Seizure Disorder – My Rules for Daily Life

First – let me be clear that I understand Seizure Disorders are serious business. They change people’s lives, restrict certain levels of independence, require daily medicine that have side effects, and in some cases can be deadly. I have the risk of death myself thanks to the new lesions and screwed up electrical connections in my brain. BUT sometimes you have to laugh and poke some fun at your situation and let’s face it, those of you with seizure disorders will likely relate. If we don’t laugh, we risk falling into a pit of despair (eh, see that Princess Bride reference there? Don’t fret, there will be more.)

Daily medicine – keeping track of when and whether you’ve taken your medicine. This includes using medicine organizers, alarms, back up alarms, texts from loved ones, and perhaps more. We also keep any emergency medicine on our person at all times – educating loved ones about when and how to shove it in our gobs (chocolate coating not necessary.) We remind our friends and teach our children that calling 911 asap is essential if we’re likely to have a status epilepticus experience. This may only be necessary for those of us who have tonic-clonic (or grand mal) seizures.

Traveling can be stressful – making reservations, packing, arranging care for your pets and/or children, and beginning to adjust your medicine timing if you’re changing time zones on your trip. One thing that most of us with seizure disorders do (I assume) is research where the nearest hospital is at our destination, just in case. Booking accommodations near the hospital might be a little excessive, but somehow it doesn’t seem weird to me.

To tell or not to tell, that is the question. It’s always a challenge deciding who you tell and what you tell them. I volunteer at my youngest child’s school – should I tell the office staff, the librarian, and/or my child’s teacher? And if so, how much do I tell them?  Education is always a good thing, but I haven’t had a seizure in a year. I wear a medical bracelet, but let’s face it, there’s only so much information you can put on that little ID Tag. If you tell, you may have to deal with the nervous anticipation, the sideways glances, the pity (in some cases), and the eggshells they’ll be walking on around you. The Fire Swamp is tricky to navigate.

Phones – everyone has a cell phone these days – well there are some hold outs, but generally everyone has a cell phone. I’ve been instructed explicitly by my husband that my cell phone is to be charged, NOT on silent mode, and on my person at all times. Not being able to reach me causes fear and panic and that’s no fun for anyone – especially my husband (I can only say ‘as you wish’.) Portable charging devices are a nice addition to this plan.

Eating, snacking, hydration, and sleep are all critical for me to avoid a seizure incident. Different people have different triggers, so knowing your triggers is important. Yes, I carry a snack and a bottle of water with me everywhere. Yes, I have no problem taking naps, sometimes 2 naps if I feel tired (get some rest. If you haven’t got your health, then you haven’t got anything.) Yes, I eat regular meals. I think these things are generally common for all of us with seizure disorders. Anxiety can also be a trigger and I always wonder if you can worry to the point where you actually trigger a seizure while you’re worrying about having a seizure…

Strobe lights are bad. Very bad. Some people think they’re cool, but these people clearly don’t have seizures. Come to think of it, any flashy lights are bad. Just don’t go there, it’s too risky. Take the time to enjoy the view (outside), have a cup of coffee, read a book or chat with a stranger while your friends go into the flashy light experience.

A simple swim is no longer a solo activity. Swimming now requires the buddy system. Pick someone you like. Think twice about skinny dipping. Just sayin’…don’t try to go into the Fire Swamp alone, that requires teamwork.

Driving is a privilege. Don’t abuse that privilege. IF you feel wonky, don’t drive. If you’ve had a seizure, be prepared to implement plan b, c, d, or e while you wait for the 3 – 6 months without a seizure (fingers crossed) before you can drive again. You may have your license suspended for longer or revoked altogether, so have a plan to get your kids to and from school. Learn your local bus routes, get your bike all tuned up, tag along with your neighbors/friends while they run errands, and get used to walking. Not driving is inconvenient, but its better than being dead or even mostly dead.

Since I discovered I had a seizure disorder (by having seizures) I’ve become WAY more conscious of my underwear decisions. At the risk of over sharing, I follow that advice ‘Wear clean underwear just in case you have an accident.’ I tend to lean more toward the standard chonies rather than the fancy, lacy kind. I know if I land myself in the hospital, I’ll end up without my underpants and those nurses who remove them have seen it ALL before…but somehow I like to know I won’t be embarrassed by the condition of my underpants (‘I just want you to feel you’re doing well. I hate for people to die embarrassed’.) In addition, if aliens come down to add to their collection of underpants, I’d like to offer a nice option (this is not a reference from The Princess Bride, but it’s still funny. Well, I think it’s funny.)

Note: if you’ve not yet seen or read The Princess Bride, do so immediately.

Driving Me A Little Mad

There are some days where I really hate the fact that I can’t drive. This week, there are a few such days.

Monday, the dog managed to tear another toenail and needed to get to the vet. All of my usual kind & generous drivers were otherwise engaged. I was prepared to call a taxi – which seems ridiculous to me since I have a perfectly good car in the driveway and the keys to use it. My hero – as usual – became available just in time to drive us. THEN we found out he needed to be sedated and it would take an hour or longer. We went to lunch and did some early Christmas shopping while the dog was having the meanest kind of pedicure. While my designated driver didn’t have anywhere to be urgently, I still felt like a total moocher asking her to schlep me (and the dog) around.

Tuesday, I have a desperately needed appointment with my chiropractor. It’s cold and there’s rain in the forecast. I likely have to ride my bike to get there. This shows how desperate I am to have my pelvis and sacrum realigned. This is pain unrelated to my brain (hey, that rhymed!) Maybe I should just figure out the bus lines.

Wednesday, I go to Stanford for my vaccine shots. This process is hours long and since I can’t ride my bike to Stanford, someone has to take me. My hero/neighbor has volunteered for the task. She’s never taken me to these appointments (usually on kid duty), so she’s in for an experience. I’ll be stuck with needles, blood will be drawn, questionnaires will be completed, and waiting with slightly creepy hand ice packs will occur. She’s been present for 2 of my 3 seizure episodes, so hopefully this will be like seeing the lighter side of brain cancer.

Then we need to take the dog back to the vet to have his bandage removed and his wound checked. My husband can help with that task, however.

Thursday and Friday, there’s stuff I’m doing but I can’t remember what right now.

The ugly weather is beginning, so additional driving needs will begin to pile up. There will be occasions where I’ll have to suck it up and ride in the rain. I have a bright purple rain suit for camping, so if you think you see Barney the Dinosaur riding a bike down the street, it’s just me. Christmas vacation isn’t too far away either, so I’m currently accepting ideas on how to keep 2 kids who like to push each other’s buttons busy and having fun for 2 weeks – while at home.

Now that you all know when I’ll be out of the house this week and I’ve vented about my unwelcome dependency on others and hinted at my cabin fever…

The point is that not being able to drive sucks. BUT in the spirit of full disclosure, if my kids get sick or injured and need to go to the doctor or emergency room, I WILL drive with only minor hesitation about breaking the rules. In the meantime, I’ll continue to feel incredibly grateful for the kindness of my neighbors and friends for taking my kids to school every morning, taking me to do grocery shopping or run errands, driving me the vet for my dog with brittle nails, and for delivering me to my ever-present trips to Stanford. I’ll also continue to temper my feelings of guilt for asking so much of them. Fingers crossed that I’ll have driving privileges back in January. I figure if I make it through the stress of the holidays with no seizures, it’s proof that I’m invincible – or at least that my meds are working.

 

I Want To Ride My Bicycle…

…I want to ride my bike. – Queen

To be honest, I’d rather drive. But alas, I am forbidden. So I must ride my bike, walk, or rely on the generosity of others and their vehicles. The weather has been excellent and my neighbors are very, very kind, so it hasn’t been an issue yet.

I bought a new helmet since my old one was about 15 years old and I was told it wouldn’t protect my melon. I figured my melon’s been through enough already and with the seizure risk looming overhead, it was worth the money (and it’s WAY cooler than my old one.) I got baskets (folding, no less) for the back of my bike, so that I can carry groceries, kids’ backpacks, scooters, things like that. My neighbor kindly drives them to school with her daughter, so morning’s are covered. Getting them back home, I’d like to manage on my own as much as possible, though. My kids have bikes, but they don’t fit in my super awesome baskets, unfortunately. Folded scooters and helmets do fit, but if you’ve ever ridden a scooter on a sidewalk for more than a mile, you’ll understand that it’s not their first choice of transportation home from school. So we walk, which makes the dog happy since I take him along. The kids happiness when they find out we’re walking depends on the day. I’ve determined the ratio of whining is directly related to the temperature – hot or cold. Maybe next week we’ll try riding bikes to school in the morning so they’ll have bikes there to ride home…but that would require all of us to get up earlier and 2 out of 3 of us are NOT morning people.

If we were in the southern hemisphere, the timing would be great – we’d be going into spring. However, we, up here in the northern hemisphere, are going into fall and winter during my ‘no driving’ period. So, when the weather turns bad, which it will, I’ll be even less independent or we’ll be cold and wet on a regular basis.

I understand why I can’t drive and I have no qualms with it, other than it limiting my independence. Also, it ultimately increases the impact of my ‘situation’ on my husband, family, and friends, because they have to help do more. I hate, hate, hate being so dependent on others for every day things. I like being able to run to the store for ‘that thing’ I need to finish a project/meal or to get laundry soap when I run out in the middle of laundry day or take my kids to their dentist appointments. My kids have after school activities and while we’ve managed to work out rides and schedules pretty well, there’s no way we could do more. When soccer season and on-campus activities end in the next few weeks, we’ll have to re-evaluate what we can coordinate.

I know that there are thousands of people who manage to get around without a car – shuttling themselves and their kids to and from places on a bus, train, taxi, bikes or feet. But when you’re used to that independence having a car offers and it’s taken away, it’s tough. I know…’poor me.’ I will hopefully get my driving privileges back in a few months, but until then I’ll suck it up and ask for help when I can’t get it done on 2 wheels or 2 feet. If brain cancer and seizures have taught me anything, it’s that sometimes you just need to be grateful you’re around to ride your bike or walk your kids home from school.

 

My Name Is Karyn, I Have Brain Cancer

Ironically enough, given the public display of my inner most thoughts on this blog, I don’t wear my disease on my sleeve. I don’t walk up to people and say, “Hi, my name is Karyn and I have brain cancer.” I don’t have t-shirts that say “Ask me about my cancer!” or “My cancer is rarer than your cancer!” I don’t have a grey ribbon tattooed on my body. If people know and ask questions, I’ll happily answer them…clearly I have no issues talking about my experience. I’ll often point them to this blog, but I’m not exactly handing out cards to everyone I meet with the address and a snappy catch phrase like, “Everydayleft.com: My Cancer Adventures and My Hope for Semblance of Normalcy for As Long As Possible.”  Ok, that’s not very snappy, but you get my point.

Since I went into ‘hermit mode’ for many months, I can honestly say I don’t know EVERYONE who was told about my Brain Surprise. I wasn’t in charge of telling them and there was a lot of time and memory lapses between my first seizure and when I was back in the routine of day-to-day life. There are people who I used to see almost daily that are in the dark. All they know is that last year in October, I disappeared for a while and my mom showed up to drop off and pick up my kids and help in the classroom on occasion. Then I showed up again – wearing a hat, moving a little slower, 25 pounds lighter. Then I’d disappear again from time to time. Some people stopped talking to me, or if they talked to me it was brief and usually about the weather. In my mind, they’re thinking I’m some crazy bitch who’s clearly got a drug problem or had a nervous breakdown. And honestly, they’re not far off – I take a handful of drugs daily and one of them keeps me from having a nervous breakdown. But in reality, most of those people are more likely trying to mind their own business or are fellow introverts.

There are those occasional awkward moments where I’ve assumed someone was told directly or through the grapevine and I get an odd look when I mention visits to Stanford, chemo, seizures, memory or something else related to my brain. I realize I have to give a brief summary of my situation and then I try to move on to topics that aren’t about my cancer. I could talk for days about the nuances of drug side effects or waking up confused in an ambulance or what it feels like to have your skull opened up with a drill and saw, but it can ruin the mood of a perfectly good conversation.

The tricky thing is meeting new people – do you come right out and say ‘So you know, I had a brain tumor removed in October. I just finished my last round of chemo unless it comes back. Essentially, I have brain cancer and am fighting a daily battle to keep it locked away. Would you like a glass of wine?’ Or do you pretend your life is pretty normal and you haven’t got all this other stuff going on in the background?

One of my fellow brain tumor survivors has just started college and is blogging about her experience. It’s probably therapeutic for her, but it will also be a good resource for other teens who start college after brain surgery or learning to live with a tumor. For those of us lucky to have no truly visible signs of brain injury (because that’s essentially what a large mass in your head, surgery, and treatment create – brain injury), it can be a challenge to explain why you start struggling to find words after a long night, why you record lectures instead of writing all of your notes down in class, why you’re napping while everyone else is getting ready for a party. Catherine’s blog (and her advocacy for brain tumor awareness) is eloquent and informative. She highlights the challenge of having an invisible illness and deciding who to tell which information, all while striving to have a ‘normal’ college experience.

Some people who find out you have brain cancer, have/had a tumor, and may have a seizure at some point really don’t know what to do with that information. It scares them (and if it scares them, imagine how we felt when WE found out). It can change the way they see you. It can change the conversations you have. It can change the relationship they may have had with you if they hadn’t found out. It can leave them in awe (according to them) of how you handle it all. We all handle it the best way we can – and honestly, even with all we’ve been through and continue to deal with daily, we’re just happy to be here, to have the chance to be a mom, a friend, a college student and so much more. To have the opportunity to make new friends, fall in love, have new experiences or do the things we loved doing before we entered the surreal world of brain tumors. Honestly, we’re just happy to be alive.

Navigating awareness: Balancing the need to be ‘normal’ and keeping people you meet informed. Just another day in the adventures of brain cancer.