I recently watched an episode of ‘Major Crimes’, a spinoff show to ‘The Closer’. Those of you who are fans of detective and police related shows will know exactly what I’m talking about. The episode’s scenario was that of a well-known lawyer killing the doctor of his deceased daughter for not providing her the medical care she needed to stay alive. During his confession, one of the detectives who was sitting beside him looked on and listened as though he knew exactly what the lawyer went through, and instead of blaming him for murder, he looked empathetic towards the lawyer. At the end of the episode, he revealed to his co-workers that his wife was diagnosed with epilepsy and was told by doctors that taking medication wasn’t a necessity for her. She listened to her doctors, and ended up having a seizure while on the road and passed away. Not only that, but his wife was 5 months pregnant at the time. The baby died instantly. The baby would’ve been 16; the same age as the lawyer’s daughter when she passed.
Firstly, it was so nice to see epilepsy and seizures come up in a TV show without having a character or two make a punchline out of seizures and call it as just ‘shaking.’ The more TV shows I watch with storylines that have anything to do with a chronic illness, with the exception of the ones that make jokes out seizures, the more I keep thinking that those who are in the writing rooms write these storylines based on their own experiences. I say that because as I watched the detective tell his co-workers about his wife’s death, I felt I could relate exactly to each and every word that came out of his mouth. I never drove a car following my diagnosis, and never will because of stories just like this. I’m also lucky enough to have a healthy child despite me experiencing two grand-mal seizures during my pregnancy. And I’m just lucky to be alive despite what all this crazy chronic illness had put me through.
When I was first diagnosed with epilepsy at the hospital after my first seizure following the car accident my husband and I were involved in, I was immediately given a prescription for anti-seizure medication, and the nurse told me it was recommended that I start taking them. The key word is ‘RECOMMENDED’, which means that I had a choice of whether to take them or not. I didn’t end up taking up on the nurse’s recommendation because, mind you, she just gave me that recommendation based on my medical file, which stated that I had cerebral palsy. In the eyes of medical professionals I was automatically diagnosed with epilepsy and given a prescription solely because I have cerebral palsy.
But that’s not true in my case. Yes, I have cerebral palsy. However, it doesn’t mean that I automatically have epilepsy. At least not in my eyes or in my parents’ eyes. That’s why I felt it was important to seek a consultation from a neurologist before I ever decided it was a good idea to start intaking any type of medication that I knew nothing about. The first neurologist, along with his assistant who was in the room during our appointment, I saw laughed at my face when my husband told him the summary of my medical history, so I practically ran from his office. The second neurologist was no better, but I had no choice but to stick it out with him as I desperately needed medical care. He prescribed me the cheapest drugs as he only seemed to care about my finances rather than my health. Within two years, I changed anti-seizure medications at least 3 times as every medicine the neurologist prescribed me gave me allergic reactions, and each different medicine gave me a worse reaction.
By the third medicine change, my condition worsened to the point that I felt the illness was going to kill me. So I stopped seeing the neurologist and I stopped taking my medication he prescribed me. I decided I had no choice but to take measures to my own hands. So I made the decision to get treatment abroad. It was either US or Israel. After doing much needed consideration and deliberation, I decided it was best for me to travel to Israel to get treatment. I got the opportunity to be treated by a neurologist who was the best in the world. I was there for 3 weeks and in and out of doctors appointments and medical tests that needed to be done in order to understand my body more thoroughly.
My trip to Israel was a success, and I was getting healthier and stronger each day that passed. I got another neurologist here in Toronto, is which where I live, to continue treating me. When I searched for a neurologist, I specifically looked for someone who specialized in epilepsy and pregnancy, and found exactly what I needed. I had a fairly good experience with him, and helped me change my lifestyle around that would aid me in improving my condition further. I learned over the years that managing a chronic illness isn’t just about taking medication, but changing everything about your life to incorporate your health into it as well. I think that this change in lifestyle partially helped me conceive naturally after a failed IVF around.
Everything went smoothly health wise for me for years. Even once I got pregnant, things seemed to be smooth sailing. That was the case at least until I saw my neurologist in person when I was 3 months pregnant. Once I started doing my IVF procedures, he sent me to female neurologist. I didn’t understand why initially, but I trusted his judgement nonetheless. Once I got pregnant, I got some red flags because she wasn’t treating me as she should have. I think her nurse even forgot that I was pregnant(!) as I continuously had to remind her of that. I made a complaint about that to my initial neurologist, and he completely dismissed it. When I had my first seizure during my pregnancy at 18 weeks, I immediately called my initial neurologist, but his receptionist said he was busy and didn’t have time for me until my next schedule appointment. I was completely engaged by that point. My health, as well as the health of my baby wasn’t a priority whatsoever. I wasn’t about to let this sh*t slide, so when my scheduled appointment came, I have my initial neurologist a piece of my mind. He apologized to me at least three times, and then came up with a plan for the next steps to take.
So why am I telling you all this, you ask? I’m telling you all this to make you understand just how important it is to continue advocating for yourself. At the end of the day, no matter what situation you’re in and no matter who you talk to, the only person you really matter to is yourself. Therefore, you should always remember to not only advocate for yourself on a daily basis, but to also love yourself and remind yourself on a daily basis just how important you are.