• Life with ALS
    • Uncategorized
    • Feb 19, 2016

    ALS Brings Us Together, But We Make Our Own Stories

ALS dignosees group pic (640x427)

I’ve been firmly on the fence about whether or not to see The Theory of Everything (the movie on the life of Stephen Hawking).  I was worried that this film might strike a little too close to home, or, worried that it might not strike close enough to home, until today when Amy and I had lunch with three other ALS diagnosees.  I was reminded that, though we share a diagnosis, we are all having our own completely unique experience. I realized that I have nothing to fear from anyone else’s story–no one’s story is MY story.

I value these dear friends who are going through an amazingly deep trial and doing so with grace that I am personally inspired by.  We have banded together; a group that may not have otherwise come together.  It’s a club that we are a part of but wouldn’t choose for anyone.  Our ALS diagnosis is our commonality, but we each have different strengths and stories.  We can laugh, and cry and lean on each other.  

So, I came home excited to see The Theory of Everything.  I rented the movie online, and watched it all by myself. I liked this movie. It did better than most at showing the complexity of a trial. It also touched on many of the topics I find myself thinking about every day: God, time, and family.

I am convinced through my own experience that we really have no idea what others are experiencing at any given moment.  We assume, but don’t really have the ability to be in someone’s head or emotions, or fears or relief.  Some of what we assume about each other is just plain wrong. I’ve been caught off guard more than once when someone comes up to me in tears, assuming I am suffering and wanting to comfort me, and I think to myself, “Man, what can I tell this person? Thank you? That I haven’t struggled with what they assume I am struggling with for years? That I think their struggles are comparable to mine? That, in reality, I’m quite content, or hungry, or in the mood to be distracted?”

Sometimes, when I am tired, I simply don’t want to receive any more empathy.  I don’t want to comfort anyone who is suffering on my behalf.  I don’t want to be the false high-standard for anyone’s faith or anyone’s inspiration. And then there are the times when I feel like light pours in and I am able to go give and receive, to see the smallness of my fears, and the beauty of the empathy offered me.

Thoughts from Feb 2015,  by Seth Christensen

About Author

Seth Christensen

Seth is an ALS patient and founder of ALS Crowd, a division of the CrowdCare Foundation. As host of the ALS Crowd Radio show, he interviews top ALS researchers and focuses his efforts on the aggregation of big data to help researchers and patients find clues that will drive to a cure.


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