Living with Limitations

What would life be like without any medical obstacles, serious physical limitations, or extra accommodations?

I’d live independently. I wouldn’t need help with everyday tasks. I’d be able to easily maintain college classes or work a full-time job. I’d go on unplanned road trips across the United States with my friends. I would travel the world.

My best friend is currently studying and working in Europe for a semester. It’s wonderful seeing her so content, enjoying each day and figuring things out for herself. I love looking through her photos from her travels and hearing about what she’s planning next.

We’ve been keeping in touch by texting, but at times it does make me feel somewhat sad — it’s taken me awhile to pinpoint exactly why I’ve felt this way. These challenging emotions are very personal and relate more to my own life and my body’s restrictions than anything else.

I’ll never know a world fully without FOP and its effects. The progression of this disease has completely changed the course of my life. Limited mobility prevents me from moving freely and I’m constantly dependent on other people. There are many things that are physically impossible for me, and some I have to avoid doing so I don’t overexert myself.

It’s easy to find myself daydreaming about a more adventurous life where I wouldn’t need to be so cautious and aware of my limitations — my body is the only thing holding me back.

However, my somewhat more limited life is still incredibly exciting and fulfilling. I have ambitions, goals, and dreams that might even surprise some people. I love traveling to new places by myself and planning adventures with friends. If I want to experience something, I try to figure out how to make it happen.

It may seem like a freer lifestyle would simply be easier, but it’s not what I’m used to. I’ve become accustomed to this body, restrictions and all. Even though the progression of my disease has made many things unrealistic for me, I wouldn’t change anything about my circumstances. I’m happy with the direction my life is headed, and I’m equally happy to be able to support my best friend in her own amazing endeavors.

San Diego, California, USA (November 2016)

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9 Comments on "Living with Limitations"

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Renee Drew

Hi Jasmin! My name is Renee. I was diagnosed with Multiple Sclerosis in 1991. it has progressed, and I now using a wheel chair to get round. I can relate to having a “new normal.” My life with MS could be a lot better, but could also be a heckuva lot worse. I admire your positive attitude, as well as your determination to just “make [things] happen.”


From Brasil / Brazil. Oh, u are so pretty ! God bless you. Your spirit shares hope.

Michele Haptonstahl

You are so beautiful, Jasmin.


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