“It wrangles you. It’s a control freak, gripping and merciless. Fearful you may forget it, it never leaves you alone. Not for a minute. It hops in the driver’s seat before you’ve had a chance to get into the car and sits there laughing as you try every which way, including sideways, to get in. You scream, “Move over! This is MY life!” but it’s already got you pinching every loaf of bread and counting the number of cracks in Safeway’s floor, down on your knees, everyone staring. So you make it a joke or like you dropped something, but they can tell when you try to stand and can’t remember how, that something’s wrong. You’re up and down and up and down trying to make it feel right and soon people start offering you fearful glances and a wide berth. Realizing you’re in it for the duration, you slap on your worn out sign, “IT’S NOT ME, IT’S MY OCD.” If only they knew what that meant.”
OCD (Obsessive Compulsive Disorder) is a relentless, cunning perpetrator. The physical and emotional energy it takes to combat nonstop, intrusive obsessions and compulsions is monumental and often totally debilitating. One of the most hurtful sidebars for my sister, Diane Hope, who agonizingly wrestled with severe OCD, was the fact it isn’t recognizable with the naked eye, therefore her inability to function simply made her appear crazy, to some, even scary. In truth, she was the funniest, most brilliant, creative, compassionate person I’ve known.
I’m not implying her disorder was in the least bit enjoyable. However, because Diane was exceptionally funny, her coping mechanisms were wildly amusing and became a saving grace for her and the entire family.
The OCD was like a third, unwieldy leg that forever turned Diane the wrong direction. It made her uncomfortably stand out, yet it also supported her unique dance, and for that she was grateful. In time, her compulsions took center stage, inciting a full on theater production as she exaggerated, waltzed with, scolded, talked to, mimicked and tried to laugh away the impulses. True, some folks were put off by her, but I thrived in her presence. I loved the feeling of freedom that came from playing in her wake, like following her lead at midnight as she marched down the aisles of Walgreens, singing to the Muzak while arranging 15 neck pillows around and about her body because it felt good and she couldn’t stop. With Diane I could be out loud, I, the quiet one who refused to yell when I was mad and whose throat would slam shut if I tried to scream.
Though not technically (or even remotely) twins, Diane and I were symbiotic. I took on water, she’d spit it out; she’d forget to breathe, I’d inject a hurricane into her lungs. I cannot express how much fun we had, nor can I convey the extent of the pain.
“The damned double stick tape hadn’t lost its tack in all those years. It was supposed to be a joke. We alleged that by trimming ourselves in adhesives, a myriad of lovely, exotic items might attach themselves and we’d end up looking like eccentric, old gypsies. But the only things that stuck were dog hair, Taylor’s gold stars, and the refrigerator magnets with freakish features. Instead of looking like gypsies, we just looked insane.”
Diane was broken yet so strong, the sparks that arose when she was momentarily aligned illuminated a great many fortunate people. It’s a tragedy when folks, out of fear, choose to navigate around those that appear abnormal or different, as they’ll never benefit from the gifts beyond their periphery.
At age 48, Diane discovered she’d had Hepatitis C for some 25 years. Four years later, the disease seriously kicked in, but because of the OCD, she was unable to attempt treatment – you had to be of sound mind in order to maintain and administer the very regimented therapy and even more stable to endure a liver transplant. Diane Hope passed away July 31, 2008 at age 56, due to liver failure, yet she maintained that no matter how life threatening the Hep C became, it was the OCD she couldn’t live with anymore.
My relationship with Diane was so textured, complex, dramatic, loving and hilarious it could fill a book, which, in fact, I’m writing. I’ll be posting bits and pieces on the blog as it progresses.
“A forget-her-not was attached to the sister’s forehead so people would stop and ask, and she’d forever be able to yak about the magical spark she called Hope.”
OCD is a serious anxiety disorder for which there is a variety of treatments. For more information, visit:
Hepatitis C isn’t always symptomatic, indeed many people are unaware they have the disease. However, if you do require treatment, the World Health Organization claims cure rates above 95% – greatly improved since Diane’s day. For more information, visit: