Skip to main content

About Me

My photo
Humbly Courageous
Hi, I’m Amy. I live life with a condition called Bethlem Myopathy which is a rare form of Muscular Dystrophy. I like to help others by showing how I live well with a debilitating condition. I was born with this disease, so it’s the only way I know life. I continue to work on embracing myself and using that to help others.

Followers

Identity Crisis

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” by my doctors, well into my adult years. I’ve been struggling to figure out why this life change with my kids growing up has hit me so hard. I haven’t felt myself, and just have been feeling so sad and unsettled. I know that is not uncommon for many mothers to feel this way. Our identities get so intertwined with our children that we can forget in large part who we are. We can forget what used to make us tick before all the responsibilities that come with parenthood.

When I became a mom at 29, I was still “unidentified”, but suddenly I did have an identity and my “identity crisis” didn’t seem quite as glaring. Don’t get me wrong, I still very much wanted to know what caused my physical struggles, but it just was slightly less pressing. I was a mother. I had a place and a real name to call myself. I was no longer Amy who was unidentified. I became Amy, a mom. 

I’m well aware that motherhood doesn’t end when our children become more independent. They still need their parents to help them navigate life somewhat, but I know from experience with my oldest son, once they start driving, things certainly shift. 

If you’ve been following my blog for some time you know that I talk about how when I was diagnosed at 44, I felt like I was finally, formally introduced to myself, and I was able to move out of that chronic identity crisis cycle that I was stuck in. In a sense it was like a “rebirth “. I don’t mean that on some deep level, I just use that word as an illustration for what that moment felt like for me when I received that phone call with my genetic tests results. The world became a whole lot brighter for me that day, even though I was diagnosed with a slowly progressive, degenerative muscle disease. I had a lot of aquatinting to do with myself. 


In a way, I feel like I’m at that same kind of crossroads now that my boys are needing me less, at least in a daily sense of care. I need to get back to doing the things I love more often. This past weekend I picked up my paint brushes again and I was immediately calmer. That’s how you know you’ve found your passion, when things calm you or motivate you. Before my husband and I had kids, we made a list of all the things we enjoyed doing together, so that one day, we could look back on those things when the time came to shift our focus. I imagine when we pull that out sometime soon we will laugh at a few of those things, but also maybe we will remember some of those things that sparked joy for us. 

For the next two years while we still have our youngest at home, I will soak in those moments we do get with him and try to appreciate the changing tide of our relationship. It’s kind of fun to watch your children come into who they were created to be. Scary sometimes, but exciting too. It takes humble courage to move out of a space that you once devoted your whole being to, but when we step out of that space, we step back into living out our purpose for life too. 💚




Comments

Popular posts from this blog

Dear Muscular Dystrophy

A letter to Muscular Dystrophy on the eve of my 49th birthday. This has been a lifelong journey…. Dear Muscular Dystrophy, At times you dazzle me, showing me the heights of human love and kindness, and at other times you take me to the deepest, darkest parts of my soul. I have silently pleaded, please just let this end. I don’t want to do this anymore. I’d like to say that was a one-time thought, but you’ve made it impossible to tell that as a truth.  I want to love you because you are a part of me, but you make it so hard at times. You feel like a best friend when I achieve feats that seem impossible due to my physical weakness, but also you feel like my worst enemy living inside of my body when you fail me, and I’m once again lying on the floor. You robbed me of big chunks of childhood joy, while I sat in silent envy of my friends, as I watched them effortlessly turn cartwheels, run and jump.  You are stuck to me like glue during the countless hours in waiting rooms, operating rooms

Deep Breath

Hello and welcome back, or if you are new here welcome!…..Deep breath this week, as we are diving into the emotional trauma of 47 years disabled… here we go with just a few examples. Sharing these are really hard for me, but I think it’s important to share because these things are not uncommon for those who are disabled. Some I’ve shared before, some I haven’t.  “Yeah, from the look of your profile picture you really look disabled 😂” There is SO much I could say to this. What does that mean? Am I supposed to look a certain way as a disabled woman? Please, enlighten me. I’m all ears.  Or how about the folks that left me on the floor of a bar/restaurant because they assumed I was drunk because I fell as I was exiting because the door swung the opposite of what I was expecting, so easily throwing me off balance. Had not had a drop to drink. Left me there, staring at me as if I was a zoo exhibit.  Even the manager came by and told me to move because I was letting all of the cold air escap

A Hateful Encounter

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