I held a human brain in my hands tonight. A brain with meningitis or more accurately, a brain of a person who died of meningitis. I wonder if it was a man or a woman… I guess it doesn’t matter. The top layer of it was white and thick from inflammation; the sneaky, devious culprit that stole this person’s life. I stared at it and thought, “I wonder if parts of my brain look like this right now?” And once again that feeling surged within me, that burning desire to look inside. Show me. SHOW ME. Shrink me and put me in a tiny flying machine and let me fly around inside my body, in through my nose and up into the cavernous darkness of my brain. Let me turn on the lights and drift past the evil monkeys that are stealing my memories and distorting my thoughts, the ones that are mutilating my emotions and my perceptions of self. And if there is time, let me go down into my chest and my knees and my hands and all over my body, let me see the cause of years and years of pain. Let me see it. Let me stand face to face with it. I AM READY. For years I would visualize myself “unzipping” my skin so that I could see what was happening underneath, pushing aside my muscles and veins and tissues to see my organs, my pulsing heart, everything. Gross, right? Maybe so. The pic I posted here is a “spin-echo image” of a lupus cerebritis patient who was displaying major neuropsychiatric symptoms… just like me. The arrows point to the “brain abnormalities.” This could be my brain.
I asked all the doctors to show me the X-Rays that they took of my chest, to come back with my CT scan and MRI images, to show me the results of my spinal tap test. I asked and asked and asked and they all said yes, they would come back and show me and no one did. I guess the requests of a patient with displaying neuropsychiatric symptoms could be ignored. I guess they thought it was okay to make a promise they couldn’t keep because I would probably forget anyway. I also asked several people for an anatomy book so that I could somehow grasp what was happening to me, what was happening inside of me. Yes, I was asking all this while I was screaming and yelling and talking non-stop and crying and singing and throwing things at the people I love. Remarkable, isn’t it? I dare say it is.
I will be requesting all my medical records. It will be a long process, but it is my right. I want everything they can give me and not just from this last visit to the hospital. I will hold up those x-rays to the light of my desk lamp, I will look at my charts, my blood test results, I will count how many times I’ve been exposed to radiation from all the scans I’ve had in my life and I don’t care if I’m just some girl who spent 5 years in university learning how to “act.” I don’t care if a million doctors looked at everything in my file and they all came up with the same thing. I don’t care, because I want to see it for myself. I want to make my own conclusions. I have the power and insight of experience, the REAL EXPERIENCE of disease, the perspective of the patient, the one who REALLY knows. From now on, I am the head of my medical team. It’s ME.
Now don’t panic, dear friends, this does not mean that I will not listen to the actual M.Ds. They are experts it is true, this I cannot deny and I value their knowledge and the care that they give me, but I have now decided to be a truly active participant in my care. I will not sit and listen and nod and leave the doctor’s office. I will discuss, suggest and ask. I will go home and research and hypothesize. Call me Dr. Sherlock, I don’t care – it is the least I can do for myself… don’t you think? I have been in denial too long. 8 years! 8 long and painful years. Denial of my disease has almost killed me too many times. That’s it. That time is over. I am mortal. I get it. I GET IT! I finally get it and people, I ACCEPT it. Alleluia! When I held that brain in my hands tonight I knew. There was no turning back.
And so I thank that woman, that man, that wonderful human being that donated his/her brain to science. Thank you.
As soon as I got out of the hospital, I immediately took out my driver’s license and ticked off the part where you can choose to donate your body for medical research… I hope that when you are finished reading this, some of you will do it too.
I guess I should clarify where I got this human brain… although it would be more fun if we made up a story that involved grave robbing and other macabre niceties. Ok, ok. I went to my first “Frontiers of Neuroscience” session tonight. Remember the newspaper clipping my dad left on my bed that left me cry/laughing under my covers? Yup. That one. And I was right… it was fascinating. It was on “The Brain and Pain.” I’ll blog about it more later, but guys, you will NEVER guess the name of the doctor who led me on my virgin voyage into this new frontier. Seriously, I can’t make this s*** up…