Re-Introduction

Hello! I am so grateful to all of my readers for being here! I have noticed that I have a lot of new readers here at Humbly Courageous. I wanted to share a blog post this week, to introduce myself to new readers.

When we are forced to face an everyday battle, courage is inevitable. 

This was the thought I had from which Humbly Courageous was born almost 5 years ago! It is hard to believe that it has been that long. 

I am a 51 year old wife and mom of two college aged boys. Along with this blog, I also have a weekly column in my local newspaper called “Disability in the City”. I place great emphasis on keeping my body functioning to the very best of its ability. I enjoy exercising and participating in adaptive sporting activities. 

I am an ambulatory wheelchair user at this point in my life. 

I grew up with my disability present with symptoms from a very early age. When my parents noticed I was not walking on my own around 16 months, they decided to get me checked out to make sure everything was ok. I was standing and pulling up on furniture, but would not let go and try to walk. 

That was the start of what would be a decades long search for a diagnosis. 

Growing up, I was mostly referred to in the medical world as “unidentified”. So when I would get the question growing up of “what’s wrong with you?”, my answer that I gave was “I have an unidentified neuromuscular disorder.” I would say that and not really have any kind of explanation beyond that because I myself didn’t even know who I fully was. I just knew that whatever was “wrong” caused a lot of  hardship in my life.

My disability affected many things throughout my day, most noticeably my walking. I walk with a very significant “sway”, and walking is very laborious and takes great concentration, so I do not fall. During my childhood, there were castings, many years of braces, orthotics, and countless surgeries on my feet and ankles to try and help with my ankle contractures. 

Eventually, I was able to shed the heavy leg braces and walk without them, but my sway has always stayed with me. I guess you could say it is my signature move. This is mostly due to the extreme weakness in my legs and hips, and lordosis (curved spine in my lower back). 

My 44 year long search ended in 2018, when genetic testing finally revealed my diagnosis of Bethlem Myopathy, a rare form of Muscular Dystrophy. 

That fateful day, when I received those results, changed my life. I felt like I finally was formally introduced to myself, and could begin to accept myself for who I was. 

Before then, I struggled greatly with the mental distress of not only being “unidentified”, but also the isolating loneliness from being so different from my peers. I knew no one just like me. 

The only time I had met others who were very similar to me was when, at the suggestion on of my doctor, I volunteered at the Muscular Dystrophy Association summer camp. I was 18 at the time, and still not diagnosed, but I definitely felt a special bond with those campers. It was the first time I let my guard down, and didn’t have to explain anything to anyone for an entire week! It was wonderful, and to this day stands out as a top life moment for me. 

I never forgot the MDA, so when I was diagnosed with Muscular Dystrophy in 2018, I reached out and long story short, ended up serving as their National Ambassador for two years in 2022 and 2023. I met so many amazing people along the way as I began to feel more and more comfortable sharing my story, many times in a very vulnerable way. 

Through my public speaking opportunities, and my writing, I have been able to share experiences from my childhood and adulthood on what it has been like to live life with a disability. 

It has helped to heal broken parts of me that were beaten down and battered through many years of negative self-talk, and feelings of very low self-worth. Although I had a wonderful family and so many supportive friends, I carried an immense internal struggle that I kept to myself. 

It began to surface in my college years, in the form of depression and unfortunately times of thoughts that I no longer wanted to be on this earth. I struggled with unhealthy habits as a form of trying to escape the pain I was feeling. 

Fortunately, I was able to recover from the depression, and have continued to push forward with the help of my support system. It has been just as hard mentally as it has physically.

My husband, who was my high school sweetheart, is a constant support, and as my disease progresses, provides the care I need. Together, we raised two amazing young men, who we are immensely proud of. 

I am so honored to be a weekly columnist for my local newspaper, writing about my life and educating others on disabilities. I also write for my local tourism organization as a way to share information about accessibility at different places around my county. I still volunteer my time and efforts as an MDA National Ambassador Alumni. 

I never dreamed my life could be so full and so blessed all because of my disability that I live with. 

Though it does makes some things so difficult, and there is still a sadness I carry from not being able to do many things I wish I could, I have learned to be grateful for my disability and the good things it brings into my life.

It has by far, been my greatest teacher in this lifetime, along with my faith that keeps me going each day.

I look forward to continuing to share my life with you my faithful readers. This blog has been a labor of love, and it has been so special to watch it grow over these past five years.

My goal is to continue forward with humble courage, and be the person for someone else that I once needed in my life. 

If you are in a reading mood, and want to know much more about my life with Muscular Dystrophy, including different treatments and therapies I have tried, I have over 200 blog posts for your reading pleasure.

Happy reading!