family from friends in a lot of ways on both sides, so alot of what I write about each refers, also, to the other.
9: God: I write a lot about the boundless and infinite well of love that is available to all of us. This well, to me, is God. I pray every day for God to show us the path. I thank him (for lack of a better pronoun) for the blessings he has bestowed upon our family. I pray for the strength to overcome this unfathomable pain and suffering we bear. I won't delve into the depths of my spiritual beliefs, but know this: I believe that there is one God. I believe that God is the same entity across many religious boundaries and that through the Millenia that we humans have tried to explain this power in our own terms by manifesting it upon beautiful humans that have seen his light and tried to bring to others through the pursuit of peace and the proclamation of Love. I also believe that "man" has twisted spirituality to fit secular agendas in so many ways, the politics of which has separated so many of us and lead to immeasurable suffering, that it is hard to traipse faithfully down the path of any particular "religion." God, Allah, the Great Spirit, the Universal Power, the Truth. Real world applications: The Golden Rule, the Ten Commandments, Proverbs. These are some of the things that guide me. The Love that Jesus had inspires me, the sacrifice he made leaves me in awe, the fact that he could have risen up in violence to prove his point but didn't makes him authentic because it wasn't what he believed in. It's the dogmatic, inflexible, "my interpretation of God is the only one" stance that I can't relate to. OOPS, I wasn't going to delve into the depths of my spiritual beliefs, was I?
So, I've been listening to U2 tonight and found this appropriate and relevant, as I happen to much of their stuff actually, in one circumstance or another.
(From Kite)
"Something is about to give, I can feel it coming, I think I know what it Is. I'm not afraid to die. I'm not afraid to live. And when I'm Flat on my Back, I hope to feel like I did."
later...
"Who's to say where the wind will take you? Who's to say what it is will break you? I don't know... which way the wind will blow. Who's to know when the time will come around? Don't want to see you cry....I know that this is not good-bye."
I believe that all you can take with you is the love you have given and that that has been given to you. You don't receive love by doing the wrong thing, so don't. That pretty much sums it up for me.
Peace.
B.
Friday, March 6, 2009
Well, it's only been 4 days...
But is seems to me like an eternity since I've posted.
There have been several interesting things going on in the ALS community.
The most being the fact that the FDA has continued to stonewall all IND (Investigational New Drug) applications for IPLEX for all ALS patients. Other than the fact that it is a ridiculous government agency that has no heart, I really don't understand the rationale behind complete lack of human compassion and decency.
So do you know what an IND is? It is the authorization of a drug by the FDA on an individual basis in a "last ditch effort" to help someone that is suffering a diagnosis with no more alternatives as determined by their physician. It is an application that must be submitted by a licensed doctor with good reason and in the best interest of his patient.
Historically, the FDA only denies IND requests when they fear that the drug might kill the patient or cause significant harm. This, of course, is very ironic for ALS patients. Many have reminded the FDA that there is no treatment, there is no cure, and everyone dies from this disease eventually, most within 5 years after having been paralyzed for 60% of their post-diagnosis life.
I don't think that there is an ALS patient on the planet that would prefer to die from ALS than take their chances with some sort of possible, undocumented, never reported reaction to a drug that is already approved by the very same agency for use in infants and small children with short stature syndrome.
What is the agenda of this agency? Why do they prevent people from trying this drug? These are people who would most certainly sign any kind of waiver of responsibility either to the FDA, their doctors or to the company that produces it. Why?
There were several theories circulating initially. One was that there was this "fear of deadly consequences" that loomed over the drug, which of course does not hold any water for ALS patients, who are already holding a death sentence decree much worse than any reaction to a drug might be.
A second one was that in some sense this group "The Bloggers" would use the information derived form its use to form unfounded conclusions as to it's efficacy and therefore....what...help the drug company sell more???? Please. Even the most ignorant political dinosaur should know that at this point the Web/Internet community is large enough and educated enough to sniff out blatant commercialization of almost anything. I personally am an Internet veteran with 15 years of experience and connections througout the technology, media, publishing, social media, and advertising communities. Nothing is going to get past me and my group of peers that are connected and discussing these issues every day. It would be a disaster for any drug company to try and pull this off.
I now believe that the latest, ridiculous conclusion is essentially "if we give IND's to everyone now requesting them, there will be no one left to do a double blind study to prove or disprove it's value in treating ALS patients." Does anyone NOT see the shocking irony here? Let me rephrase this (as I understand it) "Let's deny dieing people a drug that we have already deemed safe to give in large doses to infants, so we can actually give it to 1/2 of a control group and test whether or not it works for real."
Let me state an obvious fact: People are dieing of ALS every DAY. These people have been lieing motionless for months, if not years, with only their perfectly healthy minds and their caregivers to help them get through this. Some of them, as I've recently learned, are abused by those closest to them, and they are helpless to save themselves.
There is no time to wait around and see if this works. It is a new world, people can share information. Scientists should seek to leverage the worldwide communication platforms that exist now rather than fear them. Please don't let academic arrogance kill people in the name of good science. Figure out how you can distribute this drug and others to a wider group, figure out how you can gather control data without being sadistic to people that are already suffering an unfathomable pain. Stand up and honor your vows of compassion and those "to do no harm."
And if you are an official that has not had to take those vows, or a drug company executive seeking profit or power, rethink your pathetic stance and have some compassion for the thousands of people and their families suffering from this horrible disease. Think about my post of last week. You, Mr. High and Mighty official, YOU could wake up tomorrow and not be able to turn your ignition or button that last button on your shirt. You, my friend, will then wish you had not been such a complete arrogant jerkoff.
My friends tell me "you catch more..(what...jerks?) with honey than you do with vinegar", so let me rephrase that last statement. Just forget for a second that I called you an arrogant jerkoff... "Please look past yourself to the pain of others and let people that need to try this drug try it." You have nothing to lose, if it works, you are a hero, if it doesn't then so be it. Our situation will not be harmed. You will have given us hope for at least some small period of time. A gift of hope. I have already bought this gift many times without efficacy AND without remorse or demand for compensation.
If you read my blog, you know i'm not, generally, an angry person. This situation really pisses me off though, and I apologize, once again, if I offended you.
B.
PS, believe me, Jerkoff was NOT my first choice of words. I've become a bit more judicious in my choice of words, really only so this post might appeal to a wider range of email filters.
PSS, will someone please forward this to the human being that keeps stamping "REJECTED" on all the IND's for IPLEX that come across his desk? I would welcome his response to this blog at any time.
There have been several interesting things going on in the ALS community.
The most being the fact that the FDA has continued to stonewall all IND (Investigational New Drug) applications for IPLEX for all ALS patients. Other than the fact that it is a ridiculous government agency that has no heart, I really don't understand the rationale behind complete lack of human compassion and decency.
So do you know what an IND is? It is the authorization of a drug by the FDA on an individual basis in a "last ditch effort" to help someone that is suffering a diagnosis with no more alternatives as determined by their physician. It is an application that must be submitted by a licensed doctor with good reason and in the best interest of his patient.
Historically, the FDA only denies IND requests when they fear that the drug might kill the patient or cause significant harm. This, of course, is very ironic for ALS patients. Many have reminded the FDA that there is no treatment, there is no cure, and everyone dies from this disease eventually, most within 5 years after having been paralyzed for 60% of their post-diagnosis life.
I don't think that there is an ALS patient on the planet that would prefer to die from ALS than take their chances with some sort of possible, undocumented, never reported reaction to a drug that is already approved by the very same agency for use in infants and small children with short stature syndrome.
What is the agenda of this agency? Why do they prevent people from trying this drug? These are people who would most certainly sign any kind of waiver of responsibility either to the FDA, their doctors or to the company that produces it. Why?
There were several theories circulating initially. One was that there was this "fear of deadly consequences" that loomed over the drug, which of course does not hold any water for ALS patients, who are already holding a death sentence decree much worse than any reaction to a drug might be.
A second one was that in some sense this group "The Bloggers" would use the information derived form its use to form unfounded conclusions as to it's efficacy and therefore....what...help the drug company sell more???? Please. Even the most ignorant political dinosaur should know that at this point the Web/Internet community is large enough and educated enough to sniff out blatant commercialization of almost anything. I personally am an Internet veteran with 15 years of experience and connections througout the technology, media, publishing, social media, and advertising communities. Nothing is going to get past me and my group of peers that are connected and discussing these issues every day. It would be a disaster for any drug company to try and pull this off.
I now believe that the latest, ridiculous conclusion is essentially "if we give IND's to everyone now requesting them, there will be no one left to do a double blind study to prove or disprove it's value in treating ALS patients." Does anyone NOT see the shocking irony here? Let me rephrase this (as I understand it) "Let's deny dieing people a drug that we have already deemed safe to give in large doses to infants, so we can actually give it to 1/2 of a control group and test whether or not it works for real."
Let me state an obvious fact: People are dieing of ALS every DAY. These people have been lieing motionless for months, if not years, with only their perfectly healthy minds and their caregivers to help them get through this. Some of them, as I've recently learned, are abused by those closest to them, and they are helpless to save themselves.
There is no time to wait around and see if this works. It is a new world, people can share information. Scientists should seek to leverage the worldwide communication platforms that exist now rather than fear them. Please don't let academic arrogance kill people in the name of good science. Figure out how you can distribute this drug and others to a wider group, figure out how you can gather control data without being sadistic to people that are already suffering an unfathomable pain. Stand up and honor your vows of compassion and those "to do no harm."
And if you are an official that has not had to take those vows, or a drug company executive seeking profit or power, rethink your pathetic stance and have some compassion for the thousands of people and their families suffering from this horrible disease. Think about my post of last week. You, Mr. High and Mighty official, YOU could wake up tomorrow and not be able to turn your ignition or button that last button on your shirt. You, my friend, will then wish you had not been such a complete arrogant jerkoff.
My friends tell me "you catch more..(what...jerks?) with honey than you do with vinegar", so let me rephrase that last statement. Just forget for a second that I called you an arrogant jerkoff... "Please look past yourself to the pain of others and let people that need to try this drug try it." You have nothing to lose, if it works, you are a hero, if it doesn't then so be it. Our situation will not be harmed. You will have given us hope for at least some small period of time. A gift of hope. I have already bought this gift many times without efficacy AND without remorse or demand for compensation.
If you read my blog, you know i'm not, generally, an angry person. This situation really pisses me off though, and I apologize, once again, if I offended you.
B.
PS, believe me, Jerkoff was NOT my first choice of words. I've become a bit more judicious in my choice of words, really only so this post might appeal to a wider range of email filters.
PSS, will someone please forward this to the human being that keeps stamping "REJECTED" on all the IND's for IPLEX that come across his desk? I would welcome his response to this blog at any time.
Monday, March 2, 2009
The book I mentioned
Hi all,
Well, I have not been posting much over the last few days, as the time I have had, which has not been all that much, has been spent writing chapters in the book that I am working on.
So, I have had some trepidation in bringing it up here, but I have come up with a name for it and I have created a simple web site that discusses what it will be. In fact, though I have no idea whether normally a book's title precedes the book itself, it did in my case.
As far as progress is concerned, I have written about half as many words in the book as I have in this blog so far: about 9000. The funny thing is that in this story of ours, after that many words, we are only approaching our wedding, so roughly two out of 17 years. If you have been reading the blog and know how much content is here, then you realize that this might be a LONG book. I decided to tell about our life together and even a bit before we met, to help readers understand the context of where I was coming from when we met.
Heidi always says I was "homeless" when we met, which makes for a funny story, and is true in a way. I was not homeless in the sense that I was living under a cardboard box somewhere, but I didn't have a place to call my own because I had recently moved out from living with someone and had not found a roommate or a place of my own yet. I was bouncing between the apartments of some of my beach volleyball buddies and that was good enough for me for then. Anyways, I'll leave the rest for the story.
I do want to tell you the name of the book and explain it. The book will be called "My Finder's Keeper." The name came to me in a dream one night, or at least I woke up with it in my head In so many ways, H is my Finder. I have always been a wandering spirit in many ways and was somewhat lost when we met. My direction in life was set when she found me. That doesn't mean that I knew what I would "be" in that moment but just that I had found a purpose when she found me. We have been defining that purpose ever since, yet the definition is not finished and the story is not over...
As our life together has progressed, we have gone through so many stages of relative care and contribution to our relationship, but the bottom line is that now, I am her Keeper. It is my job, 100% to take care of her. She would not have it this way in a million years if she had a choice. In fact, she would be taking care of other people...our daughters, me, our friends, anyone that asked, really. It hurts her to not be able to do that, and to be the one that needs to be cared for. It is shockingly the opposite of perfect.
It also took me a while to understand that this was fully my responsibility. It is. There is so much help that we have, but no one can do what I do, nobody can replace who I am in this house, and I have to make sure everything is taken care of. This is very poignant and heavy for me. It is awesome in both the best and the worst of ways. When you are a father, you already understand what it means to have someone depend on you 100%, so I get that. When you are a husband, you don't really expect to be the one that is 100% responsible for the well being and care of your wife. It is a shocker when it hits you.
But it is OK. As I've said before, the bucket never comes up empty when you drop it in the well with a wish for love. And Strength. Did I mention strength before? Do you know what the well is?
Anyhow, I'm very excited about writing. I have no idea how long it will take me, or how much detail I will put in the book. For now, I'm putting in as much as comes to me. The stories, even after 15 years or so are fresh in my mind, the details take on a life of their own as my fingers flow across the keyboard. Right now, I'm wondering if I can really publish everything I have even written so far.
As I mentioned, I've created a web site about the book here: http://www.myfinderskeeper.com
It's a simple site, but it's a start.
Did anyone see Airplane? There was this ridiculous scene where they were trying to get a heart to the Mayo Clinic and it was beating by itself all alone in an ice chest and then it starts bouncing around the Dr's office. Right now, my heart feels like the one beating in the ice chest all alone, but I put it out there for Heidi, for my girls, and for you.
Peace.
B.
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