A letter came today.

September 8, 2011 in Brain Surgery, Chronic Illness, Gratitude, parenting | Tags: , , , , , , | 41 comments

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.

These ‘experts’ are making me stabby: a mobile marketing rant.

July 29, 2011 in Mobile, mobile marketing, Roll Mobile, Sara Santiago, social media, Uncategorized | Tags: , , , , , | 9 comments

Things that make me stabby:

Why is it that the Mobile Marketing Association has a super crappy mobile web experience (redirects to desktop site two clicks in) and Mobile Marketer Daily sends emails that do not display properly on my mobile device?

Seriously, here’s what I got two clicks in when I tried to “Learn more”.mobile marketing association mobile sitemobile marketing association mobile experience

And here, Mobile Marketer is happy to offer me the chance to download their native iPhone app, but if I’m visiting their site via my mobile browser (you know, like if I clicked one of the links in the desktop formatted email I received), I guess I’m shit outta luck.

Mobile Marketer Daily

Why such a crappy experience from places claiming to be experts or sources of expert knowledge? I’ll tell you why. It seems today that a lot of people (marketers/experts) are more concerned with sounding smart, writing really smart blog posts/articles, generating ad revenue or conference revenue, feeling like social media celebrities, and pimping their speaking gigs, that they are perfectly fine with ignoring shitty user experience.

If you claim to be a “premier global trade association” or a “news leader in mobile marketing and media”, don’t you think you should practice what you preach? Hell, if you claim to be an expert in anything, you better damn well be able to walk the walk, right? Some of the first things my prospective clients want to see are examples of my work. Anyone can talk a good game, but the proof is in what they deliver. And truth be told, bad UX just pisses me off.

Seriously, walk the walk, “experts”.

Because you’re fucking killing me.

Word to Your Mother.

June 23, 2011 in BlogHer, Having Kids, LTYMShow, motherhood, mustache, parenting, Sara Santiago | Tags: , , , , , | Leave a comment

Last month, I was given the opportunity to bring a much loved blog-post-turned-movement-of-inclusion to the stage as part of the Listen To Your Mother Show, created and directed by Ann Imig and sponsored by BlogHer. I was so excited to share it with the audience at The Barrymore Theater. For those of you who may have seen the video, but are not familiar with how #MustacheLove came to be, read Mustache Love, Redux: Continued Growth. If you’d like to read the original post, click here.

Enjoy the video of Mustache Love, then come back to the LYTM YouTube Channel often to see all of these amazing writers read, writers from Madison, Austin, Spokane, Los Angeles, and Valparaiso…take a few moments and bear witness to their stories.  You’ll thank me for it.

Listen To Your Mother 2011 Madison Cast

Photo by Funky Monkey Photography

A Guy For That

May 25, 2011 in Family, social media, social networking | Tags: , , , | 9 comments

Note:

I drafted this post last Summer. I filed it away with a pile of of the “maybe someday” posts. The idea behind this post is simple, and so is the anecdote. I hesitated to publish it earlier because it felt it was *too* simplistic. then I had a “That’s the point, DUH.” moment and decided it was time to let this post fly. Enjoy.

I often think of my dad when doing business and building professional relationships. Social media growth has made me realize that I channel him more than ever, mainly because of a newfangled confusion over “the right way” to utilize social networks to build relationships, grow your network and your business. Folks want to make it seem pretty complicated. “Make sure you tweet links to your content at specific times, specific days, stand on your head when you tweet to get more RT’s…” While I love the analytics folks and I do get that patterns can be identified and leveraged when sharing content, none of that crap is the most important ingredient in building your social currency, reach, and trust. Recognizing that social media has allowed us to create a powerful word of mouth community, in much the same way our grandparents did within a small town, might be a step in the right direction. Maybe it’s time to go back to some old school thinking…

In recent years, I’ve brought up the idea that social media is really just helping us find (and be) “a guy for that” in a much larger (online) community . Throughout my father’s life, he has always had “a guy for that”. Whether it was a new car, a guy to come help hang drywall, a lawyer, a Las Vegas casino manager, a plumber, or the guy with the best garage for drinking beers and re-building hot rods. In his business, his vendors were always his “guys” too. He referred business only to the dependable, hardworking, honest guys.

Why? Because he liked them. He trusted them, and he knew he was giving a solid and valuable recommendation.

He also wanted to make sure that “his guys” got as much business as he could send. He wanted to see them do well. They always returned the favor. These guys built word of mouth networks that stretched worldwide. And it wasn’t just built on “what’s in it for me”. It was built on relationships, trust, and the occasional liquid lunch.

In my life and my work, I have my own network of “guys”. I’m the “guy” for many others. That’s how I approach building a sustainable network to grow relationships, reach, and business. Through the magic of the interwebs, I use social media tools to connect with “my guys” and see where I can be someone else’s “guy”. It’s been working since the dawn of time, the internet doesn’t change the heart of the matter. It’s about people. Making real connections. These connections can become real life conversions. If you aren’t a total douche, it’s a pretty good way to grow your business and tap into new networks.

For those of you that live and die by ROI, I have a story for you. (An example of “personal ROI”, if you will, but it demonstrated the potential power of your network, when built on nurtured relationships and trust. It had a tremendous impact on me.)

My grandmother died six years ago. My grandfather and all of my grandmother’s friends had passed before her. My father, my mom, my aunt and all of the children and grandchildren formed a receiving line at the foot of her casket. We figured maybe a few long-time family friends might come. It would be mostly quiet, and we’d just stand there and hold on to each other. This day was one of the hardest of my father’s life. And, although he would never trouble anyone for help and support through the day, the look on his face showed the need. The morning began quietly, as expected, but in the first hour something changed.

One by one, my dad’s “guys” began to file in. They all came. The plumber, the electrician, the lawyer, the used car dealer, the hot rodders, the Harley dealer, his vendors, everyone. They filled that chapel. Full. These guys and gals were more than just the sum of the functions they performed throughout the years. They had become something bigger than that. Over time, these people were many different things to my father, they were his “guys” in some capacity, and they knew how to give and take so that everyone grew. When my dad needed support most, they came and gave back something he had earned with each of them, respect.

My dad is retired now, but certainly active and social and still enthusiastically (and FREQUENTLY) referring business to his “guys” (and his “guys” kids!) whenever he gets a chance. His guys have earned it.

What would a network of “guys” like THAT mean to you? To your business? To your life? The next time you are fretting about what time of day to post something or how to tag something properly, stop. Stop fretting. Start talking. Go find YOUR guys.

NOTE:

FACT: Once my dad reads this, an email will go out to all of his guys, with a message like, “Sara’s talking about us again…it’s probably all over that Facial Book thing…”

AND: Last year, Chris Brogan posted a video on his blog of me talking about my dad and his network of guys. My dad and his guys had never heard of Chris Brogan before. Now they think he’s a freakin genius, for two reasons.

1. Chris *gets* what they have been doing their whole lives, and it works.

2. Chris put “Paul’s kid” on his blog, so he must be a damned smart guy.

Mustache Love, Redux: Continued Growth

May 3, 2011 in Brain Surgery, Confessions, Milwaukee, mustache, Twitter, Uncategorized | Tags: , , , , , | 19 comments

On Sunday May 8th, I will bring Mustache Love to The Barrymore Theater in Madison, Wisconsin as part of the Listen To Your Mother Show.

I wrote Mustache Love after my daughter told me about being teased for having a “little mustache” at school. Earlier this year, I auditioned for the LTYM Show with the piece, was cast in the show, and am now preparing to unleash the love upon a live audience. Reading over the piece in preparation for the show reminds me of how a little blog post, on a lesser known blog, somehow turned into a movement of inclusion and would inspire a community to come together and stand vigil over a friend in trouble.

It began with a hashtag. My homey, @TheBusBandit, retweeted my blog post and added #MustacheLove to his tweet. The response to the blog post was huge, both on Twitter, on the blog, via email, or in person. So many people showing the hairy-ass love, and sharing their own versions of #MustacheLove. The mustache was different for everyone. For some it was their weight, others, bucked teeth, acne, height, skin color, the list went on and on. Everyone had a “mustache”. Everyone.

#MustacheLove became more than just a blog post. It was a common thread, a right of passage, the act of breaking free of what is “pretty” or “normal” or “handsome” or “good”. It was acceptance. It was courage. It was reminding each other that we’re all okay, just as we are. Because as grown as we are, we still forget sometimes.

Then came the mustaches. They came from everywhere. Mustache jewelry, mustache window clings, mustache pillows, mustache photos, a group of my running buddies ran a route in the shape of a mustache just to make me smile. In 2010, I needed #MustacheLove more than ever. I had two major surgeries, needed to ask for help more than I ever had in my life, and had to come to terms with a very different kind of “normal”. The months after the first surgery brought a roller coaster of highs and lows, emotionally and physically. Three months later, I needed another surgery. I talked a good game, but I was scared, pissed, and tired. I was gaining weight, I walked with a cane due to my deteriorating gait, and I looked sickly and shitty all the time. As much as I knew how to help my daughter deal with self image issues, I started feeling uncomfortable in my own skin. And I knew better, right? Sigh.

Then something happened.

I logged into Twitter the night before my second surgery to find that hundreds of avatars had been slightly altered. There, I found the usual faces of my Twitter feed, with one addition. Each one of them was wearing a mustache. A friend had created a Twibbon that overlaid a wickedawesome mustache over all of their beautiful faces. That night, #gosarago was a trending topic in Milwaukee. It was a glorious mustache vigil that I will never forget.

On Sunday, May 8, 2011, I will read Mustache Love to an audience of hundreds. And it isn’t the same Mustache Love that I wrote almost a year and a half ago. The words are the same, with some small additions and edits, but it feels different. When I talk about the day I made the decision to let my own (impressive, btw) facial hair grow (for 6 months) to show my daughter that good people will love you no mater how hairy (or heavy, or buck toothed, or pigeon toed…) you are, I won’t just be thinking about the good people who will love you in spite of your mustache.

I’ll be thinking of all the people who will wear one for you.

It’s ok to let your blog go dark.

March 23, 2011 in Deep Thoughts, Random, talky talky, Uncategorized | 14 comments

Everyone on the internet always seems to be doing an awful lot of talking. Always. We talk about ourselves a lot. It seems we spend a lot of time thinking (talking, blogging) about ourselves, our businesses, our children, our issues… Anyway, there’s just a lot of talking.

Maybe not enough doing (?)

And not just doing so that we can talk about what we did on our blogs.

Just doing.

I get scolded a lot for not blogging frequently enough. I feel really flattered that anyone cares to read what I write. But lately, I feel like doing things more than I feel like talking about doing things, or talking about the things I did.

I think that’s ok. I think it’s ok for you to let your blog go dark for awhile so you can go do things.

To be honest, there are quite a few people that might benefit from taking the time to get out of their own heads for a while. To take it a bit further, there are others that would benefit from taking the time to take their heads out of their asses for awhile too. but I’m not going to talk about that today.

I’ve got some doing to do.

And I’m probably not going to report back about any of it. At least not for awhile. ;)

Later Gators.

The creepiest hotel room. [photoset]

February 2, 2011 in creepy, Random | Tags: , | 9 comments

This post is for the Twitter folks that wanted to see what my creepy hotel room looked like.

The following pictures were taken in my hotel room in the Wyoming dessert, during an ominous January storm.

I’m fairly certain that not everyone who has entered this room has lived to tell the tale.

During my stay, I woke in the middle of the night to unidentifiable sounds, only to have an inexplicable wave of fear wash over me. It occurred to me, more than once, that this is the sort of room that one might go to consider shooting oneself in the face. I stayed in this room for three nights. On the third night, I found an old, bloody bandage underneath my bed. Kinda made the Luminol jokes on day one seem slightly less funny.

 

There was no 1408 at this lodge. I got the next best room number.

Creepy misty pool.

Luminol, anyone?

I did not open any of these drawers the entire time.

This light fixture swung for no reason.

Ghost chair.

Creepy hotel bathtubface.

Open letter to the parents who can’t EVER seem stop bragging about their PERFECT children.

January 26, 2011 in Beer, Having Kids, Random | Tags: , , | 14 comments

My kids aren’t perfect. My kids brew beer. *drops mic*

.

.

A thank you letter that will never be enough.

December 21, 2010 in Brain Surgery, Chiari, Chronic Illness, Family, Friends, Gratitude, Syringomyelia, tethered cord | Tags: , , , , , , , | 15 comments

I’ve been struggling with a way to sum up this past year in one perfectly wrapped year-end post, all tied up with ribbons, nice and neat. I’ve begun this post countless times, always trying to find the best way to convey to all of you exactly what this year has been like. I have wanted to share with you how much your love and support (and mustaches) have meant to me this year. But it’s been a complete waste of time. I could never sum up what I have taken away from this year in one pretty post.

This year wasn’t pretty. This year was hard. It rocked me to my core. I am still fighting to reclaim much of who I once was, rebuilding pieces of who I want to be, and learning to make peace with the loss of things I can’t get back. Throughout this year, I felt an incredible range of emotions, from anger and fear, to acceptance and gratitude. The one thing I never felt was alone. In so many different ways, your tweets, your emails, your offers to help, your prayers, hugs and smiles, you guys helped me navigate through this year with hope and gratitude, and some days, maybe, just a little bit of grace.

Some of you, and you know who you are, sat at my bedside and held my hand. Others held my children, and made sure my family was fed. Some of you, without being asked, just kept showing up. It is something I will never forget, and those acts of kindness will shape the way my children live their lives and how they treat others. We are forever changed because once upon a time, a girl fell down, and an entire community came together to pick her up, dust her off, and carry her awhile until she could walk on her own.

I cannot think of any words of my own to express what I feel when I think back on this year. More than anything else, the thing that resonates most was more than just never feeling alone. You made me feel protected. Protected. That’s huge. It meant more to me than you could possibly know. There were times when it was harder than normal to pick myself up and get through one more treatment, one more hospital stay, one more fucking MRI. It’s those moments that I don’t talk about. I don’t tweet about them. Those are the moments that I have to dig deep. I have to forgive myself for feeling so weak, so sad. I have to pull it all back together and remember that my life is beautiful, even if this moment is not.  I remember earlier this year, sitting in the quiet, listening to this song, it made me think of all of you. Loving me, protecting me, never letting me stand alone, and I thought, “This is going to be okay.” You did that. I am forever grateful.

Timshel, Mumford and Sons



Thank you, for everything. I’ll eat you up, I love you so.

Unfixable

November 1, 2010 in Brain Surgery, Chiari, Confessions, Gratitude, tethered cord, Uncategorized | Tags: , , | 48 comments

For a long time I have been trying to figure out how to explain how it feels live with chronic illness. Every time I do, I wind up pissed, and sad, and to be honest, I just don’t want to talk about it any more. Most people want me to say that I’m doing super, just really, really super(!). I get a lot of “Are you all fixed up now?” They want me to say yes. If I don’t say yes, they are confused and maybe even upset. “But you had brain surgery! Didn’t that fix you?” Most times I just say, “Sure. All fixed.”

But it doesn’t work that way.

The goal of treatment for Chiari Malformation and Tethered Cord Syndrome is to stop the advancement of deterioration and nerve damage, to try to decrease frequency and severity of pain, and try to achieve a better quality of life. It’s not something that can be fixed, per se, it’s a condition that can be treated, with varying success rates. The problem with that explanation is that it bums people out, apparently. Then I find myself feeling like I need to make them feel better about it. So I make jokes. They laugh. Everybody moves along. This happens over and over. I explain it, people get all bummed out, I crack jokes. Except some days, there’s nothing funny about it. And I get tired of making other people feel better about my condition.

So, today I want to tell you that it is perfectly okay with me that my life might be harder than yours. This body is not perfect, but it is still here. It produced my life’s great work, my daughters. As long as I am here to be their mom, and to be Augie’s wife, I will respect this body, and I will not dishonor it by feeling sorry for myself. Every single day that I live, the good and the bad, there is someone who would give anything to have that day. There are people, some, heartbreakingly young, fighting for their lives every day. Some of them will not see tomorrow. When you feel like you need to pity me, please think of them, and re-think how you look at your day. I am not fixable, and yet I am sincerely grateful to be here. Please be grateful with me. Please try to understand that any improvement from my treatment, no matter how small, is a miracle to me.

If you see me falter when I walk, offer me your hand. If I cannot recall the name of something, offer a suggestion. If I cannot be with you because I am in pain, offer me your understanding. If I am feeling overwhelmed, and tired, and sad, offer me a beer and a kleenex, and for god’s sake, make me laugh until I pee my pants.

Just don’t feel sorry for me.

I spent a long time hiding all of this from all of you. I’m tired. I want to be me, just as I am. I just don’t want you to be all bummed out about it, mmmmkay? I don’t know exactly what the years will bring for me. I do know that I’m not going to sit around worrying about it. Whatever this body has in store for me, I’m ready to figure out how to work with it. It will very likely be totally fucking awesome.

So that’s it. I promise to be brave, if you promise to be okay with all of this, be okay with me, just as I am, unfixable (and unstoppable, suckas!). Wut.

And also, I’ll eat you up, I love you so.

Award winning jack-assery served with a smile.

It's gonna be random. It might not always make sense. I'm ok with that.

Mobile genius at work.

http://whyroll.com

Spring Break for Nerds.

See me at BlogWorld in Los Angeles.

BlogWorld and New Media Expo, November 3-5, 2011

Hear Me Read at Listen to Your Mother 2011 (video).

Hear Me Read!

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