Trapped to free: part 1

The time has come and gone for our last school spring break trip. Senior year for my youngest is flying by.

We collectively decided to visit Colorado again. We went there six years ago and stayed in the most charming house in the mountains. We all agreed it would be fun to go back and create some new memories. Our college-aged son was even able to join us for a couple of days, which made it all the sweeter.

A top priority of my younger son and husband while we were there was to run some very challenging trails. That they did almost every day we were there. A runner’s dream. The scenery is just so breathtaking everywhere you look. It is so vast, an instant reminder of just how small our bubble really is.

The place we were staying was at an elevation of about 9,000 feet. For us Indiana folks, we felt it! For me, it was especially difficult. Due to my Muscular Dystrophy, I had trouble regulating my body temperature the first few days there. That first night was grueling. I also felt so much weaker, which on top of my already profound weakness. I was reminded just how fragile my independence is. Even the smallest task felt monumental to me there.

Away from home, everything is different. At home, I have my steps counted, furniture memorized for grabbing onto to steady myself or take a break, rugs to be cautious of, bumps in the flooring etc. At the new place, I had to relearn all of that. It takes awhile to get used to new flooring, bed height, steps into the house, showers, you name it, I have to give it some thought to function. A new place feels very disorienting to me. Since we had visited this house before, I had a slight advantage, but it had been a while, and my physical abilities have changed since then.

While I enjoy traveling, I have to admit that it is becoming more exhausting and less appealing the more my disease progresses. I do not want to feel that way, but it is the truth. It is a lot. It takes away from the relaxed enjoyment when having to do all these new assessments. It has been a sad realization, but I am grateful for a family that supports me when I do decide to travel. We are all learning this together. We have to be patient as we figure this out.

Not only is it hard on me, but it also involves my husband taking on new responsibilities, too. He is typically the one who is physically helping me. It is an adjustment for us both. There can be frustration in the beginning for sure. Mostly, that is due to my lack of communication. Plus, the fact that I have not figured out exactly what I need, or how to voice those needs to him.

There are things such as getting inside the house, getting dressed, walking to the car to leave, getting in and out of a different car, more help in the kitchen or shower. It all depends on what is similar to home, if anything.

I felt trapped. I’ve created an independence here that didn’t exist there. It creates a sense of panic because it’s a lot coming at me at once. I was overwhelmed.

The guilt I feel for placing extra burden on my family is immense. Heavy. Crushing.

To be clear, it isn’t guilt because of their reaction. They are more than willing to help, but that feeling comes from me. I hate the feeling of taking away from someone else’s good time because of my basic needs. Yet I have no choice.

It took me a few days to get into my groove there and adjust to the altitude change. On about day four of six, I was able to do some of the things on my own, or with less assistance.

While we were visiting, it turns out I got to meet a woman who I have admired for a long time, who also lives with a disability. She has been part of how I have modeled my own life these past few years. She was holding an event about an hour from where we were staying. I could not believe that I got to go and meet her in person. It felt like a divine intervention, and just what I needed to pull me out of my funk that I was in. It was a kickstart to finishing off my vacation on a high note.

Things began to turn around after that and I had some pretty awesome opportunities that I won’t soon forget.

Until next time …

Amy Shinneman is a former National Ambassador for the Muscular Dystrophy Association, disability blogger, wife, and mom of two boys. You can find her blog at humblycourageous.com and reach her on Instagram @ashinneman.