Humbly Courageous

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...

Hello and welcome! I hope it’s been a good week for you. If you have been around here for awhile, you probably get that I am a very schedule/routine oriented person. If I get thrown out of my routine I struggle. I worry. I get anxious. Part of that is because of my disability, and all the mental planning that goes into my daily activities because it has to. That’s how I function. That’s how I stay physically safe when things are well thought out. The other part, I guess, is it is just what I enjoy. Maybe because I have to? Who knows? I often assume that I don’t have to state the obvious when I am writing about ways that I like to stay positive in the face of adversity. Living with Muscular Dystrophy is daunting. Everything I do physically feels hard. My muscles  are very weak, and it affects everything I do. Not looking for pity, just understanding. I’ve learned to live with it. It’s all I have ever known. I get frustrated sometimes when I think about how most people don’t understa...

Hello, welcome to another week here at Humbly Courageous! I hope you are all making your way through this winter! In Indiana there seems to definitely be an endless string of dreary days. I feel like I’m not as affected as others I know that are very depressed by the lack of sunshine. However, when the sun comes out and it is so beautiful, I think to myself, I may be more affected than I think I am! It’s always so nice to see the sun even when it’s cold out.  I’ve written blog posts about my two sons before. I’ve shared that I carried each of my boys to full-term and delivered them both by cesarean section. I’ve shared what it was like to be pregnant with a disability and what that looked like for me. They are the true joys of my life. I credit them for my drive to stay motivated to push myself. I asked them both if they would be willing to share their thoughts this week on what it has been like having a mom with a disability. I felt their perspective could be helpful to others in ...

Hi, welcome to Humbly Courageous! This is an open and honest account of my perspective as a woman who has lived life with a disability. I wonder how many times I’ve been to the doctor over my 48 years for my muscular dystrophy? Hundreds, definitely, thousands, likely. I should have these visits down. I should have a confident voice as I’m facing these doctors. Many who I’ve known for years. But, the truth is, I’m not great at that. I’m a quiet, soft spoken person by nature. That is not to say that I don’t feel fired up on the inside. I’m really good about creating strong conversations in my head, and then when the time comes to deliver my side of that conversation, I chicken out, for lack of a better way to describe it.  Patiently waiting…. This week I had an appointment with my neurologist who I’ve been seeing for about 16 years or so. If you’ve seen a neurologist, you may agree, they are generally very intelligent, pretty subdued people. That’s not to say they ALL are, but in the...

Hello and welcome to another week at Humbly Courageous! It's a really strange feeling when you are a child, and you are surrounded by others who aren't really like you. Or at least that is how it felt a lot of the time. As an adult, I know that of course I had things in common with my friends that were outside of my disability. Lots of things in common. However, when I would go out in public, or turn on the t.v., I didn't see anyone like me. I longed to find that one person who could relate to me. It was a deep void, that I didn't fully understand myself, let alone have the words to explain it to anyone in my life. Combined with being in limbo searching for a diagnosis for 44 years, it was in many ways a confusing and internally lonely time in my life.  Social media, being the beast that it is, meaning it can be very harmful in many ways, also has one really great thing going for it. It allows those of us with disabilities to connect in an instant with someone who is li...

Hello and welcome! I have talked a lot about challenging myself on the big hill since I started my stem cell therapy. It’s become something I “like” to do that gives me a renewed sense of hope when I successfully reach the top. The thing with the big hill is that it’s quite a little hike for me to even get to the start of the hill. The challenge before the challenge. It’s probably a 5-6 min walk to get there. Mostly flat ground, but still. It’s not easy. My legs are already tired before the challenge even begins.  The path to the big hill Growing up, like I’ve mentioned before, I had to have several surgeries to deal with my ankle contractures and instability, which are common things with Bethlem Myopathy. As I got older, I started to realize that the surgery was just the challenge before the big challenge. After, was when the pain came along with months of rehab, learning to try to walk again with the new function of my feet, or ankles. I can't even count how many times I have had...