I have to admit, I am a fighter, as well. I have battled science and won, actually. I have been a “teacher” to the scientific world. I know better than to “believe the science” because science is an ever-evolving journey to find truths we do not know yet. I believe in the process. I believe in what has been uncovered thus far. I believe we also have a long way to go.
In the meantime, if you do finally choose to get out of your own way and try that adventure you have always wanted, for example, and don’t because of the fear of the what-if’s and maybe’s, who actually loses out in the end? Certainly oneself. For if we had the courage to try, to fly, to succeed…(and isn’t that what true life is about?), if we take our chances and live our dreams, would it not make it all worth it in the “end”? (if there really is an end) Because where do our true desires actually come from?
But when do we say enough is enough? When do we finally come to terms that there is no cure, there is no better tomorrow? Why do we allow ourselves to suffer immeasurably beyond what a normal human being should endure? Why do we get angry when our time comes and choose to put ourselves continuously through the wringer? Is it because we fear the other side of life? The side of which we do not see nor understand?
I have a confession to make. When I did fight the science it was because I was “that person”. I had a condition that would render me helpless over the course of it’s time. Each epileptic episode drew me further and further into the deep empty pit of mental and physical disability. The best ones were when I was on my own in a public place and fell out in a gran-Mal seizure, loosing control of all muscles and coming to sprawled out in an isle covered in whatever my bowel and bladder had been holding along with vomit, trying with whatever I had left to remember who I was, where I was, and how I had gotten “there”. I knew I would not be around in anther 10 years at the rate I was going.
It just so happened that a research program opened up at one of the best known hospital/universities in my state around the time I reached “adulthood”, so I went for it. Not because I thought I would ever be cured, but because I hoped that what they were able to get from me would eventually lead to a cure…one day. In the beginning I never dreamed I would actually survive, much less thrive. I volunteered for any drug they wanted to try to throw at it. I learned A LOT about the process of discovering all the terrible side effects years into the study of a new drug. I learned a lot about mental health and the way our brains work, how one area is able to “reprogram” and other areas are able to “copy data” from dying areas of the brain. I learned that, for me, brain matter did not so much matter as much as learning the ability to “reprogram”. This is where the fighting ensued. The brilliant researchers and scientists I worked with, in the beginning, had “solid” ideas on how our brains should respond to certain types of trauma.
Personally, my first brain trauma was caused by pneumococcal meningitis when I was 18 months old. It did not kill me, it did not cripple me, but the fluid build up on my brain did induce scar tissue, which in turn, erupted in seizure activity when my brain’s electrical signaling would go awry, as anyone’s does when they are in the process of learning something new. So, in that sense, yes, science was correct. Science came to the conclusion, and my own physical body fully agreed, that when the brain has certain types of damage, the electrical signaling will, in fact, trigger seizures. I did not fight that conclusion. It was as real and true as our humanness needing water to survive.
However, 2 years into the research program, over two decades after the initial meningitis, I did volunteer to have 1/4 of my brain removed for research purposes, AND because there was a slim chance it would stop my seizures. I was warned that if it did end up curing my seizures, my quality of life might suffer. They insisted that I would never be able to retain short term memories. They advised that I do not return to school to advance my education because they believed I would not be able to retain that information. They informed me that I would be on the anti-convulsion medicine for the rest of my life because, while they were going to remove the scar tissue that was the trigger point of my seizures, there would be more scar tissue left behind on a less active area of my brain. But, at the rate I was seizing, I figured it was worth a shot…after all, I had, maybe, another 8 years left anyway.
The procedure lasted 10 hours, during which time I was fully awake and conscience, reading flash cards and calculating math problems to the neurologist by the table. I remember the sound of the bolts going into my skull to stabilize me, then the little saw carving into my skull. It sounded like a Dremel tool. I remember, like it was yesterday, (it was actually 28 years ago as I write this) the excruciating pain as the doctors probed around inside my brain. I even remember the sound of my brain being removed after hours of testing and flash cards. It sounded like a thick milk shake being sucked through a straw. And, did you know that your brain matter is lighter than the fluid which surrounds it? Yes!!! For a few days after my head being closed back up, I could tilt my head and feel what was left of my brain float to the top of the fluid! THAT is a crazy/awesome/strange feeling, let me tell you!
After this, the real work began. While I never had another seizure after this surgery, I did remain a patient for another 5 years, and continued to do volunteer work in the research program for another 6 years after that. Although, in the first 5 years of being seizure free, I did start “fighting” the science. When the doctors told me certain things were impossible, I worked harder to prove them wrong. I fought the “truths” created at the time. The “truth” that I could not excel in education. The “truth” that I would not be able to retain information. The “truth” That I would never be “normal”. I was fortunate to find a really good book in the kids section of a science store at the mall early in my time with this research program. It had some bizarre exercises that, as I applied them, I discovered actually worked! I learned how to build neurotransmitters and develop connections within my brain. The neurology & psychology teams took notice. Every time I broke a glass ceiling they had constructed, they were enthralled. They were open to listening to what I was doing different. They were open to applying these techniques and amplifying the processes with other patients. The world of neurology is ever evolving and changing. Trusting the science also includes science trusting the individual(s). Never give up on your dreams. They may just help change the world! For me, it was, and still is, worth it!
Below is a link to the book that helped revive & recreate my life.
