OCD – A Relentless, Cunning Perpetrator


“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 and her daughter, Taylor

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.”
 

 

 

Resources

OCD is a serious anxiety disorder for which there is a variety of treatments. For more information, visit:

About Us


https://www.nimh.nih.gov/health/topics/obsessive-compulsive-disorder-ocd/index.shtml

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:

What are the Signs & Symptoms of Hepatitis C?


https://www.cdc.gov/hepatitis/hcv/cfaq.htm

 

 

10 thoughts on “OCD – A Relentless, Cunning Perpetrator

  1. Terry Czmpasano

    Beloved Susan,
    With all that I am, I love you and I love Diane. Since the very first time I embraced the PP
    you have served as a shield against my earthly chaos and a path to my artistic desires. I appreciate the excellence , knowledge, and the passion that you share, it creates a safe haven for me to heal and in turn help others. Laughter is the best medicine. With that being said I can’t wait for your new book. Your writings send me to the moon.
    Sweet Peace, Terry

    • Dearest Terry,

      There’s always been a special connection between the three of us – we walk together in helping others to heal. Sure, Diane’s a bit lighter than you and me, but. I’m forever humbled by your words. Your heart sends me to the moon!

      Peace and love to you.

  2. Debbie

    I read this to my hairdresser today. He asked me how I felt about reading it since these are my sisters after all. Good question, huh? I hesitated a bit and then said I felt SAD – for the loss of one big sister even before she passed and the deep pain they both experienced throughout the journey, HAPPY – to remember good times I shared in their periphery, and JEALOUS – of their ability to experience sheer joy and abandon together. I was glad to have been asked the question. It felt good to dive into the deep end and see the undercurrents of my formative years.
    Sue, you are such an inspiring writer, artist and human being. Oh, and one hell of a sister. Love, love, love you.

    • Oy, Deb, you brought a tear. I’ve known you felt this way, but reading it choked me. Oh that we could
      have a do-over (without the pain). I hope you know how important you were to Diane and have always
      been to me. Have I mentioned that before? It’s just we have different roles, and you must admit,
      together we make a remarkable team.

      You are pure goodness and compassion. I’m in awe at what you’ve accomplished in your life.
      I couldn’t love you more.

  3. Carol

    Your loving post about Diane made cry and laugh and cry again. Aren’t sisters wonderful? They allow us to be who we are and to see who we are not. If we’re lucky the gulf between us makes bridge building easy where differences are celebrated because there’s just nothing like loving a sibling warts and all the glorious creative council each can trade within a bonded pair.

    I have a daughter who has fought through depression and bi-polar disorder, a lovely confused little person mostly who seems to have finally been medicated correctly. She now works facing her fear and finding fun and joy in helping others. She’s taken on her gentil compassion rather than sadly drifting away from people, family and friends. She has tossed off the blues. On the days she still has troubles she can reach out for help and everyone is happy to raise her up. As her Mother she would not allow me to be her go-to person for most of her life. Even that has turned around. We can have fun in our company together so I’m seeing us more as sisters at this stage, I pray that while maintaining my mom space I can also be silly with her soon. We’re getting there, but we appreciate our differences in a way never before. She’s the bravest person I know. We think very differently just like my sister and me, but there’s a nice template, a bridge, in place for us to allow freedom in who we are and who we ar not.

    My brother has finished the cure for Hep C this year through the Veterans admimstration hospital and we’re extactic for him. The treatment is horrendously expensive , but it works well for most.

    I’m sorry you’ve had to lose such a bright, fun sister. But I’m thrilled to read about your struggle to help her live and enjoy being loved as she was. I’m going to want your book. Thank you.

    • Carol, thank you for your heartfelt comment.

      Yes, sisters are incredibly wonderful. Can’t imagine life without that level of comradery and love.
      You’re right, they do make great mirrors, and even though the reflection’s not always pretty, it’s okay.

      Your dear daughter is very lucky to be part of such a loving family. Though from what you say, I’ll bet
      she’s easy to love. I’m SO happy her meds are effective – that makes a huge difference. I hope she
      continues to engage – finding fun and joy in helping others is enormously healing and empowering. What a
      strong, old soul she must be. It seems you’re walking that wobbly line between being a mother and a sister
      quite well. The main thing is you’re there for her. The silliness will come.

      Congratulations on your brother clearing his Hep C! That’s fabulous. Hopefully, the VA picked up most
      of the expense.

      It feels like Diane’s actually with me as I’m writing the book, which is fortunate because I could use
      her two cents. I appreciate your interest. It’ll be a while, but I’ll notify you when it’s published.

      Take care.

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