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Humbly Courageous
Hi, I’m Amy. I live life with a condition called Bethlem Myopathy which is a rare form of Muscular Dystrophy. I like to help others by showing how I live well with a debilitating condition. I was born with this disease, so it’s the only way I know life. I continue to work on embracing myself and using that to help others.

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My Nagging Husband

Hello and welcome back! I thought it would be interesting to share my perspective on riding in the duo bike, and why I think that requires humble courage. Week two of training for the NYC marathon is this week! 

Back in the spring of 2019 my husband, as I’ve mentioned before was gearing up to run the Boston marathon. He had mentioned to me before that he had seen people pushing these racing chairs in other marathons he had run, and he thought it would be fun for us to do together. 


The first time I sat in a duo bike 

My initial reaction was...there is no way in hell I’m doing that! The thought of all those eyes on me, staring at me, with looks of pity made my stomach turn. I actually was really just mad that he was suggesting it. And the other annoying thing was….he didn’t give up! He kept talking about it, and each time I kept turning him down. 

When I joined him in Boston, there was an expo before the race, so we went there to walk around the different booths and collect the free race swag for him. Low and behold, there was a booth with one of those darn racing chairs he kept nagging me about. Jamie was beside himself with excitement. I was not haha! I did agree to get in it and give it a go. The people that had the bike there were so kind and friendly, and it instantly made me feel comfortable. One of the guys running the booth offered to take me for a ride around in the racing bike. I kind of had to admit that I liked it. It was fun! 

However, I still wasn’t sold on the idea. I have been gawked at my entire life when I go out in public, why would I bring that upon myself? At that time it was presented as a team of people that would push me in a race. I really didn’t like that part. Not sure why, but I didn’t. Jamie wasn’t sold on that part either. 

When he started talking about him doing all the pushing, I didn’t even dream that would be possible. The bike is heavy! Then add me in it. I’m not a big person by any means, but it’s still a lot of weight with the two combined. As I’ve mentioned before we thought we’d start small and do a 5k here and there, and next thing we knew we were set to run the Chicago marathon. I won’t go into that because I have in talked in detail about that in previous blogs. Check those out for more on how that happened. 

So, the message really is that somewhere there was a shift in me. I became focused on the goal of helping others, not how others were looking at me. Sure, every time we go out I get some looks of confusion (I look young and healthy) I’m sure people wonder why I’m in that chair, just like they do when I park in the disabled parking spots before I get out and start walking. Some give me mean looks, most don’t. Jamie gets a lot of praise and people just watching him in awe as he passes them on the trail. 

Chicago 2019, our smiles say it all

It does take humble courage for me to climb in that chair. I’m extremely sensitive, and can be so guarded when it comes to being stared at. I have trouble making eye contact a lot of the time because I just can’t handle some of the looks I get. Some are even of digust. I’m sure that sounds far fetched to some of you, but it is sadly true. Not everyone is kind.  Sometimes I shut down, and just can’t face it. This has been good for me, to open up myself more to others and help educate on disabilities. Pushing myself outside of my box has helped me grow, and I’m grateful for that nagging husband of mine 😉

Comments

  1. Jamie ShinnemanJuly 30, 2021 at 5:51 PM

    Haha, with a title like this.. it's no wonder I didn't get to proof this one! Great job as always! So proud of you!

    ReplyDelete

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