ALS Warrior PoetALS WARRIOR POET
-blazeman

BLAZEMAN'S DIARY
DAILY WAR ON ALS
July 1st - September 30th, 2006

Today's Date is

Saturday, September 30th, 2006

Blazeman,

…comes from deeper than that. Thanks for sharing, for letting the blood seep into others conscious rather than your own bandage.

ST

* * * * * * *

Cheers amigo… and a song from my pocket…

-blazeman

* * * * * * *

Blazer:

Thought about your journey a few weeks back. Read Joan Didion’s “The Year of Magical Thinking” and Sandra Gilbert’s “Death’s Door.” Both highly recommended for coming to grips with what we all are coming to. You just have the luxury of being able to know it before it knows you. Is that a gift or a gable? You must know that. Or at least will. If you can’t still the world to fuck itself than you have one person smiling with you, brother.

Abrazos… ST

* * * * * * *

Dear Tinman,

It’s been awhile… somehow my muse went sideways…

Was bouncing around your site tonight… leave for Kona on the 16th -all systems go…

Still walking my path of death and dieing… yup, arms and legs no longer work but middle finger still is…

Hasta,
-blazeman

* * * * * * *


Tuesday, September 26th, 2006

Blazeman,

What you guys are doing is truly inspiring. I hope that soon this disease gets the awareness and funds it needs to find a cure or at the very least progress. I am a triathlete myself and I have done a couple of events for Team-N-Training for the Leukemia/Lymphoma Society. ALS patients deserve the support the TNT gives to its cause. I have been watching the website for over a year now and I am encouraged about the recent growth. I also watched NBC's coverage of Ironman and am amazed by Jon's courage and drive. I can't imagine doing Ironman in perfect health let alone with ALS. While I train and feel like quitting I often think of the Blazeman. I am on the look out for an event in my area, Albany, NY to jump on board and support. The future of ALS patients can thank Jon for his courage, motivation to get his campaign started.

Thinking of you…

Beth Haig


Friday, September 22nd, 2006

BLAZEMAN'S WAR ON ALS

Jon's Gift To Kevin Mackinnon
Team Blazeman Gears Up For Kona 2006.
Ironmanlife: Catching up with the Blazeman
(Click Here)



Thursday, September 21st, 2006

Scott Stafne keeps a blog at www.stafnes.com.

Blazeman,

We thought you would enjoy his most recent post as much as we did, and it will help you realize what it feels like for a patient trying to make treatment decisions.

Place Your Bets: All Or Nothing

Doctor: Did you know you can go to the racetrack and, for as little or as much money as you want, you can bet on any of several horses to win the race?

Patient: Sounds simple enough. What do I get if I win?

Doctor: You get to live.

Patient: Um, OK. So what happens if I lose?

Doctor: If you lose, and I must tell you the odds are much greater that you will, you’ll die.

Patient: Doc, to be honest with you, I’m not sure this is a game I really want to play.

Doctor: I’m sorry, but it’s too late. You’re already playing. Even if you don’t place a bet, you will lose.

Patient: Well that pretty much sucks.

Doctor: You’re right. It does. But there’s more. None of the horses you can bet on has ever won a race. In fact, none of them are likely to even finish much less win. One horse has corporate sponsorship, but has yet to prove himself. Several others are in training, practicing for the big race, but nobody is very confident they can win. The rest of them are long shots.

Patient: Oh this game just keeps getting better and better. So what would you recommend I do?

Doctor: Legally speaking, I can only advise you to try betting on the officially sponsored horse. Perhaps you can do some research on the rest of the field. But ultimately, you’ll have to make up your own mind.

Patient: So you’re telling me that I’m playing this game for my life, whether I want to or not, that most of the horses I can bet on will probably lose, and that if I don’t place any bets at all, I will almost certainly die?

Doctor: Essentially, yes. Those are the stakes of the game.

Patient: I see. Well then, I guess I’ll have to go place a few bets.



Thursday, September 21st, 2006

Hey Jon,

I hope you are doing okay. I've checked the website lately and see you are as busy as ever. I can also see from the pictures that your condition is progressing. Sorry to see that Jon. Keep fighting.

Our ALS Association ride is this Sunday and my team is doing well having raised $7,000.00 I've started gathering corporate sponsors for a fundraising century next year. Now I'm looking for riders dedicated to ALS and wanting to pedal and raise money. I know you guys have the Tri State Trek back east but keep me in mind in the west. If you know any motivated riders, maybe put us in touch. All benefits will go to ALS-TDF and we will be riding in your name.

You take care and stay strong.

Michelle Heathman
Extra Hands for ALS Mentor/ALSA Event Volunteer
"I ride for those who no longer can."




Sunday, September 17th, 2006


BLAZEMAN'S WAR ON ALS

Team Blazeman Joins Forces With Westchester's Friends Of Claire

Westchester Triathalon

Westchester Triathlon
(Click Here)

Blazeman,

I just watched the DVD you gave me... thanks, it's beautiful to have. A true accomplishment, and huge for the cause. Thank you guys for making the journey to our event this year. Having you and Claire up top of "Claire's Climb" was absolutely amazing, and no one that did that course will ever forget it. The feedback has been strong. We will keep fighting, keep being warriors, and looking for great positive days like yesterday to keep us going. I was honored to finally have met you. Thanks again, and I hope our next encounter is sooner than later.

Love you!
Phil

Sunday, September 17th, 2006

Dear Blazeman,

Just thought I'd let it be known, I was on a long ride today with a Tri group in chicago called the TRI OUTLAWS. And I was talking with one of the gentleman about the Ironman, and he was talking about the Blazeman. And this guy, who I just met for the first time today, told me that he was so inspired by not only the Blazeman's triumph in Kona...but also his WORDS... that he printed them out and has them hanging on his wall in his home. He said, "it's the one where he's ends it by saying... 'whatever you do, get it on film'..."

I just thought that was neat... Jon's words have had quite a reach. This guy didn't even know that I was talking with you guys when he told me this story. So after I told him... he said to make sure I let you know, Jon, that he was really inspired by you last year, and that he tries to live his life by the words from one of your poems.

Anyway... that's all... just thought it was a pretty neat experience today.

Brian Breen

Sunday, September 17th, 2006

Hello Blazemaster,

Just dropping you a line to say hello and thinking of you. I have been going over the web site today, looks awesome. I am not doing well. In the past week, I have had four mucous attacks. I will be going to the doctor on Wednesday. I am really starting to get sick and tired of this ALS. It is enough already.

Jamie Lee



Sunday, September 10th, 2006

BLAZEMAN'S WAR ON ALS
Team Blazeman Joins Forces With Joe Vrablic

Ironman Wisconsin Janus Charity Challenge Fund For ALS-TDF

Joe Vrablic
(Click Here)



ALS Family Charitable Foundation


Sunday, September 10th, 2006

BLAZEMAN'S WAR ON ALS

Buzzards Bay, Cape Cod, MA

Blazeman Visits... The ALS Cliff Walk

Click Here


                   





Monday, September 4th, 2006

BLAZEMAN'S WAR ON ALS

Team Blazeman Joins Forces With The MDA

Blazeman to be interviewed at 2:30 PM
on the local MDA Boston Telethon...
Blazeman to be interviewed at 7:30 PM
on the local MDA Providence Telethon...
       


Sunday, September 3rd, 2006

Hi Jon!

My name is Pam Riel but you will probably remember me as Pam Sunday. I was going to write and say how sorry I am to hear about everything, but instead I want to tell you how proud I am of what you are doing. You are truly an educator at heart. I too am a teacher. You are amazing and what you are doing to educate people is great. I just watched you on the MDA telethon. I think you look great and your strength and dedication are amazing. If you need anything please feel free to call. I wish you and your family the best.

You are all in my prayers.

Take care,
Pam



Tuesday, August 29th, 2006

I don't know if this blog is still up and working... but I figured I would give it a shot. I am one of those random people that you don't know that have stumbled upon your website through some means and have truly gained as a person from your life's lessons.

I'm a 26 year-old triathlete that, for the time being, lives in Tampa, Florida. I graduated from Florida State University 4 years ago and have been a part-time triathlete/part-time world nomad (www.braddiggans.com) but full time questioner of life and lover of learning from others.

When I don't feel like running, or biking, or going to my job the next day- I go to your website... get amped on some looping "Braveheart" quotes, get the NBC Ironman video cranking in the background (don't need to visually watch it anymore... after the 100th time I know you're going to log roll over that finish line like a champ... a tired champ) and read, certainly not for the first time, your poems of getting the most out of life and being a good person while you're on this earth.

I'm not real sure where I will fit into this world of ours, but I can assure you that I will do my best to enrich the lives of those I touch. I think you taught your children that as a teacher, and you fortify the beliefs of those you've been in contact with through your words and creativity.

You've changed lives Blazeman. That disease can strip you of all the muscles it wants to strip you of, but I can assure you that it will never be able to demolish the inspiration you've created through gut busting reality and LIVING the life you were given.

Thank you for continuing to make a difference in this world. I hope to become an IRONMAN in the coming years and I can assure you when I make it to that finish line, sometime deep in the black of night, I will log roll across the finish line and "whatever I do, get it on film."

ALS Warrior Poet fan,
Brad Diggans
bdiggans@yahoo.com



Monday, August 28th, 2006

Hi Jon -

I just wanted to send you an email to let you know the impact you had on my husband. He has been doing triathlons for about 4 years and last year after watching his brother in law do the Wisconsin Ironman and then watching you on the Hawaii Ironman he decided to sign up for the Ironman Wisconsin which is coming up in 2 weeks on September 10th. He has probably watched the Kona tape about 50 times (I'm sure it is to watch you and then get the motivation to work and push harder). He can recite your poems....and he is not a poem guy.

Anyways, he was talking today about putting a picture of him, me and our son somewhere on his aerobars and then below that he is going to have Blazeman printed below the picture. When his mind takes over and tells him he cant push anymore, he can look at your name and remember everything he learned from you.

I'm not sure if you will even get this, but I thought it was worth a try. You are in our thoughts and prayers.

Best to you,
Jane Seggelink

P.S We have one of your poems on our fridge to remind us what to appreciate in live.



Thursday, August 24th, 2006

Hey Cliff, Blazeman and Karen,

Thank you all for your amazing support in the fight of ALS. I appreciate everything all of you do in this battle and appreciate you including my mom on your warrior poet site.

Tot is the most determined fighters I have ever known and I have learned more about life, love, passion and family in the past few years since she was diagnosed with this disease. Not that we didn't have a strong, close knit family before, but it is just different now. I cherish our love for each other and the priceless moments that we continue to experience - even with her on the vent, laying totally dependant, speechless in her chair. She is still with us and fighting every day. Her goal is to be here to hold my baby that is due in November, but knowing my mom, she will continue to find another goal and reach further and further until she has done all the teaching she needs to do here on Earth! I can only imagine what she will teach all of us from Heaven!

I HATE that she is going through this and everyone else out there who is fighting daily. However, I just pray that there is some peace in each of your hearts that God does have a plan and to be open to what He is trying to teach all of us each and every day. At least that is how I get through my days and I know that is how my mom and family does too.

Blazeman, I was at the gym the other day (now 7 month pregnant, so I am getting a little more limited in my activity!) and started my workout on the EFX machine. I plugged my headset into the TV monitor on my machine and there was the re-run of the 2005 Kona Ironman...I watched my heart rate soar (which is not the best thing for a prego chic!) as I watched all of you amazing athletes swim, bike and run....reminding me of what I have been missing and what I have to look forward to when this baby is a little bigger. And then, there you were! Your story - even though I have seen it before, brought me to tears as I huffed and puffed on the EFX machine in front of plenty of people. I didn't care. Through my tears, I told everyone around me to turn it to that channel for true inspiration. I was so proud of you and your family at that moment, almost if you were my own. And then I realized, we are family. Brought together by this terrible disease but with hearts and souls bigger than most people could ever dream of. Connection to people like you and your family with minimal knowledge of the other is rare but I feel that with all of you.

Another connection to you Blazeman, my mom was a school teacher for over 35 years. She ended her career teaching the gifted program and to this day has students from 30 years ago coming to see her, sending her cards, flowers, baby announcements, etc...She touched so many lives - the way "Old school" teachers should! She retired, top of her game, with a Masters plus as much continuing education and additional college credits behind her. She raised all of us girls on her own (until my step-dad Sam came into the picture:-)) and always dreamed of having her Masters. She told me, her youngest daughter "I will either beat you or meet you there..." We ended up graduating together, same ceremony, from Miami University in Oxford, Ohio. Priceless memories - she would drive over to Oxford after teaching all day to take her evening class. We would meet for dinner or coffee before our classes and she would drop me off, give me a kiss and say "Call me if you need me!"...just like she would do when I was 5! A truly determined lady. What lessons I thought I was learning then. Little did I know what she would continue to teach me! Daily!

I tell you all of this because for whatever reason, I find that this disease targets the strong ones. The real fighters and the real teachers. Why you guys? I just don't know yet. But in the process of it all, you and my mom continue to teach and touch lives in a way that you never dreamed. It is even deeper and more powerful. Know that each moment that you are fighting - be that from a bed, wheelchair or log-rolling across a finish line, you are continuing to teach and reach so many people. Keep fighting Blazeman and family. You have all of our support, love and prayers!

I wish you strength for today and bright hope for tomorrow!

Shannon Le Mintier



Tuesday, August 22nd, 2006

I haven't visited your website since my husband, Jerry Beckwith, died on April 4, until Sunday night. I saw that you had included his picture and a link to the "Jerry's Baddle" website on your "Fallen Warrior poets" page. It was like finding a treasure, a piece of him in Internet-land. I found great comfort in knowing that alot of people have hopefully been touched by him and have a little bit of insight into his spirit.

I remember when Jerry first found your site last year he was so excited. He, too, loved "Braveheart". He was totally inspired by what you have accomplished. He continued to ride his bike as long as he could. He switched from his road bike to a recumbent in September of 2005 and his last ride was on March 5. I "Rode For Jerry" (that's me in the picture) at the "Baddle" and his strength was in my legs.

This Saturday I will meet with his friends as we begin to plan the next "Jerry's Baddle" for ALS and the Green River. I will inform you of details when they are set. Your website is an inspiration and I forwarded to all of Jerry's friends and his doctor at Duke University.

Thanks for what you are doing and I will continue the war on ALS in memory of Jerry and all the fallen warrior poets,

Brid Pollen Beckwith



Sunday, August 13th, 2006

BLAZEMAN'S WAR ON ALS
Team Blazeman Joins Forces With ALS Warriors Barry & Jody Siff Of 5430 Sports


(Click Here)


In Memory Of John Paul Stermer


Friday, August 11th, 2006

BLAZEMAN'S WAR ON ALS

(Click Here)

Dear Friends and Families:

Unfortunately, we have a common bond, in that we all have a loved one who has been afflicted with this terrible devastating disease, ALS. We (like many of you) are trying to do something to make a difference. To make our impact felt by this disease, somehow, even if in a small positive way. We are hosting a golf tournament, with all the proceeds going to ALS TDF. We are in our 5th year and we thought what would be better than to join with our other “Friends and Families” as an act of solidarity against this rotten disease.

We’d love to have you join our golf tournament or the dinner following the golf. Of course donations of any size are always endeared. Briefly, the tournament is to be held Friday, August 11th at Hampden Country Club in Hampden, MA (see all the details for the event on www.golf4als.com). Feel free to email me at golf4als@comcast.net if you have any questions. We have found the tournament to be an uplifting day and we promise to share that feeling with you. We look forward to meeting and sharing with all of you.

Thanks

Walt and Linda Tucker


Wednesday, August 9th, 2006

Hello,

My bro-in-law sent me a link to your website. I was diagnosed in March of 2003 with ALS, given 6 months to two years to live and I’m still very much alive. Praise God! We down here in the South are still battling! I was inspired and filled with compassionate love for all the warriorpoets. Thank you for standing up and sharing.

Frank Campbell

Rom 15:17-18
17 So it is right for me to be enthusiastic about all Christ Jesus has done through me in my service to God.
18 I dare not boast of anything else.
NLT

www.frankswebsite.com


Saturday, August 5th, 2006

You can watch the show that captivated audiences around the world and won a prestigious Cine Golden Eagle award again this weekend. Tune in to NBC on Saturday August 5, from 3:30 - 5 p.m. (EST) for the re-air of the 2005 Ironman World Championship. (Please check your local listings.)

Included in the dramatic coverage of the world’s most gruelling one-day endurance event is the come-from-behind victories of Natascha Badmann and Faris Al-Sultan, along with the dramatic story of Jonathan Blais, who finished last year’s race despite the fact that he has ALS (amyotrophic lateral sclerosis, better known as Lou Gehrig’s disease).

* * * * * * *
Saturday & Sunday, August 5th & 6th, 2006

Jon,

You are an inspiration to so many and as I sit here watching the re-broadcast of the 2005 Kona Ironman, I just had to write to say BRAVO. I am doing Ironman Canada in 3 weeks and will admit that your story last year was a big contributing factor to my desire to do this Ironman thing and am dedicating my race to everyone - like yourself - who has ever had the strength and courage to overcome such huge odds to compete and live for RIGHT NOW.

Thanx for your inspiration, and be well!

Cheers
Tavis Yeung
www.gymskinz.com
Vancouver, B.C. Canada

* * * * * * *

I watched a telecast of the 2005 Ironman in Hawaii in which you competed. I was struck by the poem which played during your story and portions of your race and was wondering where to obtain a copy of it.

Thank you and good luck to you and yours,
Kelly Hibbs
Austin, Tx.

* * * * * * *

Vicki,

While watching a repeat broadcast of the Ironman, which featured a segment on the Blazeman and his struggles with ALS, he read a poem that hit me in a way I can not express. I do not know if it was a poem he wrote or one someone else had written that he found inspiring, but I am desperate to find it so that I can keep a copy of it with me.

I do not recall the exact words of the poem, but it's focus was on the real measure of a person and that this measure was not in what they did for a living or how much money they had, but in their character and how they lived their life through the good and the bad.

Do you know this poem? Do you know where/how I might be able to get a copy of it? Any assistance you can offer would be greatly appreciated.

Thank You,
Kevin

* * * * * * *

I just turned on channel 5 in Chicago 2:43ish on Sat.

I caught last end of what was apparently a poem spoken by you Jon Blais as part of the human interest aspect of the Ironman. My 26 year old daughter was just diagnosed with colon cancer. She is also an athlete. she plays Capoiera, a Brazilian Martial Art. It feeds her mind and spirit and she is afraid that this thing will take that away from her along with her colon.

I thought that what I heard of this poem was wonderful and described accurately the battle that she is fighting. I'm wondering if there is any way I can get a transcript or copy of the video. Could you direct me? She is also a Warrior-Poet. Her website is cancer-sucks.com.

Thank You,
Mary Babcock
Chicago, IL

* * * * * * *

Jon,

I watched your performance in the Kona Triathlon today with tears in my eyes. My brother Bryon passed away in 2004 at 43 years of age due to complications from ALS.

Another connection I noticed from viewing your website, my family is from Seekonk. In fact, my dad supplied some of the organic material that supports the turf at the Firefly Golf Course.

Bryon came to live with my husband and me ten months before he died. As challenging as it was, we consider ourselves touched by God to have been given the privilege of spending that time with him.

My sincerest best wishes to you and your family.

Regards,
Carol Hayward
Boca Raton, Florida

* * * * * * *

Blazeman,

I fear I may never be able to run again, but by watching you I learned to believe that I cannot give up trying. The world is a better place because because you give so much to it.

Kevin Holmes
Alexandria, VA


Saturday, August 3rd, 2006

Jon,

I wanted to thank you for helping me cross the finish line at Ironman USA, Lake Placid this year. It was my first, I had a list of reasons why I wanted to finish and people throughout my life that have inspired me and your name was right there with them. Thank you. I hope and pray for you all the time .

Joe McHugh


Friday, July 28th, 2006

BLAZEMAN'S WAR ON ALS


Team Blazeman & ALS Warrior Mike Casey Join Forces On The War on ALS

The Blessing of the Fleet 10 Mile Road Race
Narragansett, RI

All donations made on behalf of sponsoring me will go to ALS-TDF.

         

Blazeman With The Fastest Kid In The Plat...


Sunday, July 23rd, 2006

BLAZEMAN'S WAR ON ALS
Team Blazeman & 5430 Sports Join Forces On The War on ALS


Saturday, July 29th, 2006

Hey Jon and Bob,

First off, my trip to Boulder Peak was amazing. Barry and Jody were incredible and they run such a great event with total commitment to raising funds for ALS research. They put together great prizes for us to run a HUGE raffle with while I was out there. And, when other vendors found out about the raffle they were donating their products on the spot to help us out.

Every hour during the info sessions for triathletes Barry talked about John Stermer and Jon Blais and what an impact you both have had on him personally. He reminded people that we need to find a cure and let them know that they could be a part of it. After every info session, I had a huge line of people with their wallets out hoping to support the Blazeman and to donate in memory of John Stermer. It was incredible.

I've attached some pictures of our booth...my camera ran out of batteries, so I couldn't get too many pictures. I can't tell you enough how many people came up to me with stories of ALS in their families, people who had seen Jon on the Ironman footage from NBC, people who knew John Stermer and saw him battle ALS and succumb so quickly to this devastating disease.

It was a great weekend.

Molly

Molly Cotter
Director of Programs
ALS Therapy Development Foundation
215 First Street
Cambridge, MA 02142
p 617-441-7249
f 617-441-7299
www.als.net.


Sunday, July 23rd, 2006

BLAZEMAN'S WAR ON ALS
Team Blazeman Joins Forces With ALS Warrior Peter Firth

Ironman Lake Placid Janus Charity Challenge Fund For ALS-TDF

Peter Firth
(Click Here)



Friday July 21st, 2006 - Sunday, July 23rd, 2006

BLAZEMAN'S WAR ON ALS
Team Blazeman Joins Forces With ALS Warrior Don Blais


(Click Here to Meet Mat & His ALS Warriors)
       



Saturday, July 15th, 2006

Jon,

I have been following your journey for some time. I am an above knee amputee due to cancer. I was watching the play back of the Ironman and watching for Sarah Reinerstein when I saw your story.

It brought me to tears. I may have cancer, but we are all fighting to show the world that life does not have to come to a end. I am currently learning how to run on my prosthesis, and training for my first run. I hope to show people that life does not come to a end because of a disease. And more needs to be done with discovery for cures.

Keep up the good fight. And when I run you will be in my heart.

Becky McDonald



Tuesday, July 11th, 2006

BLAZEMAN'S WAR ON ALS

Click Here For The Blazeman's Interview
On The New England Sports Network
Check The Box For ALS Not Stopping Ironman Blais

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