On September 27, 2014, I had the honor of sharing my story as part of the TEDxUWMilwaukee conference. I’m so very grateful to the organizers, the sponsors, and the incredible audience. (Seriously, if you were there, you know what I’m talking about, I can’t properly articulate how all of you made me feel, and you should know that I adore you.) While the videos from the conference are absolutely wonderful, there’s a feeling that you get when you are sharing stories live and in person, and I think we all, presenters and audience alike, felt something really special that day. For that, I can only say “Thank you.”
So, here it is. After nearly a two year hiatus from public speaking, I took the stage to tell my story. The story of how I found the courage to reclaim the things in life that I love most, and how I found that courage in someone else’s story. (Then, there are the note cards. I also talk about the fucking notecards.)
Someone Else’s Courage
Your ordinary life has an extraordinary story.
Give your stories the voice someone else needs to hear.
Someone Else’s Courage
(Your ordinary life has an extraordinary story. Give your stories the voice someone else needs to hear.)
We want to be inspired to do something that matters, and in turn we want to inspire others in a way that matters, that makes a difference. Something WORTHY of sharing. I think that sometimes, we all second-guess whether our own stories really matter. Maybe it’s time we ask ourselves if we have developed a warped sense of what matters—of what is interesting–or beautiful–or inspiring. In a time of unprecedented digital connection, we find ourselves intimidated, overwhelmed and disconnected from the kinds of experiences that nurture some of the best parts of ourselves. Maybe it’s time we ask ourselves if we’re missing the chance to share in the connection that comes from putting ourselves out there because we’ve assumed our stories aren’t “good enough”; that truly inspiring stories come by way of viral YouTube videos, and are measured in Likes and ReTweets, and that what we have to share seems “less-than” by comparison. Maybe it’s time to take back the moments we fill with distraction and resolve to be present in our own stories; to take the time to live in our stories and give our stories life.
My interest in telling stories and sharing stories runs deep. It’s what I love to do and what I do best. I’m a storyteller, and my love of writing and sharing stories is matched only by my love of reading, learning, and connecting with others through theirs. Still, even I’ve taken my own stories for granted in the past and, until recently, I underestimated not only the importance of all of my stories, but the strength and inspiration that comes from connecting to another person through theirs. I only recognized how important all of our life’s moments are when I began to lose some of mine.
I have an uncooperative brain. More specifically, I was born with a malformation in my brain and a malformed spinal cord. I have a damaged, uncooperative nervous system and an immune system that apparently has a lot of time on its hands, and can’t seem to tell the good guys from the bad guys. In the past several years, I’ve had surgeries on my brain and spinal cord, spent many nights secretly working from hospital beds, embraced new treatment ideas with hope, and traded failed treatment ideas with disappointment. I’ve learned to live with one “new normal” after another. Unfortunately, my collective disease state is degenerative, so each new normal takes a little more work to get used to. And, I’m generally pretty ok with that. With a little faith, a healthy perspective, and lot of support, I’m able to live a life filled with an immeasurable amount to be grateful for, but it isn’t without some frustration.
As part of the current state of my uncooperative nervous system, I developed intractable Epilepsy, a form of Epilepsy that cannot yet be controlled by treatments or medications. Epilepsy affects the brain in a staggering number of ways. It quite literally steals moments of your life away. The moments before, during, and after a seizure are often replaced with a black hole that destroys any memory of those moments and replaces them with confusion and fear. But beyond the time lost to seizure activity, there are serious short term and long term affects of seizure disorders, including memory loss and diminished cognitive function. Cognitive function is defined as: a group of mental processes that includes attention, memory, producing and understanding language, learning, reasoning, and problem solving.
The situation I’m in is now affecting my cognitive abilities.
This has proven to be one of the hardest things for me to accept. (Just the fact that, for the first time in my life, I’m holding note cards to tell my OWN story really pisses me off, but there it is and so it goes.)
All of this isn’t just hard to accept because I’ve always fancied myself a bit of a smarty-pants—because I totally am and I totally do—it’s especially upsetting because it’s getting harder to write. I’m a storyteller, and it’s getting harder to tell stories. I’ve always felt that as long as I could still write, could still tell stories, that the best of me remained intact. My ability to write, and do it well, has always served as a personal benchmark for holding on to my brain as it functions as me, Sara. If I can still tell a good story, I’m still here.
So yes, pieces of me are departing. And yes, pieces of me are already gone. But at what point do I lose me, Sara, the Sara I identify with, the Sara that has always been? How does that kind of transition even go? How do you even begin to wrap your head around that? (I still don’t know.) More obvious neurological and physical changes that have been happening for years, but on an afternoon earlier this year that the collective impact it has had on my life finally hit me.
I was looking through old vacation photos and lingered on a photo my husband had taken of me several years prior. The very first thing I thought as I stared at the photo of myself was, “I remember her.” As if I’d come across a photo of an old friend that I hadn’t seen in awhile. But very quickly, nostalgia turned to sadness. I felt an odd sort of panic, a need to scramble and catch her, and hold on tighter this time. I felt angry because I didn’t appreciate her enough when she was here. I realized that … I miss her. I wondered if my husband missed her too. Then a crushing, cruel feeling sat down on my chest.
My girls will never know her.
Because they were so young, the woman in those photos was gone before their memories could really take hold of her. More than anything, that was the thought that broke my heart. I wept. I sat on the floor of my closet so no one would hear me, and I wept. How badly I wanted them to know her. How badly I wanted them to love her. How terribly much I wanted her back.
I catch glimpses of her now and then, and in those moments I try to get her to stay. I tell stories about her. I cling to my memories of her. I secretly wait for her to come back. I play the part of capital-H-Her for as long as I can, until she’s tucked away in the crushing grip of a crowded, damaged brain, or whisked from my sight in the throes of an electrical storm.
Her departure was subtle enough not to stir my concern until she was far enough gone that I couldn’t reach her. To this day I tell myself that if I had noticed the small stuff, I’d have held her more tightly. I’d have chronicled her days with the most perfect words. I’d have written her lines so you could hear her laughter between the syllables. I’d have kept her safe from the storm. I’d have kept her stories for my daughters.
The Sara I am now has so much more to do that I can’t waste a lot of time ugly-crying-on-my-closet-floor over the Sara I lost. The Sara I am feels like less-than, but I’m trying, every day, to see her as different-than instead. I am trying to be kind to myself. I am trying to be patient with myself. Over the years, molehills have grown into mountains, and I’ve lost my footing time and again. So, I let go of more of the things I loved to do. I stopped traveling, speaking, writing, and teaching. I set out to conquer the flatlands, instead. I pretended it would be enough. The last time I spoke on stage was nearly two years ago, and I did so without Her, and it was miserably apparent. I wasn’t kind to myself about it, and my patience had run out. Something that had once been a labor of love had lost all the love. I haven’t taken the stage since…until today.
Today, with all of you, I’m back at the foot of the mountain. I’m unsure and unsteady, but I am finally unafraid.
I only found the courage to tell this story somewhat recently—and this is important—I found it in someone else’s story. Another writer had the guts to share her experience with her own uncooperative brain and the impact that seizures have had on her. She wrote about the woman she lost and the woman she became. I devoured her novel over the course of one night. Her words were haunting, terrifying, and validating all at once. And all the while I read them, my own words hovered over every page.
“Thank you for being brave enough to write this. I wish I was, but I’m not.”
Sometime after reading her story sharing it with others, and letting it live amongst my thoughts, my earlier sentiments began to change until I got to,
“Thank you for being brave enough to write this. Maybe I can, too.”
It’s getting harder to write, so I will just push myself write more. I figure if I write enough crap, something good has to shake out somewhere. I’ll challenge today’s distractions with more careful attention. And when I can’t find Her anywhere, I will just search harder, listen for Her more carefully, reach my hand out further, and when I just can’t reach her anymore, I’ll reach for a different hand and maybe I’ll find her again in someone else’s stories. And I will treasure the stories that different-than Sara has yet to tell.
All the stories, all the moments, the big stuff—the mountains–and the quiet moments in between—they matter, and while you may not lose them in the same way I have, if you don’t slow down, breathe them in, and let them take residence for awhile, you will miss out on some of the most beautiful connections of your lifetime, and I promise you that’s true.
We can all look back through photos and see the person we used to be. You don’t have to be sick to look back at something and wish you’d paid more attention, appreciated something more, or seen the inspiration that perhaps you missed before. But you might be able to get something back in a way that I can’t. And you can start by paying attention to the moments in your life that aren’t fit for Facebook. You can find the moments that move you, and you can tell the stories that grow from those moments, and the people that love you, –maybe people you don’t even know–will remember them, and they will carry them for you when perhaps a time comes when you’ve forgotten the words.
And I was wrong to underestimate my stories. So I’ve begun to share them as often as I can manage to get them from this ridiculous brain to the page. They do matter. They matter quietly. They matter to someone who needs to hear my voice on days when things weigh heavier on their shoulders than they usually do. They matter to someone who sees their own words in my story, at a time when they don’t think anyone else will understand. They matter to someone who needs to know that the unknown can be navigated, and survived, and that there are beautiful stories yet to discover. And that when they find the courage to return to the mountain, they don’t have to do it alone.
If you want to be inspired, you just have to start paying attention. When you start paying attention, the moments that inspire you will find a place in your stories. Give those moments your voice by any means necessary. Write them, dance them, build them, sing them, teach them, plant them, film them, paint them, honor them, SHARE THEM.
Your voice, your stories, will come through in the things you love most. AND THEY MATTER.
Being the voice that someone needs in the moment they need it matters. In small ways, in big ways, in ways you may never even know about, it matters.
And someone, somewhere, needs your voice, right now.
Copyright 2014 Sara Santiago All Rights Reserved.
If you have a guitar, and can learn a few easy chords, teach yourself to play 5000 Candles in the Wind by Mouse Rat. This will take you approximately four seconds to learn. Then, on a random school day morning, wake your children by quietly wandering into their rooms and playing it with a gradual crescendo until your children are standing on their beds with lighters** in hand, swaying and singing along with the chorus. This will start their morning off right. Offer them sugary cereal immediately after.
You will be the best mom ever.
Also, if your kids walk to school as mine do, you can wait until they are about a block and a half away, stand in the middle of the street, and belt out a 5000CITW chorus-only reprise. They will pee their pants laughing (sneak extra pants into their backpacks ahead of time), and the entire neighborhood will undoubtedly love you for it.
(This also counts as an Unsolicited Professional Neighbor Tip.)
** If you don’t provide your kids with personalized lighters, kitchen matches will work fine. If your kids have smart phones and wish to use them as the source of audience participation illumination, you are an awful fucking parent. What are they, like seven? Seven years old and you gave the little jerks a smart phone? You don’t deserve to sing about Li’l Sebastian. You probably don’t even deserve to live.
Have a great day, errbody.
My daughter is one, and we’ve been going to our community center a couple times a week for a toddler playgroup. I’ve become good friends with some other moms there, and I like that the center is close to my house and the playroom is clean. We have coffee and talk while we watch the kids play. It’s been nice because I don’t get much time to talk to adults these days. Now I’m feeling uncomfortable because one of the moms in our group recently went back to work, so she’s not there. After she went back to work the other women in the group started talking about her. They talk about how they can’t believe she went back to work, and that her daughter will suffer because she’s in daycare. One of them said that she shouldn’t have had a baby if she wasn’t going to be around to raise it. I feel so uncomfortable talking with them, but I do think that staying at home with my child is important, and I wouldn’t have gone back to work either. That’s the problem. I think that being a stay at home mom is best, but I don’t want to talk about someone that I like to hang out with behind her back. How can I tell them that even though I pretty much agree with them I don’t want to talk about her like that? I don’t want them to start talking about me and I know that some of them would disagree with some of the things I do as a parent. I want be able to go there without feeling uncomfortable, but I’m not sure I’m ok with the whole thing.
– Conflicted Mom
Ah yes, the Mommy Wars shit-talk strikes again. Whether it’s breastfeeding or formula, daycare or stay-at-home, disposable diapers or cloth, attachment parenting and whatever you call other types of parenting, mothers with strong opinions wage war on other mothers with strong opinions, and they fight for the right to feel superior over the other. What a crock of shit. While everyone has an opinion on these parenting choices, and everyone has the right to voice their opinions regarding them, somewhere in there, a number of women have decided that their opinions are the correct opinions and have commenced a full on attack of those who disagree.
If the women in your playgroup wish to voice their opinions in front of you, that’s ok. They are entitled to do so. In that case, you could choose to share or not share your opinion as well, and get back to blah blah blah and suck down your Starbucks. All is well. However, nasty remarks that accuse other mothers of bad parenting, such as the comment that the absent friend shouldn’t have had a baby if she wasn’t going to be around to raise it is, quite simply, someone being a straight bitch. I don’t think you’re upset with the nature of the conversation, but with the realization that you have been spending your mornings with assholes.
The situation you’re in really isn’t about this particular parenting topic. It’s about women talking shit about another woman behind her back. If there’s one thing I know for sure, it’s that you can bet your ass they’d do the same to you. You have to ask yourself whether or not you want to spend your time with people like that. Maybe you do. Maybe your daughter’s playgroup setting is worth putting up with them for a few hours a week. Only you can make that call. If you do, you probably want to keep in mind that these women will probably continue to say things that you don’t like. You have to choose whether or not you want to tell them that you’d prefer that they not talk about your absent friend. Just remember this, if you sit there quietly, not saying anything, then you’re being a shitty friend, too. Since it’s bothering you enough to write me, I’d guess that you probably aren’t a shitty friend. So, since you’re a grown-up and value friendship, let the bullies know that their shit talking isn’t welcome when you’re sitting at the table. Yes, they’ll probably turn their fangs on you later, but at least you stood your ground. If you’re scared to rock the boat (as many people are), look over at your daughter. Someday, someone’s going to bully her behind her back. Wouldn’t you want someone to stand up for her?
Like I said, I think your issue is really about how these women are behaving, and not so much the topic they chose. They happened to have chosen a very emotionally charged topic, one that brings out some seriously judgmental attitudes. But, no matter the topic, slamming someone who disagrees with you behind their back is just a dick move.
Good luck, and I hope for better coffee conversation in your near future.
I will briefly remark on this whole ugly issue of parents attacking other parents for having opinions that differ from their own, because this is my column and I can do whatever the hell I want. A note to the parents that know what’s best for everybody else:
Dear Judgy McShutyourface,
Don’t approve of another parent’s parenting choices? Feel the need to pass judgement on them because your choices are the correct choices, and anyone who disagrees with you is obviously a bad parent? That can really suck time out of your already busy day. I’m here to help, and I’ve got great news for you! It will free you of your self-imposed duty to inform other parents that they are (clearly) doing it wrong. Here it is…
It’s none of your fucking business. Period. Go spend your energy being the best parent you can be to your own child. You could start by setting an example for your child by not disrespecting others and/or saying shitty things about them behind their backs. Be a good role model and show your kid that Mommy’s not an asshole. That just might be the best parenting advice you’ll ever get. You’re welcome.
Perhaps the best apology in the history of the second grade. Largely because it incorporates a haiku. This was sent to my daughter, Grace, from her classmate, Owen, after he very publicly proclaimed that she has “buck teeth”.
Actual text reads thusly:
I’m very sorry for what I said about you having buck teeth. I know this will never happen again. Here is a haiku to show that I care.
I’m very sorry.
I’ll hope that you’ll forgive me.
This is how I care.
Owen was immediately forgiven, and Grace now keeps the note in her jewelry box. Excellent work, Owen.
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 causing issues 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.
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.
I’ll eat you up, I love you so.