Both Sides

It’s easy to criticize things from the outside.  Recently someone built a giant modern mega mansion in my neighborhood.  An enormous monstrosity of poured concrete and glass that felt like an alien spaceship had landed in the middle of my largely nouveau Southwestern/Modern Mediterranean Shangri La.  One day I asked an Architect friend what their thoughts were about this blight. .Their reply “I don’t like to judge architecture from the outside, I need to be INSIDE to see how the light is and how the house is lived in.”  What an insightful response.  I think it applies to many things.

When I was diagnosed with Parkinson’s I thought I would go to some conference and find the cure.  The magical pill or device that restored me to health.  That didn’t happen.  I immediately became angry and frustrated at the obvious ineptitude of everyone involved.  Big Pharma was hiding a cure.  Of course the doctors were all getting rich off us and laughing on the golf course . Clearly the researchers were all either self-supporting idiots or complete liars.  But a funny thing happened on the way to me chaining myself to the gates of the FDA.  I met some people.  Nice people, good people, hardworking people.  Turns out that Pharma is just people, doctors are just people, and researchers are just people.  People just like me.  You see it’s really hard to dismiss someone when you take time to listen  and get to know them.  Maybe you don’t agree on everything , but they become more human.  Harder to blame.

Something the Internet has taught me is that it’s very easy to criticize people from behind a keyboard, much harder to say it to my face.  Easy to judge someone from a picture, then look at ourselves in the mirror. I have met so many of the people I thought held the answers to curing this disease. This thing that interrupted my seemingly perfect life. After awhile I realized that no ones holds the magical key that unlocks the secret box which contains the cure to Parkinson’s. instead I found a lot out about people, and myself. I found answers to questions I didn’t even knew I was asking.

I’m going back into the Lion’s Den again soon. Those spaces were “experts” speak confidently about this disease I am now well past the honeymoon stage with.  People think I’m invited. That the red carpet is rolled out for me and I’m living some influencer fantasy. That I jet set around being wined and dined and sucking at the teet of Big Pharma. Nothing could be farther from the truth. I don’t wait for invitations. I crash parties and invite myself. Why? Because it’s hard to look me in the face and explain my own disease to me. Hard to say glib things like “we’re closer than ever” to the cure when I heard you say that 3 years ago. I go to be a reminder, to hold space, and ask questions. For everyone that suffers. For me that suffers, because I don’t have patience and I don’t have time to waste. If not me who?