Deciphering independence

One of the hardest things that I deal with as a disabled person is finding a balance between maximizing my independence verses managing my energy stores well.

To be honest, I stink at this. I am aware of it, and it is something that I strive to do better. I would say, I am much better about it than I used to be; most days anyway.

Often, others will step in when they see me struggling with something, as is human nature. We step in when we see someone struggling and offer a helping hand. Here, let me do that for you. For many, that is an infrequent occurrence.

For some, like me, it happens multiple times a day. The reality is that sometimes I do want or need help, and I am not voicing that as often as I should. However, sometimes, I want to complete the task myself, and it can be hard for others to watch because something that is easy for them, may be difficult for me.

Typically, I wait until my frustration has hit the max and end up yelling, “I need help!” Frustrated that I could not do the task on my own, and feeling like a failure for not being able to do trivial things some days.

For those losing their independence, it is common for grief, anger, and frustration to set in.

I have learned that even if I lose independence for a particular task, it does not always mean it is forever. It may be days or weeks before I can do that task on my own again, but eventually it may be within reach again.

Some independences are lost forever. When the big things are stripped away, like walking, it can feel like free falling into a black hole as you scream, but no one can help.

All of us, if we live long enough, are going to lose independences. It is tough to do that gracefully and willingly.

For a while, you will choose to fight for it, and demand that others let you try on your own before stepping in. Eventually, our spirits and energy will wear thin, and we wave the white flag.

Losing independence should feel like completion of a job you once had that you have retired from. A gratitude for ever being able to do said thing. Instead, it can feel more like a harsh punishment.

I have not done my “big hill” challenge at MacGregor Park in a couple of years. That was something I liked to do once or twice a year. I loved the feeling of the rush of adrenaline as I got ready to climb the big hill. The terror of not knowing if I could make it to the top on my own, pushed me to that big tree at the top. What a feeling when I finally touched that tree! I have missed it but have not even been up to it.

I was craving a difficult challenge. I needed to feel a win from doing something that would push me beyond what I am typically capable of doing physically. It has been too long.

When my son brought in a new bookshelf I had ordered, I watched him struggle to get the huge box inside. I could tell it was heavy.

My husband was out of town. My wheels began to turn. Could I build this bookshelf on my own? I felt that rush of adrenaline from the thought of putting that together on my own. Am I crazy? I thought. Immediately, I silently answered yes.

I took all the parts out of the box that I had him set on our couch and ottoman, which I decided would be my construction zone. I knew I could sit in my wheelchair and easily transfer back and forth to work on it.

The doubts crept in as I took each piece out along with a thick instruction booklet, giant package of screws, bolts, etc. I pushed the doubts away and declared confidence over my decision.

My son, who was leaving for the day, saw me beginning to work on getting things set up. He begged me to wait until someone could help me.

When he got home, seven hours later, I was putting the final decoration on my completed bookshelf. He was in disbelief. “How did you do that? How did you move that? Dad is going to be so mad at you!”

I smiled and said, “It was just something I needed to do.”

To be clear, this was not to prove anything to anyone but myself.

It was one of the hardest things I have ever done, yet I went into it with a determination to conquer another “big hill” and take in the sweet victory of correctly deciphering my independence.

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. She is the recipient of The Reporter’s Winter 2025 Ink-Stained Wretch award. You can find her blog at humblycourageous.org and reach her on Instagram @ashinneman.