"If you're lost, you can always be found" was a quote that Cory loved. She said it made her think of her illness, and the episodes that she had to endure. In the difficult times, Dr. Z and I reminded her that although it seemed like the symptoms would never abate, the past had shown that good times would come again. The illness was cyclical, which to someone who wasn't suffering made sense and brought at least a little bit of hope, but to the person trapped in depression and hearing voices as real as someone standing right next to them, it brought little comfort. As her caregiver, it was hard enough to remember that myself at times. Those episodes seemed like the corridor in The Green Mile...they went on forever as you shuffled unwillingly along -sweating, crying, and ready to blow lunch- desperately wanting the walk to be over, but also dreading what may lay in wait at the other end.
Cory always said it was hard to see the light at the end of the tunnel. When I think about her experience, and how she counted on her family to comfort her, I always see us as light-bearers...grandpa with his flashlight, and the rest of us carrying lanterns, candles, a fricking glowstick...just whatever we could get our hands on to help her stay on the path of wellness, and help make the shadows a little less scary along the way, if we could. Step this way, Cory-Girl, and whatever you do, keep your eyes front and center, there's nothing good to look at on either side.
It's important to know that often there was nothing that could be done besides basic care and lots of love. I'd make sure she took her meds, that she ate well, and bathed. I would distract her mind. I would get her to laugh.
As far as the delusions...you cannot convince someone who is truly delusional that things are not what they perceive them to be. Sometimes, trying to convince them otherwise only makes it worse. They become resentful, and frustrated. I learned quickly not to do this, because it made Cory feel like I didn't believe her. It made her feel there was something wrong with her, and that she should not be feeling the way she was, which was just ridiculous. Cory didn't ask for this illness...why should she feel bad about having it or talking about her symptoms? She shouldn't feel bad for telling the truth.
So, the best route was to say something along the lines of "I know that you are seeing that, but I'm not." That way her feelings and perceptions were validated, but she also knew my experience of reality was not the same as hers. Most of all, I would tell her, "You are safe. I won't let anyone hurt you."
I said that to her so many times, it became a sort of mantra. She clung to me much of the time. When she thought there were people in the house, she would follow me from room to room. My shy bladder came out of its shell that year as I learned to sit on the toilet in her company, having no other choice. Again, her comfort level needed to come before mine. That's what you do when you're a parent.
When she would come out of an episode, she would usually feel a little better each day until most of her symptoms were pushed back into hiding. When she was at the beginning of an episode, it was even harder to watch than when she was in the middle, I think. It was heartbreaking to watch such a bright, intelligent, joyful little creature become sad, dull, and plagued with voices and confusion. She could feel herself slipping a little bit at a time, and would hold on for dear life. She'd say, "Mom, I don't want to get sick again. I don't feel good. I'm afraid I'm getting sick." Then she would cry helplessly as those stupid voices and overwhelming fears just pried her loose from reality, one white knuckled finger at a time.
My incredible girl would put on a brave front as long as she possibly could. She would get up each day, painting the mask she wore for the world, and settle it into place. She would go about her day, silently enduring the voices that told her she did everything wrong, that she was ugly, and stupid. She would adjust that mask to convey calm as she saw shadows in the form of human figures following her. After a few days, she could hardly breathe behind that mask, and was exhausted from keeping up the charade of normalcy. By then, those closest to her had started to notice her looking strained, becoming fidgety, having a hard time following conversations. Little things irritated her, and she became short with others. Eventually, there would be some type of explosion. The mask would get too heavy to wear, and it would come crashing down. When she had screamed out her frustration at me or her brother, I would know that both our fears had come to pass...she was having another episode. Sure enough, within a couple of hours, she could be found sobbing into her little hands, already regretting whatever words she'd yelled, and feeling resigned to yet another tour of hell.
"Cory, sweetie, just tell me next time. Tell me if you are starting to have problems before it gets this bad, then I can help you or at least understand when you're grumpy. Why don't you tell me when you start hearing voices?" I'd ask her.
"I don't like being sick. I just keep thinking if I don't talk about it, maybe it'll go away. Maybe it will just stop happening." she responded, looking at me with naked honesty, and those big green eyes that were so haunted, so tortured.
Bless her heart. I sit here in Rome with my laptop and cappuccino, remembering these conversations like they happened yesterday, sobbing in the salon. Stare if you want; my girl deserves my tears. I doubt I will ever make it to heaven, but if I did, man, would I have some serious questions for management. What did my sweet girl ever do to deserve such a vicious illness? And she fought it so well. Why take her when she was doing so well? What kind of sense does that make?
The only thing I have been able to come up with is that she had some horribly hard times ahead of her, and her sudden death was to save her from that misery. Even that seems like a shit deal, but it's all I got.
So lost to me, found by God? Maybe that's where we're at this time, Cory-Bird. I don't like it one bit because you were my world, but I always wanted nothing but your health and happiness. Hopefully, you now have both, and don't miss me too much. When you look down, pretty girl, just take a look at the people all over the world (the United States, Australia, Italy, Canada, Romania, and England, so far) wearing your bracelets, and know you are loved by people you never even got to meet.
Your voice will never die as long as I can speak.
I love you, Cory-Girl. You are my heart.
You are safe, and no one will hurt you.
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