Okay, I get it. There are lots of people worse off than me. I know that. When I was young and very upset at what was happening in my family I used to try and gain perspective by reading about the Holocaust. And though I learned a lot about humanity (and inhumanity), courage and survival, still my pain was my pain. I couldn’t negate it or eliminate it just because of a growing awareness of pain on a global scale.

Just as someone else’s pain is theirs alone. They own it, they bear it. Comparing my pain with someone else’s is unproductive, a waste of time. It is what it is.

That is quickly becoming my mantra, bizarrely enough. I don’t know how I picked it up or where but that phrase is now part of my lexicon. It defines my outlook on life. It helps me react to negative circumstances in a…well, if I am unable to muster a positive or uplifting response, at least not a life-grindingly negative one.

Having Parkinson’s sucks.

It is not just the day to day things, the physical challenges, the demands on my patience with myself, and my compassion. It is those middle of the night terrors that drain me most. What if? What then? Visions of a hard future batter my emotions and my resolve. I struggle to keep in the now, keep my focus on the present. After all, who knows what is around the next corner. We only have today right? Actually we really only have right now…and now..and now.

I go to support groups (and will continue to do so) but it is scary and at times overwhelming. Sometimes examples of what my future might entail are right there in front of me and it can be a harsh look in  the mirror. I know that the reality is different for each individual, PD does not follow a uniform path. But still…I feel myself thinking I don’t belong here…yet I do. I want to run away, but I can’t run from this.

Maybe it is the combination of being 55 and of having PD. I think I am grieving the loss of my dreams, what I had hoped to achieve.

It is not just having PD that sucks…the letting go sucks. We all face it at one time or another. How we deal with the reality of our lives, our achievements, our gains, our  losses…the path we thought we were on that turned into a dead-end. How we deal with all that  is the ultimate definition of who we really are.

The best case scenario is to gather up all the loose ends, burnt bridges, broken hearts, faded dreams of our lives into a big colorful, cumbersome, complex bundle. Write our name on it in bold bright indelible letters (God forbid we get somebody else’s bundle by mistake). Then hoist it up onto our backs, gain our balance, turn our gaze forward and journey on.