Living Independently: The PCA Journey — Part Two

Our Beautiful Challenges — Marie W.O.W.C.P.

When I first started living on my own, it was at the very beginning of the COVID-19 pandemic.

Moving into my own apartment was already a huge step in my independence journey. But moving out during a pandemic made that experience very different from what I had imagined.

The world had shut down.

People weren’t coming and going the way they normally would, and I couldn’t have very many people coming into my apartment to help me.

You would think that living on my own during that time would have been one of the most challenging experiences of my life.

And yes, sometimes it was.

But something else happened during that time.

I discovered how capable I really was.

Learning Without a PCA

For about the first year and a half of living independently, I didn’t have the kind of PCA support I have today.

That meant I had to figure things out.

There were things that took me longer.

There were things I had to adapt.

There were probably moments when it would have been much easier to have another pair of hands.

But that experience taught me something I desperately needed to learn about myself.

My disability didn’t mean I was incapable.

For so much of my life, independence had been something I dreamed about.

Living alone gave me the opportunity to find out what independence actually meant for me.

I learned that I could problem-solve.

I could make decisions for myself.

I could create routines.

I could take care of my own apartment.

And when something was difficult, I could usually find another way to do it.

Those first months on my own gave me confidence that I don’t think I could have gained any other way.

Then the World Started Opening Again

About a year and a half after I moved out, the world slowly started opening back up.

That’s when it was time for me to think about getting some additional help.

Eventually, I applied for the PCA Waiver.

At first, part of me probably wondered whether getting more help would somehow take away from everything I had proven I could do.

But I eventually realized something important:

Accepting help didn’t erase everything I had accomplished.

It actually allowed me to build on it.

The Benefits of Having a PCA

Having a PCA can make an enormous difference in my everyday life.

There are things that are physically difficult for me because of my cerebral palsy. Having another person available to assist me means I don’t have to use all of my energy trying to prove that I can do every single thing myself.

That energy can go toward other things that matter to me.

My writing.

My health.

My community.

My relationships.

My advocacy.

And simply enjoying my life.

Having a PCA also provides companionship and support when I need it.

But one of the biggest benefits for me is that I am part of a program where I have a say in who helps me.

That is extremely important.

When someone is helping you with personal parts of your everyday life, trust matters.

I don’t want someone simply walking through my door because they were assigned to me.

I want people around me whom I trust, who understand me, and who recognize that even though I need assistance with certain things, this is still my life.

But There Were Benefits to Not Having One, Too

This might sound strange in a series about PCAs, but I am grateful for the time I spent without one.

Not because everything was easy.

It wasn’t.

I’m grateful because that period showed me what I could do.

If I had immediately had someone doing everything for me when I moved into my apartment, I might never have discovered some of the things I was capable of doing for myself.

Those first months forced me to try.

Sometimes I succeeded.

Sometimes I struggled.

Sometimes I had to find a completely different way.

But every time I figured something out, I gained a little more confidence.

That’s why I think there was value in both parts of my journey.

Living without a PCA taught me what I could do.

Having a PCA taught me that I didn’t have to do everything alone.

Independence Isn’t About Proving Something

As a person with a disability, I think it can be easy to feel like you constantly have to prove your independence.

You want people to see what you can do instead of immediately focusing on what you can’t.

I know I have felt that way.

But independence shouldn’t be about exhausting yourself just to prove a point.

There are things I can do independently.

There are things I can do with adaptations.

And there are things where having another person’s assistance makes my life easier, safer, or simply better.

None of those things make me less independent.

I’ve learned that independence isn’t measured by how little help you receive.

It’s measured by how much control you have over your own life.

Today, I know I am capable.

I also know I need help sometimes.

Both can be true.

And maybe that is one of the greatest lessons my journey toward independence has taught me:

I don’t have to choose between being independent and being supported.

I can be both.

✌️ 😊 💛

Seeing the beauty between the challenges.

— Marie W.O.W.C.P.