Through an Open Door

I told myself (which is Kay speak for “my therapist told me”) to start focusing on just feeling my emotions and identifying them, but leaving it there.

…Except I’m going into a career field where I’m constantly training my brain to deconstruct emotions and find solutions. I may be emotional to the point of over the top sometimes, but something happened over these past years that created a schism between emotional, empathetic, nurturing me, and that painfully introverted and anxious, distant observer in my own life.

I’ve talked about this to death; that fight between me, myself, and I. It isn’t always the same topic, but it’s always a battle of heart and mind, dreams and reality. Possible, or impossible.

The impossible happened, though.

It did, didn’t it? Sure, my pain is still pretty rough and I will never be totally fine. Being able to say that my body was trying it’s best to kill me before I could begin to find myself and make my mark in the world is too painfully accurate, but that one game-changing word comes along; “almost”. I always thought it was an ugly word. It meant failure. So close, but not enough. “Almost there” seemed to mean swimming the globe. Truly, I hated it.

I was almost robbed of my entire future. I have almost lost people, and lost people to “almost”. I lost years of my own life, of healthy, normal years, because my body was always “almost” failing. Now, I can say it’s in the past, that “almost” never came to fruition, which is a blessing nearly impossible to comprehend still, but does that take away the grief of all the things that did die? The moments and minutes and hours and years and memories taken away or never given in the first place? The time lost, the people lost, the relationships lost, the parts of myself. Lost.

How long is this dance going to last? Sure, “almost” is beginning to transform into a positive thing. I’m almost ready to re-enter the workforce. I’m almost at a point where I can say I am a successful writer and blogger. I’m ready to start taking on challenges that I would have shied away from before because I didn’t dare hope for the chance to finish. Seeing “almost” backlit by hope is new, and terrifying.

Then again, you could say the same about everything in life. Terrifying until you shift to look at it with hope.

I can’t get back what was lost. I can’t say with perfect confidence that everything is going to be okay. I can hope, though.

That’s pretty new. And pretty neat.

The World Turned Upside Down

Cleveland Clinic was last week and we were, as usual going in with no expectations. This, historically, hasn’t ever been a visit that yielded positive news. Even when I called my parents to update them, they braced for the news things had gotten worse.

Except this time was different. I felt almost mechanical when I explained that I was no longer considered terminal. “Chronic, but stable”. Better news than anyone could have even dared hope for. Almost ten years of a life on hold, survival mode the only full time job I’d ever have, and an expiration date promising both that I would never have the lifespan or time to do everything I wanted and that, eventually, there would come a time where I would no longer be in pain, however sad that ending would be.

In a single moment, an unknown future unfolded long and winding out of sight. A horizon with limited opportunity became a labyrinth of possibilities. Instead of joy, I felt hollow. Scared. Overwhelmed.

There was bitterness and rage. Almost ten years of living on hold, only to be shoved back into a variation of normalcy, normal’s bastard cousin because I am still sick and in pain and disabled, but no longer dying, suddenly able to pursue a life and a future previously unreachable. What was it all for?

The expectations mounted immediately. “God obviously has big plans for you.” One individual said. My own anxious mind began to race at the idea of how much I had never even let myself consider because dreaming of a future I couldn’t have led to heartbreak. Grief embraced me and chilled me. Now I’m left grieving a decade of time lost, hopelessly behind the rest of the world as I figure out where this new road will lead.

I will be happy. I will join my friends and family in thanks and celebration.

For now, I search for the path and start walking and pray this new reality is a good one.

The Habit and the Fear

Tomorrow, we embark on another visit to Cleveland Clinic. This week has seen a lot of sudden, unexpected changes that sent all of us careening into uncharted territory without a map, without a compass, and the paths lantern lit at best, with this literal journey waiting for us to see what the last year’s worth of work has culminated into. Stability? Some semblance of as well as I can be? A step backwards? Time will tell.

That’s where everything kicks in. The cautious optimism and hope for improvement, the depression that comes from uncertainty and learned pessimism of past experiences. Historically, this trip doesn’t go well.

The anxiety lies in not knowing. I don’t know the outcome of any of what’s happening around me. My everything starts to work overtime as I try to guess where the twists and turns will lead me lead any of us, and send my frustration up and out of my hands in hope that it won’t come crashing back down on me.

So far, it’s a swelling cloud that hasn’t decided if it wants to dissipate or to drown me.

For now, umbrella is prepped, rain or shine undetermined, and packing will begin shortly. If anyone has a map, it’d be appreciated.

If not, someone has to make one, right?