Tagged: Epilepsy

TEDxUWMilwaukee: Sara Santiago – “Someone Else’s Courage”

TEDx UWMilwaukee Sara SantiagoOn 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.

A Seizure Alert Service Dog: How Genevieve Does Her Job

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.

2014-05-28 18.08.32

 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.

That’s it!

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.

Airplane ride.

Airplane ride.

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.

Dial

K9 service phone.

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.

2013-03-03 09.35.35Before 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.

Awesome.

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.

2014-06-13 21.26.33

Recently posted on Facebook by my husband, Augie.

I guess you could say that she was born and raised to save my life.

2014-06-13 21.26.39

Sometimes, the best thank you is a hug.

 

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.

2014-05-28 18.23.21-2

“It’s a like pacemaker for the brain” and (many) other stories.

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. VNS ImplantIt 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. VNS ImplantAside 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.

***

Also.

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.

 

A dog took a shit on a plane, and I’m back to writing.

After my March stint in hospital jail, I tumbled into weeks of new-meds-feel-like-shit-more-new-meds-more-shit-repeat. We’ll call it a rough patch and stop crying about it now. Mmkay? Mmkay. I wrote quite a lot in that time, but didn’t publish a lick of it. There’s some good stuff in there, and I’m going to start publishing again, but after a review of the full body of writing, much of it is just a bunch of crap.

Speaking of crap, several days ago, a US Airways flight traveling from Los Angeles to Philadelphia made an emergency stop in Kansas because an alleged service dog took a crap in the aisle, not just a regular crap either, full on diarrhea … several times. Unable to keep up with the clean up, running out of supplies, and with passengers dry heaving in each other’s laps, the captain made an emergency landing to have the cabin properly scrubbed.

Screen Shot 2014-06-02 at 12.00.46 PM

Owner and dog. Via Chris Law’s Twitter feed.

My immediate thought should have been, “Oh no, what happened? What went so wrong that the dog was uncontrollably sick? What a nightmare for the handler!” (Insert other sympathetic, nice person type thoughts here.)

But that’s not at all what I thought. My first thoughts, rapid fire style:

  • Did anyone find out if it’s a legit service dog?
  • Why isn’t the dog wearing a vest for identification?
  • Given that it appears the dog was actually sick, having uncontrollable diarrhea, what kind of handler would take a sick service dog on a plane? (Hint: We wouldn’t.)
  • How could a handler NOT know that her service dog was sick? (As a handler myself, I can tell you that the health of the service dog is my top priority. None of the (3) dogs I’ve handled ever had so much as a broken nail without me knowing about it. We are a symbiotic team, I can sense a mood change in my service dog at a glance, and given we are together 24 hours a day, we read each other’s needs countless times a day. Missing an illness as severe as to produce explosive diarrhea would be a VERY rare occurrence.)
  • If the dog was frightened of the flight, and was having “nervous diarrhea”, then that dog was not ready for public access, and more work should have been put into putting that dog in a variety of stressful environments so it would be used to it. If someone were to have a seizure on the plane, the dog can’t be helpful if it’s shitting up and down the aisle.

A service dog handler follows protocol for limiting food intake at the beginning of the day of the flight, and to ensure that the service dog has ample time to eliminate before boarding the flight. In addition to that, we pay VERY special attention to the service dog’s general health in the days leading up to lengthy travel, so as not to be stuck midair with a sick dog (would be one of our worst nightmares, to be sure). We have to add on extra time to our arrival at the airport, if we book multi leg flights, we need to book flights with adequate layover time for the service dog to eliminate, if needed. When we arrive at our destination, we allow for another potty stop before we get ground transportation, too. A service dog is performing a life saving job for its handler and, at the very least, the dog deserves a handler that will do her best to ensure that traveling is as comfortable for the dog as possible. A well trained service dog can easily (and they very often do) ‘hold it’ for a cross country flight, and longer. In fact, service dogs are trained to eliminate on command. If I don’t tell Gen she can go, she will hold it until her body physically fails to do so any longer. Therefore, if my service dog has an accident, it is MY FAULT, 100%.

Owner and her dog.

Via Chris Law’s Twitter feed.

At least one of the passengers on the plane felt that the owner was lying about her dog being a service dog. My knee jerk reaction is to suspect that, too. I’ve flown 6 flights with service dogs. On several of those flights, I witnessed people trying to scam their way to a free flight for their pet by claiming it’s a service animal. It is infuriating. On my last flight, a woman who was clearly lying about her pet being a service dog, was ultimately denied her seat on the flight, but only for the technicality of the crate she wished to bring with her not meeting proper specifications for pets in the cabin. (Service animals don’t fly in crates. How can they do their jobs from a crate?) The airlines are at such a loss to control the “fakers” because of the laws that protect the actual disabled people that have a properly trained, legitimate service dog. It keeps them from asking too many questions, even when they suspect someone is lying. A disabled handler does not need to present any formal documentation other than (possibly) a health certificate, and some flights require nothing. The laws that were made to protect me and other disabled people from being harassed unnecessarily make it easy for the fakers to avoid any line of questioning by the airline. The airline faces fines and penalties if they do not adhere to federal laws, their hands are usually tied, and the rest of the passengers just have to hope that the dog is really a service dog. In the case of the woman who was kicked off my flight, every single employee dealing with her continually shot glances at me and Gen throughout the time she stood at the bulkhead arguing with them. Gen and I were in the front row, right in the middle of the action. (As a courtesy to other passengers, and for the service dog’s comfort, I always purchase bulkhead seating. I don’t have to, but I consider it a small price to pay for a seamless travel day.) The crew had a real-time example of a true service dog’s behavior. Always at my thigh, she obeys each verbal or non-verbal command I give her, and when we are seated, and she curls up into a ball at my feet and doesn’t move from her spot until I tell her she may get up when we reach our destination. The most common thing we hear? “There was a dog on our plane the whole time?!” (We get that at restaurants all the time, too. No one even knows she’s at my feet under the table.) Our presence definitely did NOT help this woman’s (faker) case to try to smuggle this frightened, tiny lap dog in a make-shift crate when there was a certified Seizure Alert and Response Service Dog performing her duties two feet away. When I fly, I overhear people sharing their plans to buy vests for their dogs so they can fly for free. Most common type of OH: “I’m going to have my therapist write me a note for an emotional support animal and then I’ll get a vest and Fifi can fly with me!” Even though “Emotional Suppport” Animals are not considered service animals under the Americans With Disabilities Act, (Edited with info from Jeff’s comments below, Thanks Jeff! ) —> Air carriers are governed under the ACAA, and airlines can and do accept ESA’s (even other than dogs) if the handler has a qualifying disability (key word: disability), but NOT for all mental illnesses. I recently had a twenty something girl share with ME that she had her psychologist friend write a note saying that her PET RABBIT is her emotional support animal so she can take it to Hawaii. I immediately shared with her that emotional support animals are not considered service animals, that a rabbit is a RODENT (nope, not even covered under ACAA) and then I guilt tripped the shit out of her with the old, “Would you fake the need for a wheelchair because you didn’t want to have to walk on your two healthy legs like everyone else?” I basically enlightened her on what it feels like to be disabled and have to watch people fake a disability to bring pets on planes, keep pets in apartment buildings that usually don’t allow them, or just take their fucking pomeranian everywhere. These people aren’t just faking having a service dog. They are faking having a disability. Fucking gross.

DO YOU THINK FOR ONE SECOND THAT I WOULDN’T TRADE MY SERVICE DOG FOR A HEALTHY BODY THAT DIDN’T SEIZE UNEXPECTEDLY ON REGULAR BASIS, ASSHOLE?

Having a service dog isn’t a game, it isn’t cool, and it is a fuckload of work every single day, but having her is the only way I can be safe, especially when I’m alone. In 2012 I had a seizure that could have killed me, and I had no warning, could not call for help, and am damn lucky to be alive today. In the past few years, I have had seizures that caused dangerous falls and serious injuries. I’m lucky to have recovered from those injuries. Without Gen, I would need round the clock supervision and lose more freedoms than I have already lost. A service dog is a true lifeline for me.

Could this service dog have been a genuine service dog? I guess, but my spidey senses feel otherwise, and it pisses me off. I would never bring a sick dog on a plane, and I would never bring a service dog that could not handle air travel on a plane. The training that service dogs go through is thorough and rigorous. While accidents do happen (service dogs aren’t robots after all), it seems like this situation was preventable. The other thing that got my spidey senses up was her (totally weird) request for the other passengers addresses so that she could buy them all Starbucks gift cards. Smells like guilt to me, bigger than just the fact that the dog forced an unexpected landing, but more like the dog shouldn’t have been there in the first place. If I’m wrong, and the dog was a service dog, then I recommend that the handler get more training and pay more attention to her dog.

Perhaps it’s time to require more service dog identification and certification for public service. I have always feared that doing so would make access unnecessarily and unfairly difficult for people with disabilities, but because some people are fucking assholes we are already facing unnecessary discrimination if we don’t outwardly appear disabled. Thanks, dicks.

Hospital prison log in review: A week in the slammer.

I spent the past week trapped in a goddamned hospital room. Below you’ll find a collection of my daily updates and random musings from my incarceration. It was highly irritating. It’s ok if you think I’m a hero. I probably am.

My "inpatient irritated" face. Goddammit.

My “inpatient irritated” face. Goddammit.

Enjoy, fuckers.

St. Luke’s Hospital Prison Log
Day One:

March 5, 2014

My captors have succeeded in confining me to a bed in the middle of my cell. I’m under 24 hour surveillance. The food served to us is clearly meant to induce gen pop starvation, rendering inmates too weak to revolt.

I’m using IV needles to scratch out a prison tat. Gonna make some hooch by fermenting SunnyD and dinner rolls in a bed pan.

The smuggling in of any/all contraband is encouraged.

For now, I’ll be singing old spirituals and dragging my metal cup across the cell bars.

Goddammit.

March 5, 2014

Things that are NOT fucking funny. Apparently.

1.) Penciling in “Beer” on the drink list on the dinner menu in the hospital.

March 5, 2014

A nurse (not mine) just walked into the room to give me a cup of water and to turn out the light. I saw her face for half a second, then she turned and the lights went out.

For no fucking reason, and without even thinking, I blurted out, “Are you a twin?”

She spun around, looked at me quizzically and replied, “Yes.”

I don’t know what shocked me most, that I actually fucking asked that, or that she said yes.

We’ve never met, nor do either of us find the other familiar. We ran through lists of possible connections, all the way back to forever ago. She’s much (much) younger than me, we come from different cities, and she hasn’t worked here long.

What the fuck just happened?

And how did I become the fucking nut-job lady on the neuro floor who asks complete strangers if they are a twin, anyway?

I’ve got to get that beer back on the menu.

STAT.

St. Luke’s Hospital Prison Log
Day Two:

March 6, 2014

There is an alarm on my bed. It’s a “She’s trying to escape!” type of alarm.

I have voiced my indignation via written messages that I have held up to the video camera (aka The Eye in the Sky) that my captors use to watch my every move.

THERE IS A GOTDAMNED ALARM ON MY BED.

It’s starting to smell in here.

March 6, 2014

Mysterious package arrived at the prison today from an anonymous friendly on the outside.

In it were the closest things to my favorite kicks that I can get while incarcerated, along with enough Gummy Bears to pay off the guards for their continued cooperation in this smuggling operation.

Kicks

Sweet kicks.

Great job gang. Be safe out there.

March 6, 2014

Trying to remember if, last night, I was just imagining how funny it would be if I picked my nose on camera, or if I actually picked my nose on camera.

Both scenarios are equally plausible.

Shit.

Unrelated, after listening to his voice this afternoon, if the new patient in the room across the hall doesn’t end up looking exactly like Lou Ferrigno, the world as I know it is a lie

Update on Lou Ferrigno:

Lou missed the cut off for ordering a dinner meal. HULK SMASH.

His wife calls all the staff members “girl”. As in, “That was a good idea, girl.” or “Hey. Girl, can you get me a new chair?” (I should clarify that she doesn’t say it in a familiar, friendly way. At all.)

This just in!!!! “Wife” is actually Lou’s mom.

Further update on Lou Ferrigno:

Lou is talking to family member (maybe wifey?) on SPEAKER PHONE, and while talking about his tumor, his wife busted into Arnold Swarzenegger voice with, “It’s not a too-ma.” He replied in Arnold voice, in turn.

My mind just exploded.

St. Luke’s Hospital Prison Log
Day 3:

March 7, 2014

I’m pretty sure I’ve figured out which of the assistant guards flagged me as a flight risk. He’s a young man, and clearly dislikes me. Even so, I can tell he’s also a little bit afraid of me. What a brave boy. I’m sure I can bring him over to my side through the magic (and friendship) of My Little Ponies. I’m confident that this is the way to his little Brony heart, as he’s unwittingly indicated by his peculiar behavior, lack of eye contact, and choice of footwear.

No man can eat 50 eggs.

Befriending the narc on cell block N(euro).

Befriending the narc on cell block N(euro).

March 7, 2014

This little piece of awesome made it through the prison mail room, today!

Good to know that people on the outside still get you…

True story.

True story.

Godspeed, all my freedom fighters.

From the hubby via Facebook (March 7, 2014):

Two full days alone with the natives and still no sign of their leader. So far, they have not turned against me. Sometimes I think they think the disappearance of their leader is because of me. There have been a few moments when things got a bit dicey, but we were able to strike a deal and keep peace between us.
I remain positive that their leader will appear soon. Until then I keep my guard up in case of an uprising.

Aaaanooother Update on Inmate #26627 Lou Ferigno:

One hour post-extubation Lou Ferigno turned into a 3 hour post-extubation John Goodman, who turned into 12 hour post-extubation some dude who made 3 open-door-speaker-phone conference calls all before 9:00am today. Because, he may not be Lou Ferigno, or John Goodman, but goddammit, he must be more important than any of us assholes.

Also, one of the more confused (and very combatant) inmates just started barking. I think, perhaps the line between the Neuro cell block and the Psych cell block is a fine one.

A very, very fine one.

Ruff.

St. Luke’s Hospital Prison Log
Day Four:

March 8, 2014

Forgetting Mrs. Santiago’s medications is the new black.

orangeblack

St. Luke’s Hospital Prison Log
Day Five:

March 9, 2014

Things got a little dicey on N(euro) block this afternoon. One of the inmates was screaming that one of the guards was “running her mouth when she shouldn’t be”. That’s about all I know. I was trying to dip, but that shit happened while *my* cell was on lock down, because none of your goddamned business.

Otherwise quiet Sunday on the block. Made eyeliner out of deodorant and pencil lead. One more jelly packet from the mess hall, and I’ll have enough to make some hair gel.

Sonofa.

March 10, 2014

Thanks to all of my pals for making my time on the inside much easier. You turkeys crack me up. Best care packages, and best looking mules in five counties. Bet.

March 10, 2014

THIS. I’m calling this infusion “PAROLE”. I’m about to get sprung from this joint, y’all. *does the Cabbage Patch, Running Man, Coffee Grinder to end pose*

I'm out, bitches.

I’m out, bitches.

St. Luke’s Hospital Prison Log
Day six (and final) entry:

March 10, 2014

Like a fart in the wind.

Like a fart in the wind.

March 10, 2014

Okay, this is just the sweetest photo of my daughter. (Taken from my bed.)

Perched in my window.

Perched in my window.

March 11, 2014

I’m using the bathroom without being watched by a nurse, for fear that I might have a seizure and fall.

This is some exciting shit.