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

Daring Adventure

Hello and welcome back to another blog! If you are just stumbling upon this blog, welcome! Sharing my life experiences with you as a way to raise awareness surrounding disabilities is my passion. I appreciate the time you take reading my blog posts! 


When you think about a person living with muscular dystrophy, water skiing probably isn’t the first thought that enters your mind. I have to admit, I lived most of my life thinking I would never be able to snow or water ski. My eyes had not been opened up to the world of adaptive sports until just a few years ago when I was able to go snow skiing down a Colorado mountain. It was exhilarating! Turns out, I also had the opportunity last week to try water skiing. I’m hooked! I only wish I had known about the wide world of adaptive sports a long time ago. At 48 the clock is ticking, but hey I’ve still got time to seek out even more adventures before I call it quits. 

Water water water! I LOVE the water. It’s a place where I can feel almost completely free and unshackled from this disease. I can do things in the water that I could never have the strength to do on land.


Getting ready!


When my best friend from my earliest of school days sent me a text about an adaptive water ski clinic 20 minutes from my house, I said what date and what time?! Sign me up! I had heard about the adaptive water skiing, but hadn’t had the opportunity so close to home before. We were both very excited for the day to arrive! I loved her pure excitement just for me. For a few weeks we chatted back and forth about how we couldn’t wait! We were both eager for me to try something new. I think she was as excited as me! That’s a true friend. 

❤️❤️

Upon arrival, I was warmly greeted, and the check in ladies were enthusiastic about my new adventure. I have to admit I had some butterflies in my stomach not really knowing what to expect. We got signed in and it was quite crowded with so many living with disabilities wanting this opportunity. A lot of the participants were seasoned veterans. The list was long, and it seemed we may have to wait for hours. However, not long after we picked out my life jacket they said I was about 3 skiers out. Yikes! That was quick. So, I got my place in line and started chatting with an occupational therapist who was volunteering. “Is this your first time?”, she asked. “Yep, my first time water skiing!” I said. “Are you going to go for it and try without the outriggers?”  “Um, I don’t know, what does that mean?” She explained that without them I would have to balance the ski on my own to stay up.  I looked at her and said, “go big or go home right?!” She agreed and said “absolutely, you’ve got this!”

Ready or not!

My nerves and excitement increased as they wheeled me down into the water where there was a team of several people with big huge welcoming smiles. They transferred me into the ski chair, and got it fitted just for me. While they worked, they said, “wow your first time and you’re  doing it without the outriggers?!” I started to think I had been a little overzealous with my choice. However, I really do love a good challenge. I wanted it to be tough, and something I had to work to accomplish because I felt I was capable of that. I knew it wouldn’t be easy though. 

I’m not sure I was fully prepared for that first wipeout which happened about 3 seconds in. I had been tubing before, so I kind of understood what it felt like to ride behind a boat. This was no tubing ride though! I quickly realized balancing this thing was not going to be so easy. 5 or 6 wipeouts in, and about a gallon of water up my nose, I started to get frustrated. I felt like I was taking time away from other skiers who were waiting because each time I would fall off the “rescuers” on the jet skis who followed very closely behind had to jump off, swim to me and get me situated back into the ski chair. It was a lot! I voiced my concern to those who were helping me. The doubt was creeping in, and I wanted to cry. No way they said, keep trying, you’ve got this! As I was about to give it another try, one of the guys on the boat said, be sure to look up so then you can see if you are leaning to one side or the other. So, I said “hit it” which was the cue they wanted when I was ready. I got the ski up, clutched the handles on either side (there was a rope option, but that takes even more skill, maybe next time!) leaned forward, and I looked straight ahead. That was the key! I was doing it! Flying through the water bouncing up and down. It was awesome!!  One friend saw a picture of me after and said, I love the perma grin! Yes, I had a smile that was plastered to my face, and it was hard to wipe it away. I was water skiing!

On my last loop as we turned the last corner, emotions overtook me, and the happy tears were just streaming down my face. I was so joyful, thankful for my friend, ALL the wonderful volunteers, and also my courage it took to get out there and try something so adventurous. I’m not often proud of myself, but that day I was!

As I came back to shore there were cheers from all the volunteers, “yay Amy! You did it!” They took me out of the ski, and placed me back into the wheelchair to get me out of the water. My body was so exhausted! I couldn’t move my hands, they were stuck in the position that I had been gripping the handles so tightly. My body felt tingly all over and I could barely speak. I knew I had given it every ounce of all I had in me. They helped me back to be reunited with my friend, who had filmed the whole thing while cheering me on, and met new friends of her own! After some Gatorade I felt better, and we just sat and cheered on the other skiers. She told me of a young man who was on the boat with her who was also disabled. He told her because of seeing me try the ski without the outriggers, he too was going to give it a go! 

They wanted me to go again, but I just couldn’t because I was too exhausted. They invited me to come back the next day, as it was a two day clinic. I thanked them, but  thought to myself, there is no way I’m even going to be moving tomorrow let alone skiing again! My friend and I shared a celebratory meal after. I dropped her off at home and tried to keep my emotions in check. I was overwhelmed. We have been through a lot together since we were 8 years old. This was among one of our finer moments. 

Jamie returned home from out of town late that evening. The next morning I woke up so sore (not surprisingly!) and was telling him all about it. I said, hey I’d love to take you and show you how it all works, since it was going on again that day for day 2 of the clinic. I assured him there was absolutely NO WAY I was going back out, but that way he could see how it worked for the next year! We pulled up and I said, “hmmm not nearly as crowded as yesterday.” I sat in the car for awhile watching, and I just couldn’t take it anymore! The opportunity was there again, and I had to give it another try. I think Jamie was totally expecting this from me, haha! 

So glad he got to see it too!

So, it was the same set up, same volunteers. “Welcome back Amy”, they excitedly said. They remembered my name! I was one of them now. Jamie went out with the other families on a different boat that they were able to watch from. Guess what? I got up on the first try this time and went around the entire loop without falling once! It was about 5 minutes to get all the way around. Again, the emotions hit and I just let them flood me. I felt so free. 

I’m not even sure this was humble courage I mustered up for these skiing adventures, but maybe just straight up bold courage this time! When I did the adaptive snow skiing I was attached to someone else guiding me the whole time. For this, I was on my own the whole time. I didn’t give up. I wanted to for a minute, but I didn’t. I’m so glad I kept trying, and I look forward to whatever adaptive adventure is up next! 💚

Day 2!


Comments

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 ...