A lot of people ask me for advice on how they can help their loved ones who have chronic, degenerative or terminal illnesses. They especially want to know what to say, how to talk about illness, and feelings, and fear, and all the awful things. I can’t speak for everyone, but I can offer what I know, what I feel, and how my friends and family have helped me.
There are a lot of ways to respond when a friend with degenerative illness shares with you the latest shitty (and scary and often humiliating) ways that their body is breaking down, or the horrible treatments they endure, or the conversations with doctors that are heavy enough to crush even the most valiant among us. People tend to say things like, “It’s going to be ok.” or “But you look great.” or “Have you tried [some shit I read about on the Internet]?” or “You can beat the odds, and maybe they’ll find a cure…” or at least something that sounds helpful or hopeful.
And it’s hard to know what the fuck to say to someone you care about when shitty things are happening to them, because you want those things to NOT be happening to them. You want to make it better, or at least easier, and you are totally freaked out about saying something wrong. (And we know you love us. We know your hearts grow heavy for us. We don’t talk about the hard stuff often because we love you and don’t want to hurt you either.) But, in that moment, we don’t want to hear that it’s going to be ok. It’s not ok. It won’t ever be ok. And we’ll figure some shit out and adapt. But, in those moments that you manage to get us to talk about it, those times when we don’t gloss over it and change the subject, don’t freak out. Just listen.
Listen to what we say.
And let it be shitty.
Let us be sad or pissed or tired or defeated. We won’t always feel that way. But if we tell you the truth, (the stuff we usually don’t share because we don’t want to bring everybody down all the goddamned time), it’s because we need someone to be with us in that particular shitty moment. Don’t try to make it better. Don’t try to clean it up. It’s messy and awful, and we’re hoping with all of our might that you’ll just be there with us in that moment. It’s a place we usually visit alone.
We stay there for a little while sometimes, and before we can climb out and try again tomorrow, we have to
Our most vulnerable selves are peeking from under the blanket, for the chance that you’ll stay, for the chance that your hearts love our hearts enough to sit in the messy and the awful for just a little while.
It takes a real friend to say, “Well that’s goddamned horrible.” and then pour a drink or make a snack and let us talk, and cry, and laugh that not-really-funny-but-I-don’t-know-how-else-to-cope laugh about how fucking seriously ludicrous it all is.
So, my advice to you and your worried heart is: Stay.
Stay with us in the awful moment. It’s a lonely place and invites to join us there might be rare, but if you get one, please accept.
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.