Wednesday, May 15, 2013

Guest blog by Joel...

Joel & "me" at the Walk to Defeat ALS in SLO
I thought it might be interesting to get the perspective of ALS from someone who loves someone who is living with it.  When I asked my family if they would be interested in writing a guest blog, Joel jumped right in.

Joel is my cousin by marriage and my friend by choice.  I have known him since I was about 15 years old.  He is the reason I met my husband so I will always appreciate him for that, but he has also been like a big brother to me over the years and I appreciate him for that as well.

Thank you Joel!

PS  You can follow Joel on his blog by clicking on the link to Big Daddy Will Set You Straight

Guest blog post by Joel:
I love Chrystie, I know how Sam came to be and I appreciate all the hard work Sam is doing and I will be here for Sam, for whatever she may ask, but, I love Chrystie.   I've been lucky enough to talk with and text with her these last few months and yeah, she may sound a little different, but Chrystie is still Chrystie.   Just because the Starbuck's dude couldn't understand her, doesn't mean I can't.

Chrystie still has a wicked sense of humor and a quick, sharp mind.  I've given her crap and made sure she knows my biased point of view of things and you know what?  She's given me attitude right back and I would expect nothing less of her.  This has always been our relationship and it always will be, and I don't see it ever changing.

The hardest part of her ALS diagnosis for me is not being able to fix “it” for her.  That's what I do, I fix things, both as my manly instincts tells me and as a profession, and not being able to fix “it” for Chrystie was the hardest thing I've ever had to deal with.  The second hardest part, for me, is the distance she is from me, she feels a million miles away at times.  But, these are my struggles and they pale in comparison to what Chrystie and her boys are struggling through and it's not right to burden them with my problems, it's not about me.

Yet every time I get a chance to talk or text with her, she makes me smile, she's still my Chrystie, and there are still times when she's a pain in the ass but, as she knows, I wouldn't have it any other way.  My family misses her family terribly, but luckily, technology keeps us close.  I can text her in the middle of the day as soon as I think about her and that helps bring her closer.

Sam is awesome, she's doing lots of hard work and bringing the lack of ALS awareness to light.  She's educating us about an underfunded and misunderstood disease.  I sure appreciate everything Sam is doing.  But, I love Chrystie.

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