Humbly Courageous

Hello and welcome to another week at Humbly Courageous. I’m glad you are here! I recently traveled to Washington, D.C. to participate in my second Hill Day with The Muscular Dystrophy Association. It was an easy “yes” when asked to go for a second time, as an advocate for MDA.  I enjoyed going the first time and learning how it all works. It’s a fascinating place, and such a beautiful city! The first time I went to D.C. to advocate, we were fighting for improvements in accessibility and awareness for airline travel for disabled travelers. All too commonly, those with disabilities don’t travel because they are terrified their wheelchair (aka their legs) will be damaged and unusable when they reach their destination. Also, aircrafts need to be updated and made to be more accessible, so restrooms are accessible for all. Ultimately, the hope is wheelchair users can stay in their chair to travel, so no bodily injuries happen when transferring and to avoid damage to a mishandled wheelcha...

Hello and welcome to a new week at Humbly Courageous. It seems that with my other writing responsibilities, the blog has taken somewhat of a backseat, but make no mistake, it is still my first writing love. I have these visions. Visions of myself in a healed body doing things that I can’t typically do. It feels like a retreat from my tired body to daydream about these things. Many times it’s just thinking about doing household chores without such effort. Sometimes they are just snapshots and other times I find myself lost in those thoughts.  I would think most have daydreams about doing things that they can’t do, but I guess I really don’t know. I’ve never had that conversation with anyone that I can remember.  One thing that I’ve noticed that I believe has slightly improved is that I don’t anger as easily when I’m not physically able to do something. Not to say that never happens, especially when I’m tired, I tend to get really frustrated easily. I’m learning to pause, take ...

Hello, welcome to a new week at Humbly Courageous! I’m so glad you are here. I love going to the movies. Anyone else? It’s an instant dopamine boost. It’s dim, comfortable and I’m warm, wrapped up in a few layers and eating a favorite movie snack. What could be better?! I often find myself in that moment wishing I could stay there forever. Wouldn’t life be so much easier if we could stay in our perfect movie scene and never leave?   Or, how about when your mind wanders to a beautiful memory of the past and you are so close to that memory that you can hear it, feel it. I love that. I think to myself, I   just want to stay here forever and not face some of my realities. I admit , I’m a nostalgiaholic. My boys are so grown up. I’ve    got one a junior in college and my baby boy is a senior in high school. Just the thought of him leaving brings immediate tears to my eyes. My goodness, time is truly a thief. There is nothing within our humanly power to stop it. Most of us...

Hi! Welcome to a new week at humbly courageous. I’m glad you are here.  It’s no wonder that I brace myself for the worst whenever I go out in public. Every single time. It’s no wonder because I have encountered the worst many times in my life. The unsolicited comments, the stares, the whispering, the avoidance, people turning away from me like I am a monster, the laughter of young kids, those who treat me as if I am invisible. I’ve seen and heard the worst. Many times.  Sometimes, I am brave enough to look up at a stranger coming towards me, not knowing if I’ll be met with a look of pity, a look of disgust, or a warm smile. More often than not, I regret looking up. Why do I care? I don’t know, it just hurts to see and feel that there are people who think that way I guess. A few weeks ago, I was at a writer’s conference with a friend. It was her first time pushing me in my wheelchair. The conference was at a university and lunch was in the student dining hall. Normally, during ...

Hello and welcome to Humbly Courageous! I want to take you through the day in the life of someone from my perspective . If you are interested in learning how things work daily for someone who is disabled, I think this may help you understand a little bit more. I personally love hearing about how others go about their lives. I find it interesting to learn how people cope with their hardships in life. That gives me a better understanding of them as a person, and I think that’s beneficial to any relationship.  6 a.m. My days always start early. I’ve never been much of a sleeper in’er. I enjoy being up early because of all the times of day, that is by far have when I have the most strength and energy.  As I open my eyes, there isn’t a day that goes by that my strength, and what I will have to do during my day on such limited strength doesn't cross my mind within a minute of opening my eyes. I can do this, right?,  I think to myself. Some days I daydream about just laying the...

Welcome, I’m so glad you are here! I would call myself a master planner. No, I don’t mean at planning big events, outings or vacations. I mean I am a daily master planner. As a disabled person almost every moment of the day involves a plan. Even down to planning how I will get up off a certain chair or into or out of a certain car. All of it, requires thought and planning. It’s actually mind boggling to think about all the minuscule details that I have to plan throughout each day, just to get through one day! A huge part of  that planning involves careful calculation of preserving precious energy too. I have to make sure that I have planned down to the smallest detail to make sure I can make it to the end of the day. There are many nights where I will sit in the living room for an extra hour or so, just to muster up enough energy to make it to bed. Kind of like an inner pep talk.  When my kids were small and I was working part-time, the energy planning was SO hard. I never had...

Hello and welcome to another week at Humbly Courageous. I am so glad you are here! Today, I completed my 10th stem cell treatment. Many often ask me how it’s going. “Are the treatments helping?” I always say, “I think so?” I guess it depends on what one’s definition of “helping” is.  No, I’m not leaps and bounds better, and a ton stronger. Some days, I do question if they are really helping or not. I still have many difficult days, when it feels like the weakness is winning, and I’m a prisoner to its demands. However, when my husband sends me a graph of my progress in the pool, tracking my thrice-weekly pool running workouts, I can see with my own eyes that my exercise progress has stayed very steady. It’s even improved in the last few months since my last treatment. I rarely miss a workout for anything.  I also recently tackled “the big hill” just before I turned 50. I had a little doubt going into it, but I got it done! That seems telling. Just a few days ago I went golfing ...