To Be So Brave
I received an email yesterday which led me to discover a web series about a man Tim LaFollette who died 2 days ago by the unforgiving hands of ALS better known as (Lou Gehrig's Disease).
I have been up for hours now, watching Tim's story unfold. There is absolutely nothing I can write here to encapsulate the emotion and awe in watching this mans life. To face death with grace, and heart, and love of life, it's a bravery that has only existed in films, and story books for me. I don't think I ever realized what real courage looks like, not courage like this. I have heard people say things before like "he died well, or he died bravely" and I had no idea what that looked like before, what that really meant. In this series you can see Tim clinging tightly to his spirit while his muscles fail him, while his lungs will not fill with air on their own, as he slowly becomes a prisoner trapped in his own body. That spirit of his, and the love that circles him, rallies so much support and motivates and moves so many people.
Tim LaFollette and his wife the love of his life Kaylan, are inspiring beautiful humans. Their story needs to be heard, and spread, and the lessons learned from their relationship and battle with a terminal illness is an important story. It's something that should not be ignored.
I hear people say all the time: "Well, I don't know WHAT I would do." in response to something tragic befalling a loved one. If you want to know what you should do, how you should respond, how to treat others in the face of death, this is what love looks like. This is a tremendous love story, please share it. Bookmark this series and watch it when you can, find some time, keep this man's voice alive and well, spreading around the web, inspiring others, and let his voice teach us all something new about this life we lead.
This is the trailer to Tim and Kaylan's story. It's the trailer for a 33 part web series that was made to help spread the word and awareness about Amyotrophic lateral sclerosis (ALS), which most people know as "Lou Gehrig's Disease." Tim LaFollette calls it "America's Best Kept Secret Disease." Please watch this trailer and follow the links below and watch their story. Thank you.
Please CLICK HERE to visit the Often Awesome website to view the entire web series. Just scroll to the bottom of the page to start with episode one. The Diagnosis.
THIS LINK is to the blogger that wrote me yesterday, Tim was her friend, and she wrote an incredible post that I wanted to pass along to you. Here is a small quote from her post, she is indeed doing her part, inspiring others to word spread, and share. Tell his story.
"About a year ago, when Tim lost his speech, he learned how to talk with his eyeballs. A special computer tracked his gaze so he could crack wise with a wicked cool robot voice.
Now he has a whole host of new voices. He has the Often Awesome Army, which is, in its own way, controlled by his gaze. He has a legacy of love plain to see in his friends and his family. And he has me, here, whispering his story in your ear. Please pass it on."
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21 comments:
"Tim LaFollette and his wife the love of his life Kaylan..."
I'll have to come back to this one, since that sentence alone has me tearing up at my desk. Stories that leave behind a lovestricken wife or husband just shoot straight to the core of me.
Holy shit. I'm crying just from watching the trailer. Looks like a great series. I'll be sure to watch it at home where I can ugly cry in private.
Thank you for sharing this with the wide audience you reach. I'm sure Tim would be stoked.
Hi,
Crazy timing. I'm sending this to a friend whose dad has this diesease. Maybe there will be something healing in it for her.
Thanks.
I read your blog daily, and when i saw this post, I immediately cried. I, too, have been affected by ALS. My little sister, Haley, was diagonsed days after her 16th birthday. Instead of getting a car, she received a wheelchair. One of the youngest people to ever be diagnosed with this awful disease, we struggled for answers to ease her pain. She lost her battle on September 3, 2009, a year after her diagnoses. I urge everyone to take a moment to tell the ones around you how much you love them. Our family and friends are constantly raising money to find a cure. We participate in the Walk To Defeat ALS every year. We sponser a 5k and 10k run. We bake cupcakes. We tell our story every chance we can. We do it on behalf of Haley--for everyone who needs research, supplies, and support. Our team is called Haley's Hope...and thats exactly what we do. We "hope" for the future. http://haleys-hope.com
Thank you for bringing awareness to this disease. It's people like you that can make a difference just by showing your support.
Thank you so much for sharing this. I have a friend the same age as me (32) who's husband is fighting ALS. They have a daughter who is just a few months older then my own. They received his diagnosis when they were expecting their baby and by the time she was born he could not carry her home from the hospital. In the last two years his conditions has continually deteriorate. Watching their love, determination and exhaustion has been inspiring and so, so humbling. This disease needs more attention, funding and research. Thanks again for sharing this.
My father in law died of ALS just two years ago, within a year of his diagnosis. He was 53. It is a horrible way to watch someone go, but like Tim, my father in law approached his condition with grace, humility, and gratitude. And oftentimes humor even. He relished in the chance he had to mend relationships, learn what was truly important, and spend time with loved ones.
We were all able to witness some pretty incredible demonstrations of charity and love and we learned so much about each other. The experience left everyone stronger and closer than ever would have been possible.
My father in law, while he could still spreak easily, maintained that the disease was the best thing to happen to him-an answer to prayer even. And, looking back, I can agree. While i would never wish ALS on anyone, I'm grateful for the lessons we learned from the experience. I'm grateful to have seen my husband serve and love his father and family in the capacity he did during those final months. In the end, the approach my FIL took to what was ultimately his death sentence was a blessing for many.
I do hope this disease gets more attention. Thank you for your post.
My sister in law got some amazing photographs just moments before he passed. You might appreciate them.
Http://amelialyon.net/personal/missing-my-dad.html
Ya, just watching the trailer made me cry. Damn, if I need to muster emotional strength just to watch other people being brave and strong, what does that say about me?
My grandmother fought ALS and died 9 years ago this November. So little is known about the disease but no matter who it is that has to fight it, each individual is more courageous than I could ever imagine being.
I'll watch this trailer when I'm not at work.
My father-in-law died of ALS last Oct 1st. He lived across the street and my family was intimately involved in his last year. This disease has affect me, my husband, my children, and our whole family in ways I can't begin to describe. Thanks for sharing this.
Ryan,
Thank you - thank you for posting this. I know what it is like to be by the love of your life's bedside...but we had hope...hope that he would beat the disease. We clung to that hope, and my husband did survive. I can't even imagine the courage and bravery that Kaylan and Tim and all that love them had to muster. Truly beautiful people. I guess the hope for them is that research is funding and a cure will be found SOON! A cure so that no one should have to endure a disease so awful - truly devastating. There is hope and it is in our hands.
Above and beyond, Ryan. Thank you.
I randomly found your blog today. Today, of all days I stumbled upon it with Tim's story. I will be sure to watch the series and donate to the cause. My uncle died from ALS last year. Thank you for helping bring awareness.
My most memorable patient had and died with ALS. This is a cause I am passionate about because it takes everything from you slowly and you know what's going on every minute of it. I will never forget the patients I have care for with this condition. They, for some reason, are the most, well brave doesn't even begin to scratch the surface of the what they really are.
Thank you so much for sharing this with all of your readers.
I watched my friend lose his wife from ALS;i wish i knew about this series before so they could have watched this together; this series is at once heroic and lovely. cried from start to finish.
My beautiful Nanny died from ALS. It was horrible to watch such an amazing story teller and artist lose the ability to paint/write and tell her stories.
Thank you for sharing this. Truly. I feel like it is something bigger than all of us, and after seeing what he has gone through it is now a duty to at least let people know about ALS, and the horrifying journey it can take you on.
I have just started watching this series, but it's already pulled me in. I am in awe of this army of people that has rallied on his behalf. Amazing. I posted a link to this post on my blog, in hopes that their story reaches more people.
This is incredibly touching. I had a wonderful friend die from ALS in 2008. I wrote about it here: http://ht.ly/6g1RA
I was in Cali and she was in Atlanta, and my sister and I went for a final visit with her when she knew her time was near. She was preparing her family, and you can't imagine anything so heartbreaking. ALS is a HORRIFIC disease. Thank you for shedding some light on it.
Thank you so much for sharing Tim's story. I didn't know Tim but my daughter was one of his many many many friends. Tim, Kaylan, and OAA will be an inspiration to the world if we all keep telling their story.
Thanks for sharing this
Thanks you so much for sharing this. I cried, I laughed, I rocked out, I got inspired. Art & love & community & hope... it's all there, brought out by a shitty disease...
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