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.
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
I’m often asked, and I’ve often promised to share how Genevieve and other seizure alert and response service dogs perform their duties. Today, I’m making good on my promise, so here goes.
Genevieve stays with me after a seizure, keeping watch for any more.
For the best bit of background on how this all works, I’m going to quote the Little Angels Service Dogs website directly, then go into my personal experience. They are the amazing folks who raised and trained Genevieve to be such an amazing service dog. To say that I am grateful for them is a gross understatement.
First, from Little Angels Service Dogs:
The dogs who alert naturally to seizures are the dogs that care; these dogs are distressed that their beloved handler is having a seizure. Why do they care you ask? Because they are naturally anxious dogs by breed and personality. Many of these dogs are displaying outward signs from their distress of knowing their handler is about to have a seizure, such as barking, whining, pacing, clinging to their handler, etc., but many other dogs are alerting in their own way by yawning, licking their paws, or hiding in another room, of which are all also signs of distress from a dog – it is just that in many of these cases the handler would never put two and two together; that their dog is licking its paws 20 minutes before every seizure for example. But in the hopes that the dog will naturally alert in a visible way trainers will hand-pick dogs who are naturally anxious, hoping that the dog will inadvertently alert the owner before the seizure occurs
This is where we go further.
We do not believe that only anxious dogs can sense seizures – we believe that ALL dogs can sense them – but that not all of them care. So how do we get them to care?
We play what is called ‘the Alert game’ with our dogs. When we say ALERT the dog is trained to paw at our leg to get a tasty treat that is reserved only for this amazingly fun game. The dog starts to LIVE for this game! They can hardly wait to play it. Then here comes the miracle …
When the disabled recipient comes to San Diego for Handler Training we show them how to play the alert game, and we make certain the dog loves playing it with their new handler…. Then we cut off the game.
We instruct the disabled recipient to only play the game right after they are recovering from a seizure. Pretty soon the dog realizes that the only time they get to play this amazing game is when their handler has a seizure. The dog senses the chemical changes in their handler’s body – they know a seizure is about to happen – they know the game is about to happen – and they come over and paw at their handler’s leg to play the game.
The dog is saying, “Hey, it’s time to play the game!”
The handler knows, “My dog says I’m about to have a seizure.”
All we need is a dog who pays attention to their surroundings, and a dog who likes food. We don’t have to guess anymore about what dog is anxious enough, and how might the dog inadvertently alert to the seizures, and will the dog ever put two and two together.
We truly hope that more trainers pick up on this – we won’t care that they are using our techniques – after all, we are here to help as many people as possible.
Incredible, eh? Now, for more specific info as it pertains to myself and Gen. I’m sure there are variations as to how individual handler teams accomplish their day to day tasks. This post is how Gen and I accomplish ours.
What may be a life saving alert to me, is really just a game to Gen. From a very young age, she was taught to play the “Alert” game. Her trainer would give her a verbal command, hand signal command, and expose her to a glass jar containing a collection of gauze containing my seizure scent. (In the weeks following approval of my application, I swabbed the insides of my cheeks and the palms of my hands with gauze squares after a minimum of three separate seizures. This provided a pretty good likeness of the scent of the chemical makeup of my body when in an ictal (seizure) state.) When she pawed the trainer’s leg, she was rewarded with a treat. Over time, the trainer would omit the verbal command, then the hand signal, ultimately leaving my scent as the only prompt for her to play the game. When she caught my scent and alerted, she’d get her treat.
Little by little the trainer would add layers of complication. A trainer might hide the scented gauze in a pocket so Gen couldn’t rely on the visual presence of the scent, or open the jar containing my scent in a different room in the house so that in order for Gen to play the game and get her treat, she’d have to recognize the scent from another room. Over time, Gen would learn that any time she caught that scent, it was time to play the game and get rewarded. Now, when Gen catches the scent of my seizures, she alerts me so that I can get to a safe place. My love and praise is reward enough for her these days.
To take things a step beyond just alerting, Genevieve has been trained to do several things automatically after alerting me. Again, she learned to perform these tasks as super fun games that when performed perfectly earn her treats, praise and all the lovin. She has two general variations to her “Seizure Response” sequence, one for when we are at home, and one for when we aren’t. When we are at home, Genevieve performs response tasks as follows: After I am seated or laying on the floor in a safe spot, she performs “Dial”, which means she goes to her special K9 Response phone and pushes a large yellow button. This calls my husband’s cell phone. She then returns to me to perform “Paws Up”, or deep pressure therapy, by laying her full body weight over my calves. She does this until she’s given the “Off” command, no matter how much I tremble, shake, or jerk. (If I am sitting in a chair, she stands on her hind legs and places as much of her body weight on my lap as possible.) When I regain consciousness, I may need her to retrieve my phone or medication for me. I keep necessities and information for emergency responders in the zippered pockets of her service vest, and she will go find it and bring it to me when given the “Vest” command. When we’re in public, she performs the same response duties as outlined above, but omits the the “Dial” task. Obviously, there’s no K9 phone to dial when we’re not in the house. Gen also assists me in getting up and regaining my balance after a seizure, as I am often a little off kilter. We worked (and still work!) very hard practicing these two separate sequences, sequence 1 only at home, and sequence 2 only in public.
One of the personality traits that make Gen such a good fit for Seizure Alert service is the fact that she is a highly sensitive dog. Changes in my body (such as the chemical change that creates my personal seizure scent) become more apparent to her the more we work together as a team. Because of that sensitivity, she alerts earlier (giving me more time to get to safety) now than she did the first time she alerted to my scent. If you spend any amount of time with Gen and I, you’ll immediately notice how focused on me she is. Whatever I do, wherever I go, she is watching, totally tuned into my every move. Any moment could be the next chance to play the “Alert” game, and she’ll be handsomely rewarded! (While she sure does get plenty of tasty treats, Gen is an especially affectionate dog, and verbal praise along with scratches and cuddles are her preferred “treats” from me. I am her human, and no one else loves her up like I do. *wink, smile*)
Epilepsy is only one of the several neurological disorders I have, and there are times that my body is in distress, either from pain, muscle weakness, and sometimes from episodes where I suddenly lose sensation in some of my limbs, lose depth perception, and/or ability to coordinate my gait properly. During these times, she becomes especially concerned/engaged and will not leave my side for a moment. She exhibits similar behavior when I experience episodes of extreme confusion or frustration. These are times when her ability to retrieve things like my phone are really important, she becomes my connection to human assistance.
Before Gen came to live with us, I had found myself in extremely dangerous situations, having been in an altered state of consciousness, but still ambulatory, as is sometimes the case with some of my seizures. One particular type of seizure I have is sometimes referred to as a “flight seizure”. I might appear to be conscious, hell I might even walk right out the door, but I’m not. In addition to finding myself in strange places with a “How the hell did I get here?” feeling when I came to, I have broken my nose in several places (ripped my right nostril clean through, y’all) regaining consciousness to find myself in a puddle of blood and a broke-ass face, found myself teetering at the top of the attic staircase, awakened on the floor of my bathtub, and enjoyed my share of black eyes from falls while having a seizure. I have been lucky to have only suffered recoverable injuries.
Another terrifying situation is the seizure that doesn’t stop, or a cluster of seizures that continues to cycle without stopping. I’ve been there. To date, the most terrifying night of my life. I did not know if I would survive it. During the extended seizure, I wasn’t able (obviously) to call for help, even though my family was home, all asleep in their beds. We know it lasted more than half hour, and after piecing together as much information as we could, we suspect it was upwards of 45 minutes when we include a cluster of several seizures after the initial event. During the few seconds of spotty and confused consciousness I had, I was not able to see, nor talk. I knew, however, that somehow I had gotten onto the steep attic staircase.
In the (maybe) two seconds at a time (none of it makes sense, and there aren’t words to properly describe) I had before I would again lose consciousness, I had time for, and remember pieces of three thoughts.
1.) “Open your eyes. Open your eyes. Open your fucking eyes.” (They were open.) And then I was gone.
2.) “Scream. Please scream. Scream for Augie.” (I could not speak or make sounds.) Gone.
3.) “Please. God. Not here, it would be Gracie that finds me in the morning. Please, no.” Gone.
Ultimately, Augie did wake. Suddenly I was looking at him. I don’t remember anything else from that night or the following day. Augie records video, takes photographs, and keeps notes on as much of my seizure activity as he can. It’s often the only way I know what happens before, during, and immediately after a seizure. Back to the point I’m trying to make, though. I wasn’t even alone. My family was home, and still I could not get help. If Genevieve had been with me that night, Augie would have called an ambulance after five minutes.
So, there’s the short version. Here’s the even shorter version. Genevieve is a miracle. To me, to my family, to the people that like having me around. Her job is to keep me safe.
I guess you could say that she was born and raised to save my life.
For more information on Little Angels Service Dogs, please visit their website. The mission of Little Angels is to place service dogs with disabled individuals no matter their financial means. They rely on donations from people like you and me to provide this life changing opportunity to disabled people all over the country.
I’m considering adding some additional hardware to my previously upgraded brain. Consideration for any additional parts is hard for me, no matter how big or small. This one’s called a vagus nerve stimulator. No brain surgery would be required this time (yaya!), just a simple procedure to implant a small device into my chest and feed the wiring up to my neck to attach its leads to the vagus nerve. The device stimulates the vagus nerve and can potentially halt some seizures in their tracks or at least make them shorter in duration and severity. It isn’t a cure for my seizures, but combined with the medications I take, it may improve my situation. As with anything, it comes with risks, and having gone through my fair share of medical procedures and various treatments with varying levels of success, I need to take the time for careful consideration of all potential outcomes. Aside from the fact that I have intractable or “refractory” Epilepsy (Epilepsy that does not respond to medication therapy), I’m considering this option because the damage from a specific type of seizure activity I have is now clearly affecting my cognitive abilities. I’m getting “dumber”. (Jokes are welcome, but only if they are really, really good. I’m still an asshole at heart, and it’s still potentially funny. Sometimes. Bring your A-game, fuckers.)One of my greatest fears is slowly becoming reality. I don’t know how to process this, yet. I don’t know how to glean the positive from this. I don’t know how to turn this one on its head and shape it into something ok. All suggestions, other than feeling sorry for myself, are welcome.
I’ve taken many aspects of this in stride, because I’m fucking awesome, of course. But this one is the hardest. It’s getting harder to write. 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, serves as a personal benchmark for holding on to my brain as it functions as Sara. If I can still tell stories, I’m still here.
Perhaps pieces of me are beginning to depart. Perhaps, if I’m being honest with myself, pieces of me are already gone. (Yes, Sara. They are.) At what point do I lose me, Sara, the Sara I identify with, the Sara that has always been? Will there be a point when I don’t even notice these changes at all? It’s kind of a giant mindfuck, to say the least. Tears have been shed, sleep has been lost, and I’m tired of expending my limited energy on it, but there it is.
Physically, changes have been happening to my body for years. I remember the first time that fact really hit me, like roundhouse to the face kind of hit me. I was looking through photos from when Nora was almost one and Grace creeping up on three years old. We were at the pumpkin farm on a sunny day in October. The visit to choose the perfect pumpkins for beautifully imperfect jack o’ lanterns was fun, and the photos are great. I lingered on a photo of me holding Grace in the pumpkin patch. The very first thing I thought as I stared at the photo of myself was, “I remember her.” A profound sadness washed over me. Then all the feels all at once — I felt a boot kick to the pit of my stomach. I felt an odd sort of panic, a need to scramble and catch her, and goddammit hold on tighter this time. I felt angry because I didn’t appreciate her enough when she was here. I felt like someone should mourn her, at least for a minute or two. I decided to take those minutes, and maybe a few more. Then I quietly realized that … I miss her. I wondered if Augie missed her too. Then something bigger hit me. A feeling I can’t yet describe properly. A crushing, cruel feeling sat down on my fucking chest.
The girls will never know her.
They were so young. She was gone before their memories could really take hold of her. More than anything, that was the single most heartbreaking realization I had that day. Maybe ever. 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 Her for as long as I can, until she’s tucked away in the crushing grip of an angry, crowded, damaged brain, or whisked from my sight in the unforgivable throes of an electrical storm.
She left with stories untold, things undone. Her departure, not all at once, was subtle enough not to stir my concern until she was far enough gone that I couldn’t reach her. I convince 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.
The Sara I am has so much more to do that I can’t waste time lamenting over the Sara I lost. The Sara I am feels like less-than, but I’m trying, every fucking day, to see her as different-than instead. I am trying to be kind to Her. I am trying to be patient with Her. The last time I spoke on stage I did so without Her, and it was miserably apparent. Something that had once been a labor of love lost all the love. I haven’t taken the stage since. Over the last year, molehills have grown into mountains, and I’ve lost my footing time and again. So, I let more old loves go. I set out to conquer the flatlands, instead. I pretended it would be enough. Realizing that it is becoming significantly more challenging to write snapped me back from a comfortable haze of “fuck it, I’ll take the road already taken” complacency. It’s not enough. So, I’m diverging again. If it’s getting harder to write, then I will just write more. When I can’t find Her anywhere, I will just search harder, listen for Her more carefully, reach my hand out further, but more than anything, believe that the Sara who is different-than is worthy enough to walk in Her stead while She is gone. I might even acquire more hardware if it means it will guide Her back to me when she can’t see her way through the storm.
In September I will take the stage again. This time to tell our story, Her’s and mine. It might be a disaster, or it might be the talk of my lifetime. It doesn’t really matter which. What matters now is that I do it, that I keep telling stories. Whether I think I still have the chops to tell them “just right”, or I can only manage to puke the words out for someone to try to piece into something coherent, I have to tell them. Fancy robot parts or not, if I stop trying, if I stop telling stories altogether, she’ll never have a beacon to follow. If I surrender our voice, she may never return at all. I don’t know how it will all shake out, but I’ll tell you more about it soon. Perhaps you will join me on that day, and whether it’s a beautiful summit, or a glorious disaster, at the very least, it’ll be one more story to tell.
I’ll eat you up, I love you so.
The company that manufactures the vagus nerve implant has the word cyber in its name. This kind of “wearable tech” ain’t for pussies, so it just might have a home in Sara 2.0. Booyah. (Original SkyNet Matriarch, FTMFW.)
Stay tuned, turkeys. There are (many) more stories to come.