A letter came today. In the midst of a very trying week, in between conference calls, speaking engagements, and an overstuffed Inbox, it appeared. A letter with the power to calm a worried heart, provide much needed perspective, and offer a reminder of how much we all really need each other. One little letter.
The past few weeks have been disappointing. My neurological disease(s) continue to fuck up my groove, now attacking my endocrine system. I’m spending more time in hospitals and doctors’ offices than I have in the last two years combined. We are planning and strategizing and preparing for battle. Some days it’s disheartening, frustrating, tiring. Other days, I just slam a gallon of coffee and give it everything I’ve got. (And then I blast “Damn it Feels Good to Be a Gangsta” by the Geto Boys on my car stereo and think, well shit, I’m still here, I still got this, B. This is some serious badassery. I just gotta keep doing what I do as long as I can do it. Because I’m lucky to be here.) So, there are good days, bad days, and everything in between, but generally, it’s been a tough burden to bear. And then…
A letter came today.
Across the country, a five year old that I have never met has just come out of another neurosurgery. He has one of the conditions that I have, a tethered spinal cord with syringomyelia. The amount of pain and suffering that this little guy has endured, and will endure, breaks my heart. Through this blog, and a little help from a dear friend, this family in Oregon and I were brought together to support one another. I have a unique advantage in being able to help this little guy’s parents understand symptoms, treatments, prognoses, but also to be a sounding board, to try to offer advice on how to approach treatment options, and to be a source of strength and comfort whenever I can. We write, we speak on the phone, sometimes, we cry together, out of frustration and concern for a really great little kid. Today, this little guy’s dad wrote me a letter.
I won’t post the actual letter here. I want to maintain the privacy of our correspondence. Sometimes, words are too precious to share. What I do want to share is the reason for the letter.
Simply this, that they are grateful to have someone like me help them navigate this journey. That, because of the knowledge I can offer, they can (and have) saved their son additional pain and suffering. That it’s so incredible that a woman they have never met in real life could be so pivotal in helping them fight for their son. They think it might be God. They thanked me for being the messenger.
I cried in a way that I haven’t in a long time.
I don’t believe that I deserve accolades for helping others. I do believe that everything happens for a reason. If I am meant to live this life, with the challenges that I’ve been handed, so that I could make a difference in the life of a wonderful little boy who has his whole life ahead of him, then I accept my fate with *gulp* gratitude. I have always refused to feel sorry for myself. I refuse to be a victim to my condition. Because of what I’ve been through, I have the power to help others. That is worth everything.
A letter came today.
It opened my eyes to the power of reaching out and helping someone just because you can. That letter healed a spot in my heart that I didn’t really know needed mending. It brought me renewed perspective, it brought me some peace. It brought me news of a successful surgery and the hope of relief for a little guy that really needs it.
We need each other, all of us.
As Ever,
I’ll eat you up, I love you so.
41 comments
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September 8, 2011 at 11:56 am
Tom Henrich (@tomhenrich)
I believe Bill Withers has something to say about this.
http://www.youtube.com/watch?v=HaVXfHZv50Y
September 8, 2011 at 12:03 pm
Sara
Man, I love that song. So true. Made me cry. Again. (Damn, I Ain’t Actin’ Like A Gangsta.) Thanks Tom. xo
September 8, 2011 at 11:57 am
alexandra174
That is the beauty of life.
I can’t think of the quote, “where others see a challenge, another sees an opportunity.” Something like that.
I think of that often. How can I turn this ship around.
Beautiful to see this here, Sara.
September 8, 2011 at 12:05 pm
Sara
I love that, “How can I turn this ship around?” I’m going to borrow that on the tougher days. Thanks for being a source of support and love for me. Miss you and all of my LTYM mamas! xoxo
September 8, 2011 at 11:59 am
Deb Nies
Freaking Beautiful, Sara. Just like you.
September 8, 2011 at 12:05 pm
Sara
No YOU’RE beautiful. (And so on.)
xoxo
September 8, 2011 at 12:11 pm
Bill Finn
Sara, you are the living example of leadership through service. Leadership (emotional, personal, business, and more) is about achieving greater things by serving those around you. Know that you are achieving great things. No one can see down the path that you’re on tip-toes navigating. But when you call out directions back to us on the path, be assured that we’re listening and support you.
September 8, 2011 at 1:01 pm
Sara
Bill! Wow. thank you. You’ve left me quite speechless with your comment. So touching. Thanks. Also, we need to hang out and drink a nice saison together more often. xo
September 8, 2011 at 12:15 pm
thomas clifford (@tommytrc)
Sara,
This post touched me and to be fair, I cry on a dime, but this cry was a bit different. There is something about an unexpected note that makes it all so much sweeter and from a 5 year old to boot. As a parent of an almost 5 year old, I know what sweet letters I get from her.. I can just imagine what your letter contained. I’m pretty sure that all the while you were reading the letter, your troubles and pain just sailed away…What a treasure to be cherished.
September 8, 2011 at 1:05 pm
Sara
Aw Tommy, thanks.
It was the father who wrote to me this morning. But, I know what you mean about getting notes from the little ones, precious!!!
xo
September 8, 2011 at 12:24 pm
CarolV
As always, thx for continuing to share the joy and pain of the journey. And all your talents in between. You’re amazing. So glad to know you.
September 8, 2011 at 12:38 pm
Berni Xiong
That’s why I friggin love you! Keep being YOU, it inspires all of us! <3
September 8, 2011 at 12:57 pm
Dawn
You are awesome. This is awesome. And the way the universe seems to connect the right people at the right time is amazingly awesome. Love and health to you and to your young friend.
September 8, 2011 at 1:04 pm
Sara
Thank Dawn. They are a very special family. They send me as much prayer and support and love as I send their way. I can’t wait to meet them someday.
September 8, 2011 at 12:58 pm
Tammy Ankomeus
i’m convinced everyone has an angel and this family found their’s in you Sara.
September 8, 2011 at 1:02 pm
Sara
The beauty of it is, is works both ways.
September 8, 2011 at 12:58 pm
Dawn
PS, I so love that it was a LETTER. An actual letter. Not an e-mail. So much meaing in that simple gesture alone.
September 8, 2011 at 1:07 pm
Lynn Calicchio (@italianmama2)
I should not have read this during my lunch hour. Closing my door. Crying at my desk. Love you bunches. Thank you for being an inspiration and a real life hero. <3
September 8, 2011 at 1:38 pm
Sue Spaight
Sara, this is why I cry practically every time I see you. You have a unique way of cutting right through everything extraneous in life to the soul of what matters, from the terribly painful to the stunningly beautiful. You are raw power. Seriously. And every single time you share it, I am grateful to know you and for the perspective that helps the rest of us realize that many of our “problems” are just plan not all that dramatic and real. Truly, the world is a better place for having you in it. Much love, Sue
September 8, 2011 at 2:11 pm
Gail Swanson (@practicallyUX)
Without suffering and tragedy, we would forget our humanity and the beauty of each other. I am grateful that you are sharing your experience so that we may all share in the beauty and be inspired to help each other on this crazy rock spinning through the stars. May your kick-ass days out number your difficult ones!
September 8, 2011 at 3:50 pm
Sara
Well said, Gail. And thank you for the kind words. xo
September 8, 2011 at 2:51 pm
Angie N (@angnik26)
Thank you for sharing this, though anyone who has read this blog, your twitter feed, or been lucky enough to meet you in person already knows what you do for people in general on a daily basis. *That* is gangsta.
September 8, 2011 at 3:51 pm
Sara
Thank you for reading this, and for such a sweet comment. (And for thinking I’m still gangsta.)
September 8, 2011 at 3:56 pm
Matt Peters
I believe that when we’re at our lowest, helping someone else helps to lift our spirits. Thank you for sharing this. Thank you for being exactly who you are. In helping that little boy, you remind me of this line I read in college. I don’t know how famous or not famous it is, but I have always loved it:
“Each of us stands alone in this vast world, momentarily bathed in a ray of sunlight. And suddenly it’s night. If you stand together with me, we can share the sunlight, and believe me, the night won’t seem so frightening.”
~ Quasimodo
Thanks, Mama. I take refuge in your immense love for others and in the courage you show every day. And thank you for sharing the sunlight so this little boy doesn’t face the darkness alone.
September 8, 2011 at 3:58 pm
Sara
And now I’m crying again. That is beautiful, Matt. Your support and love keep me going. xoxo
September 8, 2011 at 4:02 pm
Mike Collins (@MRC58)
We love you Sara.
September 8, 2011 at 4:47 pm
Marjie Snyder (@triveragirl)
Ditto to what everyone has said so far. All the responses say it so beautifully… you are unique, there is no one like you and everyone that meets you is better for it. Thank you!! What can we do for you?
September 8, 2011 at 5:24 pm
extraordinarymommy
Sara – what beauty there is in this post, in your courage, in your strength and your willingness to help others. What a blessing you are to this family – and what a blessing they are to you – giving you a gift of perspective that allows you to *gulp* feel gratitude. A huge and amazing step – just one more reason you are remarkable. Sending all kinds of love your way – and to that sweet family you have adopted.
September 8, 2011 at 7:35 pm
Stacy
Fantastic! I love the shit out of you lady. xoxoxoxoxo
September 8, 2011 at 9:23 pm
Chris Sherman
Sarah, what beautiful words. Your words inspire me to be a better person. You touch more than you realize.
September 8, 2011 at 9:25 pm
Tom McCallum (@TomCayman)
Sara, first thanks to @ambercadabra for leading me here.
Second, your thoughts of “Because of what I’ve been through, I have the power to help others. That is worth everything” resonated with me.
One of the most important books I have ever read is Man’s Search for Meaning. It has been very important to me as well as many of my clients (I am a Business Coach).
We search for, we yearn for meaning in life. If that meaning comes from suffering that can, as you have discovered, give life powerful meaning.
Keep finding meaning and spreading it to others. Powerful.
September 9, 2011 at 7:20 am
lauragregorskiLaura
As soon as he gets a drivers license, he gets a Harley too!
What an incredibly moving experience. You and this little guy are both pretty amazing to be able to endure such difficult things. And it’s more amazing that you can lean on each other to find some peace in the chaos.
Sara, you never cease to amaze me with your strength and passion. Everything you do, (even then crappy stuff) you do with the most conviction and drive. Rock on, sista!
September 9, 2011 at 7:22 am
angeloakley (@angeloakley)
Just another reason why you made my top list of women who inspire. We each have our own journey’s with crosses to bear, and there are reasons for everything even though we often don’t understand – we have purpose – each of us. Sometimes what we go through feels terrible, but how we process and respond to it matters most, and it’s amazing to me how you continue to inspire despite your challenges. You are beautiful inside and out, and I am blessed to know you. Hugs. Blessings. And Many Thanks.
September 9, 2011 at 8:40 am
mama2nenes
So many beautiful comments on such an inspirational post. I love so many things about what that letter symbolizes. But most of all I love you.
September 9, 2011 at 9:05 am
Bob A (@BobRidesABike)
Once again, Sara, you have provided such an amazing and moving perspective. If everyone could approach life the way you do this would be an amazing world. Thank you for making it a better place! Best wishes…
September 9, 2011 at 1:08 pm
Wade L.
That was really nice, Sara. Thank you.
September 9, 2011 at 1:22 pm
Cuqui
I always need to set aside time to read your blogs. Otherwise, I’m blubbering in public. This did not disappoint. You are such an inspiration. It’s no wonder they reached out to you. Everytime we lose sight of who we are or what we mean to people, God will send a little reminder. THAT’S what that was. He’s got your back in this (much like your HSWT). You are blessed. And, you are LOVED. I’m so happy you exist. I’m so privileged to be a part of your life. XOXO
September 9, 2011 at 2:20 pm
Mitch Jurisch (@mitch_j)
I can’t really add anything that wasn’t already said in the comments, but I’ll echo the sentiments anyways.
In your shoes, it would be easy to play the victim card, curl up in the corner and cry “why me?!” I’m sure you’ve had plenty of that, because realistically, it’s the natural response to your circumstance. But what makes you so amazing is that you’ve overcome the victimization, and you’re turning this very bad thing into a very good thing. You were inspiring to me before you publicly announced your disease(s). Since then, when I think about what you’re going through and the fact that you’ve kept the humor, kept the snark, and kept on being consistently awesome, I can’t help but be in awe.
You are quite literally awesome.
September 9, 2011 at 3:58 pm
Meg Fowler (@megfowler)
I love this, Sara. Using your experiences to make someone else’s road less rocky is the most selfless way to respond to pain, and most people don’t have the strength or courage to do it. Thank you for making me think, for making me laugh on the Twitters, and for being someone who has a heart big enough to care about others when your own life isn’t simple or easy.
September 10, 2011 at 12:20 pm
holly
you, my beautiful friend, continue to inspire & amaze me!! i’ll eat you up, I love you so! xo
September 15, 2011 at 3:21 pm
Dianne Hadad (@DianneHadad)
Sara, you are a fearless warrior for “accepting your fate with gratitude” and for your awesome strength – thank you for inspiring me today. You have a beautiful gift, keep writing and sharing.