Humbly Courageous

Hello and welcome to another week at Humbly Courageous. I’m so excited about the number of new readers here. A quick introduction for those who are new. I am 49 years old, married with two children. I live with a type of muscular dystrophy called Bethlem Myopathy. Symptoms of the disease were first noticed when I was 17 months old, however it took me 44 years to finally get a correct diagnosis. My blog is a series of life experiences, some past and some present relating to my life living with a disability. The sole purpose of writing the blog is to reach others who are feeling alone on their journey and attempt to be that someone for somebody that I desperately needed growing up with a disability. If I can educate on disabilities, that is awesome too. This week I wanted to share a thought I had about how I feel there can be such a divide between the disabled community and the non disabled community. It's this push/pull thing that I have observed throughout my lifetime. An us agains...

Hello and welcome back to another week! If you are new here I’m glad you stopped by. Chances are, you’ve had something or sometime in your life when things didn’t go the way you thought they would at all. You are suddenly left without a plan of what to do next. For me, that happened my senior year of college. Sometimes, I look back on this incident and wish I would have handled it differently. I wonder where would I be now if I had? Mostly though, I now see it as something that had to happen to change the direction of my life to get me to exactly where I was meant to be, which is where I am now.  My senior year of college was going great. I had taken all of the necessary requirements to apply to the school of social work which was the final step to officially becoming a social worker. Countless classes, projects and  many volunteer hours at different places all to get me to the point of getting into the school of social work where I would finish up my degree. My plans were to ...

A few weeks ago, I was once again headed to my regular neurology appointment. I dread those appointments because it’s a hike from the car to the office. Often, I have someone with me and use my scooter. Occasionally, I like to prove to myself that I can still do it on my own. I’m stubborn like that. I can do it, but gosh it’s so difficult. Sometimes, I  start to count my steps to take my mind off of the sheer difficulty of what it takes me to get up there. One, two, three, four, five and then often I get distracted and think of something else. Don’t trip, don’t trip, don’t trip, I silently repeat. This most recent time, I thought to myself, how ironic is it that the thing I want most in life and fight the hardest for every darn day, which is to keep walking, is also the most difficult thing for me physically? Why don’t I just throw in the towel completely? I mean it’s just such a dread, but also I want it more than anything. It’s a crazy mind game. Yet, I can’t help but be grateful...

Hello and welcome to another week at Humbly Courageous! If your read last week’s post you will know that I was facing a pretty big change regarding my younger son. I can now say he has his driver’s license, and I have survived that monumental milestone in both of our lives. It’s a happy time for him, so that makes me happy for sure. A few tears were certainly shed on my end as I dropped him off at school for the last time. I’m having to regroup and realize a huge part of who I was in a sense is over. As my mom put it, “you wouldn’t have it any other way”, and she’s absolutely right. I wouldn’t, but we know pain and joy can coexist. It’s a gift and a joy to see your children grow into their own, and I don’t take that for granted. It’s also a little painful to let go.  Most of my life I was stuck in an “identity crisis”. For 44 years, I didn’t fully know who I was because doctors couldn’t diagnose my disability. I longed to know my true self, but was instead labeled as “unidentified”...