Humbly Courageous

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 ...

Hello and welcome to another week at Humbly Courageous. I'm so glad you are here! Most of my life, I lived with a huge cloud of uncertainty hanging over me. Living with a disease that is nameless is a very heavy weight to carry. Not knowing, is hard. It's frustrating. It's hard to ignore. It's pressing. It creates a huge sense of urgency at all times. The stress of carrying that weight is enormous. Crushing. It's not like I had a handbook on how to handle all of that uncertainty. There was no one to tell me how long it would last, or how to handle the longevity of it. 44 years. It's a long time. Not knowing what was coming around the corner, provoked a lot of anxiety. I would say that it's scary especially as a child, but it's just as scary living with that as an adult. It didn't get easier.  Learning to live with that uncertainty while everything else around me was going on as normal, was isolating. I was chained to this uncertainty, its grip like a...

Hello and welcome to another week at Humbly Courageous. Thanks for stopping by! Something I’ve dealt with for as long as I can remember, as a lifelong disabled person, is being forced into categories that make me feel much older than I really am. This is in NO way a put down to older people. We are all headed toward our older days like it or not, and I see great value in learning from those who are older than us. Often, for certain activities or circumstances I would find myself among a much older group of people instead of among my similar age peers. At times, that has made me feel out of place, and like I’m 30 years older than I am.  Of all of my assistive devices, my cane makes me feel the oldest. I just picture myself as much older when I'm walking with it. It was my first assistive device that I used regularly. Occasionally, I find myself feeling sorry for myself. It feels unfair that I am fast tracked to an age category that I’m not in.  The thing that frustrates me the...

Dear Disability, Half a century. That’s how long I’ve been on this earth with you. That boggles my mind. I’m angry. I’m grateful. The childhood memories with you become more of a blur with each passing year. The bullying you invited in just by being you. The insecurities that slowly took root deep inside my bones. The wonderful friends who didn’t care about how you made me walk.  Sometimes, if I’m lucky, I have a flash of days gone by, and I’m transported to the moment. The sounds, the smells, the sense of comfort if it’s a good memory. Other days, I’m not so lucky. The anxiety, the trauma, also mixed with the sounds and smells that haunt me from the bad memories. Dare I say, no soul survives 50 years without some deep wounds from something. Mine is no different. Wounded, scarred, blessed, all because of you. You are good and awful all at once, making my head spin. You are a master at bringing out the very best in people, as well as the very worst. I’ve often wondered why each of m...

Hello. Welcome to another week at Humbly Courageous. Thanks for being here! Sometimes, we have days or even weeks of kindness that touch our lives. This was one of those weeks for me. I’ve just been overwhelmed with the love I’ve felt this week, and I’ve spread a little kindness here and there too.  My week started off at a doctor’s appointment that I usually dread because it involves all the things. My annual skin check. If you’ve had one you know what it involves. Maybe not a big deal to most, but for me, it’s a lot of physical effort undressing, then dressing again. I dread trying to get on the exam table etc. The nurse asked as she was taking me back if I have any trouble with the process. She must have read my mind.  I told her that I did. She took me into a room that was much more accessible. It  just made the whole experience so much easier for me. I made sure to tell her how much I appreciated knowing about that. I’ve been there multiple times and she’s the first ...

Hello! Welcome to another week at Humbly Courageous. I’m glad you are here. Living my life with a progressive muscle disease, I feel like I always need to be prepared for what may come next, concerning my physical wellbeing. I like to think steps ahead because for me, that is key to maintaining my independence.  Throughout my life, I’ve slowly added assistive devices here and there. First the cane, then the rolling walker for around the house, the scooter and most recently my custom wheelchair. My most used is my cane when I’m out and about alone, and can’t hold onto someone. I also use my custom wheelchair sometimes around the house when I am becoming fatigued, or need to get heavier things from one part of the house to another that I cannot walk and carry.  There are so many moving parts to any given day, and I like having options to help me be independent. My strength can vary quite a bit throughout the day. Some days, I’m considerably weaker than others, and that’s always ...