Putting too much value on independence

What I've learned after nine months in hospital

View from my hospital room in March

If you had asked me a year ago what I feared the most, I would’ve said a loss of my independence.

As a disabled person, I was encouraged from a young age to do things on my own, and I took an enormous amount of pride in that I could do virtually anything and everything independently.

As I got older, this was further reinforced by the people around me. I loved the reaction from random strangers when they asked who made my meals or helped walk the dogs.

“Oh, I do those things myself,” I would respond cheerfully and their eyes would go wide with astonishment.

Then, I broke my leg in March, and my world got turned completely upside down.

I couldn’t sit up at all for months and was utterly dependent on others for my most basic needs. Never mind making meals, I couldn’t feed myself. I couldn’t toilet myself. I couldn’t even adjust my pillow, and it would require two people to reposition me in the bed.

I hated it. More than that, I believed that not being able to do everything myself changed who I was and how others perceived me.

In truth, it did initially. I’d get asked by the healthcare aid who was spoon-feeding me my breakfast, “So, who feeds you at home?”

“I feed myself!” I’d respond indignantly.

Making wontons in February versus being fed on my back with in a bib in April

I’d then show them photos on my phone of my ‘old life’ where I not only fed myself but also made vegetarian wontons from scratch.

I knew I was ferociously defending this ideal, independent version of myself, but what else could I do? More than that, who would I be if I wasn’t able to return to the level of independence I had before?

I was living through my worst-case scenario.

Untying independence from self-worth

There is, of course, a flip side to living through what you previously believed would be the worst possible outcome.

You live through it.

As my leg has slowly and steadily healed, I have realized that it wasn’t my loss of independence that I feared. I worried that if I wasn’t independent, this would fundamentally change who I was as a person. I would no longer be “me.”

Still, even when I was being spoon-fed and requiring others to handle my toileting needs, I was also creating art, writing newsletters and grant applications, arranging marketing for my art exhibit, doing our income tax and so on. I might be undertaking these tasks differently. I might require someone to help me set up my laptop on the hospital tray table or recruit help to hang the paintings in my exhibit, but I still did all these things.

It wasn’t doing things independently that was the core of my identity. It was simply doing things—making, writing, creating—regardless of how long these things took or how much additional assistance was required from others.

By letting go of the notion that I had to do it all independently or the way that I had done things previously, I still accomplished every dream that I had for 2024.

The power of asking for help

While I still believe in doing as much as I can on my own, I now recognize that there are two instances when asking for help is both necessary and valuable.

• When it impacts my safety

• When it impacts my quality of life

Given my brittle bones, doing things safely is of utmost importance. If I fall while trying to reach something on a high shelf at the grocery store, is my independence worth the potential of months of recovery when I could have just asked a passerby for a moment of assistance?

Right now, we’re planning condo renovations for a roll-in shower. Previously, I was able to climb in and out of our low-sided bathtub by myself, but after my most recent injury, that’s no longer something I can do safely. The trade-off is that I likely won’t be able to shower without assistance. I’ll need Stefan or a home care assistant to roll me in on a shower chair.

Again, is it worth the risk of a serious injury and months of recovery versus getting the help I need to shower safely?

Getting assistance to improve quality of life is something fewer people think about, but it is of equal importance—particularly to one’s mental health. As our health changes as we age, we naturally cannot do as many things on our own. We can either lose access to those things and the joy that they provide, or we can find assistance to help us continue doing them.

Examples of what this might look like include:

• Getting help to put together new furniture.

• Travelling with a friend on public transit.

• Getting help with making meals, gardening, tidying and so on.

Perhaps you can still do these things by yourself, but will you actually do them if they have become slow, awkward or physically painful?

Will the garden that once brought you so much joy now bring you pain as you watch it wither a little more each year because you can’t do everything you could before?

Will you become more and more isolated because you don’t go out anymore due to increasing fears of travelling alone?

Not doing the thing we love has a significant impact. Sure, we can tell ourselves that we don’t need help to live our lives… but are we truly living?

Get in the habit of asking for help

One of the reasons that the loss of my independence this past spring felt like a worst-case scenario is that I wasn’t used to asking for help. I feared whether my helpers would handle me with the necessary care or would help as I wanted them to.

After over nine months in the hospital being handled by a veritable army of near strangers daily, I’ve learned that this is not as scary a prospect as I feared. Of course, there were individuals that I needed to quickly correct to ensure that they weren’t going to hurt me; however, with practice, I have gone from passive fearful patient to the general of my little army.

Even more surprising, I get praised for it.

Every time a new staff member is introduced to me, the nurses will often say with a smile, “Listen to Athena. She will tell you exactly what she needs and how it needs to be done,” and this alone has been a big vote of confidence.

My time in the hospital has given me an intensive level of practice in this kind of helper direction that few people get to experience, but I think the lesson here is that it does take practice.

Also, ideally, you don’t want to wait until a crisis moment when you start recruiting and working with your helper army. This means:

• figure that, regardless of the task, you may need help doing it down the line… so what would that look like?

• deliberately start building out a network of individuals—both paid and unpaid—who can help you.

• practice working with your helpers. Start with small tasks so that you can get a feel for how each other works and build on your successes.

• when directing someone, focus on how you want it to be done as opposed to what you don’t want them to do.

• be respectful and gracious to your helpers. They may not do what you ask exactly to the letter of how you would have done it, but it’s important to acknowledge how much that matters to you versus how valuable their help is to you.

You may encounter folks who are simply not a good fit for you as a helper, and that’s okay. If you feel like you’ve made a solid attempt and it just isn’t working, look for someone else. This is another reason why it’s important to recruit and practice before that crisis period. It gives you time to work out these snags while the stakes are still relatively low.

Final thoughts

My rehab in recent weeks has been going well, and we’re hopeful that I’ll be able to finally leave the hospital in January. Even though I have regained so much of my independence, I know that I am going to need help once I get out of here—much more so than I did before my injury.

While a part of me understandably mourns that loss of independence, I no longer fear it.

I know that asking for help doesn’t make me any less of myself than I was before.

Celebratory take-out and paint-by-numbers at the hospital in November

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Athena is currently on medical leave from creativity coaching with Tilted Windmills while she heals in hospital, but hopes to be back to coaching in 2025. You can read about her ongoing rehab journey in Athena’s Art Newsletter.

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