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In life, there are times we get forced into doing something we’d prefer not to do. However, sometimes what we perceive might not be a good idea could be the very thing that helps us overcome our fears. 

I have lived many years with spinal muscular atrophy (SMA), and every day reminds me how difficult it is to manage daily routines. When I’m outside of my home environment, routines can be a nightmare, a source of severe panic attacks, anxiety, and even sleep deprivation. And, compared to the average person, change is amplified in the life of someone living with a rare disease. Our bodies conform and become comfortable operating in a routine, with a routine schedule, and special equipment that isn’t easily transportable.

Meanwhile, removing ourselves outside years of building a system of safety and comfort can feel like a stranger moving to a foreign country. 


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For example, in September of this year, my parents brought to my attention they’d be taking a week’s trip to Italy. I immediately felt overwhelmed with anxiety, knowing the situation I’d be entering. However, at the same time, I was elated for my parents. They’ve sacrificed so much for me. They deserved this trip, so of course, I was willing to take a leap of faith. 

Read about care guidelines for SMA

The difference between this trip and the small getaways my parents took previously was that I’d be staying away from my home. In addition, I’m older, and my body is not as limber and forgiving as it was in prior years. 

I ended up staying with my cousin and her family, whom I adore. There was no question I’d be well cared for. The challenging part was being out of my own space. I understand that it’s natural for everyone to experience this to some degree, but for those of us who require special attention and specific care, the adjustments can be extra rough on our psyche and our bodies. 

Some of the adjustments included things like the temperature in the house. I’m used to having it pretty cool in the summer and pretty warm in the winter because it’s difficult for those of us with rare conditions to cool down or warm up. However, my cousin did her best to accommodate my needs, but it’s also difficult to step into someone’s territory besides my own, and expect them to change everything around on my behalf (even though they would in a heartbeat). 

I also struggled to use their toilet. Unfortunately, it was very low to the ground. Lastly, sleeping. It’s quite challenging getting comfortable in someone else’s bed, let alone trying to direct someone on how to get you comfortable in a space you’re not used to. 

It’s easy to start feeling like a burden in these situations because the needs appear to double when you’re in somebody else’s surroundings. I often want to shut down and not voice my needs on account of not wanting to feel like I’m “too much.” These are valid feelings but false truths. 

I can confidently say I came out of this experience feeling stronger and happy I was able to overcome the obstacles. And even though I had some uncharted territory to explore, I learned that I’m still capable of coming out of the journey in one safe and joyful piece.