Not What I Expected

Hello, welcome! I’m glad you stopped by. Last week, I found myself in an a situation that I wasn’t expecting at all. It was something that I had been dreading for a very long time. The thought of it was something that terrified me, and I felt like whenever it happened, I would have failed, given up. Like it would somehow be my fault. Like I had failed me and everyone in my life. When it finally happened, it wasn’t at all what I had envisioned for so many years.

I remember when we built our home 20 years ago. My husband made sure to work with our builder to make our house wheelchair accessible. I remember thinking at the time, “oh that’s great, but I don’t see me needing those accommodations unless I have a surgery or something”, which is when I had needed a wheelchair in the past. As each year ticked by though, I found myself thinking of that as more of a reality. That’s how muscular dystrophy works, it just takes and takes showing no mercy. It’s selfish like that. Some types progress more slowly like mine, while other forms of MD are much more aggressive with a rapid decline. 

The machine behind me is one I’ve done therapy on in the past, it helped me to feel what it’s like to walk “normally”

Me a few years ago on that machine, it was awesome!

I thought I was going to a PT appointment to work through a back issue I’m having due to my atrophied muscles in my lower back. I had mentioned to my functional medicine doctor a while back that I was having lower back issues, and I also casually mentioned that I’d like to have a different type of assistive device other than my scooter for around the house. I want to be able to use the function in my arms that I do have. She suggested that I may want to meet with someone who could show me a few types of wheelchairs. I had called and left a message for that company, but that’s as far I I got with it, or so I thought. 

When I arrived at what I thought was my PT appointment, the therapist came out to walk me back, where waiting for me was a man and two different types of wheelchairs. Turns out the therapist was an OT,  not a PT, and the man was from the company that makes the custom fit wheelchairs. I didn’t tell them about my mistake on what the appointment was. They were so kind and knowledgeable, and somehow it just felt right. It felt right that I was there on my own. I surprisingly felt at peace. I want people like that to understand how independent I am in my life, and want to continue to be as much as I can. They were patient and answered all of my questions, and they understood why I wanted to be able to continue to use my arms to push myself when possible. I got to sit in the chairs and try them out and we made several adjustments to the one I ultimately picked, such as a higher back to support my curved lower spine. I even got to pick the color of it, which turns out is a very difficult decision! I honestly didn’t even know things like this were out there to help me. Seems crazy that I’ve lived my whole life with MD, and my knowledge on these things is definitely limited, but I’m learning as I go. 

I think what I’ve come to realize is that getting a wheelchair or a scooter or using a cane more isn’t a failure in any way. It’s accepting reality as it is, it’s keeping me safer, preserving my precious energy and ultimately providing me more freedom and opportunities than I would have without these things. It’s a whole new world, and honestly I’m excited about it. When I met my mom and sister for my birthday lunch after my appointment, I excitedly told them about my experience, and they too were excited because it means we can go more places together and do more things. My scooter is much too heavy for them to lift, so this will be a better option because it comes apart and is so much lighter. I know my friends will be on board too! 

My goal of continuing to walk as much as I can hasn’t changed, and I’m still receiving my stem cell treatments to try and keep things as slowly progressive as possible, while also continuing to exercise regularly. I’m proud of myself for humbly courageously accepting this available help, and I’m excited for the adventures that await me in my new wheels. I’m glad that my appointment was a pleasant surprise. Sometimes, life’s best moments come in the form of surprises and aren’t what we expect. I can’t wait to show you my new wheels when they are complete in a few months, assuming all goes well with a little thing called insurance, as these wheelchairs are quite expensive. Wish me luck! 💚