Skip to main content

About Me

My photo
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.

Followers

Boston Marathon Part 1

Hello! Welcome back, or if it’s your first time here, thanks for stopping by! So, I did a little thing on Monday. I participated in the 127th Boston Marathon! This marathon marked my 4th. My husband Jamie, aka my legs for the race, and the other part of my team, was of course by my side. Without him, I wouldn’t be racing! We use a special running bike built just for me, called a duo bike. Our first race was in 2019 at the Chicago Marathon, and we have since also completed the New York City Marathon and the Indianapolis Monumental Marathon.

I had been to Boston two times before this marathon and watched Jamie run. Being a spectator was a lot of fun, and I love the city. The energy there is amazing! I really never dreamt I’d be a part of it one day. The first time I ever saw or sat in a duo bike was at the expo before his 2019 Boston marathon. It was really cool to be able to sit in one and feel someone pushing me in it. 

My first time seeing a duo bike

We’ve come a long way since that day at the expo. My marathon experience was very different from the majority of  the 30,000+ runners. In fact, there were only 10 other duo bikes allowed in the race. So, with that being said this definitely isn’t a typical recap of someone running the marathon. I was a rider, so that’s the story I can tell. The other half, you’d have to hear from my teammate. Even though we ran the race together, we had 2 completely different experiences. 

The alarm went off at 3:45 a.m. the morning of the race. Didn’t matter much because I hadn’t really slept anyway! I was too nervous and excited. We got ourselves dressed and loaded me up in the bike and headed out. Maybe I should back up just a bit. So, since we had to fly to Boston, the bike had to be disassembled and carefully packed up in a special bag. There is also a separate travel bag for the wheels. It’s quite an undertaking for Jamie on many different levels. Once in Boston, he had to put the bike back together and get it race ready. So, back to the morning of. We headed out with all of our race gear. It was piled high on top of me. Plus, I was juggling two coffees and our breakfast we picked up along the way. If you think I’m simply just leisurely riding, you are incorrect. I can’t tell you how many comments I’ve gotten like, how nice you just sit back and enjoy the ride! Well, not exactly. I’m in charge of managing A LOT of stuff. I have two bags attached to me with many different necessities. Plus, for colder weather and a wet race, the necessities are multiplied. It’s a lot to manage. In addition, I take all the pictures and videos and do live updates to share the experience as we go. That can also be really tricky. Especially when it’s raining. Most importantly, I’m in charge of keeping open communication with my pusher. I help him with his nurtrition and staying on track with his water etc during his race, so he stays safe and able to run well. It’s multitasking at its finest. So, leisurely ride, not so much! A good reminder that things aren’t always as they seem.


The bike ready to fly


Reassembling the bike

Probably the best, and also most physically exhausting part of the race for me, is engaging with the crowds. For roughly 3.5 hours I am smiling, cheering, ringing my cowbell and thanking all who are engaged with us along the way. As soon as the crowds along the way see the duo bike, they go crazy! It’s really an emotional and awesome thing to experience. You really feel the human spirit in full force, and quite honestly it can be overwhelming (in a good way)! It’s amazingly moving, and takes a lot out of me physically and emotionally.

Proud of my post race cowbell injury from cheering so much!

We had to walk about a mile along the quiet early morning Boston streets to meet up with the other duo bike teams and wheelchair racers. The lobby of the hotel where we met was buzzing with excitement and everyone was anxiously waiting to board the buses that would take us out the 26.2 miles to the start line. We met a few of the other teams and chatted before loading up. I was able to stay in my bike for the bus ride which was nice. The athletes with disabilities were able to then hang out in a church located very close to the starting line. The time flew by once we got to the church, and we all went through our rituals of getting ready to race. Getting all of my many layers on and situated in the bike can take quite a while. I need to make sure I’m feeling comfortable because I know I’ll be sitting in the bike for several hours. It can be very taxing on my body, and next week you will hear how much of a toll it took on me during this race. There were some really scary and difficult moments for me after the race. I had never experienced that before.

On the bus

Race ready, hiding all of those necessities under that blanket!

We were then taken to the start line, which was an incredible experience. Just being there, at one of the greatest marathons in the world, in that position, was an experience I’ll never forget. It was absolutely awesome. We start before the elite athletes and right behind the hand cyclists, so we were all in this one special space. I was just in awe of the many different ways I was seeing that one can “run” this race. It was, for lack of a better word, cool. Of all the marathons we’ve done, this one seemed the most inclusive. I felt very comfortable and not out of place at all, which was wonderful. 

Here we go!

This race is a downhill start which is different. It’s a difficult course with several sizable hills late in the marathon, which as you can imagine is extremely grueling. The last and most difficult hill is appropriately named, Heartbreak Hill. Luckily, since Jamie had already run Boston twice, he knew what to expect and was great about telling me all about the course beforehand and during. I’m as immersed as I can possibly be in the experience, and I love that. I want to feel as much a part of the race as I can. For months, we had been training and preparing for this moment. 


There is so much more to share about this special experience that took lots of humble courage, so I will save the rest for next week. We are both still recovering. Also in very different ways. I wanted to at least get a start of it out there this week. So, come back next week for the exciting conclusion, and to hear about my post race moments in the medical tent. One thing I will say is the Boston post race medical team is phenomenal! Huge shout out to our wonderful sons for accompanying us on this trip, and the wonderful Team Momentum staff and teammates. We couldn’t have done it without them.💚













Comments

  1. I LOVE LOVE LOVE this! I’m anxious to hear the rest. I hope you’re both recovering well.🙏🏼
    -Gina

    ReplyDelete
  2. I’m in tears just hearing about your race so proud of you both can’t wait to hear next week

    ReplyDelete
  3. Quite a story. Well done ❤️

    ReplyDelete

Post a Comment

Popular posts from this blog

Dear Muscular Dystrophy

A letter to Muscular Dystrophy on the eve of my 49th birthday. This has been a lifelong journey…. Dear Muscular Dystrophy, At times you dazzle me, showing me the heights of human love and kindness, and at other times you take me to the deepest, darkest parts of my soul. I have silently pleaded, please just let this end. I don’t want to do this anymore. I’d like to say that was a one-time thought, but you’ve made it impossible to tell that as a truth.  I want to love you because you are a part of me, but you make it so hard at times. You feel like a best friend when I achieve feats that seem impossible due to my physical weakness, but also you feel like my worst enemy living inside of my body when you fail me, and I’m once again lying on the floor. You robbed me of big chunks of childhood joy, while I sat in silent envy of my friends, as I watched them effortlessly turn cartwheels, run and jump.  You are stuck to me like glue during the countless hours in waiting rooms, operati...

In Luke’s words

Hello, welcome back to another week at Humbly Courageous. I am glad you are here! When my oldest son asked me to proofread his college essay a few years ago, I don’t think anything could have prepared me for what I would read. My biggest fear before having children, was that my life, my disability, would affect their lives in a negative way. I know what I endure as a disabled person on a regular basis, and for years I debated if I wanted to bring children into the world with me and potentially affect their lives in a bad way. After years of discussion with my husband, I finally felt like the decision was clear. I feel God put it on my heart, that He wanted me to have children. I felt that very strongly all of a sudden. As I went on the journey that Luke took me through in this essay, I felt many different emotions. I felt sad, mad, grateful, proud and so much more. I am sad/mad that the opinions and reactions of others caused us to miss out on these precious times with Luke. That part ...

Deep Breath

Hello and welcome back, or if you are new here welcome!…..Deep breath this week, as we are diving into the emotional trauma of 47 years disabled… here we go with just a few examples. Sharing these are really hard for me, but I think it’s important to share because these things are not uncommon for those who are disabled. Some I’ve shared before, some I haven’t.  “Yeah, from the look of your profile picture you really look disabled 😂” There is SO much I could say to this. What does that mean? Am I supposed to look a certain way as a disabled woman? Please, enlighten me. I’m all ears.  Or how about the folks that left me on the floor of a bar/restaurant because they assumed I was drunk because I fell as I was exiting because the door swung the opposite of what I was expecting, so easily throwing me off balance. Had not had a drop to drink. Left me there, staring at me as if I was a zoo exhibit.  Even the manager came by and told me to move because I was letting all of the ...