...for a 36 Hour Period When Things Are Going Relatively Well. (Please note: things vary considerably from person to person and from day to day and from period of time to period of time with the same person. But this is a taste of our life right now....)
It's been a rough last 36 hrs. As usual, epilepsy has kept us off-balance in one way or another, just enough so that we feel unsettled. Somewhat ironically--or perhaps predictably--this feeling unsettled follows on the heels of a weekend where I felt like I had finally gotten some equilibrium. Epilepsy is like that. It just never lets you rest. Not for long.
Since things had been going well, things had to start to go wrong again. It started the night before last with Awesome's Empatica Embrace seizure detection watch going on the blink. It had un-paired itself from her smart phone and no matter how many times she followed all the usual tricks for re-pairing it, it simply wouldn't pair again. If the two are unpaired, the watch vibrates and blinks constantly. It gets your attention, purposefully and effectively, over and over again until you fix the problem. The only thing about it is that sometimes you can't fix the problem.
I do believe that one day the Embrace will be an amazing, dependable tool--a real asset for those with epilepsy. But in the real world in the last 5 months since we got ours, the Embrace has alternated between being a big malfunctioning source of stress and a trouble-free help and blessing. We never know which it will be. Just when we think we're finally in the clear so we can depend on the Embrace working well, Empatica will do a software update and bugs will turn up in the program--and we're back to the malfunctioning source of stress again. I'll go into more detail about the Empatica Embrace in another post another time, but suffice it to say that, for our purposes right now, because the Embrace has had so many major issues so many times now, Awesome no longer trusts it. Instead she sees it as yet another unpredictable epilepsy-related source of stress. Her attitude towards the Embrace is that it's way more trouble than it's worth and that it exists to malfunction and torture kids with epilepsy just to make them more miserable.
Of course, that's unfair. But then she's a child dealing with the stress of intractable seizures and way more in the way of medicalization than she can handle. She just wants epilepsy and all its stresses--including her troublesome seizure detection watch, seizures, special diet, high level of supervision, doctors, tests, hospitalizations, and the endless round of all these things--to go away and leave her alone.
And so, when the seizure detection watch on her wrist keeps vibrating and blinking red and won't stop because it is having software issues for the 100th time--and it's doing that on a day when she was already stressed because she'd been keeping secret from her parents the fact that she'd felt like she'd been on the verge of a big seizure all afternoon--and it was nearly bedtime and she still hadn't told them, and wouldn't tell them her secret until the next day, because she didn't want to worry them and maybe even more because she didn't want to deal with them worrying about her... Well, it's. All. Just. Too. Much..
Sometimes Awesome simply reaches her limit. And she did last night. And so she angrily shoved her Embrace and smart phone in my direction and declared, "Here, you fix the stupid thing!" And then when I couldn't fix "the stupid thing," despite my best efforts, she became even more stressed. I managed to distract her and, thankfully, after about 20 minutes I got the two to pair (no rhyme or reason as to why the same pairing techniques finally worked on about the 15th try). Or at least they seemed to be paired....
But then, a few minutes later, the stress returned as Awesome found her watch would not let her set it to night mode (a mode in which the watch face doesn't light up). There was nothing to do but to sleep without her seizure detection watch. By bedtime a few minutes later, Awesome was sobbing. There was more than a little irony in having lost a battle to the unpredictability of a malfunctioning technological gadget meant to protect Awesome and keep her safe from epilepsy's unpredictability. The irony was apt. And it just contributed to Awesome's feeling stressed and feeling that her world was unpredictable. Like she couldn't count on anything except the fact that she couldn't count on anything.
Epilepsy is like that. It's just stressful. It's unpredictable. You can't count on anything to be the way you plan for it to be from moment to moment. You get used to surrendering over and over again to the unpredictability. But sometimes it gets to you. And all of that grieving of the loss of control over your own life gets focused in an apt symbol. The Empatica Embrace watch was that symbol that night. And so Awesome cried and grieved the loss of control through her anger and disappointment in that watch. The disappointment in the watch was the front for all the disappoint that is epilepsy.
As I comforted my sobbing, grieving child, all of the equilibrium I'd supposedly achieved over the weekend went right out the window
It took me a couple of hours to calm down enough after that to go to sleep myself. I should have cared that Awesome's seizure detection watch wasn't monitoring her overnight, but I didn't go there. I just didn't have the energy to fret over that which I couldn't change. Instead I focused on the next day and just prayed that the watch would--like it sometimes does--fix itself overnight. Or alternatively, I prayed that a software update with a fix for the problem would be waiting there in the morning. This, after all, is life at the bleeding edge of technology. You expect blood loss.
In the morning I awoke optimistic again and determined NOT to let our day be dominated by epilepsy--to the degree that I had any control over such things. We were finally done with all the doctors' appointments of the last few months. Together my husband David and I had decided we were simply putting off thinking about the questions the various doctors had left us to think about--among those subjects being the question of whether we wanted to start the process to determine whether a surgeon would cut out a part of our daughter's brain (whether to pursue pre-surgery testing for an eventual epilepsy surgery to remove a focal lesion if one was found). We decided we would NOT think about any of these things right now. We would simply concentrate on living life for awhile. We desperately needed a break from all things medical and epilepsy. Today would not just be the start of a new week, but also the start of a new period of time mentally.
We succeeded in our intentions for all of 5 minutes after I woke yesterday morning. The phone rang. It was our Medical Geneticist's assistant calling to let us know that the Medical Geneticist wanted us to do two more sets of genetic testing. She also wanted to see us in the next few weeks for another office appointment. And we were to know that they would be needing saliva and blood samples too.. The merry-go-round of doctors appointments and tests that we thought we were done with until May--with all the weighty processing and coming to terms with things that those appointments and test inevitably bring--was apparently not over. Not yet. We're very thankful for all that our hard-working, brilliant, and tireless doctors do to try to figure out what's what with our Awesome. And we eagerly want the results of this genetic testing. So I'm not complaining. But I wasn't expecting another round quite yet. Nor the phone call this morning.
It's always a struggle to figure out whether and when to mention to Awesome these appointments, tests, etc. that are in the works. She wants to know before the fact, but the sooner we inform her, the more time she has to think about and anticipate it all (aka stress about it). And she's not going to be pleased about these appointments. We'd told her we were done with doctors and tests until May (bad move on our part). To have informed her yesterday morning would have simply stressed her. So I chose not to tell her. We'll tell her what's up when we have appointment dates. In the meantime, we parents will be thinking about it all and wondering whether any of these tests will yield any more answers than all the 101 tests she's had so far--which haven't yielded answers.
One of the hardest things about epilepsy is its unpredictability. Never being able to plan your day (or your week, your month, your year)--and count on those plans--but having to always be flexible and be ready to ditch all your plans in an instant. To live life in a flexible, unpredictable, exciting, in-the-moment way may seem wonderful when it's something you choose as a way of life, but when it's not what you've chosen and it's constant--day after day, week after week, year after year--it gets difficult. It keeps you feeling off-balance. And so we struggle constantly to gain and keep our equilibrium.
And so after the phone call from the Medical Geneticist's assistant, as we parents once again struggled to regain equilibrium, we went on with our day. A school day--a homeschool day. I was still determined to keep epilepsy out of our day as much as possible. This worked pretty well in the morning. Awesome didn't have a single little seizure all morning. Which is extraordinary. (It can also be worrisome as it can sometimes signal that a big seizure is on the horizon, kind of like when the sea line dips low right before a tsunami hits).
In fact, the last few days her little absence seizure count had suddenly been back down in the single and low double digits. Of course, I have no idea why. Just like I have no idea why her seizure frequency had been high during the previous two weeks. With epilepsy one never really has any idea why anything is the way it is. You just roll with it. And so we rolled with it this morning. Happily. Gratefully.
We went out to lunch together, the three of us. It was lovely. And then, according to our usual Monday schedule, while David went off to teach at the university, we went to the public library so that Awesome could attend her Creative Writing group. Local students who meet to talk about and share their writing with each other. It's also a social time. Awesome is both a serious writer and a very social person, and so she loves this group. It's the highlight of her week..
Awesome and I usually do some of her day's schoolwork at the library before the meeting. We arrive early, find a quiet table out of the way, and work together on an English or Math lesson. We find a "quiet table out of the way" because, when you live with epilepsy breathing down your neck, you never want to sit in the middle of everything. Instead you want to be in an out of the way corner, on the edge of things, just in case a seizure should suddenly happen. You're always scoping out your escape route (in case the seizure should begin with an aura and there is time to move) or a way to quickly duck into or drag or carry your child to a more private place. Now that Awesome's bigger, if I'm alone with her, I also try to scope out the people nearby that I'd ask to help carry her out of eyesight. This is because there's nothing worse than being the public spectacle, the afternoon's excitement. Scoping things out ahead of time gives you the illusion of some amount of control over that which you really have absolutely no control. What will happen from one minute to the next. And whether that thing will be a convulsive seizure.
I also tend to scope out how many people would notice a seizure. And whether I could reasonably communicate to them to NOT to call 911. I always hope that should a seizure occur that we could somehow have it quietly. Without drawing attention and without anyone calling 911. Because, calling 911 is unnecessary and unwelcome and it tends to turn the spectacle of a seizure in public into just that--a public spectacle. Much like a three ring epilepsy circus under the big top. Sirens, blinking lights, men in uniform with radios blaring tramping through a public place so that everyone looks up, follows them gawking, and figures out what's going on. Calling 911 for a seizure in public is like having a seizure in the spotlight on a stage. So yes, we look for a quiet corner where I hope we could hope to remain less conspicuous. And where I could persuade people to not call 911. Because after handling more than big 60 seizures with my daughter, I know that we don't need emergency assistance unless I decide we need emergency assistance.
And so yesterday, there we were, sitting in a quiet out of the way corner in the public library, reading a lesson about identifying sentence types: simple, compound, and complex by analyzing sentence skeletons, and about distinguishing between coordinating conjunctions, subordinating conjunctions, and relative pronouns to help determine whether clauses are independent or dependent and so on and so forth, yada, yada, yada....when Awesome suddenly turns to me midway through analyzing a sentence, looks me straight in the eye and says, "Can you please give me some CBD now? I really feel like I'm about to have a seizure."
And so, I do. Right there in the public library. And I start to feel nervous and stressed. Which only makes her more stressed. And the more stressed she gets, the more likely she is to have that seizure that she's feeling she's on cusp of. So I put the English texts away and offer her my laptop, suggesting she watch one of her favorite cartoons. Right there. Because it will help relax her and make a seizure less likely. She watches while I pack up our things. Because should a seizure happen, I have to be ready to attend to her. And not be worried about leaving things behind. Part of being an epilepsy parent is always being on your guard. And like a Boyscout, always being prepared. And organized. Because things get very crazy very fast. So the more organized you are ahead of time, the more you can feel like you have some measure of control. Even though, really, you don't.
It's stressful sitting there in the library waiting to see if she'll have a seizure right there. I look around. We're off the beaten path,in a little alcove surrounded on three sides by library shelves. But a convulsive seizure would still be a public event.. On the remaining open side, there are about 8 tables within our view, three of them with adult men sitting with laptops. Ugh. And none of them look like the sort of men I'd ask for help should I need it. I pray she doesn't have one so that I don't need their help. In the past before CBD, every aura like this was a one-way ticket to a convulsive seizure. I thank God that since CBD, an aura is NOT a one way ticket to a convulsive seizure. These auras often now--though not always--pass without incident. I pray that this is one will be one of those that passes without incident.
I ask Awesome if maybe we should leave. Awesome doesn't want to leave; she's determined to attend her Creative Writing Club. She reminds me that once she's happy and distracted with the group, a seizure will be less likely. Somehow we make it through the next five minutes without a seizure starting. The group is due to begin in a couple of minutes. Awesome asks permission to get up and begin gathering chairs around the table where her group will sit--a table on the other side of the large room--but in a clear sight-line to where I'm sitting (I will need to continue to monitor her for signs of a seizure starting so intervention could be swift). Since I figure a distraction of doing something will help, I tell her she can gather the chairs. Five minutes later, Awesome is sitting with her group, happy, animated, and talking a mile a minute. She is radiant. She has a rapt audience. The conversation starts. Awesome is in her element. And she's not seizing.
Rattled, I move around the corner to the group of moms that have gathered around a table, a good distance from the table where our children are meeting. I request we move a little closer--still far away enough to give the kids their space, but close enough that I can maintain my sight-line to monitor Awesome for a seizure. And then a child sits in my sight line. One of the Moms, understanding the situation, gets up and asks the child to move his chair to the left so I can still see Awesome. It takes me a good ten minutes to calm down. And feel less nervous. To have my blood pressure, heart rate, and adrenaline return to normal. I keep Awesome in my sight line, and gradually relax. We have dodged another bullet.
It's just another day living with epilepsy. I'd declared the night before that I wouldn't let epilepsy rattle our cage today, but it somehow has. Again.
Later, we leave the library with Awesome happy and animated. I almost welcome the five little seizures I see in the next hour. It is like the steam release on the top of a pressure cooker. Many little releases of steam over time makes it less likely the whole thing will blow in a big seizure. At home, we finish our school lessons for the day. The Empatica Embrace is malfunctioning again. It is unpaired again. And its memory is full. It is back to vibrating constantly on Awesome's arm and doing its crazy light blinking routine--not just red now, but also orange. Awesome is better able to handle it its irritating malfunctioning this afternoon. She helps me fix it. We delete the Empatica Alert app. And download the app again. And go through signing in. And then, the problem is fixed. The watch pairs. And it begins uploading the information in its memory onto the phone. Half an hour later, it is functioning normally again.
Awesome cheerfully goes off to a quiet place with a functioning seizure alert watch to relax and start to read her new library books. We've weathered another 24 hrs in living with epilepsy.
The next morning, Awesome awakes happy, to a day full of promise. Ten minutes after she wakes the big seizure that had been stalking her for the past 48 hrs finally overtakes her. She seizes for only about a minute. That her tonic-clonic seizure lasts only one minute is the triumph of CBD (medical cannabis). In the past before CBD, Awesome would have actively seized for more than 10 minutes and we'd have had to give her an emergency seizure rescue medication to stop the seizure. Instead, her convulsive seizure in all its fury, lasts only a minute and subsides on its own. The Empatica Embrace works: as Awesome seizes, our phones chirp their seizure alert in the background. After the seizure, Awesome sleeps for half an hour and then wakes. She doesn't know that she just had a seizure.
"What happened?"
"You had a seizure."
"I did? Really? Oh my gosh.... Ugh"
A few minutes later she moans groggily: "I don't want to do anything today."
"Just rest right now and don't worry. We'll see what you feel like... And then decide what we'll do."
Rolling with the punches with epilepsy is the only option. You have to be flexible. You have to be willing to surrender, day after day, to that which you can't control. But also bravely salvage what you can and make the best of it. Glory in the good moments. Weather the bad. Because, in the end, control over life and even the moment to moment is largely an illusion. A sleight of hand. Something we believe in to make ourselves feel better. To feel like we have more control than we actually have over what happens to us. In the moment. In the longer term. In general.
I suppose in the end, Intractable Epilepsy just demands of those of us who live it, an intense version of what, in the end, life demands of us all. That we with make peace with and learn to accept, with gratitude, the gift of this life which we've been given. A gift in which we must take the the good, the bad, and the ugly as it comes to us. Not on our terms, but on its own terms. Minute after minute. Day after day. Week after week. Month after month. Year after year.
It's been a rough last 36 hrs. As usual, epilepsy has kept us off-balance in one way or another, just enough so that we feel unsettled. Somewhat ironically--or perhaps predictably--this feeling unsettled follows on the heels of a weekend where I felt like I had finally gotten some equilibrium. Epilepsy is like that. It just never lets you rest. Not for long.
I do believe that one day the Embrace will be an amazing, dependable tool--a real asset for those with epilepsy. But in the real world in the last 5 months since we got ours, the Embrace has alternated between being a big malfunctioning source of stress and a trouble-free help and blessing. We never know which it will be. Just when we think we're finally in the clear so we can depend on the Embrace working well, Empatica will do a software update and bugs will turn up in the program--and we're back to the malfunctioning source of stress again. I'll go into more detail about the Empatica Embrace in another post another time, but suffice it to say that, for our purposes right now, because the Embrace has had so many major issues so many times now, Awesome no longer trusts it. Instead she sees it as yet another unpredictable epilepsy-related source of stress. Her attitude towards the Embrace is that it's way more trouble than it's worth and that it exists to malfunction and torture kids with epilepsy just to make them more miserable.
Of course, that's unfair. But then she's a child dealing with the stress of intractable seizures and way more in the way of medicalization than she can handle. She just wants epilepsy and all its stresses--including her troublesome seizure detection watch, seizures, special diet, high level of supervision, doctors, tests, hospitalizations, and the endless round of all these things--to go away and leave her alone.
And so, when the seizure detection watch on her wrist keeps vibrating and blinking red and won't stop because it is having software issues for the 100th time--and it's doing that on a day when she was already stressed because she'd been keeping secret from her parents the fact that she'd felt like she'd been on the verge of a big seizure all afternoon--and it was nearly bedtime and she still hadn't told them, and wouldn't tell them her secret until the next day, because she didn't want to worry them and maybe even more because she didn't want to deal with them worrying about her... Well, it's. All. Just. Too. Much.. Sometimes Awesome simply reaches her limit. And she did last night. And so she angrily shoved her Embrace and smart phone in my direction and declared, "Here, you fix the stupid thing!" And then when I couldn't fix "the stupid thing," despite my best efforts, she became even more stressed. I managed to distract her and, thankfully, after about 20 minutes I got the two to pair (no rhyme or reason as to why the same pairing techniques finally worked on about the 15th try). Or at least they seemed to be paired....
But then, a few minutes later, the stress returned as Awesome found her watch would not let her set it to night mode (a mode in which the watch face doesn't light up). There was nothing to do but to sleep without her seizure detection watch. By bedtime a few minutes later, Awesome was sobbing. There was more than a little irony in having lost a battle to the unpredictability of a malfunctioning technological gadget meant to protect Awesome and keep her safe from epilepsy's unpredictability. The irony was apt. And it just contributed to Awesome's feeling stressed and feeling that her world was unpredictable. Like she couldn't count on anything except the fact that she couldn't count on anything.
Epilepsy is like that. It's just stressful. It's unpredictable. You can't count on anything to be the way you plan for it to be from moment to moment. You get used to surrendering over and over again to the unpredictability. But sometimes it gets to you. And all of that grieving of the loss of control over your own life gets focused in an apt symbol. The Empatica Embrace watch was that symbol that night. And so Awesome cried and grieved the loss of control through her anger and disappointment in that watch. The disappointment in the watch was the front for all the disappoint that is epilepsy.
It took me a couple of hours to calm down enough after that to go to sleep myself. I should have cared that Awesome's seizure detection watch wasn't monitoring her overnight, but I didn't go there. I just didn't have the energy to fret over that which I couldn't change. Instead I focused on the next day and just prayed that the watch would--like it sometimes does--fix itself overnight. Or alternatively, I prayed that a software update with a fix for the problem would be waiting there in the morning. This, after all, is life at the bleeding edge of technology. You expect blood loss.
In the morning I awoke optimistic again and determined NOT to let our day be dominated by epilepsy--to the degree that I had any control over such things. We were finally done with all the doctors' appointments of the last few months. Together my husband David and I had decided we were simply putting off thinking about the questions the various doctors had left us to think about--among those subjects being the question of whether we wanted to start the process to determine whether a surgeon would cut out a part of our daughter's brain (whether to pursue pre-surgery testing for an eventual epilepsy surgery to remove a focal lesion if one was found). We decided we would NOT think about any of these things right now. We would simply concentrate on living life for awhile. We desperately needed a break from all things medical and epilepsy. Today would not just be the start of a new week, but also the start of a new period of time mentally.
It's always a struggle to figure out whether and when to mention to Awesome these appointments, tests, etc. that are in the works. She wants to know before the fact, but the sooner we inform her, the more time she has to think about and anticipate it all (aka stress about it). And she's not going to be pleased about these appointments. We'd told her we were done with doctors and tests until May (bad move on our part). To have informed her yesterday morning would have simply stressed her. So I chose not to tell her. We'll tell her what's up when we have appointment dates. In the meantime, we parents will be thinking about it all and wondering whether any of these tests will yield any more answers than all the 101 tests she's had so far--which haven't yielded answers.
One of the hardest things about epilepsy is its unpredictability. Never being able to plan your day (or your week, your month, your year)--and count on those plans--but having to always be flexible and be ready to ditch all your plans in an instant. To live life in a flexible, unpredictable, exciting, in-the-moment way may seem wonderful when it's something you choose as a way of life, but when it's not what you've chosen and it's constant--day after day, week after week, year after year--it gets difficult. It keeps you feeling off-balance. And so we struggle constantly to gain and keep our equilibrium.And so after the phone call from the Medical Geneticist's assistant, as we parents once again struggled to regain equilibrium, we went on with our day. A school day--a homeschool day. I was still determined to keep epilepsy out of our day as much as possible. This worked pretty well in the morning. Awesome didn't have a single little seizure all morning. Which is extraordinary. (It can also be worrisome as it can sometimes signal that a big seizure is on the horizon, kind of like when the sea line dips low right before a tsunami hits).
In fact, the last few days her little absence seizure count had suddenly been back down in the single and low double digits. Of course, I have no idea why. Just like I have no idea why her seizure frequency had been high during the previous two weeks. With epilepsy one never really has any idea why anything is the way it is. You just roll with it. And so we rolled with it this morning. Happily. Gratefully.
We went out to lunch together, the three of us. It was lovely. And then, according to our usual Monday schedule, while David went off to teach at the university, we went to the public library so that Awesome could attend her Creative Writing group. Local students who meet to talk about and share their writing with each other. It's also a social time. Awesome is both a serious writer and a very social person, and so she loves this group. It's the highlight of her week..
I also tend to scope out how many people would notice a seizure. And whether I could reasonably communicate to them to NOT to call 911. I always hope that should a seizure occur that we could somehow have it quietly. Without drawing attention and without anyone calling 911. Because, calling 911 is unnecessary and unwelcome and it tends to turn the spectacle of a seizure in public into just that--a public spectacle. Much like a three ring epilepsy circus under the big top. Sirens, blinking lights, men in uniform with radios blaring tramping through a public place so that everyone looks up, follows them gawking, and figures out what's going on. Calling 911 for a seizure in public is like having a seizure in the spotlight on a stage. So yes, we look for a quiet corner where I hope we could hope to remain less conspicuous. And where I could persuade people to not call 911. Because after handling more than big 60 seizures with my daughter, I know that we don't need emergency assistance unless I decide we need emergency assistance.
And so yesterday, there we were, sitting in a quiet out of the way corner in the public library, reading a lesson about identifying sentence types: simple, compound, and complex by analyzing sentence skeletons, and about distinguishing between coordinating conjunctions, subordinating conjunctions, and relative pronouns to help determine whether clauses are independent or dependent and so on and so forth, yada, yada, yada....when Awesome suddenly turns to me midway through analyzing a sentence, looks me straight in the eye and says, "Can you please give me some CBD now? I really feel like I'm about to have a seizure."And so, I do. Right there in the public library. And I start to feel nervous and stressed. Which only makes her more stressed. And the more stressed she gets, the more likely she is to have that seizure that she's feeling she's on cusp of. So I put the English texts away and offer her my laptop, suggesting she watch one of her favorite cartoons. Right there. Because it will help relax her and make a seizure less likely. She watches while I pack up our things. Because should a seizure happen, I have to be ready to attend to her. And not be worried about leaving things behind. Part of being an epilepsy parent is always being on your guard. And like a Boyscout, always being prepared. And organized. Because things get very crazy very fast. So the more organized you are ahead of time, the more you can feel like you have some measure of control. Even though, really, you don't.
It's stressful sitting there in the library waiting to see if she'll have a seizure right there. I look around. We're off the beaten path,in a little alcove surrounded on three sides by library shelves. But a convulsive seizure would still be a public event.. On the remaining open side, there are about 8 tables within our view, three of them with adult men sitting with laptops. Ugh. And none of them look like the sort of men I'd ask for help should I need it. I pray she doesn't have one so that I don't need their help. In the past before CBD, every aura like this was a one-way ticket to a convulsive seizure. I thank God that since CBD, an aura is NOT a one way ticket to a convulsive seizure. These auras often now--though not always--pass without incident. I pray that this is one will be one of those that passes without incident.
Rattled, I move around the corner to the group of moms that have gathered around a table, a good distance from the table where our children are meeting. I request we move a little closer--still far away enough to give the kids their space, but close enough that I can maintain my sight-line to monitor Awesome for a seizure. And then a child sits in my sight line. One of the Moms, understanding the situation, gets up and asks the child to move his chair to the left so I can still see Awesome. It takes me a good ten minutes to calm down. And feel less nervous. To have my blood pressure, heart rate, and adrenaline return to normal. I keep Awesome in my sight line, and gradually relax. We have dodged another bullet.
It's just another day living with epilepsy. I'd declared the night before that I wouldn't let epilepsy rattle our cage today, but it somehow has. Again.
Later, we leave the library with Awesome happy and animated. I almost welcome the five little seizures I see in the next hour. It is like the steam release on the top of a pressure cooker. Many little releases of steam over time makes it less likely the whole thing will blow in a big seizure. At home, we finish our school lessons for the day. The Empatica Embrace is malfunctioning again. It is unpaired again. And its memory is full. It is back to vibrating constantly on Awesome's arm and doing its crazy light blinking routine--not just red now, but also orange. Awesome is better able to handle it its irritating malfunctioning this afternoon. She helps me fix it. We delete the Empatica Alert app. And download the app again. And go through signing in. And then, the problem is fixed. The watch pairs. And it begins uploading the information in its memory onto the phone. Half an hour later, it is functioning normally again.Awesome cheerfully goes off to a quiet place with a functioning seizure alert watch to relax and start to read her new library books. We've weathered another 24 hrs in living with epilepsy.
The next morning, Awesome awakes happy, to a day full of promise. Ten minutes after she wakes the big seizure that had been stalking her for the past 48 hrs finally overtakes her. She seizes for only about a minute. That her tonic-clonic seizure lasts only one minute is the triumph of CBD (medical cannabis). In the past before CBD, Awesome would have actively seized for more than 10 minutes and we'd have had to give her an emergency seizure rescue medication to stop the seizure. Instead, her convulsive seizure in all its fury, lasts only a minute and subsides on its own. The Empatica Embrace works: as Awesome seizes, our phones chirp their seizure alert in the background. After the seizure, Awesome sleeps for half an hour and then wakes. She doesn't know that she just had a seizure.
"What happened?""You had a seizure."
"I did? Really? Oh my gosh.... Ugh"
A few minutes later she moans groggily: "I don't want to do anything today."
"Just rest right now and don't worry. We'll see what you feel like... And then decide what we'll do."
Rolling with the punches with epilepsy is the only option. You have to be flexible. You have to be willing to surrender, day after day, to that which you can't control. But also bravely salvage what you can and make the best of it. Glory in the good moments. Weather the bad. Because, in the end, control over life and even the moment to moment is largely an illusion. A sleight of hand. Something we believe in to make ourselves feel better. To feel like we have more control than we actually have over what happens to us. In the moment. In the longer term. In general.
I suppose in the end, Intractable Epilepsy just demands of those of us who live it, an intense version of what, in the end, life demands of us all. That we with make peace with and learn to accept, with gratitude, the gift of this life which we've been given. A gift in which we must take the the good, the bad, and the ugly as it comes to us. Not on our terms, but on its own terms. Minute after minute. Day after day. Week after week. Month after month. Year after year.
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