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

Life's a Beach

Hello! Welcome back! Last week I had a much needed break from the daily grind. A vacation at the beach! It's been awhile since I've been on a beach vacation as we were all halted from our travel plans over the past year. Normally, as a family we try to get to the beach at least every other year, but sometimes we veer onto another path into the mountains, or a big city we've never seen. I like that my boys have seen a lot of different places in the country. Good memories exploring new places together over the years. 

My family and I have been going to the same beach in Florida for over 30 years now! It's a beautiful beach, and one that's certainly worth visiting over and over! Sometimes, it's a girls trip with my mom and sister, and several years it was with family and friends on spring break. Some of my best memories were made at this beach. This vacation was with my mom, dad, sister and my youngest son, Jack. I have to admit that I was a little nervous to travel without my husband. It's hard to part from someone who speaks your language. We really have this unspoken language of him knowing exactly what I need help with without me even asking. It's definitely one of my biggest comforts in life to have him around when I go on adventures, or places that are unfamiliar. Don't get me wrong, every single person who traveled with me also somewhat speaks this same language, and they are amazing at helping me. 

Sand walking!

They would never let on like it's extra work to travel with me, but it's just a fact. I can't lift my bags at the airport in and out of the car or off of the luggage belt. I have to have wheelchair assistance in airports if I don't bring my scooter because it's just too much walking. I can't carry my chair or bag out onto the beach, and if the rental I'm staying at doesn't have beach chairs high enough for me to get out of on my own, I need assistance standing etc. I try to lessen their load by doing things to help that I am able to do. I always like to be the driver on the vacations with them because that helps, and it's something I can do to contribute. I also help with clean up around the place, laundry, grocery shopping, calling in meals and going to pick them up. Those are all things I CAN do. 

The vacation crew!

When I arrive at a place, I immediately start scanning things. Seeing what will work for me and what won't. Things most people wouldn't give a second thought to. Beds.....they are always so high! It's really hard for me to get into a bed that's higher. For one, I'm 5'2, so that doesn't help haha! The tile floors at beach rentals get so slick when there is sand on them. So getting into bed, my feet slide out from under me which makes it harder. I had to move a chair into the bedroom from the kitchen because I have to have a place I can sit to get dressed. I can't just slip in and out of clothes or shoes standing. Shower....luckily this place had a walk in shower because tubs are really hard for me to step over to get in and out of. The walkway into the house had a lot of uneven pavers, so I had to be extra cautious not to trip. The same was true out by the pool. Speaking of the pool, I had to get creative as to how to get in and out as there was not a railing. Frustrating for sure, but I figured it out with some trial and error, and by the end of the trip I had mastered it. 

Adapting! 

The beach......ahhhhh the beautiful fluffy white sands at this gorgeous beach. Treacherous to walk in! No doubt I got an extreme leg workout everyday getting to my seat on the beach! My sister pointed out that it's hard for her to walk in too. It's just hard! However, I took my cane, and I'm pleased to say that while it was very difficult, I think I walked the best I have in a long time on the beach. I contribute that success to my stem cell treatments! The last time I was at a beach about two years ago, I used a beach wheelchair, so I would say this was definitely progress!
Last time on the beach I used this beach wheelchair 

My sister, mom and son took the brunt of hauling everything to the beach in our loaded beach cart plus some. My duty was to get myself safely to my seat. Once in my seat, I was pretty much at someone else's mercy if I needed to get up for the bathroom, or to turn my chair. I tried to let those around me relax, and just not drink too much water or be too needy, so they could enjoy their time. That is one thing I don't like about the beach. I feel somewhat trapped. Don't get me wrong, I adore the beach, but it also makes me very frustrated. Any person I went with would have been glad to help at any point, but the truth is that I somewhat feel guilty about asking because it's their vacation too. I was pretty content to sit and read, or just enjoy the scenery. 

Sunsets are the best!

One day we were there, I sat with tears in my eyes watching my son in the water. I wanted SO badly to be able to walk out there on my own and join him. Just me walking to my son. Even though I knew it couldn't happen that way, I closed my eyes and envisioned it. I wanted that for me, and for him so much. It takes a village to get me in and out of the ocean, but I always try to get in at least once because I love the water. Normally, I have my husband there to help. This time, my heroes were Jack and my sister. They got me safely in and out, and I only fell once! Honestly it's kind of funny when it happens, and I know I'm not alone. I do always feel like we are putting on quite a show for the beach. Hopefully when people see us they see someone trying their best, as well as human kindness from those helping me.

I just wanted to walk out to him by myself!

I'm blessed to be able to have gone on that beach trip with my family. We made a lot of great memories to last a lifetime. For those of us traveling with a disability, it does take humble courage to walk into the unknown, where you know you will constantly be working to figure things out to make them fit your needs. If  you are lucky enough to have travel companions like I do, it sure takes a lot of that stress away. Life is really a series of waves one after the other. Most of the time, it all works out in the end if you just have a little faith. Sometimes the waves come crashing in on us, and other times we just smoothly ride them up and down, up and down. Keep surfing those waves the best you can. Enjoy the ride while it lasts! 

Jack running into the sunset


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

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

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