Courage

Since I've started writing, some people have come to me with questions or their own medical stories. These both gut me to the core and fill me with so much awe for human resilience. I'm going to share a couple, without any personal details just to give you an idea. Please understand that when I talk about these, it's my interpretation and any wrong facts are my fault alone. Also, my mom has a master's degree in special education, and, being her daughter I've seen first hand some of the most incredible things. Incredible in both the amazingly beautiful and the amazingly ignorant form of the word. More on that later.

I have a friend who was diagnosed in their teens with Bipolar disease. For literally a decade they fought both the medications and all the social and psychological ramifications of having this disease. The medications are severe, I'm not going to sugar coat it. They can also add complications to other disorders or medications (like many heavy meds). My friend is now finding out that it might have been a misdiagnosis the whole time. It turns out that Hashimoto's Hypothyroid (sound familiar?) runs in their family, as well as other auto immune diseases on both sides of their family. Lythium, one of the medications, can affect Thyroid levels as well as other things. This person's TSH (a Thyroid blood lab) has been increasing over the years on the medication and THEY, not the doctors, the patient was the one to catch it. What do you even say in a situation like that. "Whoops"? A decade. An effing decade of misdiagnosis. So. Stupid. They don't deserve this. No one deserves this. The individual is now doing their own research to find the medical care they need to get their symptoms under control. This is one of my biggest pet peeves. When you're a teen not only do you have no legal rights but you don't have the independence to undertake this journey alone. You're completely at the mercy of the doctors and your families, and I pray to God that those individuals will do their jobs to protect you. It doesn't always happen, with or without the best of intentions and it's the teens and children who suffer from it. When we're in our mid to late twenties we've had enough experience and we have the capabilities to take things under our own control, legally, financially, medically. No one can hold us against our will and no one can prescribe medical treatment we don't want. Patient advocacy is a growing field that is so vital. Someone needs to speak up for the patients and for their families so that they don't get lost in a system that more often than not sees them as a bar-code instead of as a person.

I was gutted when I found out about this. In one way it would have been easier if I'd been the only one who'd had an experience of this kind. Years of misdiagnosis and disbelief. Every time I hear about a similar story it breaks my heart. I know how much you question your own conviction over the years, how much it shakes your core to be told over and over the symptoms are nothing. You need a counselor. It's growing pains. You're just an anxious woman. It's happening over and over again, to women of any age, to children and teens. What do they teach in med school, that it's ok to disbelieve someone because you, oh holy doctor, are so much higher above them? I guarantee if we were to look, you would bleed the same blood. Your chemical makeup is the same. You cry the same tears. The excuses are wearing thin.

Another story I have to share, is about a very young woman that my mom worked with. She has a very rare seizure disorder. When I met her she was three. She'd had over a hundred "stat" seizures. What I mean by that is that her family had to call 911 because of the severity of her seizures. She had hundreds of "blink-out" seizures, I'm sorry I really don't have a clinical name for them. Basically what happened was she'd literally blink, almost fall and catch herself and that would be the extent of her seizure. Another problem was her body wouldn't snap out of the seizures like typical patients do. There was one time she had an eight hour seizure. I hadn't met her yet but I remember how upset mom was. Mom and the patient's family thought they were going to lose her. Mom had to tell the doctors she was still seizing. The right side of her body was normal but the entire left side was locked. The problem was they'd already tried so many medications to try to stop the seizures that it became a balancing act. She had what I think of as seizure storms in her brain, imagine a thunder storm in a cloud. Because of this, the surgical procedure of removing a portion of the brain to stop the seizures wasn't an option; they were never localized.

Eventually she was diagnosed with Dravet Syndrome in New York.There's a serious danger with these children. They have full blown seizures, but their little bodies aren't meant to handle the amount of medication needed to stop the seizures. The hazard is either their hearts will stop or their brains will succumb to the trauma. Every time her caretakers had to give her the seizure medication, they would then have to call 911 in case her heart stopped and they had to resuscitate her. She was so used to this that when she heard sirens she'd assume they were for her and she'd go to the window to see if the paramedics were at the door. The first time I saw this I had to go to my room because I didn't want her to see me cry. If the children with this disease can make it the ages of seven to eleven, they're thought to have a chance. The fire department at her town knew her and loved her so much that they ran in a phalanx formation around her at the Epilepsy 5K every year while her mom ran with her in the stroller.

Another problem with Dravet Syndrome is that it's so rare, none of the medications are approved by the FDA. It's not lucrative enough to merit funding. What this means then, is that no insurance company will cover the costs for the medication. This is why the disease is so dangerous. Not many families can afford to pay face value costs for medications from Europe or Canada. I know for a fact that mine wouldn't have been able to. This is why so many of the children with Dravet die early. Either they're given too much medication and their bodies succumb or their families can't afford to keep paying their medical costs and have to let the children fight the seizures as best they can on their own. As more of these stories are coming out, there are organizations being formed to help patients find resources but it's not enough. With my girl, she was very fortunate. Her parents are wealthy enough to be able to cover the costs of her medications and ambulance trips. If they hadn't been, her story would have been very different.

Eventually, after my mom had been working with her for about a year, she felt she was stable enough to come to our house, and that's when I started working with her. My girl has the brightest smile, she lives every day with so much joy. She loves to be outdoors, to dance, to play. Despite everything she's never bitter. There were times she was sad, of course there were times. But she has too much love to dwell on it, and it's something we can all learn from.

She knew when her seizures were coming, and there was one time she kept saying, "I don't want it, I don't want it." And she started crying. My mom had trained my sister and I on what to do if she had a seizure so that we could have one person help her and one call 911 and wait for the paramedics. That day I held her in my arms while mom talked to the operator. Her seizure started and we gave her the medicine and I held her the whole time. I kept telling her, "I'm here sweetheart. Kim's here and Connie's here. You're not alone. We're here with you and we love you with our whole hearts." The paramedics came and tried telling mom she couldn't come in the ambulance. I remember laughing at her reaction, "Oh yes I am and you are not stopping me." My sweet girl snapped out of the seizure on the ride to the hospital, and her mom and I were there waiting. One of the firemen had given her a helmet that she was wearing. She said, "Sorry, kids." when she saw the stricken looks on our faces and when I hugged her she said, "Thanks, Kim". Of course, I started crying. I'll remember that day til I die. This one small girl facing the terror of her own Hell with more courage and love than I'd ever seen before.

She had a seizure every eight days if she was lucky, if not they were more frequent. Every big seizure scrambled her speaking and reading skills. I don't know how many times mom taught and retaught her how to read and speak. She'd get so frustrated because she knew the information was there if she could just find it. My mom found out that her signing skills were untouched by the seizures and that became my girl's outlet, she even taught me some signs. That and dance. She decided watching me dance and dancing with me was the most special thing. Her favorite thing to do was spin. Well, that and steal my pointe shoes and teddy bears to take home.

I want you to take a moment. If you couldn't trust your brain to retain information as vital as expression and communication, what would you do? If you fought your body for your life every week, if we lived with that kind of courage what could we do? Please think about others. These children, these teens, these patients without age or gender are fighting so hard just for the right to their own bodies, to their own lives. Stop thinking for a minute about ambitions, vacations, parties, texts, sex and money. Just for a minute. Consider them. Consider their battles.

Do you get where I'm coming from? These patients need a voice. They need to know that they're not alone, and I don't have the slightest idea where to start addressing the problem. Regardless, it needs to be addressed. And I'm not going to stop until I know I've changed the process, made it better for people. I need help. I want to give these people someone who gives a damn, who's listening and taking them seriously. I'll do what it takes, I don't care. Do I need to go from med school to med school sharing these stories and staring the students down til they're intimidated sufficiently? Probably wouldn't be the best plan. Do I need to write to every Senator, every Representative we've elected and the President? Go and talk to them about it? Seriously. I'll go. I was a delegate. I'm not intimidated easily, it's one of my biggest faults. This issue is so big and I don't know where to start, but I'm taking it on the second I'm out of rehab, and I'm starting to plan and network for it now. Please give me ideas, I'll take any.