Have you ever been afraid? I don't mean the 'scared of zombies' kind of afraid, nor the sort that comes from watching Texas Chainsaw Massacre late at night. I mean true fear, the kind that eats at your stomach even when you look at what is real and the kind of true fear that makes you want and wonder at all that is around you. The fear that you might lose it. The kind of fear...that I'm experiencing.
How could a fourteen year old be that scared, you wonder. I'm not a normal fourteen year old. My biggest concern isn't high school in the fall nor even my math grades. My biggest fear is that I will lose all of this. My whole life... It could really happen. Again, you must be wondering, how could I lose something so difficult to get rid of? There's a chance I could die. I don't have cancer or a congenital heart defect. I'm not in the ICU getting IV's or anything. It's not a disease that's so dangerous, rather the scary treatment for one...brain surgery.
When I hear the words "deep" and "brain" together in a sentence, I imagine a coil of wire with a bulky metal case at the end of it. This device may be going deep into my brain. The 'wire' is an electrode that a surgeon inserts into the patient's head through small 'burr holes' drilled in the skull. Then using MRI and CT scan images, the neurosurgeon threads this electrode to the target-point, the basal ganglia. Later the electrodes are connected by a 'lead' of insulated wires to a 'pacemaker' surgically implanted in the chest. When turned on, the pacemaker's batteries send electrical currents to the brain to correct abnormal neurological activity. The basal ganglia is the part of the brain that controls movement. So the pacemaker is used in this way to correct movement disorders. My basal ganglia, for lack of better terms, is screwed up.
I have a rare case of extremely severe Tourette's syndrome. Tourette's is usually quite mild, giving the subject only small facial tics and perhaps one or two vocal tics. A tic is an involuntary movement or vocalization. But in my case, it isn't so small. I have spasms where I can't stop hitting myself in the head or biting myself. I spit, curse, fall on the floor thrashing around. My walking is impaired by squatting, hopping and falling tics. Sometimes I slap myself in the face for no reason. I can't go out in public or go to school. My doctors have tried other treatments but nothing has helped. It got to the point a couple weeks ago I was going to be sent to a special hospital to live, I was so bad off.
No one has been able to help me, and I'm starting to give up. But there is one last thing we haven't tried- Deep Brain Stimulation. The surgery I just described is highly controversial for my condition. People with very serious diseases like Parkinson's have DBS as a standard treatment, but Tourette's is usually not severe enough to warrant correctional brain surgery. It's dangerous, involving shoving something around inside your brain, not to mention... Some people literally aren't the same after they have it. If not correctly calibrated, DBS can cause personality change among other scary, potentially irreversible side effects.
Most of my doctors cringe at the mention of brain surgery, but they can't seem to accept that what they are doing isn't helping. A few other doctors of mine have suggested it, seeing nothing has lessened my debilitating symptoms. I'm willing to take this gamble, even if it could mean changing who I am... Because right now, if I try to get up and walk across the room, I won't get there. I'll be hitting myself in the head and spitting, falling over and hopping and squatting desperately, futilely. I don't think anyone could want to live the way I do. That's what I have to be afraid of.
But what else is there to do?
Sometime hopefully soon I'll be meeting the doctors who perform this surgery to have an evaluation. So they can see if they think it will help me. But nothing else short of a miracle can change the path my life has taken. I'm hoping for the best.
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feedback welcome? I don't know why I felt like writing this, I guess to educate others about my condition and to reveal how serious it can become. Tourette's isn't just a kid who can't stop cursing. It's life-changing, embarassing, depressing, debilitating. This is my story of how I hope my life will change for the better.
