It’s difficult to adequately explain what it feels like to have a serious degenerative illness and have to listen to the barrage of ignorant or callous (and all too often, both) political rhetoric surrounding healthcare legislation. Like most people, I’m angry about the constant disingenuous spin on the health of the ACA and the manufactured need to repeal it rather than attempt a bipartisan effort to improve it. But the thing that bothers me the most is a big part of why all of this is happening in the first place, lack of empathy and the seemingly growing number of people who are unable to show compassion for people who’s life experience is different from their own. Instead of trying to understand each other better, it’s easier to manufacture a narrative that justifies discriminatory behavior. If you label groups of people as other-than-you, it’s easier to dismiss them. “Twenty four million people will lose coverage under this plan? Well, then they should stop being poor. They must be careless with their money, why should I have to contribute to their well being?” “Lifetime coverage limits cut off your kid’s chemo treatment? Where’s your life savings? Why don’t you sell your house? Start a GoFundMe page. It’s your kid, figure it out.” Basically, poor people need to stop being poor, and sick people should’ve planned better.
All of this other-ing and distancing of oneself from entire groups of people makes it easier to be flippant when discussing ideas that benefit one group to the other’s detriment. For instance, throughout all this debate around healthcare, people who spend a lot of time justifying legislation that would allow insurers to discriminate based on a patient’s medical history often talk about “the sick” as if it’s a term for some hypothetical life experience of a nameless, faceless group entity. I get a similar impression when people throw around terms like “pre-existing conditions”, “lifetime coverage limits” and “high-risk pools” as if these details aren’t really a big fucking deal. I realize that, for generally healthy politicians and pundits, these terms are just talking points. They don’t seem to want to acknowledge the real-life (and death) gravity of their words as they dance around the consequences of proposed legislation that would remove the very consumer protections that people’s lives depend on, that my life depends on. Perhaps it’s because they’ve had the good fortune to be generally healthy, or perhaps they just aren’t capable of taking an empathetic stance on issues that don’t directly affect them. (Or perhaps they don’t give a shit because they’ve got a tax break to deliver.)
I guess what I want to say, at the heart of it, is this:
I’m not “other”.
I’m not a nameless, faceless, abstract entity.
I’m not broken, I am disabled due to disease, but that is just one small part of all the things that I am.
I’m not lazy or irresponsible and I didn’t do anything to deserve what happened to me.
My name is Sara.
I have silver hair and a crooked smile.
I’m a wife, a mother, a daughter, a sister, an aunt, and a friend.
I have my grandmother’s uncontainable cackle-laugh.
I’m a listener and a storyteller and a painter and a woman and a human.
I might even be a lot like you.
And I’m just trying to make it to tomorrow.
Thanks for reading.
Go do something good today.
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.
Yesterday I had the incredible honor of speaking alongside nineteen brilliant presenters at the very first TEDxUWMilwaukee conference, sponsored by (the generous, engaged, and incredibly supportive folks at) Northwestern Mutual. I sit here, just hours from the event, still buzzing with the spellbound feeling that comes with being a part of something really extraordinary.
Above all else, my heart is full of immense gratitude for the opportunity to be a part of the experience we shared as we journeyed through the day together. While the world scurried around us, we entered a small campus theater as strangers, loosely connected in our desire for new ideas and inspiration. The palpable excitement shared by everyone in the theater, the organizers, speakers, sponsors, volunteers and attendees, was matched with a warmth and conviviality that we could feel in the very first moment that kicked off the day, and it made me absolutely giddy. (Me. Giddy. Yeah, let that one sink in a minute. Gross. I know. Let’s move on.)
Throughout the day, I had the chance to talk to many folks in audience, and they all shared the same sentiment, “Every single speaker has been incredible!” I think that we all approach something like a day long conference expecting (hoping) to hear some really great talks, but also recognizing that with a group of twenty different speakers, it’s likely that some of the topics fall outside our area of interests, and/or we might not connect with a particular speaker. It happens at every event, it’s totally normal, but OVER and OVER again, people were sharing their excitement about ALL of the talks. One particular comment I heard quite a bit was that the entire line up was strong, and how impressed and excited folks were to discover that. When we emerged for that first intermission, people were beaming. It was fucking glorious.
Obviously, none of that happened by chance. The event organizers have been working for nearly a year to curate and produce an awesome TEDx event. They worked with all of us (speakers) for months, helping us shape our ideas, improve our approach, and helping us translate the passion we feel for the ideas we want to share into a talk that resonates. They brought us together in various smaller groups throughout the summer to give us the chance to help each other through the development of our talks. These curation meetings were such a huge part of what made this whole experience so special for me. On the evening of my first curation meeting, I showed up to join this diverse group of really smart people who are doing some really incredible things, and I felt pretty intimidated at first. But this group, the speakers and the organizers, weren’t just brilliant thinkers. They were humble and kind, and I think maybe we all shared in a little bit of intimidation at first. Of course, it was short lived, and I left that first meeting feeling extremely fortunate to find myself on a team of really excellent human beings.
Working as a group improved and enriched my talk to something I couldn’t have done on my own, and exchanging criticism and offering suggestions was easy to do with this group because every single one of us wanted everyone else to succeed. For my part, I found myself also wanting to give a really great talk, not just for myself, but because I wanted my contribution to convey the respect I have for this group, and I wanted my talk to be a reflection of the amount of work that everyone involved put into this conference.
For me, yesterday was an incredibly beautiful and humbling experience. The number of people who so generously shared their own stories with me after my talk is something that will stay with me always.
The faces of the people who approached me to share a hug, a laugh, a couple rogue tears, or a simple “Thank you for sharing” are seared in my heart, which is perfect, because while my brain can’t always be trusted, my heart will never forget.
Stay tuned for follow ups on re-caps, photos, and the videos! This shit’s gonna be bananas. xoxo
A couple weeks ago, Nora came in the house after school in tears. Joe, our adored school crossing guard, passed away the Thursday night before. Until we became a Clement Elementary family (#ClementAve4life), I had never seen an entire student body have so much love and respect for a crossing guard. No one, and I mean NO ONE, ever crossed that walk without a, “Thanks!” Or more often, “Thanks, Joe!” And he knew these kids’ names. I don’t know how he kept up all of the crosswalk conversations, firing from east to west and west to east, but he did.
Of course, the Santiagos loved him, too. He was good man, a neighborhood icon, and the only person I’d ever seen unlock the old police call box on our corner and actually use the phone. (Seriously, my mind was blown — he had the key to a TARDIS?!)
Joe was the guy in the neighborhood who had been 90 years old for 25 years. He was a man of few words, unless he was talking about college basketball, football, or talking to one of the Clement kids. Any other time, you might get a “Have a nice day.”, or more often, his trademark answer to a question or response to a salutation, “Okay.”
I *lived* for that okay. We adopted that okay in our daily vernacular. Never in a mocking spirit, but because it made us happy. We loved Joe like a mo’fo’. Joe was a-o-kay.
For the last five years, I was determined to get more than my daily “Okay.” from Joe. When I finally did, it was more than I could have hoped for. It was at the very end of after school pickup, and I was the lone person waiting to cross the street. As I stood at the corner of Wilbur and Clement, waiting for Joe to blow his whistle and give me the signal to cross to the east, a car made a last minute right turn right in front of my feet. Joe looked pissed, y’all. I looked at the driver and, in my best Bronxish accent, yelled, “Hey! I’m walkin’ here!” She proceeded to park with the back half of her car in the crosswalk. Joe began his best pissed off shufflestrut towards her. When she got out of her car, before he even had to say a word, I said to her, “No problem, Cupcake. Just park right in the crosswalk. Where the kids walk. Way to not give a shit.” After she shot my her very best bitchface and began to cross the street, outside of the crosswalk, I called to her, “Hey! We’ve got a crosswalk here, just for you! Okay then, you keep being awesome!” I began to cross the crosswalk, smiling at Joe. That’s when it happened.
Joe laughed. A quiet chuckle turned into a full-on laugh. (I made Joe laugh!) Afterward, I called Augie at work to tell him. I’m totally serious. From that day on, my daily “Okay” always came with a big smile and a knowing nod. One day, for about 30 seconds, we were a team. It was like I got to be Joe’s companion.
Later that year, Augie and I were invited to a special coffee and cake event for the school’s dedicated volunteers. I was seated right next to Joe. We actually got a chance to have a nice chat. I confessed my sheer joy at making him laugh. He laughed (score!), and gave me a hard time about it. Met his wife. Forgot to ask about the TARDIS. I’m not proud of that.
Joe was laid to rest at Holy Trinity Cemetary. We were honored to know him. He was a nice man, a dedicated volunteer in many capacities, and he made sure our kids got to and from school safely. His wife wrote to the students after the funeral. She told them, that during his brief stay in the hospital, all of the cards (hundreds) that the kids sent to Joe were read, cherished, and hung up in Joe’s room. Every wall was filled with love letters made of loose leaf and heart shaped construction paper cards, all smeared with glitter and paste and crayon and fond get well wishes. She further told the kids that Joe wanted them all to know that it gave him a lot of joy to se them every day, that he loved them all, and that he knew he would pass away surrounded by their love.
The other day, Nora came home from school in tears, again. She said that some of the kids built a big mound of snow with a cross that said, “We miss you Joe”. The junior crosswalk assistants hung their reflective sashes on it. Nora went on to say that she started feeling really sad when she saw it, but when she was looking at it, the new crossing guard told her to hurry up and get across the street. That’s what really made her cry. “Joe would never do that, mom.” I know, honey, I know.
And, perhaps one of the most important things to know about Joe… We have decided that he was a time lord. It all adds up. And, in this house, we love us some time lords.
Nine: “Before I go I just want to say you were fantastic, absolutely fantastic. And do you know what? So was I.”
Ten: “I don’t want to go.”
Eleven: “I will not forget one line of this. Not one day, I swear. I will always remember when the Doctor was me.”
WHO: All the Southsiders
WHAT: Spaghetti Dinner
WHERE: Church Basement
WHY: Helping people. Duh.
HOW: ’bout dem Packers