It is time.
I have been working on this particular post for some time. It just got too painful and I put it away. Everything felt so disjointed. Yet, one of my friends inspired me with the way she takes up a cause. Sometimes it's hard to have a voice, an opinion, and feel like no one is listening. So, this is more for myself than anyone else. I guess that now is better than never.
I know emotions. I studied them in school, felt each one and had to define for myself what "joy" or "despair" feel like for me. One significant emotion that has come up in my life is pain. Emotional and physical.
When I was working with sex offenders for years I could not "get" why some of these people would intentionally hurt themselves. Cutting, digging, scratching, physically harming themselves. Over time I learned that it was because it is easier to feel physical pain than emotional pain. To escape the emotional pain, they would replace it with something that they could understand. "I hurt, because...."
I have never been to that point where I am ready to physically harm myself to not
feel anymore; but I understand the concept.
Someone with special needs that has their faculties about them (most of the time :) ) has to go through a process of grieving. You all know about the grief cycle. Anger, denial, bargaining, yada yada. Sometimes you plow through those emotions really fast, other times you are stuck. I think that I have been stuck.
It is really hard to get empathy from doctors, friends and yes, even family when you look and act perfectly fine the vast majority of the time. I don't have burns from a fire, a bald head from chemo, droopy eyes, or a disfigured limb. What is malfunctioning is hidden away underneath my unruly hair. If there is not a physical reminder, most people just slip into the "out of sight, out of mind' mode. I think it makes being understood harder. You want people to treat you like an equal, but you want them to recognize your struggle. It IS a struggle. A daily one. I have to think about my body all day, every day. If I did not, I would be doing something stupid and would probably be dead. If I am driving, I have to constantly be aware of how I feel, what I have eaten, etc. If I am in the grocery store, I have to scan and look for the exits and the best route to get out of there if something happens. If I simply want to watch a movie with my husband, I have to weigh the risk of possibly not getting enough sleep and it affecting the rest of my day. I want to lose weight, but I can't exercise, because it has caused seizures. The most minor, stupid details need to be thought through. Simple things like boating, concerts, hiking, or even staying up late can ostracize you. I gets exhausting when I have to think about my health and think about Cole constantly. It is painful to not feel understood. Even by those who you think should automatically get it because they are closest to you.
I
tried to be the perfect child, to somehow make up for all of my flaws. The money and time that my parents spent, trying to fix me. I obeyed curfew, never snuck out. Did most everything that was asked of me. I even obeyed the speed limit, thinking it would help. I got excellent grades. Tried to excel in everything that I could control. I was even the first in my family to graduate from college, something that I felt was a real achievement. Somehow, I felt like it was never enough and that I should try harder.
I am not sure why I was born with an adventurous spirit and a limited body. Another question I'll ask when I get to the other side. I have a real desire to do things that are dangerous like sky diving, flying an airplane, bungee jumping and scuba diving. There are plenty of people out there that would say, "No way! I like my feet on the floor." Can't do this stuff....but it doesn't mean I don't want to. Sometimes I really wish that I could just put on my tennis shoes and run, just for the fun of it. I used to love performing. It was something that I felt I was good at. Musicals, theatre, violin, piano, voice-and I have had seizures at all of them. Why didn't I quit? I don't know! Eventually I realized that it was just too much of a risk and had to give those things up, but at the time I just kept plowing through. Was I stupid or determined? I'm not sure. It would be easier if I never wanted to stand on a stage at all. I think it is supposed to teach me patience...or something. Most people would not put themselves in a situation where they knew the chance of going unconscious, shaking and peeing their pants was 50/50; but I guess I am not most people.
Getting ready to tell someone that you are dating that you have epilepsy is one of the hardest things imaginable emotionally. Especially when you have been rejected before "suddenly" after you have spilled the big secret. "Will they still like me?", was an actual valid concern. I had good experiences and bad experiences out there and I am SO glad that I never (knock on wood) have to go through that again. The judgment, the anxiety, the loss. I have found an eternal companion that has committed to be with me forever-and for that I am
forever grateful.
I remember once when I had a particular bad fall when I went unconscious at the beginning of a seizure. I was walking down the street on my college campus. I hit the pavement hard and ended up with a fat lip and a black eye. A boy from my home town that had asked me out a couple of times was recruited to drive the invalid back to the farm. That was the most awkward ride ever. Two and a half hours of looking out of one eye at the road in silence. He never asked me out again. Or the boy that told me he was breaking up with me because I could not run a marathon? That was awesome. I have a bunch of these stories.
I did not get to go to my prom because I had a seizure minutes before my date got to the door. I, unfortunately had previously had a seizure at a school dance. I had tried so hard this day to just take it easy, even missing the morning activity. This was my first love and I still remember the anticipation and excitement. Memories like these have been marred by illness. Luckily, this particular experience was replaced by even better memories, much more exciting than a gym full of sweaty people. A lot of these stories did not have happy endings though.
Loneliness is something that I have felt over and over again. Whether you are "different" or not, I think everyone experiences times when they are lonely.
When I received the answer that I was not supposed to go on a mission-it devastated me. I know now that I probably would have had a stroke (or worse), and that I was supposed to move to Hawaii; but in the moment I was so upset. Why couldn't I do something that was SO good...just because of my body? Realizing that Cole is going to go through the same thing is hard.
I did some stupid stuff growing up. I seemed to have a different picture of myself than others did. I would run for elections for student government EVERY year. I never got voted in, except my seventh grade year, the first in junior high when groups and cliques had not been established yet. I just kept trying, probably to the dismay of my opponents. Why didn't anyone tell me I looked like an idiot? Would I have even listened? The rejection year after year was awful, but I just got back up and tried again. Sometimes I can be so stubborn, it hinders me.
I was one of those girls that secretly worshipped the cheerleaders and the dance team. I knew all of the routines and can still do most of the cheers today-umpteen years later. (I can remember the "Fine and Mighty Pirates" but can't remember what I had for breakfast yesterday...go figure!) I tried out for the dance team in 9th grade. I had a seizure at the try out. I still made it-I have a hunch it had to do with some other people asking/begging for mercy on my behalf. To have your peers watch you lose complete control of your body is hard on a teenager. It's like putting a sign on your forehead that says, "Yep! I'm broken!" That was as close as I got to sports. No basketball, soccer, volleyball, little league or anything like that for me. I had my music, but even that got taken away because of my health. It is so funny now that one of my best friends was one of those girls. I told her a while ago that I totally wanted to be her in high school. She just laughed and told me that it was not that great and she wished she did not do those things at all, she just wanted to be normal, like me! How funny is it that people all have different perspectives. We all want what we can't have. Maybe if I did not have limitations, my wants would be totally different.
To have my driving privileges taken away in high school was devastating. I lived 45 minutes away from the school and had to go back to riding the bus for 2 hours, as a senior. Not the coolest thing that could happen. I had to be driven by someone younger than me to my early morning choir class. I felt my freedom slipping away.
I was a choir geek. It was one place that I felt like I belonged. When I graduated from high school, I knew that I wanted to be a music therapist and help others heal through the power of music. Even though I had to quit playing the violin because my body could not handle the stress, my senior year. I still felt like I could focus on singing and become one of the greatest music therapists ever. I had a seizure during one of my tests in my music theory class, my second semester in college. A girl that knew where I lived offered to take me home. Don't remember a thing. My professor told me that I could not be in the program. Another rejection.
I grew up on a farm. I felt that I only had one thing that bonded me to my dad; horses. He loved them, I loved them. No one else in my family really cared either way about horses. Add rodeo queen to the list of things that I wanted to be :) I have always had the dream to open a facility for struggling teenagers and kids with special needs. I even drew up the blueprints in college, eagerly showing my dad the floor plan of the barn, including an office just for him. I named it Lotus Ranch, because of the symbolism of the lotus flower. Every morning it rises up from under water and blooms. It is also the symbol for eternal life. I have gotten my certification as an Equine Assisted Growth and Learning Therapist. Horses don't lie, and using them in therapy is incredible. However, they are powerful, dangerous animals. I have had two seizures around horses. You can not put yourself in the way of that large of an animal and be unconscious. So, I have given up another one of my loves. I can no longer ride horses. The dream of Lotus Ranch has been put on hold, and I must deal with the grief in its loss. I think that I fluctuate between despair and denial with this one.
The physical pain that my body goes through after having a seizure is hard to describe. My mom says that I used to tell her it was like needles were being stuck into my body and I had just been run over by a truck. After your muscles actively clench and unclench rapidly for a period of time, they will be sore. It's like Jillian Michaels on steroids. I usually have a hard time walking straight and a massive headache. The physical pain rarely lasts more than a couple of days, but the emotional pain is a lot harder to get over than sore muscles. There is a huge letdown and almost depression that you go through each and every time it happens, no matter how many times it has happened before.
The reality that my son has to go through these same things, causes me more pain. There are plenty of good times sprinkled in with the bad, but I wonder how it will shape his character. When even precious moments in my life, like giving birth, or my wedding day, have that shadow of uncertainty, "Will I make it through this?" What can I do to help him get through? I'm not sure. Sometimes it's hard to be strong. Sometimes people tell me that Cole is so lucky to have a mom that understands what he is going through. I really don't think that having some of the same difficulties makes me a superhero. Already he is going through the same things because he looks and acts normal the majority of the time. He just doesn't understand that he is being left out yet. He will, soon enough. I want to make his life as happy as it can be, to try and inspire him to push through his limitations and enjoy being alive. I just hope that I can have the courage to get him, and myself, through the painful times.
It was liberating to have multiple people who understood our version of "normal". To swap horror stories and laughter felt great. We have not been social for a while, for obvious reasons, and we are both social people. It was kind of an out-of-body experience to witness multiple seizures and everyone knew what they were doing. One child at the conference accidently pulled the fire alarm and we all started to worry about the same things. The noise, the flashing lights, we will have to go outside-get the glasses and hat, bring the cooling vest. It was almost comical. At least we can laugh at ourselves. 
Cole had a blast with his grandparents. He had an incredible week, with no major seizures! When we walked in the door this afternoon, saw his smiling face and heard his laugh, we felt strengthened to fight for him-because he deserves it...just like every kid out there with Dravet and other rare disorders.
