Humbly Courageous

Hello, and welcome to another week at Humbly Courageous! If you are new here, thanks for stopping by.  Most of us have probably heard the saying, silence is golden, meaning it's often better to remain silent than to speak. I think the full saying is speech is silver, silence is golden. While that may very well be true in some cases, when it comes to silence and having my needs met as a person with a disability, I think this statement is untrue. In fact, it’s better to speak up and voice our needs as someone who has needs that need to be met in order to keep me safe, or make an experience as successful as possible for me. Public Speaking Has Helped Me A lot! In last week's blog, I briefly touched on how the conversation between my longtime friend and I had us remembering how I used to "mask" my disability in middle and high school, and even into college. The last thing I wanted to do was draw attention to myself at that age, especially if I felt like I was putting some...

Hello and welcome back, if you are new here, welcome! It’s unbelievable how heavy carrying the weight of loneliness can be. It feels crushing at times when you are living it. The weight of an elephant, a thousand pounds or however you may want to describe it. It’s heavy. It’s sad. It’s…lonely.  There are all kinds of reasons why people feel lonely in this world. None are easy. The loneliness I feel and have felt in my life that I can speak about is from being disabled. Feeling so incredibly different at times I wanted to come out of my own skin. Disappear because the loneliness felt so painful. In a crowd of 100 people it can feel like everyone around you is talking around you, over you not understanding. It’s not intentional usually, it’s just what happens. Things are said that isolate you. It’s hard to explain if you haven’t felt it.  I know from talking to my other friends who live with a disability that they too feel this kind of loneliness. It’s just that missing piece, s...

Hello and welcome! I’m so glad you stopped by this week. It’s an exciting one. I’m so honored this week to share a big voice within my community of friends. I “met” Leah through social media over a year ago, and since then we have followed and encouraged one another. I recently caught up with Leah and her mom on a video chat. They are both so kind and lovely, and I’m very glad to know them.  Leah is only 15, but as I tell her, she is wise beyond her years. I’m certain I’m not the first to have told her that. She is incredibly caring, supportive and tenacious. She is Leah, who is disabled, and she doesn’t miss a beat. Leah recently joined me as serving as the other National Ambassador for the Muscular Dystrophy Association. They always have a child and an adult National Ambassador. When I found out it was Leah who had been chosen to join me, I was thrilled! Excited because I know the two of us together can send a powerful message, and working together we can do great things! Dynamic...

Hello and welcome to another week at Humbly Courageous. If you are new thanks for stopping by! My hope is that you will learn something new about disabilities, be able to relate or feel less alone by reading my blog posts. These are the experiences lived by me, a lifelong disabled person. I live with Muscular Dystrophy. I openly share the good, the bad and the in between. I am a wife and mother of two boys who are my heart and soul. If you have a disability or any other chronic medical diagnosis, then the waiting rooms of doctor’s offices can start to feel like your second home. After 48 years, it's very safe to say that I've seen my fair share of hospitals and doctor's offices. As you can imagine, I have encountered many types of personalities, opinions, good bedside manner, bad bedside manner, and absolutely horrific bedside manner. I learned what that term meant very early on in life. To be honest, I could count on my hands the number of doctors who I would qualify as ha...

Hello and welcome back! If you are new here, I’m so glad you stopped by! I’m a 48 year old woman who was born with a rare form of Congenital Muscular Dystrophy called Bethlem Myopathy. It took me 44 years to receive a correct diagnosis, so most of my life was living with the unknown. While it wasn’t easy living undiagnosed and caused a lot of confusion surrounding how I viewed my disability, the one thing it didn’t change was that I was disabled. No matter the name or cause of my disease, it still physically affected me the same, name or not. Becoming diagnosed didn’t change anything at all for me physically. Mentally though, it changed everything. How I viewed myself and how I took in comments from others. One phrase I hear a lot, and one that is supercharged within the disability community, “you inspire me”. I’ve talked a lot in previous blog posts about how I have had to deal with a lot of unsolicited negativity in my life. Mean and rude comments, hurtful stares, people shushing the...

Hello and welcome to Humbly Courageous. I’m glad you stopped by. I have a lot of new readers, so I’m so glad you are here! This little blog is proof that one small voice can make a big difference. I’ve been writing weekly posts for over two years, and have enjoyed watching this space grow and getting a lot of positive feedback. I’m excited for what’s to come! If you are new here, I do SVF stem cell therapy. They are cells taken from my own body and processed (obviously there is a more involved description) and infused back into me. The hope is that they could possibly slow my progressive muscle disease, and maybe I could even gain some new strength. To some, the progress may be hard to see because in a way it is slight, but when I do a side by side comparison of me walking up a set of stairs, it’s hard to deny that there has not been some improvement. It’s certainly not life changing, but any ounce of extra strength I can get at this point in my life is a blessing. I’m two years into t...

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...