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

Holiday Hustle

Hello, welcome to the holiday edition of Humbly Courageous. I am glad you stopped by! This time of year is a time of many different mixed emotions for many. Some enjoy the holidays, and for some it's a very difficult season for many different reasons. Whatever you celebrate, chances are you are feeling a tad overwhelmed. Maybe it's buying gifts, trying to please everyone, or anxiety towards holiday get togethers with family/friends that you haven't seen in awhile. Social anxiety is real! Perhaps, the holidays are the most joyful time of the year for you, and you just wish the season would last longer. 

For me, I enjoy a lot of things about the holiday season. I absolutely adore the ambiance that the Christmas lights bring to my home. I really enjoy decorating for Christmas. However, this year it made me a little sad. I really noticed a difference in my ability to decorate on my own. Normally, my husband and I tag team the decorating. He likes to do the tree, and I do the other areas of the house. This year, I said to him, "can we just do it all together?" I wasn't feeling up to tackling my normal duties on my own. Another reminder that this progressive muscle disease sneakily steals things from me. The big picture is, that I am grateful for a husband who is willing and able to help me. The silver lining. Even our boys joined in on the tree decorating which was a nice surprise. Since hitting their teen years, they haven't really been into helping us decorate the tree like they did when they were little. So, that was also a lovely holiday memory, and one I would have missed out on if we were doing our separate things.


Don’t blink ❤️

I have always done a majority of the holiday gift buying throughout the years. I enjoy it. I like going to stores and picking things out for loved ones. There is something about being out and about during the holiday season. A different energy. This year, there has definitely been more online shopping, and I have also had to ask my husband if he would help get some of the gifts. 

Everyday, life with a disability is so physically exhausting. Our bodies are working overtime at all times just to exist, plus battling the normal woes that aging brings. The holiday season feels like that ramps up times 100. There are holiday parties, family get togethers and like I mentioned above the gift buying. The past couple of years, we have kicked off the holiday season by attending The Festival of Trees event, which is a charity dinner and auction to raise money for those in our community that need some extra help. We attend with some of our family, and it is a really fun time! Getting dressed up is always fun in my opinion. This year was the first year going in my new wheelchair, and I decided I wasn't going to let that hold me back from hitting the dance floor! Gotta keep moving forward, right?! My husband and I made the most of it and learned how to "dance" together in a new way. My sister documented our "first dance" on camera. I had THE best time! Then, my cousin took me on a joy ride running me through the lobby of the hotel where the event took place. Again, beaming and overjoyed, arms outstretched and wind in my face. A memory forever marked on my mind (even if some of the guests thought we were a bit crazy, ha!). We didn't let it stop us. 

This picture sums up my joy of the night!

As my disease progresses, I have to progress too. Otherwise, life will just leave me behind. If I want to keep living well, I have to keep adapting and moving forward. Changing at a speed that I never asked for. I have to be ok with asking for help in new areas. For me, that's the hardest thing. I value my independence so much. I have felt what it's like to have it taken away throughout my life after surgeries, or setbacks. It's a feeling that I despise, and quite honestly it terrifies me. I don't want to be on someone else's time schedule, I want to do things on my own. That is what makes me feel alive. I will fight for that until every last bit of me can't. But, I know I have to be smart about it and ask for help as I need it. The holiday season is certainly a time when we could all use a little extra help. It takes humble courage to ask for and accept help, but when we do, we are reminded of why community and connection are so important. We were never meant to do life all on our own, even if we want to. Small steps can sometimes lead to great relief and unexpected joys.

As our family celebrates the Christmas season, for us, it's a reminder of what is really important. The reason for the season. Whatever holiday you celebrate, I hope that you can find a sliver of joy, even on the hardest of days. I do believe there is always something to be grateful for, even if it's just the tiniest of things. Seek it out. I believe you will find it. 💚

For more on my story follow me on Instagram @ashinneman and check out my new column in The Hamilton County Reporter called "Disability in the City" 

https://readthereporter.com/DailyEdition/2023-12-14.pdf


Comments

Post a Comment

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, operati...
13 comments
Read more

In Luke’s words

Hello, welcome back to another week at Humbly Courageous. I am glad you are here! When my oldest son asked me to proofread his college essay a few years ago, I don’t think anything could have prepared me for what I would read. My biggest fear before having children, was that my life, my disability, would affect their lives in a negative way. I know what I endure as a disabled person on a regular basis, and for years I debated if I wanted to bring children into the world with me and potentially affect their lives in a bad way. After years of discussion with my husband, I finally felt like the decision was clear. I feel God put it on my heart, that He wanted me to have children. I felt that very strongly all of a sudden. As I went on the journey that Luke took me through in this essay, I felt many different emotions. I felt sad, mad, grateful, proud and so much more. I am sad/mad that the opinions and reactions of others caused us to miss out on these precious times with Luke. That part ...
Post a Comment
Read more

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 ...
9 comments
Read more