Yes, this has been haunting me, lingering in my mind, rolling around through my body for months. Ever since I wrote my ‘Holy Mind F*$K’ blog post, one of my favorites, I’ve been wrestling with something fiercely (http://jonilowe.com/holy-mind-fk/).

The post includes the following:

Honestly, how I’m dealing’ changes at any moment on any day, but in general I’m doing really well (most of the time).

When I originally shared this with my husband, it was this:

Honestly, how I’m dealing’ changes at any moment on any day, but in general I’m doing really well.

NOTE: version 1 does not include (most of the time). I added it as a result of a conversation with my husband reminding me of certain moments of uneasiness, so I changed it (regretfully).

Now, I’m left with this big question: what would dealing with a degenerative disease ‘really well’ even look like?

Would it look like becoming the biggest fundraiser in Michael J. Fox Foundation history, in less than a year? Would it look like a marathon runner? Would it look like no tears shed? Would it look like living life to its fullest?  Would it look like denial? Would it look like a bucket list with every item executed? Would it look like a raw eating, living yoga off the mat lifestyle?

What would living with a degenerative disease diagnosis ‘really well’ look like?

Living with a PD diagnosis does have an impact on my life. In fact, it impacts the lives of my loved ones as well (probably in ways I’ll never know).

I’m requesting a ‘do over’. This is what I want to share:

‘How I’m dealing’ changes at any moment on any day, but in general I’m doing really well. I exercise almost every day. I look to live life in the present moment. I don’t stand in the fear of the unknown future frequently, just occasionally. This is all part of my journey, my ride here on earth for now. I’m drawn to share my story, hence I blog. I’m not angry. I don’t wonder, why me? Sometimes, some people may say I’m in denial. It’s much more fun to believe it’s this or better in the future. I’m grateful for all my lessons from my life experience.

The word ‘degenerative’ throws me off, way off.

I ask again. I’m curious.

What do you think living with a degenerative disease diagnosis ‘really well’ looks like?

 

* Image is from www.gopixpic.com