From the Inside

My thoughts lately have all been relationship-focused.  With the royal wedding front and center this last week it was interesting to read everything that was in the news, and I began thinking a lot about the outside of a relationship that everyone sees, vs what is really going on inside of things.  It would be interesting to be a fly on the wall, but however fairy-tale that relationship looks I bet you they still argue over who left the cap off the toothpaste.

I had a fairly bad moment this week.  It was a bad week in general - stress in my house, being sick for a few days and just generally feeling like poo.  I dragged myself to my haircut appointment in Denver on Saturday, because I knew if I missed it I would not only screw up Nicole’s Saturday but I would not be able to get back into the schedule until July and I was overdue for a cut already. 

Nicole is the most chipper, upbeat, positive person I know.  Her first question to me is always, ‘what’s good?’  Meaning, tell me a great thing that’s happening in your life right now.  I sat for a moment as my brain literally ground to a halt.  I started to panic – I literally at that moment could not think of one good thing I could offer up, and it made me feel awful!  I could tell that made her a little sad, which made me sad, but then she asked about Mo as she always does.  She’s aware that we’ve had some health issues in the past year, but I hadn’t seen her for awhile.

As we are only a few weeks into diagnosis, I haven’t had to tell many people exactly what’s happening, so I’m not smooth and practiced at my delivery yet, lol.  I told her that Mo has Parkinson’s and she looked at me with a strange combination of sympathy and confusion.  And then, because she is very direct, she said ‘I honestly am not sure what that means, or what that looks like.’.  She had a general sense of what Parkinson’s is, but like most people no real idea of what a diagnosis means logistically.  I did my best to explain, but it’s a little difficult when it hits everyone so differently.

I started thinking on the drive home how Parkinson’s is kind of like a relationship.  Everyone can see SOMETHING from the outside of your relationship.  In almost every case the relationship we view from the outside looks very different for the people who are inside it every day.  Everyone has their own dynamic, and you just don’t know unless you are inside that relationship, living it every day and having dinner with it, sleeping with it every night (or at least one of you is sleeping, lol) and nudging it awake in the morning. 

PD, especially in these early stages, is something like that.  People are going to see what they see on the outside, because of course they have no way to experience it for themselves.  They are going to see that you are young, that you don’t LOOK sick, that you are able to drive a car and hold a job and function like any non-PD person, and they’ll assume on some level that you are fine.  We are all conditioned to believe what we see in front of us.  

I started out with this idea that I had to make people understand how serious it was, and what the implications were for us long-term.  There was a part of me that felt like if I didn’t explain it well enough and make people understand,  they were going to think it wasn’t a big deal.  And for us it IS a big deal.  But… let’s back up.   Let’s go back to our relationships. 

I don’t really know anyone who is walking around trying to make people understand the dynamic of their relationships and what they look like from the inside. We all understand intuitively that people see what they’re gonna see, and we are the only ones who really need to know the gory details.  Why would Parkinson’s be any different?  Why am I pushing to make people understand exactly what we are dealing with?  Is it just so I can make them understand why I am so stressed out and sad?  Because I need comfort and support?  I don’t know the answer to that. 

I think from this point it may be time to take a different approach.  As Dan Glass pointed out in his excellent post on,  this needs to be a toe-in-the-water approach.  Maybe I don’t even need to be announcing this to anyone right now, and certainly not going immediately to all the bad possibilities to try and make people understand how this might affect us down the line.  It’s a thing that is happening, but it is not defining us. 

Our brain is responsible for so much of what is happening to us with PD, and I think our own attitudes have a huge impact on whether our wobbly health will continue to spin a little longer or topple over.  There are many years to live still in front of us.  We can’t stop building our perfect life.  No one knows what will happen tomorrow or next week or next year.  We could win the lottery, or we could drive over a cliff. 

For now, my plan is to stop announcing this as if it was a death sentence.  That’s on me to correct.  I’m learning how to deal with all of this, one decision at a time, and I will continue to learn as time goes by.   We have so many opportunities with this, and it is honestly like opening a new door.  It sharpens your focus.  We have a chance to be a voice for the PD community, especially for the younger crowd who seem to be sort of in hiding where we live.  We have the energy and the imagination to think about new ventures that could benefit other people in our situation, like the new Unsteady Collective nonprofit art program Mo is putting together.   It’s a new road, and it has some potholes but it also has opportunities that we might not have had otherwise.

I appreciate everyone following along here… I feel like I am stumbling a bit as I try to eat this elephant.  The ear may have been too big of a bite to start with, so I need to take things one step at a time.  Love the support we are getting from everyone, and I hope you will keep reading.


Tami OnstadComment