Thursday, November 20, 2014


Then came a surprise Christmas gift.  "In December, I was in my bedroom and my brother was home for the holidays—home from school—and he was like, Hey, my friend is coming over tonight, just so you know.  I was like, Okay, that's weird.  He was being a little weird.  And it turns out she comes walking into my bedroom!  She had, like, planned this all out with my family to come visit for Christmas.  I didn't know.  It blew my mind.  So we spent like four days together, which was awesome.  But still just as very close best friends.

"Then she went home and we–I'm trying to remember how it all happened–she came back for her spring break.  So she was here for, like, another week.  And during that time we kissed for the first time.  And it was like a big moment or whatever.  But still … her fears were, she'd lost her mom to cancer when she was, like, 14, and knowing what she knows about SMA she was worried that something would happen to me and she would lose someone else whom she loved so completely, so it was hard for her.  And I understood that.  I can't say to someone honestly, I guarantee nothing will happen to me.  'Cause, you know, I could get sick tomorrow and that could be the end.  So it's tough.  It was probably the toughest part of that relationship with her."

Or at least up until that point.  Tougher moments lay ahead, but not without interludes of sublimity.  "That summer she was here for a while, like a month," said Shane.  "And early on in that trip she finally said, You know what?  I've kind of forgotten my reasons for wanting to hold off on the relationship.  So let's just do it.  So we made it official."

The next eight months were "seriously the best time of my entire life," he told me.  "She came up here, like, once a month. … I taught her how to lift me, so we were able to be intimate.  So that was cool."

Cool though it may have been, there was soon trouble in paradise.  "We had our fair share of problems," Shane acknowledged.  First, there were mobility/transportation inequities.  "Sometimes she would kind of say, like, you know, I'm giving up so much of my life to be with you.  She would say, I know it's not your fault but, like, you don't ever come down to Florida.  And I'm like, it's just difficult.  And she was like, I just want someone that can be here for me and, like, help me and hold me.  Stuff like that.  That was really tough because she knew—we both knew—that there was nothing, it wasn't my fault.  It was just the way things were. 

"We always found a way to work through it.  We had our moments where, intimately, I wasn't able to do everything as good as an able-bodied person might be able to do.  So we had our late-night fights where I'm apologizing and she's telling me not to apologize, but I feel bad and she's saying don't feel bad, but she's obviously upset.  That kind of sucked.  But we got through it. 

"I've never loved someone as much as I loved her.  And I think she would say the same thing about me."

          But happily ever after it wasn't. 


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