My World, Shrinking

I was never the soft one. I had the harsh edges and the strong opinions. A bit on the Asperger’s scale, what’s in front of my face is the most important thing in the world at the moment, and sometimes it’s hard for people like me to think about consequences. It’s haunted me my entire life. Rushing into motion. Action Jackson. I was never the soft one; that was my Gretel’s job.

She smoothed my hard edges, gently steered me, and no day…not a single moment in our entire time together, did I not love her more than the moment before.

My world was pretty small when I met her. I focused on what I do and paid little attention to the personal needs of relationships. I wasn’t sure if isolation was a cause or a solution, but it seemed to come naturally.

Being a keen observer of human flaws, weakness, vulnerability, it was easy for me to construct a persona when I taught or lectured. I could capture an audience with smooth tones, quirky segues, and subtle distraction like any good magician. I gave a credibly human performance, looking, sounding and “feeling” like someone you could get close to. Then the show would be over and I would slip out the back of the theater before I could be cornered and exposed for the introverted fraud I was…until I met my Gretel.

I’m not human, but I play one on TV

When my Gretel found me I was wearing my human mask. But something odd happened, my mask began to feel full, as if it were suddenly too small to contain me. What had been carefully constructed as a shield, an armor against the world, suddenly felt like a restraint. My tediously and meticulously crafted public face had come to life, pulling me out of the saferoom where I had secluded myself for most of my existence. I was never the soft one…until Gretel.

hand-644145_640My world grew, my goals broadened and I no longer sought ways to avoid social contact, instead, going Action Jackson into the new experience of fr, fr, friends. I had friends…lots of them. And my beautiful Gretel glowed. I was so proud of her for turning her life around, escaping the weight of abuse, low self esteem and debilitating self doubt. She had grown from her dark place just as she inspired it in me. And it brought friends.

But now, I find myself with the mask again. Now in addition to depression, fear, doubt, grief, I find myself fighting anger. Anger at watching her suffer. Anger at having a life ripped away just as things had started to go right. Anger at anyone who would threaten the chance of gaining that life back, like a certain pumpkin headed mob whipper (do you know how much coverage is for a middle aged woman with stage 4 cancer; if coverage is granted at all?).

I was never the soft one, but I was soft with her. I have been from the day we met. Her vulnerability made me humble, her strength inspired me and her kind gentle ways shaped me. The old, head strong soldier with the penchant for explosives (literally and figuratively) had been mellowed, tamed, domesticated by love.

But as she deals with progressively harder treatment, more and more severe side effects and a rapidly approaching wall in her race to achieve remission before her body can no longer handle the chemo, our world has contracted in on itself.

girl-1098611_1280The popularity of a bestselling thriller author evaporates when not able to promote, write, speak or dazzle. The masses who flocked to share my books and get close to us when we were on top, have dwindled to a trickle of dedicated readers and friends. The hundreds of people we met and became friends with as my precious Gretel broadened our social circles, shrank almost immediately upon her becoming ill. Without her to nurture the relationships, to tend to the subtle politics of maintaining connections, they have drifted away.

Our world has shrunk. And the low immunity to disease, even the common cold, has trapped us in our home for most of the chemo cycle. Only when we are days away from the next cycle can she venture out safely. Six days last cycle and it’s looking like only four or five days this coming cycle. A trip to the grocery store for me is a rare and welcome escape from our home prison–and she is not able to accompany me most of the time. As I revel in the simple pleasure of walking the aisles of the supermarket, seeing faces that aren’t on a TV screen, a deep angst forms, a guilt that I’ve left my Gretel at home–so I hurry with the list and rush back, not lingering outside.

I never spent much time in front of the TV before she became ill. But as her treatments leave her collapsed on the sofa, I find myself there with her more and more often. My days in front of the computer are short, sometimes skipped all together; given up in lieu of precious time spent with her.

I have discovered Movies I’d never seen. Connections I made when at the height of my books’ popularity come to me on the screen. I had always been a fan of Clifton Collins Jr, and after connecting with him through social media and sharing our books with each other, it’s a special treat to see him in something new (West World is amazing).

A good friend, Kirk Fox, got to treat us to a whole season of TV Comedy Crime in Rush Hour, a show I know I wouldn’t have watched had I not known what a good man he is. And we were delighted by the show…I’m so glad my connection to him led us to it.

Tom Arnold has been so kind to me. One of the first celebrities who I sent signed copies of my books to. Seeing him unexpectedly in an Indie movie, or re-watching him in some of his awesome roles takes on a new meaning now (best sidekick ever in True Lies).

But small as the world has become, I look at these and other celebrities, authors, promoters, singers, news personalities that I’ve connected with over the years and can only feel sad that dynamic in our lives is in our past…we can’t see forward any more. It’s nostalgia we feel when we see or hear these wonderful people, not excitement over future connection. We don’t feel a future. We feel the next round coming in six days. And we tense at the prospect of the next scan, or the next appointment, or the outcome of an election that literally holds Gretel’s life in the balance.

nightmare-1699071_1280Survival, regret, isolation, and putting one foot in front of the other has become our life for more than the past year. More than a year of wondering, fearing, what comes next. It’s devastatingly draining.

We’ve even become too tired for hope. Hope takes energy. It takes energy to smile when you’re sad. It takes effort to post how awesome your books are when all you care about is making lunch different than the day before on the days she can eat solid food. And it takes restraint not ripping into someone for posting factless rants about a politician who is directly capable of keeping your spouse alive; restraint takes energy. I never was the soft one.

And if she is gone, I honestly don’t see how I could ever feel anything soft again. In fact, I’m not certain I’ll ever feel anything but bitterness. That’s what it seems like from the bottom of this hole in our shrinking world.

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