Humbly Courageous

Dear Identity, I long to know you, to get comfortable with who you, are but you are ever changing, escaping from me just as I start to sync with you.  Most of my life spent in an identity crisis, I longed to see you in focus. Instead, you were blurry, unrecognizable. Who even was I? I didn’t really know.  You escaped me like a master thief most of my life. I pleaded to get a glimpse of you for forty-four, excruciatingly long years. At each doctor’s appointment, an answer carrot recklessly dangled. The anticipation built. Each time, a new hope was born. I wondered, would I finally see you out from the shadows where you comfortably lived? Slippery, elusive I chased you with the ferocity of a raging addict trying to secure their next fix.  I needed you. I didn’t understand why you didn’t need me. I needed to know you to know me. That’s the way this life thing works. Everyone around me was figuring their lives out. Making plans for their futures.  I tried too, but I felt...

Hello and welcome to a new week at Humbly Courageous. I am so glad you are here.  Every day when I wake up, it’s like I am waking up to the enemy within. I instantly know, I will again be in for a day of fighting for my physical well being and safety. This is how it’s been for my entire existence. Some days the thought is, ok, let’s do this! Other days its, here we go again, this is going to be a long day. Perhaps most of us feel that way for one reason or another, depending on our life circumstances. It’s not a feeling reserved for the disabled, that is just my perspective as ONE disabled person.  Sometimes, it feels as though it’s a stranger living inside my body wreaking havoc. After 50 years, it’s definitely worn out its welcome here. But, as we all know, some things are simply out of our control. Other days, I can settle in, and look for what my disability is teaching me in this life. I promise, there are some really valuable life lessons living in a disabled body. Truly...

Hello and welcome back to another week at Humbly Courageous. I am so glad you are here.  Recently, my family and I traveled to Colorado for our youngest son’s last school spring break. Senior year is going by way too fast. I wish I had the ability to slow down time. Don’t we all?!  We have visited Colorado as a family a few times. It is one of our favorite places. The beauty is astounding, and my husband and sons love the running challenges Colorado brings with the higher altitudes. We all agreed, it would be a great bookend to our years of spring breaks, some more adventurous than others. We were even able to stay at the same home we stayed at six years ago.  My first few days in Colorado were rough, physically speaking. Traveling, in general, is so hard on my body. Adding in all the new things that I have to figure out, can be quite overwhelming. The altitude change got the best of me. Our house was at an elevation of about 9,000 feet. For this Indiana girl, that was qu...

Hello and welcome to another week at Humbly Courageous. I am so glad you are here. “If my life were a book and I were the author, how would I want this story to go?” ~ Amy Purdy Several years ago, my sister suggested I listen to Amy Purdy’s interview with Oprah on Super Soul Sunday. After listening, I was intrigued. Then I listened to Amy’s TED talk. I was hooked on her positive outlook towards her disability. I since have listened to several other interviews she has done, read her book “On My Own Two Feet”, and watched in awe when she danced on Dancing With the Stars and was runner up, dancing on two prosthetic legs. Amy was one of my biggest inspirations to live my life to the fullest once I was finally diagnosed. Amy is an accomplished motivational speaker, and award winning adaptive athlete and two-time Paralympic medalist. Amy continues to motivate and inspire many all over the world because she is willing to openly share her story. In her TED talk, she says her legs haven't d...

Hello and welcome to humbly courageous! I’m glad you are here. Most of my readers wouldn’t know this about me, but those who have spent any amount of time with me know I am known to do some really awkward things. Awkward and hilarious, after it’s all said and done.  Seriously, I could write a handbook on how to be awkward. My first memory of a horribly awkward moment was when I was in the 3rd grade. I had been chosen as line leader for the day. After a class bathroom break, I proudly made my way to the front of the line to lead my peers. I heard giggles behind me, which usually meant someone was making fun of my walk, but that day it wasn’t about that at all. I had tucked my dress into the back of my shorts (thank goodness my mom made me wear shorts under my dresses, thanks mom!). Today, I can laugh as I remember that scene. It shouldn’t have come as a surprise to me that yesterday was yet another awkward moment for the books. Honestly, it was very timely comedic relief. I was feel...

Hello and welcome to Humbly Courageous! I am glad you are here. Today I had my 12th SVF stem cell infusion. It’s hard to believe that I’m on #12! I started this process about 4 years ago.  Of course, people often ask, “do you think it’s helping?” Seems like a simple question, but it’s really not. It’s something I go back and forth on in my mind. I usually land on the answer of, I’ll probably never know exactly how much it’s helped me. It’s hard to measure small changes that aren’t visible on the outside. As I’ve said in previous posts about these infusions, I didn’t go into this thinking it would cure me or drastically change anything. Even the smallest changes matter so much when fighting a muscle wasting disease. Any change for the better is obviously welcome. Here’s what I’ve noticed in the last 4 months after treatment #11… The biggest thing I’ve noticed is that after a hard day, where I’ve overexerted myself, it normally takes me several days to recover or bounce back. I have ...