A man thoughtfully observes two imaginary paths circling around him, in one he is alone in his powered wheelchair slowly moving uphill, in the other he is much farther down an even straight path and is being led by another person who helpfully points in the right direction

What is Your Definition of Independence?

Living with a disability can make us stubborn in our ways. I know for me it’s the inability to control what my body can do.

I think what we lack in physical strength, we make up for with our mental toughness. This mental toughness can lead to stubbornness. Does this come at a price?

I’m someone who is very private and never really likes discussing what I couldn’t do. It’s a pride issue, but our pride can interfere with our judgment at a certain point. Maybe this is something you can relate to?

Stress around trying to remain independent

A few years ago, I met an older gentleman whose name escapes me. He was in his late 60s and also had SMA type 3. We talked a lot about not giving up.

He gave me some advice that sometimes pushing yourself to remain independent can cause extra stress for you and your loved ones or caretakers. I pushed him on this because I disagreed.

He said he was a lot like me when he was my age. Like me, he also resisted asking for help and wanted to do everything by himself.

Loss of independence due to SMA

We were similar because we both went from being fully independent to losing our strength and independence. When this happens, it can be an upsetting and frustrating time. I struggled with this and I know my family did too.

Over the last 10 plus years, spinal muscular atrophy slowly chipped away at my independence. I wasn’t ready to let others help me. My stubbornness to hold on to my independence caused a lot of anguish.

My morning routine of shaving, showering, and dressing went from 30 to 40 minutes to almost an hour and a half. I would then be exhausted and would need to rest before trying to drive. I also started to have trouble transferring myself from my scooter to the driver’s seat in my van. This also added additional time.

Not ready for assistance from others

I could go down the list but I think you are getting the gist of what I am trying to convey. All of my routines were becoming harder to do on my own. This cost me time and energy to fully enjoy other aspects of my life.

I understand that no one is ever really ready to let others assist us. However, as I look back, I realize that I only ended up denying myself opportunities.

That’s my warning to the younger readers. Don’t let pride and your stubbornness get in your way of asking for more assistance.

What does independence mean to you?

I struggled with the older gentleman’s advice. I never thought I would need the level of assistance that I currently require. I do believe we all have our own definition of independence.

Start asking yourself what the word independence means to you. Start asking yourself what you want to do with your life. Then figure out what kind of assistance you’re going to need to get there.

None of this is ever easy. However, I do believe when you start being honest with yourself and make these decisions on your own, you’ll be able to accept it a little easier. It can be a scary process but don’t ever give up!

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