It’s difficult to adequately explain what it feels like to have a serious degenerative illness and have to listen to the barrage of ignorant or callous (and all too often, both) political rhetoric surrounding healthcare legislation. Like most people, I’m angry about the constant disingenuous spin on the health of the ACA and the manufactured need to repeal it rather than attempt a bipartisan effort to improve it. But the thing that bothers me the most is a big part of why all of this is happening in the first place, lack of empathy and the seemingly growing number of people who are unable to show compassion for people who’s life experience is different from their own. Instead of trying to understand each other better, it’s easier to manufacture a narrative that justifies discriminatory behavior. If you label groups of people as other-than-you, it’s easier to dismiss them. “Twenty four million people will lose coverage under this plan? Well, then they should stop being poor. They must be careless with their money, why should I have to contribute to their well being?” “Lifetime coverage limits cut off your kid’s chemo treatment? Where’s your life savings? Why don’t you sell your house? Start a GoFundMe page. It’s your kid, figure it out.” Basically, poor people need to stop being poor, and sick people should’ve planned better.
All of this other-ing and distancing of oneself from entire groups of people makes it easier to be flippant when discussing ideas that benefit one group to the other’s detriment. For instance, throughout all this debate around healthcare, people who spend a lot of time justifying legislation that would allow insurers to discriminate based on a patient’s medical history often talk about “the sick” as if it’s a term for some hypothetical life experience of a nameless, faceless group entity. I get a similar impression when people throw around terms like “pre-existing conditions”, “lifetime coverage limits” and “high-risk pools” as if these details aren’t really a big fucking deal. I realize that, for generally healthy politicians and pundits, these terms are just talking points. They don’t seem to want to acknowledge the real-life (and death) gravity of their words as they dance around the consequences of proposed legislation that would remove the very consumer protections that people’s lives depend on, that my life depends on. Perhaps it’s because they’ve had the good fortune to be generally healthy, or perhaps they just aren’t capable of taking an empathetic stance on issues that don’t directly affect them. (Or perhaps they don’t give a shit because they’ve got a tax break to deliver.)
I guess what I want to say, at the heart of it, is this:
I’m not “other”.
I’m not a nameless, faceless, abstract entity.
I’m not broken, I am disabled due to disease, but that is just one small part of all the things that I am.
I’m not lazy or irresponsible and I didn’t do anything to deserve what happened to me.
My name is Sara.
I have silver hair and a crooked smile.
I’m a wife, a mother, a daughter, a sister, an aunt, and a friend.
I have my grandmother’s uncontainable cackle-laugh.
I’m a listener and a storyteller and a painter and a woman and a human.
I might even be a lot like you.
And I’m just trying to make it to tomorrow.
Thanks for reading.
Go do something good today.
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.