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

Joining Forces

Hello and welcome back to another week at Humbly Courageous! Growing up, I had to tell my medical journey story over and over and over. I dreaded going to all of the doctor’s appointments and telling a new person my story and hoping for answers. I would tell my mom, “I can’t do this today, I don’t want to do this anymore.” Some doctors would blankly stare at me, some would show compassion and thank me for sharing. So, if you would have asked me then if I’d like to be an advocate and share my story over and over in order to help others, I would have said, “no thank you.” It was traumatic at the time because it was always a dead end. Each time I was told, “I’m sorry I just don’t know what this is”, my heart was shattered, and I had to start all over again each time for 44 LONG years. . 

Now, nearly 4 years after being diagnosed, I am finally off of that diagnostic roller coaster.  My thoughts have obviously changed. Now, I’m eager to share my story, over and over in order to help others. It’s not a traumatic experience. It’s truly an honor to be among other advocates and hear them share their stories as well. Of course, I wish we didn’t have to fight so hard for things to just be fair, and accessible. Of course I wish that. But, we do. So why not make the most of it, and join forces to help make these much needed changes, so that maybe those who come along after us won’t have to?

The thing about those living with disabilities is that we are hard wired to be persistent. It’s a necessary survival skill. Without it, we would be lost. It’s a skill that we have to use all of the time. Through our persistent nature we develop perseverance. Steadfastness. When the wind is howling at our face, we continue on. There is no other choice. Some of the “toughest” people I know are fellow advocates. I’m in awe of their perseverance and drive to help others. 

I have learned SO much over these last 4 years, not only about myself, but more importantly about others. Things I never dreamed I would be a part of, like this week, speaking to legislators on important issues impacting the disabled community. Was it easy? No. Was it intimidating? Heck yes it was! Did I do a perfect job? No. Did I do my absolute best? Yes I did. I was a newbie and I survived my first virtual Summit and Hill Day with MDA. I made some mistakes to learn by, and if given the opportunity I will certainly be up for the challenge again.  

Humbly courageously pushing yourself outside of  your comfort zone is so rewarding. It forces you to grow in ways that you need to grow. Ways that further you along your purpose path. If we aren’t on this earth to help others when we can, I don’t really know why we are here. Sometimes we are the one who needs help, and when we aren’t in those times, we need to be the help for the someone who is. 💚

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

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

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