Since the 3rd grade, my husband has dealt with seizures. Although the doctors insisted he would grow out of them, no matter what he has tried, epilepsy and seizures are still a daily part of his life. He has tried everything from extreme self-care, medical cannabis, traditional meds, and pretending they don’t exist. Nothing has worked.
Last year, another medication failed either because the med didn’t work or the side effects were too significant. So, at my husband’s quarterly neurologist appointment our neurologist said, “Maybe we should think about brain surgery. You are definitely medicine resistant, and we can’t get control of your seizures.” At that time, he was taking five meds a day (not including medical cannabis). I sat there, stunned brain surgery?!?! That was where we had landed brain surgery!? I had not expected the doctor to say that!
When brain surgery is suggested
Unfortunately, seizures have become a regular part of our lives. My husband doesn’t hold a job because of his seizures. He suffers from depression, overwhelming exhaustion, anxiety, brain fog, and aphasia. Not to mention, the brain effects we don’t even know about. So when the doctor said brain surgery was our next move after the initial shock, we both said yes how soon can it happen.
“when the doctor said brain surgery was our next move after the initial shock, we both said yes how soon can it happen.”
We have shared his brain surgery with friends, and they have all commented on how cavalier we seem about the whole thing. It is easy to be cavalier when your quality of life is near zero.
But it isn’t all doom and gloom. My husband is one of the most sensitive, caring, kind, generous people I have ever met. Because of his struggle with epilepsy, he is more empathetic and understanding than most. His ability to be patient, listen, and attune to other’s emotions is incredible, and I believe one of the gifts of his epilepsy. His creativity is off the charts; unfortunately, due to his meds, shaky hands, and a challenge with concentrating makes those creative endeavors more challenging. So the fact that we have hope that he may one day be seizure free and best-case seizure free without meds is a medical miracle.
Preparation for surgery
There are several hoops to jump through before the surgery is for sure. They only have 16 candidates a year. Over the next few months, he will undergo neuropsychological testing to map how his brain thinks. Then he will have two weeks in the Epilepsy Monitoring unit where they will drill burr holes into his head to attach electrodes so they can map where his seizures are located in his brain. All to determine whether his seizure activity is located in an area where they can perform an ablation on the brain tissue. Note of disclaimer: that is my non-medical license understanding of what is happening.
To raise awareness of this process and hopefully help others in the meantime, I will be writing more about this topic as we move forward.
When my son Brett was diagnosed with epilepsy, I had a terrible feeling of déjà vu. That is because my older son, Brynnon, also has epilepsy, so my family has dealt with it a lot. So much so, that I once caught my daughter tucking all her dolls in before bed and whispering, “Make sure you have your emergency medicine near you.”
While I was disheartened to hear that Brett would also have to live with epilepsy, I felt prepared because of my experience with Brynnon. Brett’s seizures were different from Brynnon’s so I had to learn how to address that. Unfortunately, Brett’s seizures were more severe and took more of a toll on him. Luckily, I knew what to pack for Brett to have everything he needed in case of an emergency. I memorized his list of medications backwards and forwards, so I could tell them to an EMT or a nurse if Brett was having a seizure and my brain was scrambled with worry. I had done all this before. I thought I was ready. But I wasn’t ready for drums.
Brett takes up the drums
About two years ago, Brett decided he wanted to learn to play an instrument, just like his older brother. He tried to pick up the guitar, but his fingers were too short to reach the strings. So, he settled on drums.
This is most mothers’ worst nightmare, but I saw it as a motivator. Due to some other health issues, Brett required physical therapy. So, my husband and I went out, bought him a drum set, and put it down in our basement. That way when he wanted to play, we could help him up and down the stairs, and it would be good for him.
Brett took to the drums quickly. He watched internet tutorials, and his brother helped him as well. He loved it, and I loved seeing him so happy, even if it made for some noisy nights.
Sometimes after a cluster of seizures, the next time Brett practiced, he would discover he’d lost some of his drumming skills. All that hard work and knowledge just washed away. This would always depress Brett, and I couldn’t blame him. I worked with Brett’s doctor so we could choose medications that worked, but did not aggravate his depression or cognition issues. Fortunately, Brett is resilient. Normally, something would reignite his passion –a cool rock performance on TV or just a song on the radio with an awesome drumbeat. He would get back to it, relearning everything he lost and then some. I was, and am, so proud of my boy.
Every rock star needs a roadie, and Brett decided that he wanted the four-legged, furry kind: a service dog. It was going to be tough to come up with the money for a service dog. That’s when Brett took matters, and his drumsticks, into his own hands.
With a little help from us, Brett set up a Facebook Live event. He let people know he would be drumming for donations to get a service dog. With that, he launched into his performance. It was all his idea, and his bravery was stunning to our whole family.
This tale ends with a tail, Taylor’s tail to be exact. Thanks to help from others and Brett’s drumming, we raised the money to adopt Taylor. Taylor is a beautiful yellow Labrador that has helped Brett feel safer and more confident. Seeing him playing with the dog that he earned doing something he loves warms my heart.
Although Brynnon’s journey taught me what seizures looked like and how to communicate effectively with his doctors, I couldn’t prepare for every twist and turn in Brett’s epilepsy journey. Yet, through it all, there have been some wonderful surprises along the way.
At my very first appointment, only 8 weeks pregnant, my OB asked, “What are your seizure triggers?” Stress and sleep deprivation. She gave a nod that said, “We’ll get through this.”
Regardless of epilepsy, I always knew that pregnancy and labor were going to be challenging. As difficult as pregnancy and labor were, postpartum care is where found the least support from medical professionals.
On Saturday, June 29th, my contractions began. On Sunday, June 30th at 11:23pm, my healthy, beautiful baby boy was born. It was a long labor, over 24 hours. It was intense, beastly, beautiful, and empowering all at the same time.
I felt an overwhelming amount of love as my baby was placed in my arms. It’s hard to describe, but it’s the type of love that you can physically feel warming your chest. I had the instinctual reaction of bringing him close to my chest and kissing his head. I felt like he had always been a part of my life.
Almost immediately after the birth, they dimmed the lights so I could nurse and the team of amazing nurses had dispersed before I even had a chance to thank them. My nerves started to calm and the pride of what I had accomplished kicked in. I just brought a human into the world! At the same time, the lack of sleep became increasingly noticeable.
My bed was wheeled out of labor and delivery to postpartum an hour later. My sleep deficit was becoming evident through hand jerks. I knew it was time to close my eyes but all of my soul wanted to simply hold my newborn close. As my hands started to twitch, I felt inadequate knowing that in the first hours of his life, the safest place for him to be was out of my arms.
Heartbroken, I called the nurse in and asked her to take my baby to the nursery. She raised her eyebrow and told me “mother’s don’t send their babies to the nursery these days. It’s healthier for baby and mama to stay together.” I whimpered that I have epilepsy, a seizure disorder (in case she didn’t know), and sleeping right now was a must and taking him to the nursery was a must. Her lip curled as she rolled my newborn out of the room. My body was starting to flop and twitch so I blinked my guilty tears away and leaned back into my bed. I fell asleep the moment my head hit the pillow.
Nursing and Epilepsy
It wasn’t long before another nurse came back with my hungry baby. Thankfully the 2 hours of sleep had recharged my batteries just enough that I confidently hugged him close to me to nurse. Again, I wanted to snuggle with him for hours but I could feel my body betraying me once again. After what seemed like the fastest hour of my life, I called the nurse to take him back to the nursery. Similar to the previous nurse, she advised me it was best for baby and mother to remain together. These comments were starting to get annoying! I was tired and didn’t want to have to repeat myself every time a new person came in. Again, I informed her about my seizure triggers, and without a hint of empathy, she turned one her heels and sped out. What was with these nurses? I started to feel judged as a mother. Did these nurses have no empathy for my situation? Or was I crazy be thinking this at all? Or maybe I have postpartum depression? I had so many questions but I reminded myself that to have my baby back in my arms, I needed to rest first.
Not even three hours had passed when a clearly irritated nurse burst threw the door and flipped on the lights. “Don’t you want to feed your child?” she scolded. I was caught off guard by her aggression. “Yes, of course I want to feed my child.” They think I am a monster, I thought. The nurse continued “the nursery is for premature and sick babies, and your baby is full term and healthy.” I had no reply. I was too tired to think and I started to wonder if I was actually being selfish and was a horrible mother. My child wasn’t even 24 hours old and in my mind these nurses had already made it clear they thought I was making bad choices. Had no other mother requested her baby be in the nursery? Right as a longwinded apology was on my lips, my partner stepped in to defend my choices and asked the nurse to leave.
The negative energy wasn’t in my hormonal head! I was actually being shamed! Surprisingly, I was grateful to have this feeling confirmed by my partner. As my confidence returned I reflected on my experience and was appalled by the way I had been treated. Two days later I was wheeled out to my car without a smile or word of congratulations.
4 months later and I am still appalled! My health was dismissed in the most challenging days of a new mother. I am sharing this experience so other women don’t have to go through it. I will never excuse the nursing staff completely, however I think that being more communicative would have helped.
My recommendation for mother-to-be is to create an epilepsy info sheet. Make hardcopies for all staff! In your info sheet explain the basics of epilepsy. Give your seizure history, medications, and triggers. Put your triggers in bold! Unrealistically, I had expected nurses to understand epilepsy, but the truth is no one knows it all (not even nurses!).
What’s your experience with childbirth? Have you ever had a medical professional dismiss your health?
My blog started as a way of sharing my epilepsy “journey” with those around me. It was a more detailed way of passing on information about what had been discussed at appointments without having to repeat myself loads of times. I also try and answer questions which people might have that they are embarrassed about asking in person or don’t quite know if they will offend me or not (chances are they won’t!). It is also a place for me to vent my own fears and frustrations and to keep me busy.
I also hope it is useful to other people who are part of the epilepsy community (those with epilepsy and friends and families) to help increase understanding and address stigma. This is my second entry for the Epilepsy Blog Relay and the subject I’ve been given this time is Epilepsy and Families. This isn’t something I’d normally be drawn to writing about because it hurts to acknowledge that having uncontrolled epilepsy has had an impact on my family, but I have chosen to explain ways in which it has had a positive impact on my “team”.
Sometimes when a ship gets wrecked the treasure is buried so deep it’s impossible to believe there can be any, but with enough patience and perseverance something good can come of everything.
I’m keeping it simple today and going for the “two stars and a wish” format. This is a primary school concept for marking children’s work whereby everything you mark gets two stars (positive comments) and a wish (something to work on). If you’re struggling with a long term health condition I’d really encourage you to do the same. The stars might not sparkle very often but once you’ve acknowledged what they are you can look out for them. During the next week or month try and be aware of what is happening around you. If you don’t have an immediate family use your extended family or network of friends. Try and find two things which are positive that are a direct result of your condition and notice how they affect that network. Write them down if you need to (yes I know the memory thing is very real).