Fight for it

I have been fighting to keep my independence most of my life. Always, waiting in the shadows, is the enemy, threatening to take my physical independences away. Even at an early age, my mom tells me I would fight for it. I was born with the fight inside of me.

Perhaps you find yourself in a situation where physical independence is dwindling. I feel that after 51 years, I have some advice to give about fighting like hell to keep the independences you have. This is as much of a pep talk for me as it is for the person reading this that may be battling this very thing.

Why do I need a pep talk after doing this my entire life? Because it is exhausting and daunting. It takes every ounce of willpower and energy you have each day.

It is a choice to an extent. There are of course things we cannot control. This is not about those types of losses. There are some things in life that no amount of willpower can overcome.

This is more to encourage you that there may be ways to keep some of your physical independences rather than relying on others. It can be so very frustrating to wait on someone else’s time schedule.

Get creative! There are so many things that I have learned to adapt throughout the years to be able to maintain a sense of independence. You would not believe some of the things around my home that I have altered in crazy ways to make them work for me. This is something that constantly needs tweaking, too, as my disease progresses.

Take time to celebrate and honor the independences you have rather than dwelling on the ones you do not have, or that are harder to come by. This is key. I have lived the opposite way, only focusing on what I could not do. That will swiftly eat you alive, trapping you in a dark place.

This is not an easy way to live by any means. It is sometimes a minute-by-minute choice. It is the hard road but is the most fulfilling road.

Fighting for and keeping some of my independence is empowering to me. Each victory is fuel for the next battle, gently nudging me to conquer the next challenge.

I get it; most reading this may not have had a lifelong physical battle, and you may be thinking, easy for you to say, you have had a lifetime of practice at this. You would be right. It has taken a lifetime to get to the point that I am at now, and even now I still need the pep talks to keep fighting.

I often play out different scenarios in my mind on which would be worse. Having abilities and then losing them or never knowing that it felt like to have them in the first place, while always left wondering what it would be like to feel strong. Each time, I realize that is an impossible question to answer. Both are hard in unique ways.

My husband and I had the opportunity to travel to a new place last week. Each time we do that, we are both starting from square one as we figure out our new routine in a place where I do not know what my independence will look like. Will there be stairs? Is the shower accessible? The list is long. We do as much research as we can beforehand, but it is not until we get there that we learn our new normal for the trip. Constantly adapting on the fly is part of traveling with a disability and keeping familiar independences as much as I possible.

Our columnist and her husband Jamie reached the top of Cadillac Mountain in Acadia National Park last week. (Photo provided by Amy Shinneman)

To our surprise, we realized that accessibility and independence exist on a mountain top!

Never stop looking or fighting for your independence. The reward of finding it is worth it every time.

Until next time …

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