If I saw you in heaven
I've been reading his blog for almost two years now, mainly without comment, but visiting fairly regularly. He was diagnosed with ALS 4 years ago, a problem with started with tingles and numbness in his limbs, then moving on to weakness and loss of muscle control. He's been a much more faithful blogger than I, and has maintained his site even when it was difficult to hold up his head.
He's shared much of this horrifying journey with his readers, including posts that are mostly illegible (I can only guess as a result of pain or inability to control his hands). At first, I felt like I was intruding on a private conversation - having clicked on the link to his blog from that of another favourite of mine, and read a comments section from a clearly dedicated group of readers. He kept an inventory of his growing health problems, included a video (titled "So You're Going to Die!") through which I learned the facts about this 100% fatal disease.
He is a young man by today's standards - and a husband and father whose love for his family is always evident. It's not fair that he is trapped inside a failing body while his mind remains intact. ALS is the worst nightmare I can imagine: a healthy mind and a dying body. Eventually you're trapped. Even after living a long life this would be a terrible way to die.
His last post (and I'm sure it will remain such) was simply saying "I love you" to his wife and children. That was last week, and the comments section has grown from it's usual dozen or so, to over 130 messages. I check every day, waiting to read the inevitable.
When I read his last post, I started to cry. Unfortunately Jeremy was just coming into the living room and obviously concerned, asked what was wrong. When I tried to explain, I realized that to a non-blogger this type of emotional outpouring for a stranger is utterly mystifying. While he understands that we bloggers do form communities and feel strong affinities with certain others (particularly during hard times), it seemed a little strange that I was so upset.
The thing is, I was privy to this man's thoughts. He made them public. And the last thing he wanted the world to know was that he loves his family.
How can you not cry at that?
He doesn't know my name - the comment I left for him, saying thank you and sending love and prayers might be read aloud with all of the others at his bedside (as a friend of his has promised to do), but I am one of many. This is totally fine with me - we're not friends, and never will be.
But his words touched me and I will remember his story.
Do not stand at my grave and weep,
I am not there, I do not sleep.
I am in a thousand winds that blow,
I am the softly falling snow.
I am the gentle showers of rain,
I am the fields of ripening grain.
I am in the morning hush,
I am in the graceful rush
Of beautiful birds in circling flight,
I am the starshine of the night.
I am in the flowers that bloom,
I am in a quiet room.
I am in the birds that sing,
I am in each lovely thing.
Do not stand at my grave and cry,
I am not there. I do not die.
- Mary Frye