Friday, August 6, 2010

Livestrong

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So, lately everyone from friends and family to strangers who see me decked out in my Livestrong gear have asked me about my opinion on Lance Armstrong and the doping allegations. The honest answer is that I really don’t care. Let me explain.

Sixteen years ago I had just finished treatment and was living at home with my parents. I was bald, skinny, and had a catheter in my chest . In short, I was different. I was in a very odd place in my life. I didn’t/couldn’t fit in. On one hand, I wanted to assimilate, get back to normal and be treated like I was before cancer, but it just wasn’t a realistic expectation. I was the kid who had cancer. Cancer was such a bad word in 1994, you just didn’t talk about it. I was in a very dark place too; the National Institutes of Health asked me to talk to the kids about my experience with cancer to give them hope and inspire them. I tried, but I failed. I couldn’t do it, I felt guilty that I was alive and others were not. I could not honestly look at them and say anything to change their outlook. I didn’t really have anyone to look up to when I was going through treatment. The “support” groups at the time consisted of the pediatric patients getting together and talking about our feelings. Sounds good right? Not at all, every other week someone was missing from our group as they lost their battle. I went twice and never went back.

I watched an 18 year old boy with my same diagnosis lose his battle with cancer. Why did he die, but I did not? I don’t have an answer. Was it some higher power? Luck? I haven’t the slightest idea. I was lucky I didn’t get the infection that he did. Look, I’m not complaining, but nothing made sense to me at the time and how could it? I didn’t have anyone to talk to, there was nobody out there that truly understood what I had just gone through. The internet, well, we didn’t have the resources that we have today.

After treatment, I went home and went about my life as if cancer never existed. I never talked about it for fear of people thinking I was different. The stigma was still there. Cancer was a dirty word. They didn’t even call it by name, instead referring to it as the Big C! A couple things happened in my life to completely change my perspective. I remember hearing about this guy who beat cancer and won some bike race in France. At the time, I was an avid mountain biker, hated road bikes, etc. seemed like too much work and not enough fun for me. A couple of years later, I picked up his book. From the first page, I couldn’t put the book down. I felt like he got it. He knew everything that I went through. Did he write this book for me? Of course not…but maybe he did. He wrote it for people like me who struggle with life during and after cancer. There is no guidebook for a cancer diagnosis, you don’t know what to do, how to act, what to say. Everyone feels sorry for you and they don’t know what to say either. Do they ask if you are cured? Will it come back? How was treatment? You feel completely isolated, because again, people just don’t get it. This book was my bible. I read it 4 or 5 times.

Cancer not only physically destroys your body, but it really screws you up mentally as well. I thought some of the similarities in Lance’s book and my experience were eerie and uncanny. The tests, the MRIs, apprehension, CT scans, X-rays, right down to the nurse playing a prominent role. My primary nurse was a God-send, I confided in her, she knew everything I was feeling. To this day, our family still keeps in touch with her. We send Christmas cards and she’s seen our family grow as well as we’ve seen hers. The book showed me that it was ok to have cancer and gave me the courage to talk about my experience. It kind of said, let’s talk about it, stop avoiding it, get off your ass and make a difference. I think Lance called it the obligation of the cured.

Fast forward and my good friend Ryan Gascoyne lost his battle with cancer. I clearly remember the sermon at the funeral. The priest talked about how precious life was and how important it is to make your mark in life because life was so short. I took that to heart and told a few friends at the Irish wake (aka celebration of life involving massive amounts of alcohol) that I was going to do something to honor Ryan. I am pissed that it took his passing to get me off my butt, but it did and I will forever ride for Ryan. I got involved by fundraising for the Leukemia and Lymphoma Society by doing a century bike ride around Lake Tahoe. Got my first road bike……not so boring after all. That ride changed my life forever. I rode in honor of my aunt Joan who was fighting cancer and in memory of Ryan. It was the most amazing experience of my life. It was extremely difficult climbing the mountains of Lake Tahoe, but I was possessed. Ryan and Joan gave me the strength to finish that ride. I will never forget coming down that last hill into town. I was crying uncontrollably. They were tears of joy, but also pain and sadness. I was happy that I had finished the ride for Ryan and Joan, but I was upset that Ryan wasn’t around. That was my introduction to giving back and making a difference.

In 2004, this little yellow band popped up. I immediately got one. Livestrong. It was but one word, yet to me it was so much more than that. It became a way of life. The beauty of Livestrong is that the word is universal; it has its own meaning for each and every individual. For me, it was a constant reminder to make the most of our time on earth. Life is short and precious and we need to embrace it. The band is a constant reminder to stay on course. Times get tough, I get stressed just like everyone else, but then I glance down at the band and I remember. I remember the boy in the hospital bed next to me who lost his battle with cancer, I remember Ryan Gascoyne and Aunt Joan who both lost their lives to this horrible disease. Then…a remarkable thing happens, it’s called perspective. It brings me back to reality. I have my health, my wife, and a beautiful little girl. A bad day, didn’t get that sale I wanted, too many bills, baby crying, can’t sleep, etc. It doesn’t matter, I don’t sweat the small stuff as they say. Too many times we fail to look at the big picture, and that is what Livestrong does for me, it helps me focus on the things that are truly important to me.

The reason that I don’t care about the allegations against Lance is that at this point, Livestrong is so much bigger than him. Livestrong is a movement, not a person. We are a grassroots, unified group of people working together for a greater cause. Close to 600,000 Americans die every year from cancer and 1,500 Americans die every single day. That is a 9/11 every two days. Think about that. Globally 28 million people are living with cancer. 28 million! 22,000 people die every day from cancer, that’s more than AIDS, Tuberculosis, and Malaria combined. There is so much work to be done and the foundation is just that, a foundation, it is THE foundation of the global fight against cancer. To borrow from my friend Jamie Lindsay, "if Lance Armstrong the athlete made mistakes, so be it. The man, the cancer survivor, and the foundation however, continue to inspire and teach."

My outlook on life has completely changed and cancer is the reason I live such a rich, fulfilling life. I have so much to live for, so many things left undone, so many goals and dreams that I will fight it until there is no more fight left in my body. Plus, I love how life is full of surprises, good and bad, because that is what makes life so worth living. The unknown. I don't want to be "stuck" in life, I want surprises! Life is a precious thing.... Be well, and Livestrong!

28 comments:

  1. could not have said it better myself. Keep up the great work amigo

    John

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  2. Great blog Joe. Keep up the good work. You are an inspiration to so many people on and around the Team. If I haven't told you, I want you to know that I am proud to have you as a friend.

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  3. Thank you for putting this into words at this particular time. A day isn't passing where someone asks that same question, as if there is some perverse pleasure in this issue. People are dying, Survivors get relapses & 2nd or 3rd cancers. There's real work to be done, and we can't afford to lose our focus. LiveSTRONG4Life!!

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  4. Love it love it love it!!!!!!!!!! Thank you Joe.

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  5. tears......exactly my thoughts and words...wow..thank you, Joe

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  6. What an excellent, inspiring message. I feel the same way about LAF -- it's not about the bike . . . it's not about Lance . . . it IS about the Livestrong movement and its noble mission!

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  7. This is so well put and nails my thoughts exactly. The difference is that I didn't know how to express my thoughts. Thank you for putting this out there. LiveSTRONG!

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  8. Thank you so much Joe. You are a true patriot of LIVESTRONG and speak like you feel. Hold your head high and inspire others! Thanks again

    John W

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  9. With you 100%. When the going get tough, the tough LIVESTRONG. There's no stopping our movement.

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  10. Really thank you Joe, for your words.
    Bob

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  11. I find it odd whole the whole Livestrogn movement as gone from the 'complete denial of wrongdoing' stage to the 'it does matter what happened anyway' stage.

    With all due respect, it DOES matter if it is proven that certain prominent cyclist were breaking the rules on the USPS, Discovery and other Pro cycling teams.

    The whole concept of "LiveSTRONG", as I understood it, was to fight the good fight, be brave, be honorable, give of yourself to others AND BE A GOOD EXAMPLE.

    To think that all of the fame, following, influence, and recognition 'LiveSTRONG' has enjoyed was obtained from Tour de France victories that possibly involved cheating, lying and breaking the rules is hypocritical.

    "The ends justify the means" is an excuse that RARELY stands up to any real challenge.

    People were diagnosed with, battled, and lived or died from cancer long before Livestrong, and they will long after Livestrong is gone. People have worked to benefit other people with cancer LONG before Lance Armstrong came along, and also will long after he is gone.

    I also wonder how much good the whole 'look at me!' attitude so prevalent in "LiveSTRONG" really does for the whole cause of surviving cancer.

    Not everyone is a superstar and not everyone gets to be famous. You need a whole lot more followers and unknown workers doing the unglamorous to get things done than you need high profile members and constant self-promoters.

    Yes some good has come of this whole effort and organization, but the time has come to look at exactly what has happened, and what can be done to make the efforts more effective in the future.

    - a cancer survivor, cyclist, activist, philanthropist, and long time TdF fanatic

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    1. wow, 2 years later, and recent events, I completely agree with you and you have said it better than I can. I am reminded of certain politicians like John Edwards, Mark Sandborn, etc, whose whole lives were lies, as is Lance's. As you are, I am a parent of a cancer survivor, cyclist, fundraiser, philantropist and pro cycling fanatic.

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  12. Joe, your words and sentiment exemplify LIVESTRONG. Beautifully stated. I'm proud to have ridden with you as a member of Team LIVESTRONG. Thank you.

    To anyone who has to post an anonymous comment, well, that's weak. Have an opinion and stand by it. Yes it's true people before LIVESTRONG had cancer and survived. I think it's important to note that thanks to LIVESTRONG people have one central location for information and support. With one click of the mouse or one phone call they can find out about appropriate clinical trials, doctors, financial support, insurance and so much more. You can have had cancer before, but with LIVESTRONG you can receive KNOWLEDGE, UNITY and a great ATTITUDE.

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  13. Nicely done Joe. I am going to link to your blog because this is something I have talked about a lot recently. My version has been something like, 'Whatever you think about the man who is Lance Armstrong and his present day lifestyle, fame, commercials, statements, etc, you can still support the concept of Livestrong and the foundation which is made up of many other people all working hard to improve life for cancer survivors.' Like you, I have read his book more than once, and as a survivor myself (and still currently in treatment), I take strength from the comments and musings that came out in that book. You mention the "Obligation of the cured" and that was a very powerful section of the book for me. In that same chapter, there is a story about a soldier (perhaps a Marine or a SEAL) who visits Lance in the hospital and tells him, "You don't know it now, but we are the lucky ones." Referring to cancer survivors. I agree with this and feel that I have been given this disease and this fight to show me just how much I am capable of and how much I have to do in this world. Keep up the great writing.

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  14. JOEY!! you said what we all feel. Keep up the amazing work, so proud to know you. That other guy doesn't get it!!! Its about the people, forget Lance, this is a movement, like you said! Lance is but a cog in the wheel, the people are the legs that move this bike baby!

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  15. Yes! Exactly. I pretty much said the exact same thing after a lot of thought about the subject. "I don't really care". What he has done for the cancer community and what he has done for my spirit throughout the Good Fight is incredible.
    Cheers.

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  16. Nicely said Jo-Jo.... I might add that you were a very good mountain biker!

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  17. Wow Joe, your words touched my heart. I remember thinking so many of these same things when I met mothers who had sons with the same battle as my son Derick, yet he died and their sons lived. I asked why when Lance had the same cancer as Derick, and Lance was even more progressed than Derick in his cancer, why did he live and Derick didn't. Was it that some had access to better healthcare than others, was it because of who they were their treatment protocol was carefully hand picked for them while others were given the standard. It took me a while to realize, it was none of these, it was in God's plan before we took our first breath. I love the LAF foundation and what they do to continue to teach and inspire others fighting this fight. Derick also read Lance's first book over and over and I can truly say, he did LIVESTRONG everyday and that's why I continue to do my part by going to Captitol Hill with LAF and OVAC so in hopes that no other mother will ever have to bury a child. I made Derick a promise that I would continue his fight. Joe, you have so much to share with so many. I'm proud that I had the opportunity to meet you at OVAC, D.C. continue to LIVESTRONG my friend. Renea Rosson/Clarksville, TN

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  18. Joe,
    Couldn't have said those words better. You are right...LIVESTRONG is a movement and people like you keep it strong. Keep putting each foot forward and live life to the fullest

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  19. The obligation of the cured... in one phrase you summed up everything I've been doing for the last eight years. Beautiful blog. You're a real inspiration.

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  20. Wow! I am sitting here with tears flowing down my cheeks. What a wonderful message! I can see why Jon shared the link on facebook. As a survivor myself, I can relate to so much of what you said. I wear my Imerman Angels and Cranbrook Envisions a Cure awareness bands as my reminders to stay focused on LIFE and to breathe when stressors come along that are not worth getting my "shorts in a knot." Thank you for all of your efforts on behalf of cancer patients!

    Cec Vettraino Strine
    Rochester Hills, MI

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  21. Here's a comment from our good friend who just finished treatment for ovarian cancer. "I read The Livestrong Manifesto every day during the early days of my cancer diagnosis. Everyday I would feel motivated to get out of bed and live with hope and without fear. My friends Brad and Jennifer Didier were there from the moment I was diagnosed. They believed in my life and survival. They wore my name on their shirts during races. Thank you Lance Armstrong for the example you have been to all of us."

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  22. Wow...such powerful words. Thank you for sharing your perspective...I love this

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  23. I'm not a biker - just a wanna be biker - running is my thing....so have never been a big follower of the biking scene. And never really a big Lance fan. But after losing both my parents, a sister and finally my husband to cancer, a good friend that was involved with LIVESTRONG suggested I read his book. WOW! His description of his feelings and experience with cancer helped me to understand what they were feeling - thoughts they couldn't share with those they loved because I suspect they felt it would burden us. What struck me was the fact that my husband's doctor stated after sharing he had cancer "This will kill you." No hope provided at all. Lance and LIVESTRONG has provided HOPE to fight cancer, to get those second & third opinions. Those Lance doubters (like myself) need to pick up his book....gain an understanding of what this community means towards others. It really isn't about the bike!

    Thanks so much for sharing this Joe. I hope you don't mind it being shared with others.

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  24. Joe,

    Amazing how well you summed up my feelings. Cancer changed my life, but "the obligation of the cured" changed it in a way such a positive way, I have difficulty explaining. Lance and his story helped me more than anyone will know.
    Thank you Lance and LIVESTRONG!

    Dennis Wimmert

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  25. Joseph James Schneider, amazing post. I love your perspective. I could not have articulated this nearly as well as you have. Thank you for being such an amazing advocate.
    Rob

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