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

The Gift

Hello and welcome back, or if you are new here, welcome to Humbly Courageous! The gift of movement. How often do you think about and appreciate all your body can do? All the little movements our bodies do that we may take for granted. Lifting your hand to your mouth to brush your teeth, eat, brush your hair, bend over to tie your shoes, sit up in bed, just to name a few. I haven’t always been so acutely aware and as grateful as I should be for the gift of movement that I have. Like most of us do, I took it for granted far too often. 

You know the saying, someone always has it worse than you, be grateful! While this is certainly true, it’s not always helpful to say that to someone. But also, when soaking in the truth of that statement, if you are able, it’s really eye opening. The truth is, we all struggle in some way. Some days, months, years we are better equipped to handle our struggles, and sometimes they almost take us under and we feel like we are drowning. It’s easy to get bitter towards others that have what we don’t, physically speaking in this instance.

I decided a long time ago, that I don’t have the energy to be bitter, nor the right to be, towards all non disabled people. It would be easy for me to. I could resent others because they are capable of doing things I cannot, or I can face the reality that is out of my control, and instead put my energy towards where I’m at right now. Everywhere I go, everything I watch on TV is largely non disabled people. Rarely, do I see in person, a person with a visible disability. In a rare instance, a TV show may show a person with a disability, but we still live in a time where we think, oh wow that’s awesome, finally! It should just be the norm, but it’s not. 

Part of how I appreciate my gift of movement is exercise. I became attracted to exercise as I’ve discussed before during college. Since then, I’ve been pretty diligent with consistency in exercising in some form. I’m always looking for treatments or therapies off the beaten path. I’ve had some success with those types of things that I’ve chased down, and some I haven’t. Trial and error, but continuing to move forward. To me, “exercise” is swimming, water jogging, stretching, or even chores around the house certainly are exercise for me. Exercise for me doesn’t have to mean what it means to a non disabled person. It’s what I make it, and it keeps me moving and motivated. I have no doubt that it has helped me. 

One of the most defining and precious moments in my life, was when my son Jack taught me how to run when I was 45 years old. I recently went back and watched that video. He taught me to run in the water. I was fighting back the tears, as I watched again. Even though I had watched others run my whole life, I had no idea how to do it. He was 12 at the time. He was so kind, gentle, patient and encouraging. It took my breath away. Since then, I’ve been consistent and I’ve improved so much. I couldn’t believe it when I watched that first time, how far I’ve come with it. I never thought I’d have the chance to “run” in my lifetime. It wasn’t the way I had daydreamed about so many times throughout my life, but possibly even better. It was my way. 


It takes humble courage to accept that your way may not look like most around you. It takes confidence to commit to something so grueling. I cannot ignore the fact that I have the gift of movement that so many long for. I want to protect it, and honor it for as long as I have it. I always say, do whatever you can, however you can. You may just surprise yourself. 💚




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...

Recovery Week 1, SVF Stem Cell Treatment #2

Welcome back! Well, I survived week one post double SVF stem cell procedure, and also got word that the half of my cells I am banking arrived safely at the cell bank. That was a relief! One thing is for sure, there was a definite difference in the single procedure recovery vs. the double procedure recovery. There has been a lot more pain this time. I am still very sore from the procedure. The bruising is getting better, but definitely still there. Also, the area is still swollen and very tender to touch. Each day I have just taken it day by day. I have had some good days, combined with some really painful days. The pain is from the actual procedure, but also I have had some achiness all over that has been pretty persistent and miserable this time, as well as feeling very fatigued. However, I know I am only about a week post procedure, and all of this is to be expected. Allowing your body to heal is important to the process! The first couple of days, I just had a hard time finding a com...

Dear Disabled Motherhood

Dear Disabled Motherhood, As a child, I never dreamed being a mother could be my reality. As I got older, I boldly proclaimed I did not want kids every chance I got.  I was suiting up in an armor of protection, thinking if I told myself that long enough, I would believe it.  My childhood years spent playing with my dolls pretending to be a mother, but not really believing that would ever by my reality. Now I know, that was a lie I told myself to soften the blow. I did want kids. I just did not think my body was capable. God placed a glimmer of hope in my heart, telling me I could be a mom. We trusted that. To this day, I still spend many moments in awe marveling at the ease in which I was able to become pregnant, twice. Nothing ever came easy. I expected pregnancy would not either. What a true blessing that took me by surprise. What did not come easy was finding information on becoming a disabled mom. The books that were out there had so many things in them that did not apply ...