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

Ahhhh....the familiar sting of disappointment

I'm sure you have all dealt with times when you've been disappointed. The kind of disappointment that comes and sucker punches you in the gut. The kind you weren't expecting......at all. The kind of disappointment that just places you in a dark place, and you don't know how you will ever get over it. But you do, or you learn to live with it. I've had several times in my life where I have dealt with that kind disappointment, and most recently this week. The ways that I have dealt with these types of disappointment in my life has definitely evolved though. 

As someone living with a disability, there are a lot of sucker punches when it comes to disappointment. Starting as a child, one thing that sticks out to me in particular is gym class. I dreaded gym. There were so many activities that I didn't get to participate in. I had a spot on the wall that I would go sit against. Sometimes, if there were kids who were injured, or maybe not feeling well they would sit there too, but more often than not it was just me. Sitting and watching kids do all the things my body didn't allow me to do. The activity I despised the most was the big parachute. The one where the kids each take a handle and and fluff the parachute up in the air and then they all disappear under the parachute. I was never on the inside of the parachute. I was sitting against the wall with tears in my eyes watching and listening to their giggles and excited chatter about how cool it was under there. Gut punch. 

The parachute 

Or how about when all the kids are talking about which sport they will pick to participate in, during middle and high school? During high school, I immersed myself into the diving team as their manager. My best friend was a talented diver, and at one point she and her coach even took time to teach me some diving techniques. They would practice certain things on land before taking them to the board. They taught me some of those things, and I learned by watching. I would go home at night, and do this one particular technique I learned over and over. The drive was always there to do a sport, but the physicality was problematic. I did the best I could, but certainly wasn't competition material. They included me though. They believed in me enough to let me try it. I learned a lot from that experience, and honestly had a great time with it. The coach treated me like his assistant, even though I knew nothing about diving! They helped me turn the disappointment of not being able to compete in a sport, into something fun and inclusive.

My longtime BFF

During my elementary school years, I was a part of the local swim club. Again, there were some amazing coaches there that were patient with me. I could swim, but I was very slow. I liked it because my friends were there, but the amount of anxiety I felt before a race was all consuming. You see, I couldn't get up on the starting block without help. So the race would be about ready to begin, and I would be anxiously looking around for whoever was assigned to come and help me up on the starting block, and would often times hold up a race from starting. 9 out of 10 times they did remember to come and help me. The disappointment I felt when I would come in last every... single... time never got easier.

Mental Attitude Award

Once I was in a race with just myself and one other person. I earned a red ribbon for that race, and I cherished it. Even though technically it meant last, it said second! A couple of my close friends on the team were star swimmers, and had loads of blue ribbons. I wanted to be like them, but no matter how hard I swam, I just didn't move very fast because the power just isn't there in my muscles. One year I won the mental attitude award. At the time, I hated that award. I was SO disappointed and embarrassed. I felt like it was the pity award. I now know differently, and I also know that along the way, there were probably some people who were encouraged by seeing me try. Looking back, that swim club, and me learning to swim was one of the greatest gifts my parents ever gave me. That skill is what I now use to be strong enough to keep walking!

So, that's what I mean about how handling disappointments has evolved for me. Sure, I still have my time of being hurt, angry or sad, but I can usually recover much faster. When I look back on my life, I see that many of those disappointments are actually some of my most amazing gifts. Sitting alone in gym class... I now look at that as a cool, unique experience that only I had. A perspective no one else got a front row seat to, that is all mine. A gift. I wish I could go sit next to that little girl against the wall and tell her that. I would tell her, don't waste this unique journey you have been given. Don't waste it wishing for something else. Use it for good.


So, while this most recent disappointment in my life was certainly not something I would have thought I wanted, I know......I truly KNOW that what I thought was the plan for me, it just isn't. Sometimes we have to let go of our ego, our desire to control everything, and just wait in wonder. Wait humbly courageously in wonder of  how God is going to take my story on a totally different path than I was expecting. Maybe even look forward to the disappointments in life in that way?  They bring about mystery and that feeling of, ok then, what's next? Let's wait and see!

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, operating rooms

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 cold air escap

A Hateful Encounter

Hello and welcome to Humbly Courageous which is a series of past and current life stories, as a woman who has lived her life with a disability. Sometimes, my posts are happy and upbeat and encouraging, and others like the one you are about to read, are an example of the social injustices I face regularly as a disabled woman. I like to keep thing’s positive and upbeat, but as you know life just isn’t always that way.  Sitting looks very different than when I walk  To the woman who treated me so cruelly just because she judged a book by it's cover.... I guess you'll never know how deeply your mean stare and unkindness towards me hurt my heart. I guess you didn't see me struggling to carry three small grocery bags to the car while walking with my cane. You couldn't have possibly known the thoughts going through my head as I was putting my cart away and getting ready to make the short trek to my car. The conversation going on in my head went something like this.....Am I goi