Yesterday, one of my buddies alerted me to a piece on Fox. Nancy O'Dell's Mom, Betty, passed away from ALS in June of 2008, and Nancy is doing what she can to promote awareness and raise money for MDA and research. Her site is here: http://bettysbattle.org. You can find out more about events and happenings that she has planned on the site.
Nancy is Co-Anchor of Access Hollywood. Here's a link to the piece on Fox from yesterday.
http://www.foxnews.com/search-results/m/25971853/betty-s-battle.htm#q=als
Peace,
B.
Friday, August 21, 2009
Tuesday, August 18, 2009
The Serial Killer
I had a dream the other night that was very frightening. I don't usually have nightmares, and the dreams that I do remember are generally just sort of strange and confusing. Normally, if I have a nightmare, I usually wind up kicking the ass of whatever was scaring me in the dream and emerge triumphant over the evil that was my nemesis in it. This has been the case for most of my life and therefore, I generally wake up from dreams feeling more a sense of relief and power than dread.
This was not the case the other night. I had a very realistic dream that involved a full on serial killer with a very sharp knife and a very bad attitude. There was a garage with a doggy door that was large enough for him to get through and I knew who he was and I knew that he was coming. I stood there in the door with one of my daughters as I watched him struggle through and emerge into the garage with his knife flashing. My daughter was scared, but I wasn't. I said "watch this" and the next thing you know, a bolt of lightening or something literally vaporized this serial killer into a bunch of ribbons and rainbows in a Disneylike cascade of shimmering gold sparks.
Normally, this would be the end of my dream. But it wasn't. The thing that woke me up in horror was that almost immediately after the light show was over, the doggy door flapped and the head of the serial killer popped through it again. This time with a really pissed off look on his face and my confidence had gone. This was the moment I woke up and the horror on his face, a foreshadowing of the horror he would reap on my family, was the horror I felt when I woke up.
As I lay there in that state of carnal fear, my heart racing, my muscles tense with anxiety, I began to realize that I was not in immediate danger of being sliced to ribbons by a knife wielding killer, but that the face of horror that I saw was the face of ALS and that it's recurrence was the manifestation of the fact that there is nothing that I or anyone can do to help my family, or any of the families that are suffering through this insufferable evil.
ALS is the perfect serial killer. We know it is out there. It gets some publicity. It leaves nothing for the "cops" (i.e. Dr's) to work with in terms of evidence. It strikes without warning. It causes immense fear and suffering before it's work is done. There is no way to stop it. There is no way to even cause its delay. It is the face of fear and all of us should fear it.
This is a villain who's ass I cannot kick. In my heart I know that, and that is why I could not beat it in my dream. All I can do is count on God to give me strength, my friends to support us and the cause, and medical scientists to continue to work to find a cure that will do what I can't do myself...put the serial killer out of this world forever.
Its not a fun place to be as a man. Our job is to fix things, to bring prosperity and protection to the family. To guarantee the safety of those that count on us. This I cannot do.
To have no power over this is the worst thing I can imagine, except to have it. That suffering I have to leave to my beautiful wife, which is also completely and totally unconscionable.
I continue to be humbled by your thoughts, prayers and support. Thank you from the bottom of my heart. I am running on empty, but the strength that I get from you, my friends and family fills my tank every day to the point that keeps me going. These are the things that Rock so hard, that re-inforce my faith and help me believe that this is only the beginning for my family.
Feel my arms around you right now.
Thank you.
B.
This was not the case the other night. I had a very realistic dream that involved a full on serial killer with a very sharp knife and a very bad attitude. There was a garage with a doggy door that was large enough for him to get through and I knew who he was and I knew that he was coming. I stood there in the door with one of my daughters as I watched him struggle through and emerge into the garage with his knife flashing. My daughter was scared, but I wasn't. I said "watch this" and the next thing you know, a bolt of lightening or something literally vaporized this serial killer into a bunch of ribbons and rainbows in a Disneylike cascade of shimmering gold sparks.
Normally, this would be the end of my dream. But it wasn't. The thing that woke me up in horror was that almost immediately after the light show was over, the doggy door flapped and the head of the serial killer popped through it again. This time with a really pissed off look on his face and my confidence had gone. This was the moment I woke up and the horror on his face, a foreshadowing of the horror he would reap on my family, was the horror I felt when I woke up.
As I lay there in that state of carnal fear, my heart racing, my muscles tense with anxiety, I began to realize that I was not in immediate danger of being sliced to ribbons by a knife wielding killer, but that the face of horror that I saw was the face of ALS and that it's recurrence was the manifestation of the fact that there is nothing that I or anyone can do to help my family, or any of the families that are suffering through this insufferable evil.
ALS is the perfect serial killer. We know it is out there. It gets some publicity. It leaves nothing for the "cops" (i.e. Dr's) to work with in terms of evidence. It strikes without warning. It causes immense fear and suffering before it's work is done. There is no way to stop it. There is no way to even cause its delay. It is the face of fear and all of us should fear it.
This is a villain who's ass I cannot kick. In my heart I know that, and that is why I could not beat it in my dream. All I can do is count on God to give me strength, my friends to support us and the cause, and medical scientists to continue to work to find a cure that will do what I can't do myself...put the serial killer out of this world forever.
Its not a fun place to be as a man. Our job is to fix things, to bring prosperity and protection to the family. To guarantee the safety of those that count on us. This I cannot do.
To have no power over this is the worst thing I can imagine, except to have it. That suffering I have to leave to my beautiful wife, which is also completely and totally unconscionable.
I continue to be humbled by your thoughts, prayers and support. Thank you from the bottom of my heart. I am running on empty, but the strength that I get from you, my friends and family fills my tank every day to the point that keeps me going. These are the things that Rock so hard, that re-inforce my faith and help me believe that this is only the beginning for my family.
Feel my arms around you right now.
Thank you.
B.
Sunday, August 16, 2009
Fun Fundraising...
Just a quick update:
I'm going to match the first $300 in donations on this, so let's get 'em in!
For the record, I think Steve will feel the strength on his competition and will complete several minutes under what the experts say he should expect. Plus, I know Steve and he's a competitive dude. My guess: 10 hours, 21 Minutes.
Fun Fun Fun.
All,
One of my old friends from High School in Stuttgart Germany has created a fun idea for a fundraiser for ALS research. He's participating in his first full Ironman Triathlon on August 30th, and has decided to create a contest to guess his time and is going to give an IPod Nano to the closest time. All that is needed to participate in the fun is a donation to the "Hope for Heidi" page, which benefits ALS-TDI. He sent his note out to friends on Facebook, but I figured I'd re-post it here and see who else might want to participate.
Here is his original message, the link to donate is there, and if you would like to participate, donate and then post your time as a message to the blog here, on on the "Hope for Heidi" page with the amount of your donation. Note that the donations on that site do NOT update automatically, even if done via a credit card, so don't expect the little thermometer to move up right away.
All the best,
Bill
=======Begin Steve's Message=====
Hi gang. As most of you know, my/our friend Bill Sedgwick's wife Heidi has ALS -- a terminal condition for which there is currently no cure. It goes without saying that Bill, Heidi and the kids could use our help.
As you may also know, I'm racing Ironman Canada on August 30. And since completing an Ironman requires a tremendous amount Karma, I've created a fund raising contest that I call: "WIN AN IPOD NANO BY GUESSING STEVE'S IRONMAN CANADA FINISHING TIME". (Catchy huh?) It's simple. Here's how to play:
1. Right now, (or at the latest before August 29), make a donation, no matter how small or large at the following website:https://hopeforheidi.alscommunity.org/
2. Send an email to me at skukta@gmail.com and guess my finishing time for Ironman Canada (hours, minutes and seconds, i.e. 10:30:24 or whatever your guess is.)
3. If you are closest to guessing my finishing time, I will send you a new Ipod Nano. (Ties go to the person who made their donation earlier -- the "punish the slacker" rule, I call it.) Nothing else to it. Donate, guess, help a friend.
So that the contest is fair, here's some information to help you estimate my finishing time.
1. This year I have done five (5) Half-Ironman Events. My average finishing time was 5 hours 3 minutes.
2. Knowledgeable folks say that an Ironman is at least 2 times as hard as a half-Ironman PLUS 30 minutes -- if you're having a good race.
3. The Ironman Canada course appears to be average in difficulty.
4. The race cut-off time is 17 hours and 0 minutes. The race starts at 7:00 a.m. Pacific Time on Aug. 30.
You can watch the race and track me at http://www.ironmanlive.com/. Maybe you'll see me run through the tape at the time you predicted, holding a picture of the Sedgwicks.
Thanks everyone. Steve
====End Steve's Message=====
I'm going to match the first $300 in donations on this, so let's get 'em in!
For the record, I think Steve will feel the strength on his competition and will complete several minutes under what the experts say he should expect. Plus, I know Steve and he's a competitive dude. My guess: 10 hours, 21 Minutes.
Fun Fun Fun.
All,
One of my old friends from High School in Stuttgart Germany has created a fun idea for a fundraiser for ALS research. He's participating in his first full Ironman Triathlon on August 30th, and has decided to create a contest to guess his time and is going to give an IPod Nano to the closest time. All that is needed to participate in the fun is a donation to the "Hope for Heidi" page, which benefits ALS-TDI. He sent his note out to friends on Facebook, but I figured I'd re-post it here and see who else might want to participate.
Here is his original message, the link to donate is there, and if you would like to participate, donate and then post your time as a message to the blog here, on on the "Hope for Heidi" page with the amount of your donation. Note that the donations on that site do NOT update automatically, even if done via a credit card, so don't expect the little thermometer to move up right away.
All the best,
Bill
=======Begin Steve's Message=====
Hi gang. As most of you know, my/our friend Bill Sedgwick's wife Heidi has ALS -- a terminal condition for which there is currently no cure. It goes without saying that Bill, Heidi and the kids could use our help.
As you may also know, I'm racing Ironman Canada on August 30. And since completing an Ironman requires a tremendous amount Karma, I've created a fund raising contest that I call: "WIN AN IPOD NANO BY GUESSING STEVE'S IRONMAN CANADA FINISHING TIME". (Catchy huh?) It's simple. Here's how to play:
1. Right now, (or at the latest before August 29), make a donation, no matter how small or large at the following website:https://hopeforheidi.alscommunity.org/
2. Send an email to me at skukta@gmail.com and guess my finishing time for Ironman Canada (hours, minutes and seconds, i.e. 10:30:24 or whatever your guess is.)
3. If you are closest to guessing my finishing time, I will send you a new Ipod Nano. (Ties go to the person who made their donation earlier -- the "punish the slacker" rule, I call it.) Nothing else to it. Donate, guess, help a friend.
So that the contest is fair, here's some information to help you estimate my finishing time.
1. This year I have done five (5) Half-Ironman Events. My average finishing time was 5 hours 3 minutes.
2. Knowledgeable folks say that an Ironman is at least 2 times as hard as a half-Ironman PLUS 30 minutes -- if you're having a good race.
3. The Ironman Canada course appears to be average in difficulty.
4. The race cut-off time is 17 hours and 0 minutes. The race starts at 7:00 a.m. Pacific Time on Aug. 30.
You can watch the race and track me at http://www.ironmanlive.com/. Maybe you'll see me run through the tape at the time you predicted, holding a picture of the Sedgwicks.
Thanks everyone. Steve
====End Steve's Message=====
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